Paddling on Dialysis for Kidney Health

The Shortcut

2012-01-19T10:11:00.000-08:00

The Shortcut

January 17, 2012

I came close to unraveling the mystery of frog jam yesterday. A conundrum that had stuck in my craw, to use the southern vernacular as is apropos, since March of last year. We were heading to Florida to visit my father who had taken ill and was in dire straights at Flagler Hospital. We started early that morning in Lexington, Kentucky, having driven from East Lansing the day before, and were determined to get to our destination before the day ended. It was early evening and we still had some daylight left. Ignoring the better sense of Andria, I opted to take a shortcut off of I-75 across Georgia to the coast since our destination was St. Augustine in northern Florida, south of Jacksonville. At Macon, I took I-16 east toward Savannah. I had our trusted navigation system so from a mileage perspective I knew my decisions were firm.

When we arrived at the junction of US-1, instead of continuing on to Savannah I steered our Highlander south toward Vidalia. Andria as is routine, seriously questioned this move. I pointed to the map displayed on the navigation system and suggested she not worry since the closest distance between two points was a straight line. She cocked her brow silently telling me not to patronize her. I assured her that the four lane highway that we were now on would be just as fast as the six lane freeway we had recently left. Plus, I told her this way we could identify points of interest to the kids like we did a year ago when we got off I-75 to have a bite of fried green tomatoes at the Whistle Stop Café in Juliette. She kindly reminded me that was only twenty minutes out of the way and we were using a meticulously written travel guide which the publisher promised to be foolproof. On this day we had no such guide.

As we arrived at Vidalia I cheerfully told the kids that this was where they grew the onions with which I loved to cook. “Wow, dad,” was their sardonic response.

Shortly after leaving the sweet onion capital, US-1 narrowed to a two lane roadway. As this was a total surprise to me, it didn’t seem so to be to Andria who had been disturbingly quiet since we turned off I-75. Again, I assured her that we would still be able to keep our speed around 60-65 mph as long as we didn’t have many traffic lights to slow us down. After about forty-five minutes of driving and many stop signs, we came upon Baxely, GA. Here things went south, as it were, quickly for driver and passengers. It was past dinner time and once again I had not “planned appropriately,” for the wellbeing of my family. The hunter’s sausages and Flaming Hot Cheetos picked up the last time we stopped for gas had long run out. The kid’s sugar high from the purple bug juice I wasn’t suppose to buy was exhausted and the crash was tremendous. Andria was out of Diet Coke. The kids’ crankiness meter exceeded seventy-five percent. The missis’ “I told you so meter” had already topped one hundred percent miles earlier.

Andria was now emphatic about finding I-75 and returning to our predetermined course. I relented and confessed the errors of my ways seeking the forgiveness I knew would not come until tomorrow and then only if I successfully finished our day in St. Augustine. My finger reached for the button to shrink the map view but was quickly swatted away along with a “keep your eyes on the road, Erich” where “Erich” sounded a lot like “moron” to my ears. As the lines out of Baxely came into view it was evident that there was no good route back to I-75. First we would have to travel northwest and then turn south to head to the freeway which was close to two hours away. Once we were on I-75 and through Georgia, we would still have a two hour trip eastward on I-10 to get to the Atlantic coast.

In an attempt to regain my tenuous authority of the situation, I calmly suggested that it would seem to make a lot of sense if we took US-341 to the east to I-95 at Brunswick. Then, triumphantly I said that it would be a mere two hours and we would be at our hotel on St. Augustine Beach. I emphasized beach in an effort to lighten the mood. “What about food?” was her response, and again I sensed the question dangle with some unsaid expletive. I pointed to the map and said, “I’m sure we can get some at Surrency or Odum.” She eyed me dubiously.

As we made the turn east a trace of doubt crossed my mind. I couldn’t help but wonder why the name US-1 sounded so familiar. A quick look back at the map showed the highway going west and south away from the coast. Surely, it would be shorter to take US 341?

After Vidalia I was hard pressed to identify any points of interest to my children. It was close to dark now and the only thing we seemed to see with some regularity were rebel flags. The “Stars and Bars” seemed to be everywhere. They were on the porches of the modest one story houses on the road side. They were also on the jacked up four by four pickup trucks that rumbled past us regardless of traffic on the northbound lane. Andria now seemed completely uncomfortable. My reminding her that it was still America and that Jim Crow laws had been banished for decades did nothing to soothe her concern for our two African American children sitting in the backseat, eyes glued to Spider-Man on the DVD player. Despite the distraction I could see that they were not happy being immersed in total blackness seemingly miles from civilization.

It was dark and we seemed to be alone on the road. With some consistency my headlights illuminated small white signs. “Gator Jerky,” the two foot by two foot sign hugging the road read. I swore the next one read “Possum Pie” but it was blurred and I wasn’t sure. Then another sign was lighted, “Frog Jam,” it read which sent my imagination flying. “What part of the frog do they make the jam from?” I wondered. Do they puree the entire frog and then add some pectin for firmness or do they only use the brain or liver? As I contemplated the frog jam, Andria upon reading the signs said, “Erich this is not good, get us out of here.” She then reminded me that the kids were not going to eat until 9:00 with a “Harumph,” for exclamation.

“It is creepy out here, Dad,” a voice from the backseat said. Despite having headphones on, it seems Jacob always has an ear cocked to the front seat conversation. “I’m hungry,” he said with finality. “I want chicken nuggets,” responds Antonia, her eyes intently watching the web slinger’s next move.

As it turned out of the tiny towns of Surrency, population – 237 and Odum – population – 414, only Odum had restaurants. While I thought the Blue Jay had potential for some good southern cooking, I knew my family was no longer in an adventurous mood so I bet the house on Jessup and kept heading east.

As we continued on in quiet darkness my mind began to roam. What if some good ole boys decided to have some fun? What if they blocked our way forcing us down a desolate two track leading deep into some unseen swamp? How am I going to protect my family – disarm the rednecks with my Midwestern ranch dressing agreeableness? “I see your point sir,” I’d say. “My car is an import from Japan, but according to a sign in the dealership, apparently, and this was a total surprise to me, Toyota employs more American’s than GM, that is if you take into consideration the dealerships and suppliers.” “What? Get out of the car or you’ll do what?” “Of course, perhaps our discussion would be better if I were standing directly in front of you. You know, man to man.” “Oh I see, I’m not a man, I’m crawdad riding, Yankee gator bait.” “Yes, I understand. How does that work exactly? Do you put a saddle on the crayfish?” “This has been great fun, but, I have to graciously decline your generous offer you see, I have to get some food for the family, they are starving.” “Get out now or you’ll feed them my what?”

If that didn’t work, perhaps I could physically overpower them. But, having been on dialysis now for twelve years I no longer have the strength I once had, as if that would ever have sufficed in such a situation. I damned myself for being a pacifist and having never owned a gun. I wished desperately that my bumper sported an “I heart guns,” or “If you can read this you’re in range,” sticker. It is amazing how one’s mine can wonder when receiving the icy, “you’re an idiot,” cold shoulder. What if she is right? I thought. How could I do this to my family? I always thought Andria’s use of the term idiot was as a goofy term of endearment like when Christopher Robin says, “Silly ole bear,” after Pooh gets stuck in the hole to Rabbit’s house. What if she really means it? What if I truly am an idiot?

Then, there it was, a white sign with green trees bordering a black roadway, “Jessup – A GA City of Excellence.” Hallalujah, I thought. I just knew it couldn’t be true. I was no idiot. Now, please have a restaurant I prayed.

The next thing I saw was a Dominoes Pizza. This had to be a good sign, I thought as we headed two more blocks to what looked like the center of town. Then there it was, a Wendy’s. I hoped now my stock would start to rise, but all that I got from the passenger seat was, “You’re lucky.” God bless the kids, they emerged from their DVD induced travel trance with sheer enthusiasm for hamburgers and chicken nuggets. I thought I may have even heard a “Thanks, Dad,” but then I realized that was me whispering to myself.

As we head out of Jessup the street lights ceased and again the road turned dark. But the air had changed. It was now heavier and slightly salty. We were on our way to the coast and nothing was going to stop me now. The kids were fed. The Diet Coke was replenished. And soon we’d hear the ocean surf. It was a little after nine and if I didn’t take anymore boneheaded shortcuts we’d be in St. Augustine before midnight.

It seems I had forgotten that the coast of Georgia is concave to the ocean, tapering westward as one drives south along the coast to Florida. But, the traffic was light and we made good time. As we took 9A around the eastern edge of Jacksonville I was tempted to take US-90 out to Jacksonville Beach and then follow the famed A1A down through Vilano and into St. Augustine. But, somewhere deep inside my brain the gears whirled and I realized the ocean would not be seen this late at night and the family wouldn’t stand for another delay. So we followed 9A toward Greenland and the I-95 interchange. As we continued on, to my disbelief I saw a “US-1 Interchange in five miles” sign. Could this be the same US-1 we saw in Baxely? I wondered. Andria was checking Facebook on her handheld and I was relieved that she hadn’t seen the sign. Just for a moment I wondered if taking US-1 from Baxely would have been shorter. Then it dawned on me, US-1 followed the entire Atlantic coast of Florida, all the way to Key West. In fact, it followed the entire U.S. eastern seaboard starting in northern Maine. What was it doing so far inland in Georgia I questioned? How could I be such an idiot? I thought, but then quickly dismissed it.

Before Andria took her attention off her Android I swung south onto US-1. She looked up and asked, “Are we on I-95 now?”

“Better,” I responded, “Were on US-1.”

But before she had time to ball up her fist and send it smashing into my shoulder the headlights flashed on a sign, “St. Augustine – 25 miles.” “And, see it is only 11:25 p.m., I told you I’d get us here by the end of the day,” I proudly stated.

So yesterday I was shopping at Horrock’s with Jacob and Antonia and as we perused the preserves I lit up when I saw a label for Old Fashion “Hoppin” F-R-O-G Jam. I picked up a jar and was immediately confused as its contents were red and not green. I read the ingredients and while there was a delightful mix of raspberries, jalapenos, figs, ginger and orange peel, surprisingly there was neither frog nor frog parts. Why then was it named Frog jam? Jacob suggested that perhaps the letters were abbreviations for the ingredients. So I read the label again and said if that were the case it would be called RJFGO. It wasn’t until this day, about thirty seconds ago, through extensive Googling that I determined that the jalapenos were a Horrock original and that southern Frog Jam traditionally has only raspberries, figs, and ginger and orange peel – RFGO. Baffled, I continued my query. After exhausting my options I concluded that no where on the internet would I find the origins of the name. I guess it will just remain a mystery.

Providers - Do not underestimate the value of your Social Worker

2011-12-08T11:36:00.000-08:00

I was surprised when I attended my November Clinic visit at Henry Ford to find that my social worker was relocated to other facilities. Also, I was surprised at the transition to my new social worker.

The dialysis social worker is a very interesting position on the kidney care team. The position doesn't scream vital like the physician, dietitian and nurse, yet it is still critically important to a patient's well being and ability to embrace life after dialysis. With my eleven years of experience on dialysis, I find that the SW provides a subtle, humanizing aspect to the medical machinery that we rely on for life. The effectiveness of a SW is based on a trusting relationship which is forged over time. At times the SW is critical as when s/he helps a patient to work through important paperwork to ensure dialysis reimbursement or access to medicine. Other times s/he is assisting on the important aspect of helping a patient to find a way back to work or to enjoy aspects of a life they thought they lost forever, such as traveling or intimacy. For me, dialysis social workers have provided a kind smile and check on things that do not require a blood pressure cuff or a poke.

Rather than just informing me that my social worker was gone and that there is a social worker at in-center dialysis that can be made available, it would have been nice for the new social worker to stop by and introduce him or herself. Personal touch is the hallmark of social working. Without being introduced to my social worker and getting to know them I will be reluctant to call for him/her when needed.

Celebrating organ donation this Sunday at All Saints Episcopal Church East Lansing

2011-11-16T07:48:00.001-08:00

She is nervous. Sitting in the waiting room she tries not to think about it. Everyone chats around her - mom, husband, and friend. The beach, focus on the beach she reminds herself. The warm sun, emerald waters and her son giddy with excitement when he scoops a handful of sand and water appears. Focus on your favorite place they told her. Don’t get up and run that would be childish, see the waves. The vision is interrupted when the attendant states her name and says that it is time.

Laying on the gurney, all that she can think of is that they need to put the IV in so that she can get the relaxing medicine. They promised her relaxing medicine. But the IV is going to hurt. I’m voluntarily subjecting myself to pain. Remember, they said you can change your mind at any time. This is crazy. It’s in, and her eyes close for a second; that is all that is needed for her little boy’s smile to reappear. As he digs his hole a pair of larger hands is helping. She opens them and sees her husband at her side whispering words of encouragement. She draws courage from deep inside. She is still scared but she knows that donating her kidney is what she must do.

Sticking the needle for the first time - first published in 2006 on Tasty Kidney Pie

2011-10-04T05:49:00.000-07:00

The first time I had to stick, I held the surgically sharp tip with my right hand just above the bulging vein in my left bicep. I just held it there. After some time I tried to imagine my hand moving forward at the correct angle. I tried not to think about the razor sharp metal slicing layers of skin until I felt a “pop,” the feeling described to me when the needle bursts through the vein wall allowing blood to flash into the connected tubing. I was instructed that at that point I would know when to stop pushing. “But, how would I know?” “What would keep me from continuing right on through the opposite wall skewering the Triceps brachii like some tender piece of marinated tenderloin?” The answer given was that I would just know, which was comforting, not!

After a few more very long seconds of what on the outside must have looked like a Zen meditation trance but on the inside I knew what was really going on - panic and a mental image of me throwing the needle out of my hand and lifting my butt of the seat and hauling it on out of there. Instead, I took my leap of faith. I thrusted my extended fingers forward while my left big toe searched for a table leg to wrap around to calm itself all the while I silently screamed, “I do not like this “Sam I am.” I do not like big needles in my ham.” But before I could butcher any more Seuss it was over. Some magical force stopped my forward motion leaving the needle right in the middle of my vein. I sighed. My arterial bloodline was secured. After a few moments of quiet celebration I reached for another needle to secure my venous bloodline. When both lines were set and the machine was on, I leaned back into my chair exhausted but smiling. . . I had scaled the Mountain and found that my life was better for it. Six out of seven days I scale that same mountain but each day the slope flattens just a bit.”

Sweet dreams my dear

2011-09-07T12:14:00.000-07:00

At the first crack of thunder, she leaps out of her princess carriage bed, skitters out of her room and around the corner and pounces on to our bed. She slips her feet beneath the sheet quickly pulling it up over her head, hoping to be established as a permanent fixture before I came out of the bathroom. I scan the room as I enter whispering to myself, “I thought I heard a commotion out here?” I scratch my head and quizzically squish my face and say, “I guess it was my imagination.” This elicits a giggle. “What was that?” I ask myself as I reach for the closet door, swinging it open with an “Ah hah!” to find nobody there while hearing more bursts of giggles from across the room. After checking another closet, a couple of drawers and under the bed I quietly step to the side of the bed where a lump has appeared. I imagined my daughter holding her breath, trying to silently sink deeper into the mattress, struggling not to laugh as her eyes follow my silhouette through the light blue sheet. Her anticipation heightens with each step closer I take knowing that her father’s hand will soon reach down, grab the sheet and unveil her with a cheerful, “Gotcha.”

Tonight I take my time with the day’s last dance. I step closer to the bed, my silhouette looming largely through the sheet but then quietly retreat to my rocking chair. I spread out my protective pads on the tray table and start to unwrap my supplies. The only sound in the room is the swoosh of the saline circulating through the machine and the hum of its pump. I sense the sheet being carefully pulled down across my daughter’s forehead, exposing her espresso eyes. I quickly turn from my task to look her way only to see a fold of sheet melt into the pillow. As I turn back to continue my set up, a loud “beep, beep, beep,” sounds, startling my daughter out of her ruse. “It is o.k. Sweetie, it is just the machine.” She knows but it still surprises her. Now sitting up she watches as I come toward the bed where the machine is inches away. As I sit down on the bed I simultaneously reach for her with my left hand as I press a button to mute the alarm with my right. I pull her close with a hug and say, “How did you get her? I thought you were sound asleep in your bed.” “Dad you knew,” she says with her all knowing smile. “I did not,” I respond unconvincingly. “You can lay here until it is time for me to hook up. Close your eyes and try to fall asleep, Sweetie,” I urge while bending over to give her a kiss. Playfully she jerks her head and shakes it slowly with a tight lipped smile, “No kissey, Daddy.” “O.k.” I say and get up and return to the tray table.

I open the 30 cc syringe and the two 10 cc syringes and put the needles on. Then I unsheathe the large fifteen gauge needles which have long tubes attached. I place the band aides on the table and start unrolling lengths of silk tape, securing them to the table. As I do this, from behind my gaze my daughter watches. Having completed my set up, I get up from the rocker and head back to the machine. My daughter’s beautiful brown face is bathed in red light from numbers illuminated on the machine. I sit down next to her and say, “Please close you eyes my dear. You need to go to sleep.” I grab the tubes attached to my machine and start snapping them to remove the air bubbles.

“Daddy when will you stop doing dialysis?” Antonia asks a matter-of-fact. I let go of the tubes, turn to her and put my freckled hand on her soft cheek and say, “I’m going to do dialysis for a long time. Long enough for you to get much older, go to college, have a career and get married and have children so that I can be a Grandaddy.” After a moment, with sleep getting closer, she asks “Then will you stop dialyisis?” Trying to seem unfazed by the depth of the questioning of my seven year old daughter, I respond, “I will be on dialysis until I go with God.” Her lids now heavy across her eyes, she silently mouths, “o.k.” I lean over, kiss her on the forehead and return to the rocking chair.

I switch on the radio and with Handel’s Water Music, Suite No 2 playing softly in the background I swipe the line on my left bicep with alcohol. After it dries I swipe it again, this time with beta-dine. I trace the burnt red line with my right finger tips feeling the outline of the graft just below my skin. The narrow graft connects a vein and artery enabling the blood to easily leave my body and return after a quick trip through the tubing and artificial kidney supported by the machine. As my daughter sleeps soundly I pick up one of the fifteen gauge needles, take aim, wince and push it cautiously into my arm. The blood immediately rushes into the tube, relieving my anxiety. It is disconcerting when I miss. After placing the other needle I walk over to the door and turn off the overhead lights. I walk back to the bed and push Antonia to the middle with my right hand. I connect the tubes in my arm to the tubes on the machine and press “go.” The blood comes out of my arm and pushes the saline through the machine and into my arm through the return needle. I make some adjustments to the machine and turn on the heparin pump. I grab my Kindle, turn off the bedside lamp, turn on my reading lamp, lay my head down and take a last look at the machine. The tubes run garnet, everything is secure and I am ready for eight hours of cleansing and sleeping. Antonia lies peacefully at my side, her mom will move her to her room when she comes upstairs. I listen to the rain falling and my daughter breathing. The lightening and thunder are now miles past to the East. I flick on the Kindle and settle into Hiaasen and Montabalno’s A Death in China.

Please support the National Kidney Foundation by donating to the Riverdudes

2011-06-02T09:09:00.001-07:00

Please help me raise $5,000 to help beat Kidney Disease

2011-04-21T09:19:00.000-07:00

Dear Friend:

Last year was a hoot and together we raised $17,000 as we walked and then paddled the length of the Grand River. It was an incredible journey both in raising the amount that we did and in getting the word out that life begins a new on dialysis and that one can be active despite one's chronic illness. Thank you for all the support last year.

This year we have a new goal of $5,000. With our support to the National Kidney Foundation of Michigan we will be helping the organization reach out to everyone in Michigan, including our friends and families, about the importance of maintaining a healthy weight and blood pressure, both if out of control can lead to the loss of one's kidneys. And let me tell you, while everyday I try to live a great life with the help of dialysis, it would be a whole lot easier if I didn't have to do it.

I want to share a short story from my blog http://paddlingondialysisforkidneyhealth.blogspot.com/

My daughter and I are driving and she notices a couple of children running on the sidewalk and turns to me and says, "I wish you weren't fat. I wish your were skinny."

I take a Twix like pause to give my good daddy side of my brain time to kick start and them timidly ask, "Why?"

"Because then we could run together," she innocently responds.

Apparently all the physical benefits of my 235 mile canoe odyssey last year have disappeared. This year's goal will be to run with my daughter.

There are three ways that you can get involved:

1. Make a donation through this secure website right now. http://donate.kidney.org/site/TR/Walk/Michigan?px=1006841&pg=personal&fr_id=3391

2. Join The Riverdudes and The Hubbard Law Firm Walk Team and collect funds to help us reach our goal. We will be walking down town starting at Cooley Law School Stadium (an no they don't fight attorney gladiators there) on Sunday, June 12. Let me know and I will happily sign you up or you can sign up on the Team Webpage http://donate.kidney.org/site/TR/Walk/Michigan?team_id=85711&pg=team&fr_id=3391

3. Become a virtual member of my crew. Join the Walk Team but because of timing or distance, just help raise money. If you can't walk with us, you can still be a part of the Team. Use the Team Page link above.

The money you donate to NKFM is used for research into cures and better treatments, sending kids on dialysis and with transplants to camp, making medicines more affordable to patients, and educating at risk populations about how to reduce their risk to kidney disease.

Please donate $100, $50, or what you can to day. If you would rather, you can send a check made out to the National Kidney Foundation of Michigan and mail it to me at:

Erich Ditschman

Together we can help many others through supporting the NKFM.

Dialyze for the Prize! And, have a wonderful day.

Erich

Click here to visit my personal page.
If the text above does not appear as a clickable link, you can visit the web address:
http://donate.kidney.org/site/TR?px=1006841&pg=personal&fr_id=3391&et=udM2BhO5KtfG8Rvfmcmssw..&s_tafId=23030

Click here to view the team page for The Riverdudes and The Hubbard Law Firm
If the text above does not appear as a clickable link, you can visit the web address:
http://donate.kidney.org/site/TR?team_id=85711&pg=team&fr_id=3391&et=wg35ukEI2egpk1O-KUL0DA..&s_tafId=23030

"I wish you weren't fat."

2011-04-21T07:44:00.001-07:00

My daughter and I are driving and she notices a couple of children running on the sidewalk and turns to me and says, "I wish you weren't fat. I wish your were skinny."

I take a Twix like pause to give my good daddy side of my brain time to kick start and them timidly ask, "Why?"

"Because then we can run together," she innocently responds.

Apparently all the physical benefits of my 235 mile canoe odyssey last year have disappeared. This year's goal will be to run with my daughter.

After I told this story to Andria, she mentioned that I could have said, "At least I'm not dead."

To which I responded, "Honey, I don't live in a world of attorneys. I have to assume innocence first and anyways, sarcasm only works with Jacob."

A message to a friend

2011-02-28T09:02:00.000-08:00

Hi:

I understand things are going very well for you at FSU. It is because you are a very smart and confident young woman. This is a wonderful time in your life and I am very excited for you.

I've heard that you are wrestling with whether to pursue a Ph.D. Perhaps you have already decided, but in case you haven't I want to share briefly my experience on pursuing a Ph.D. O.k., I'm sure you are thinking what could a 45 year old due that you just met a few years ago possible share that has any value? I know I would be if I were in your shoes. But, I wholly believe that it "Takes a Village," so here it goes.

Andria and I were high school sweethearts who miraculously waited until we graduated from college to get married. When she graduated I had just started on my MS at MSU. I had a well funded Assistantship which pretty much covered my end of our shared financial obligations and Andria worked full-time. As I came closer to finishing my program I started working close to full-time at MSU and Andria started law school at Wayne State. We lived in Farmington Hills and she commuted to Detroit and I to East Lansing.

I graduated and moved into a full time position in Rochester Hills at a not for profit organization (means low pay but meaningful work) and Andria continued at WSU. A couple years into my position I started a PhD program at MSU. Andria graduated and took a position in Port Huron. For a while she commuted to Port Huron and I to East Lansing in the evenings for classes. Eventually we moved to PH and I commuted to Rochester Hills then to EL and back to PH. I really wanted the Ph.D. I saw myself sometime in the future as a professor who did part time consulting. I knew some professors who did that and it seemed like a pretty good gig.

Eventually I moved from my not-for-profit job to the private sector. The money got better. Here is an important point - as the money got better so did our lifestyle - from Ramen to actual cuts of meat as well as futons to to solid furniture and ten year old cars to new cars.

So, I'm into my new position, enjoying developing the work I was doing, making new clients, doing things with the Partners and along comes a three-year full ride Water Science Fellowship. The Fellowship is designed to pay for my classes, give a decent stipend (in graduate school terms) and significant opportunity for professional growth. It was a sweet deal. You see I was still commuting to EL now from PH to Bloomfield Hills to EL and back to PH. This Fellowship is like a gift from the heavens, right?

The problem is that there is no way we could take such a big cut in our combined household income to live on that stipend, even with Andria working full-time. So I passed on the Fellowship.

I still was not daunted in continuing to pursue my Ph.D. It just took a tremendous about of time and discipline and wear and tear on our cars.

During this time Andria experienced a number of miscarriages and we also experienced issues with fertility. As we sought fertility treatments, I realized it wasn't fair for Andria to have to administer her shots by herself and to not have me by her side as we worked through this very emotionally difficult time in our lives, so I walked my last walk at MSU and decided I would stop pursing the Ph.D.

A year or two later I was able to continue to pursue my program until we started having difficulties with the adoption process. And again, I took what I thought were my last steps along the Red Cedar River so that I could be where I was needed most.

A few years later I take a new job in Lansing and we buy our house which is blocks away from the University. I again restart my program. In fact, this becomes the third time I take the same Ag Economics Course with the same professor. I proudly tell him, this time I'm going to finish his course. And darn if a month in, my feet swell and it turns out I'm losing the use of kidneys. I don't complete his course and instead go on dialysis.

That was ten years ago. Last year I found out that I timed out of the system and would have to take most of the course work again not to mention that I would have to re-apply to the program that I spent ten years in. I had nearly finished my course work and was starting my dissertation research.

My dreams have changed and I have lost the desire to pursue the Ph.D. I spend a significant amount of time with Antonia and Jacob and of course Andria and I can't conceive of having to be away from them right now to sit in a classroom or be holed up in a library.

One of my regrets is how much time away from Andria I spent over the many years I pursued my Ph.D. She was always supportive of my pursuit but it just wasn't fair to be away from my love for so long. In retrospect, had I taken the Fellowship, the program would have been done in three-years and I wouldn't have missed all that time with Andria. We would have just had to eat Ramen more frequently and make a few other economic adjustments.

While this might sound like a sad story it isn't. Life is a crazy ride. Thankfully each of us are very resilient. If not, we'd be a miserable lot. Instead, we have the ability to rebound from the many difficult hurdles that come our way. I have learned to become an incredible Rebounder. I think Izzo could use someone like me right now.

You are such an incredible young lady that I know that whatever decision you make will be right for you.

I am lucky to know you.

Take care, Erich

A cool picture published in Our Grand Journey: discovering the river we thought we knew.

2011-02-07T09:22:00.000-08:00

This photo is on page 108-109 of Our Grand Journey: Discovering the river we thought we knew -http://vintagegrandrapids.com/

Removing my fistula and inserting a Graft

2011-02-07T09:19:00.000-08:00

The following are recent posts to my Paddling on Dialysis for Kidney Health Facebook Page.

January 16, 2011
Goodbye my snake
Tomorrow I say goodbye to my fistula, what Jake and Antonia affectionately call my snake. We have had a great ten year run. It is the access that keeps me alive and keeps me paddling...

I struggle posting this type of post. For many it is too much information. However, occasionally I hear from someone who has happened on something I write, rarely mind you, but it happens, and they tell me thank you for posting. So it is with that thought- that perhaps what I write may help someone else dealing with kidney disease or crisis, that I post too much information. Thanks for reading.

For more information on what a fistula is see http://kidney.niddk.nih.gov/kudiseases/pubs/vascularaccess/

Jaunary 17, 2011

I'm posting this because I have had some questions. Always Fistula First!. A fistula is the best access to avoid infection and blood clots. No one likes needles but you eventually grow to tolerate them. After numerous sticks scar tissue develops and it becomes less painful. Of course the best to combat pain is to develop button holes, a technique that allows you to pick off a scab and place the needles through a tunnel similar to how pierced ears work (without the scab of course). My first fistulagram was after eight years of use of the fistula and my first angio was last week. My skin became very tight and was not longer able to make button holes, then it became difficult for the skin to heal. But, it wasn't until my fistulagram last week that it was determined that the walls were too thin and that there was a real risk of rupture. Please keep the questions coming.

(these are Xrays of my fistula showing the

large pseudoaneurysms that eventually were incised

after the vectra graft was placed)

Does this mean that you will need a new fistula made...

Eventually. But I'd like to gain as much time as I can from the graft. Because it will be more difficult sticking my right arm with my left hand after a new fistula is placed there. Also, once the right arm is used up we have to move to a leg and that doesn't sound at all appealing. But waking up with Andria at my side and coming home to big but cautious hugs from Jacob and Antonia make it all worthwhile.

So fistulas can go wrong? Do you mean the vessel part or the actual fistula tubing? In the hospital they told me they were for life which clearly isant the case! So where do they go when your arms and legs are all used up?

:-(

They can go wrong but they are the least likely to, especially if the are being followed by a good vascular surgeon. Some people have used their fistulas for over 35 years. Every patient is different. Remember a fistula is you - nothing artificial. The blood vessel is the fistula. The artery is rerouted to a vein. The vein which is a low pressure system back to the heart enlarges when it receives the high pressure from the artery. This is how it gets large enough to use as an access. I absolutely love to swim and canoe and kayak as do my children which are 6 and 11. The fistula allows me to continue to do these things. Also, I love the fact that I don't have anything hanging on like a catheter. Home Dialysis Central has a great tutorial about establishing button holes athttp://www.homedialysis.org/learn/buttonhole/

February 7, 2011

After a couple of weeks of recovery I had the thirty staples removed from arm. As the pain of the surgery and and the swelling both subsided, I started to poke my new graft. I am now happy to report that Dialysis Dad and graft are both doing fine.

Phi Sigma Sigma Golf Outing in Mt.Pleasant to benefit National Kidney Foundation

2011-02-04T11:45:00.000-08:00

If you are in the Mount Pleasant area on April 16th check this out http://www.wix.com/holla4jm/phisigmasigma-golfouting
The sisters of Phi Sigma Sigma are hosting a golf outing to benefit the National Kidney Foundation. I just found out my cuz is a sister - small world.

I plan to attend. I hope you can join me.

Paddling upstream

2011-02-04T11:43:00.000-08:00

After last summer's excitement of the Grand River Expedition my rapids spilled into quiet waters. The camaraderie, active schedule, renewal of old friendships and the creation of new ones and the daily sense of accomplishment I received paddling with sixty other river enthusiasts created a palpable kinetic energy. Even though I was tired at the end of each day and had to dialyze, I felt a sense of renewal, of purpose and of who I once was. My first job at the Clinton River Watershed Council was to canoe its length and observe its condition from the headwaters in Waterford to its confluence with Lake St. Clair. I was young, excited, and on the water getting paid - pretty much a riverdude's dream job. As with all good gigs, the Expedition ended.

The Grand River's rhythm established a beachhead on my soul. From enjoying limited excursions the year before, I now craved the feeling of sitting in a boat and paddling upstream with Buffett's Far Side of the World cruising from my Blackberry to my brainstem and down to the peripheral nerves in my toes. Upon reaching the upstream point where I had to turn around in order to finish in time to get my children, I maneuvered the kayak downstream and let the current bring me slowly back to reality enjoying the eddying of the current as I slipped over the rocks.

While I continued to enjoy the Grand River on my own, I changed the social dynamics of my life. Since Jacob was now a Boy Scout I no longer was a Cub Scout Den Leader. I chose not to continue in my role as Marble's Yearbook coordinator and since Andria was no longer the Parent Council President I no longer was its number one go to volunteer. I resigned as a Board Member ofDialysis Patient Citizens. While I believe it is a good organization with a dynamic staff I just wasn't feeling a connection with my fellow Board Members. Also, while I loved the trips to D.C. - roaming the halls of the Cannon Building in search of Mike Roger's office, sitting in John Dingell's Rayburn Building Office and watching him take a meeting with IBM representatives as his handlers handed us over to a policy aide, strolling past the Capitol en route to the Hart Senate Office Building to talk to Debbie Stabenow - which sparked life in this aging political science major, I tired of becoming entrenched in the dialysis industrial complex. I believe that true recovery from kidney disease is when one has restored the passions enjoyed before the onset. I didn't want kidney disease prevention to become my new identity. However, I found that without the structure of these volunteer endeavors I was rather rudderless in my pursuit of happiness.

Each day I thought about sitting down and writing but by the end of the day a home improvement project, grocery shopping, children shuttling, or dinner making had absorbed my time. So while one close friend landed a new job and another found his way back on Broadway I just lived day by day. Living in the moment is not easy for someone who has been a planner all his life. To ease my frustration as I lay in bed connected to my dialysis machine, I recalled that my major goal in life that I set in high school was to wake up with Andria in my arms. With that in mind, I suppose anything else is gravy.

As Christmas drew near, interesting things began to happen. A carpenter who was working on our basement noticed my Fresenius boxes and asked me about dialysis. His wife was on dialysis and not doing so well in center while using the catheter in her chest. Apparently she just cancelled a meeting with a surgeon that day to discuss putting in a fistula. I showed him my fistula and we discussed home hemodialysis. Later in the week I found out that his wife had rescheduled and attended her consultation. She was now planning on getting her fistula. I then received a call from a fellow All Saints parishioner. She was concerned that a local surgeon had botched her son's graft placement and inquired whether I knew about Michigan Vascular Access Center (little did I know at the time that I would soon be a patient there). We talked at length about the situation and about connections I had at U of M. While it wasn't much, I was there for her and her son and I think she found solace in our call. A short while later, my regular postal carrier knocked on our door and handed me a $50.00 bill for the National Kidney Foundation of Michigan. He said that he and his wife were touched by my efforts and wanted to make a contribution. I was floored by his kindness. Talk about out of the blue.

My wife and I attended the Christmas Party at her law firm. At one point during the dinner I presented the president of the firm with a copy of Our Grand Journey: Discovering the river we thought we knew with an inscription thanking the firm for their generous contribution and support for the last ten years. Later that night during the white elephant gift giving the president and his wife, who own's Yesterday's Toys in Laingsburg, donated a couple of toy ping pong ball guns which were spontaneously raffled and raised $80.00 for the NKFM. Over the holidays a couple of more donations from friends came in the mail. Just recently I received a check for $115 from the employees of Spectra Laboratories, the place I send my monthly blood samples. Spectra was already a corporate donor to Paddling on Dialysis for Kidney Health but to find out that their employees raised money on their own was surprising and delightful. While I may have removed myself from actively lobbying policy makers and separated from the dialysis industrial complex, I am still able to make a difference on a more personal scale which is very gratifying.

I recently found an editor for my book. I'm hoping this will add some current for my rudder to take hold. Perhaps a good "hard to starboard" will help me regain the helm and set a course to finish Amos. As I write, I will continue to grocery shop, make dinner and shuttle Jacob and Antonia because that is my true dream job. I will also be there for those that I can help as we each make the most out of living with kidney disease. And, as soon as my new graft that I received from the good doctors at the Michigan Vascular Access Center heals and the temperature rises a good bit above the current ten degrees I'll put a boat in the Grand and paddle upstream.

Jump in your boat, grab a paddle and ride the river to a joyful life on dialysi

2010-11-06T14:36:00.000-07:00

This summer I paddled 225 miles in ten days, did nocturnal home hemodialysis each night and raised $17,000 for kidney disease prevention. I did this to celebrate ten years on dialysis. Perhaps my adventure can help to motivate your patients to be compliant and to embrace a more active and fulfilling lifestyle. I have FSGS which has shut down two transplanted kidneys (one from my wife) and have done a variety of dialysis modalities, but I’m not letting kidney disease get in the way of living a wonderful life.

As past board member of a national dialysis patient advocacy organization I am well aware of the difficulties dialysis providers have in helping their patients to embrace dialysis as a true gift of life. Dialysis provides an opportunity, if followed per prescription, to live a meaningful and joyful life. Unfortunately patients all too often are overwhelmed by the disease and can seem to achieve this.

Last year I developed a presentation, The Patient as Captain of his Team, to help motivate provider staff.

“WOW. . . . . . did our folks love you. . . . . and so did I!” Thanks so much for coming out to support our Symposium Meeting,”

wrote David F. Shepherd, Vice President, Greenfield Health Systems after I delivered the presentation on both days of Greenfield’s Renal Care Symposium 2009: “Engaging Excellence,” held November 18-19. Because of this I was invited to by the Kidney Foundation of Northwest Ohio to present at their 2010 Spring Professional Symposium. I also had a similar presentation accepted and delivered at the 2010 Annual Dialysis Conference held in March in Seattle.

The beginning of last year, I created a blog - http://paddlingondialysisforkidneyhealth.blogspot.com/ so that fellow patients and others could follow me as I attempted to get into shape and prepare for the grueling paddling event. You see, I'm am not a super athlete, rather am I an average forty-five year old guy, husband and father of two young children who happens to have been on dialysis for ten years. Perhaps you saw the story in the September 2010 issue of Nephrology News & Issues.

The blog was also used to help raise money for the National Kidney Foundation of Michigan. I set a goal of $20,000 and am still working to meet it. I have enclosed a couple of the newspaper articles that covered the story for your enjoyment. The March 6 entry to my blog is a copy of the presentation I delivered to the Annual Dialysis Conference.

I have a new presentation which documents with humor how a middle age out of shape dialysis patient can set an activity goal, develop a training routine, and embark on adventure and dialyze along the way. It is called "Jump in your boat, grab a paddle and ride the river to a joyful life on dialysis."

I would love to help you to help your patients to reach their full potential.

Jacob's Class Project

2010-10-19T13:42:00.000-07:00

Jacob presented this poster along with the

Gnarls Barkley video of Crazy

for his what I did last summer project.

This is what home hemodialysis is all about. I'm so glad to be alive so that I could share this experience with my son, daughter, spouse and all those who supported me on the water and through their donations.

The link to my fundraising site is ready to go. Feel free to try it out.

2010-10-12T11:57:00.001-07:00

The link to my fundraising site is ready to go. Feel free to try it out.

City of East Lansing Resolution - This was a neat surprise

2010-10-12T11:56:00.001-07:00

Donations

2010-09-28T12:10:00.001-07:00

Currently my donations link is not working. If you would like to make a donation to the National Kidney Foundation of Michigan please leave a comment and I will contact you with instructions. Thank you. Erich

Grand River Expedition Photos from my friend Shelby

2010-09-28T12:08:00.000-07:00

Speaking in Old Town

Steering to the riverbank to retrieve the

world's best espresso from my friends at the Coffee Jam

Shelby maker of extraordinary espresso and Pat canoeist extraordinaire

Jacob and I heading in from another day of paddling

Enjoying delicious no bake cookies from the Coffee Jam - "because nice matters."

Nephrology News & Issues Article - September 2010

2010-09-28T12:02:00.000-07:00

A few more pictures for Grand River Expedition 2010

2010-08-24T12:34:00.000-07:00

I am speaking about how all of us have challenges to overcome. It is our resilience and courage that enables us to pick ourselves up and strive to do great things. These comments were made at the Old Town, Lansing welcoming of the Grand River Expedition 2010. I then re-entered the the river with my lovely wife, Andria, and had a delightful paddle to Grand Ledge.

Meeting at lunch during our last day of paddling. Matt and I launched and headed out toward Lake Huron.

O.k., after a little push we were on our way.

O.k., after a big heave, hoe from the stern we were on our way.

Matt displaying the colors proudly.

Doug and I after our very wet portion through Grand Rapids.

Running the a few of the dams was fun. We are at on of my "Particular Harbors" - Grand Haven. One more day to go.

After a hearty lunch, Jake was ready to go on his second leg.

A bit of reflection on the days journey before we both jumped in.

This is still the Grand River.

Helping get out the word in Grand Haven.

My dream boat.

I love Grand Haven.

These are the paddlers who went the entire 225 miles. What an incredible bunch of wonderful people. I'm lucky to have been able to journey with them.

Matt, Antonia and I at Lake Michigan after 225 miles of paddling for me.

Until 2020.

Jacob assured me that he will be doing the entire trip with me in 2020. A bet Antonia will want to join us. Jake with will be 20 years old and Antonia will be 16.

The Riverdudes

Paddling Poster at Greenfield Health Dialysis Center at Henry Ford Hospital

2010-08-17T08:09:00.000-07:00

I went to dialysis clinic last week and as I walked through the door I was greeted by this poster. Our social worker, Karen, told me that a number of patients asked about the project. This is what I wanted when I started training. This and to lose twenty pounds. At least maybe I achieved the inspiration part. It would be nice to know that a patient pushed themselves a little harder after seeing this poster.

Follow Fit and Active on Dialysis for incredible inspiration from Julia

2010-08-11T16:12:00.001-07:00

http://fitandactiveondialysis.blogspot.com/

Here is an excellent blog for becoming active while on dialysis. Follow Julia as she becomes a super athlete and also does hemodialysis. Just do it Julia.

225 miles later

2010-08-11T09:47:00.000-07:00

It has been a couple of weeks since I completed the 225 mile Grand River Expedition. It was an incredible experience. Jacob canoed with me two days and Andria one day. On my first day, which was one Jacob joined me, we had seventy mile an hour winds, torential rains, and lightening, one struck one hundred feet away from us as we huddled under a bridge with twenty-five other paddlers.

I had a number of old and new friends join me for the other ten days. I even had a new friend paddle with me who happened to have kidney and pancreas transplant and a prosthetic leg. We had a number of portages that day which we were successful with, especially due to the help of our fellow paddlers. With your support, it felt as if you too were there in my canoe with me.

The first two days were a challange, but after that I seemed to develop a rhythm chasing Great Blue Herons and Kingfishers down the stream until they turned to Bald Eagles and eventually to seagulls as we came upon the dunes near Lake Michigan. My father in law, Larry and his wife, Sue, camped with me for five days at Ionia State Park allowing for me to dialyze close to the middle stretches of the journey. So many people helped to make this journey so successful.

I never dialyzed so much - 12 days. I took one day off because of a threat of tornadoes and thunderstorms. Sure enough we lost power that night, so I'm glad I didn't have to disconnect. It ruins my beauty sleep. And, as you all know, I need all that I can get. The daily dialysis helped me to be strong each day. I would do it all the time if it weren't so much work.

There were 60 of us paddlers who paddled the entire length and nearly 400 who paddled at least one day. This was the most ever for this adventure that started in 1990. Everyone brough a unique experience to the trip. We had a newlywed couple, and woman who celebrated her 85th birthday and her third Expedition. We had a 14 year old boy who paddled the distance with his grandfather. And, we also had a Voyager Canoe from Project Lakewell join us for the final half of the trip. It was a like freigther compared to the many 12 foot kayaks.

Most importantly, I have now raised nearly $13,000 for the National Kidney Foundation. I couldn't have done this without your donations and kind wishes.

Thank you from the bottom of my heart, and let me tell you I have a pretty big heart, so that is a lot of thanks and love.

I hope you enjoy the rest of this splendid summer.

Your truly,
Erich

The Chippewa was wonderful tonic for the "liquid soul"

2010-08-07T18:47:00.000-07:00

Yesterday, Jacob, Antonia and I spent three hours on the Chippewa River in central Michigan west of Mount Pleasant. Though on the low side, which was only noticeable in the stern of my boat, the Chippewa moves swiftly compared to the lumbering Grand River.

It was nice to scoop up a rock and examine it for helgramites, mayfly larvae, and caddisfly (macroinvertebrates - fish food for the uninitiated) and to swim in some nice gravel bottom holes. We saw tons of muskrats and even more drunken coeds on tubes. Something on the river for everyone to enjoy. For the upper part of the river we had it virtually to ourselves, except for the occaissional rat or tube.

This is a great river until you hit the golf course. The bottom is silted and the banks eroded and elderly ladies wave at you as they fly by in thier carts - which isn't bad, just a different kind of wildlife. My inner watershed planner reminded me that there is room for everyone on a river, er, even on their banks - that is, if done well.

Any day on a river is a good day.

A year ago, I passed on a number of canoeing opportunities because the act of hoisting my boat, gathering supplies and rounding up my kids was overwhelming. I'm not sure if I'm in better shape, certainly have seemed to helped the anemia problem with the recent surgery, or if I have just rekindled my river flame. Yesterday I remained undaunted as the day turned into afternoon and yet I managed to pack us up and drive an hour and a half to the Chippewa. We got on the river at 3:30 with a great spot from the folks at the Chippewa Canoe Livery.

On the first day of the Grand River Expedition, as Jacob and I were beginning the second and very long eventful leg of the day, Jacob said, "Dad, you know other dad's don't do this. I really enjoy canoeing with you." That was music to my ears. All too often I am painfully reminded of the many things I don't do that other fathers can do in contrast to things that I do do - like dialysis which most fathers do not need to do. It gladdens me that I can offer my children incredible outdoor adventures. The Grand River Expedition has inspired me to get my kids outside much more often that I did. Neither Jacob nor Antonia wanted our trip to end yesterday. And as soon as I had them back in the boats they yearned to be in the water and so did I.

I told them yesterday that my favorite thing in the world is swimming in a swift moving, cool clean stream - and to share that with my children was an amazing treat. To which Jacob said, "doesn't everybody?" A crescendo to the symphany I was hearing. I reminded him that many people don't like to swim in anything other than a pool and wouldn't want to share the river with a helgramite.

When we were in Lansing during the Grand River Expedition, my long time friend and Ingham County Treasurer, Eric Schertzing mentioned that the Grand River was liquid soul as he welcomed the paddlers. Liquid soul, such an eloquent term for the Grand and for all rivers. It certainly fits for my beloved Clinton River to which I'm thinking of taking the kids to this fall to have some fun on.

The River Dude.

Heading for the Chippewa River for a river fix with Jacob and Antonia

2010-08-06T08:08:00.000-07:00

Because of the incredible support of Andria, I was able to spend thirteen days of the summer on the Grand River. Since coming home, I've been spending all my time with my family, camping, making dinners, swimming at the MSU pool and just plain hanging out. We have four weeks left until Jacob and Antonia are back in school and I want to make the most of our time together. Because of this, the blogging has been a bit spotty. Once school starts, I will have more time to reflect on my incredible 225 mile journey. I feel blessed that I was able to complete it with energy to share.

If I can tear myself away from my computer and finish the breakfast dishes, I will take Jake and Antonia up to the Chippewa River in Mount Pleasant. It is one of the closer cool, clear running streams. Time to go.

We have hit the $12,000 mark!

2010-07-27T17:36:00.001-07:00

We just received another $700.00 from friends from the GRE Expedition, All Saints Church, greater East Lansing community and from wonderful people who saw us on Channel 13 in Grand Rapids and Channel 10 in Lansing. We have it $12,000 and are now working on $13,000. If you haven't already donated please consider doing... so on my secure link on the left side of this page. Thank you!

No more paddling for now

2010-07-27T11:32:00.001-07:00

I'm not in the water. I'm enjoying a double espresso and the company of Jake and Antonia. I'm very happy but miss the river.

Three more days to go.

2010-07-23T19:31:00.000-07:00

Great coverage on Channel 13 News Grand Rapids.

I am now diayzing in a Holiday Inn. A bit tired. On dialysis and need to get up at 5:30, so just some pics for now.

Where I had been staying. hank you Larry and Sue.

My wonderful paddling partner Diane. Thank you Diane.

Day 9 - Sunny, Slow, Wet, Thunder, Speed Paddle, Great Bowman

2010-07-22T15:42:00.000-07:00

I've been at Ionia State Park with Andria's Dad, Larry and is wonderful wife Sue, who have been my incredible hosts with their 28 ft. travel trailer and delicious meals. I came into town and found a Biggby's for the wi-fi, definitely not the espresso. My heart belongs to Coffee Jam.

The stories keep coming, but for now I'll post some photos since Larry is itching to do some fishing, er, o.k., I'm itching to do some fishing.

Yesterday and today I had my cuz, Matt canoeing for me. I met my cuz only five years ago or so, and this was a wonderful time to meet this incredibly neat twenty four year old man. We had a great time, especially as we blew through the river ahead of a electrical storm today. We made to the take out in time. For awhile it felt as if we were in the Au Sable Marathon Canoe Race. Many of our fellow paddlers have actually been in that race. It was fun to pretend. Thankfully, we only had forty-five minutes to go.

I have much more to write about Matt, and my other bowman, including my wonderful Andria, but for now enjoy the photos and accept my apology for not getting online sooner. I have to admit I've been pretty tired at night. Tomorrow I'll be at the Grand Haven Spring Lake Holiday Inn and will have wi-fi access, though I haven't seen my family since Sunday. They'll be joining me tomorrow and we'll have some catching up to do. I'll post as soon as I can. Cheers and thank you for following me. Erich

Day 1 and Day 2 pics

2010-07-17T20:25:00.000-07:00

Tired but delighted

2010-07-17T19:05:00.000-07:00

I've been on the river for three days and have paddled over 60 miles. Each night I plan to write something significant but have enough energy to spend some time with my family and get on dialysis and sleep. It is truly a great trip and I've been blessed to have my son, a friend I haven't seen in over twenty years and a dear cousin join me. I'm heading for dialysis now. I hope to post soon. Erich

Tomorrow is the day!

2010-07-14T19:30:00.000-07:00

I'm excited and nervous as I lay hear the night before shoving off into the Grand River. I have seven hours and seventeen minutes of dialysis left before my machine alarms that it is done and that it is time to wake up and take out the needles.

I have so much to catch up on. I really haven't had time to blog as I had wished. With the kids out for summer I try to focus me energies on them. I owe it to them since I'm not sure of the future. I know that know one is, but I do know the odds favor the house in my case.

My recovery from my hemorrhoids surgery took about five weeks which put a damper on my training. In the past two weeks I've tried to make up lost time by paddling and hiking. I haven't seen a gym in seven weeks. We'll find out tomorrow what type of shape I'm in.

I have been spending an incredible amount of time on a 1,000 piece mailing which seems to be paying off, especially after all the great press I've received recently. We are up to $10,000 and working on hard on reaching $20,000.

Jacob is joining me tomorrow for the first float. I'm happy with a pinch of trepidation about my son on board. It is not too technical, rather he may tire out. He is very excited and so am I. I think we'll be talking about this for the rest of lives.

Here are some photos of Mike Watters getting my boat all dolled up for the event. Mike owns Blue Fish Advertising and donated his services. Thanks, Mike.

Wish me luck and skill, for I'm on the water tomorrow.

Good night, Erich

More positive media helping to get the word out about Paddling on Dialysis for Kidney Health.

2010-07-11T20:52:00.000-07:00

Dawn Parker filed a great story in the Towne Courier which nicely highlighted my watershed management career.

Also, I'll be a guest on the Jack Ebbling Show tomorrow night somewhere after 5:30 p.m.

Paddling the extra mile

2010-07-08T10:04:00.000-07:00

Cole Bertsos of The State News filed a nice article today, Paddling the extra mile, E.L. resident to canoe Grand River to raise funds for National Kidney Foundation of Michigan.

Thank you Riverdudes!

2010-06-17T12:16:00.000-07:00

It was wonderful to have such a great crew walking with me at last Sunday's National Kidney Foundation of Michigan Lansing Potter Park Zoo. We had a great stroll through the zoo and celebrated at my house afterwards. I just love spending time with friends and family. Thank you.

I have 35 Walker for this Sunday NKFM Walk but would love more

2010-06-08T11:01:00.000-07:00

Right now I have 35 friends and family lined up to walk with the Riverdudes on Sunday at 1:00 at Potter Park Zoo for the National Kidney Foundation of Michigan Walk. I would love to have more but I need to know your name and t-shirt size pronto. Thanks, Erich

You still have time to donate at my secure NKFM site.

The Riverdude needs some more paddlers for the Grand River Trek

2010-06-08T10:58:00.001-07:00

I could still use paddlers for July 15, 16, 18, 19, 20. Please let me know if you would like to paddle with me. You can sign up for $10.00 the day of the paddle for the segment. At the end you will be returned to your car. The Grand River is a beautiful river to paddle. And, if it is on you Bucket List, you get a chance to scrath it off. Thanks, Erich

This Riverdude is seriously aching to get on the river

2010-06-04T11:43:00.000-07:00

This Riverdude is aching to get his boat on his car and head to the river. Seriously, my arse is on fire. I am truly aching. They tell me this too shall pass.

Wishing I was on the water

2010-06-02T07:45:00.000-07:00

It is about time I had another canoeing picture on the Paddling on Dialysis site. Here the Riverdude expertly maneuvers out of a sticky situation while under duress. O.k., so it may be a little dated. But as I sit here convalescing all that I can think of is getting back on the water. "Patience my young Padawan learner." Qui-Gon Jin

My letter to Finnish Dialysis Patients has been published

2010-06-01T07:33:00.000-07:00

Thank you Oy.Carbonex.Ab. I think the fellow on the bottom of the ad has the right idea.

Dialyze for the Prize! Erich

Beached canoe

2010-05-26T21:11:00.000-07:00

This weekend one of my friends explained how he was training for a marathon, weight lifting and enjoying staying competitive with the young turks at his finance firm. This guy is ten years older than me. Another friend shared how he was starting a restaurant, writing children's books and was working on a cooking television show. I sat back and silently thought that I was doing pretty well not having taken a nap in three days.

It is much easier to be inspirational when I'm not anemic. But, to be inspirational while anemic, that is a challenge. This morning I woke up at 6:00 a.m. and rode two hours in Metro Detroit traffic to the University of Toledo, which for those not familiar with Great Lakes geography is about thirty minutes south of Detroit in, you guessed it, Toledo. I hadn't really prepared since I had delivered the Captain of Your Own Medical Team talk earlier in Seattle and debuted it in Ann Arbor in November (you can find in my March postings). Then my hemoglobin was 11.00, slightly less than the 12 that I desire, but a long way from the 14-18 for the non kidney disease population. I despise dwelling on numbers, but for a dialysis patient they become a matter of life and death. I rather like to measure successful dialysis on what I'm able to do. And lately, that hasn't been much.

A couple weeks ago I suspected my hemoglobin had dropped from the 10.3 that it was in April. After I received the good deputamine stress echo, in response to the irregular echocardiogram, last week I though I was back in the saddle. I went to Hannah and worked on my core. Amazed again at my being able to bench forty pounds for three sets. Amazed that after four months it was so little. But just like Bill Murray's Bob Wiley, it is all about the baby steps. "Baby step to four o'clock. Baby step to four o'clock." After my forty minute work out, instead of being stoked, I laid down and napped. My suspicions grew stronger when the next day it was hard to crack a smile. Hard but not impossible. I strive to be jovial about life for my Jacob, Antonia and Andria. Earlier this week I found out my hemoglobin had dropped to 9.3.

With all this wonderfully warm weather, it has been difficult to look at my Mad River beached up against the fence. I can't comprehend lifting it on my car, a point of pride I made about a month ago in a post.

Tomorrow I embark on a solution. Two words, hemorrhoidectomy, ouch! There I said it, hemorrhoidectomy, a fancy word for butt surgery. Somewhere along the line I must have sat on a cold cement, or so Andria's Grandpa Herb warned us against doing, "don't sit on the cold cement, you'll get hemorrhoids." Crazy old man, I thought. He would never say I told you so, but I think he is giving me that cool Clint Eastwood smile of his from up above. Anyway, one colonoscopy and a couple of digital exams later (another wonderful euphemism), here I am waiting for tomorrow morning and the answer to a more energetic life. Andria asked me not to write about this, but like Katie Couric before me, someone has to put the behind in front. I am standing on Katie's shoulders as I say proudly, "I grinned and beared it and will be healthier for it."

On my way home from the University of Toledo I heared Dr. Ellen Langer interviewed on Hear and Now about her new book, Counterclockwise: Mindful Health and the Power of Possibility. Dr. Langer presents some powerful evidence that if we reconnect the mind with the body that the body can respond in dramatic ways. One experiment put very old men in a hotel designed to be as if it were the 1950s. A control group was asked to stay in the hotel room and act as if it were 2000's but the place looked like the 1950s. Another group was asked to live as if it were 1950. The later group's after photos showed them looking younger and their physical tests were much improved over the group that were living in the now. It is all about framing the information presented to the mind - mindfullness is what Dr. Langer calls it.

After my presentation this morning, a nurse practitioner came up to me and said, "I enjoyed your talk, but you are the exception. I have trouble getting my patients to even come to dialysis let alone do the things that you suggest." At the time I again thought, "baby steps." I told her that even the little bit of attention and support can sometimes plant the seeds of change in unsuspecting persons. But mostly I said, "I know, you are right." The typical dialysis patient has difficulties getting to her three times a week dialysis and the idea of being responsible for home dialysis is incomprehensible. But, at the same time, if a caring nurse had presented the options to me that I had to seek out on my own, I would have been home a lot sooner. It is a very difficult job working with the dialysis patient community. Sometimes it can be rewarding, but often it is frustrating. I think Dr. Langer's work could turn the delivery of dialysis on its head. I think we are framing the concept of dialysis so that the mind expects little benefit and the body responds to this expectation. I plan to buy her book and explore this in more detail. Perhaps after I reframe my mind over the fear of tomorrow's surgery.

Yes, I am afraid about tomorrow's surgery. I share this so that others may feel that it is o.k. to share this feeling. But my fear, while it delayed the exams, will not stop me from doing what I must to feel better. It would be too selfish to postpone it any longer. I owe it to Jacob and Antonia to be there. To be wholly there. My father wasn't. So for me the definition of being a good father is - "being there." And I mean this in a very active sense. I didn't let anemia keep me from going to T-Ball with Antonia tonight, nor going to see Jacob's artwork at the Restorative Justice show at Barnes and Noble, nor attending the 5th Grade Band Concert and watching Jacob out and front in the trombone featured, Trombo Mambo. I was taking photos as he demurely looked away. But, when I got back from Toledo at 2:00 today, I slept hard until Jacob woke me up when he got home from school at 4:15. My no napping streak had ended on Monday.

A few folks did come up to me and congratulate me on presenting an inspirational talk. I thanked them and was happy. When I was a professional consultant I use to joke that my eighty percent was as good as most competitor's one hundred percent. It was a way to convince myself that it was okay to be overextended on work obligations. Today I was able to reach down and present an 11 hemoglobin show, even though I was at 9.3. At some level, I still have it. I will take any day on the stage helping dialysis patients irregardless of anemia.

I'm certain that my next post will be celebrating life in the gym or out on the water. Well, maybe if I can find one of those inflatable donuts to sit on.

Dialyze for the Prize!

I'd rather be canoeing

2010-05-06T12:50:00.000-07:00

Despite being on dialysis I see myself as a relatively healthy, yet rotund, middle age guy. The training that I started in January has increased my strength and self-esteem. I recently golfed eighteen holes with my longtime bud Joe. I walked the Susan Komen Race for the Cure with my family clocking in ten minute miles despite having to reach for snacks for the kids every ten minutes and adjusting their clothing every fifteen. I canoed across Lake Lansing a couple of times which includes loading and unloading my seventy five pound canoe. And, I've been going to the gym twice a week.   All these activities transpired within the last three weeks. Not bad for a guy who has been on dialysis for ten years.

This is the guy that I like to see me as. However, there is a guy living a parallel life. This is the guy with the disease. This guy picked up the phone yesterday and heard Alicia, his transplant coordinator at the University of Michigan, say that his recent EKG was abnormal and that his listing for a new kidney will be on hold until it gets it sorted out.   He heard this on his way to a surgeon consult who with an intern watching gave him the old digital one-two, which felt like five, while pointing out that there is active bleeding to his colleague. "See the red stuff there?" Of course this guy responded when asked if I minded the intern's presence with, "anything for the annals of science." Rim shot, please. I was at the transfusion center the other day and as the nurse completed the IV set she said, "that slipped in easily." To which this guy said, "that is what my doctor said." Rim shot, please.   I'll be here all week. Tip your waitresses, please.

This other guy has to deal with the lack of stamina. While exercise Erich can't wait for the next workout. Diseased Erich has to wonder why he is exhausted for two days after his workout. The answer is pretty simple. It is because my hemoglobin, or red blood, count dropped down to 10.00, again. It appears that the rear leak needs to be addressed. I assured my wife that I would leave the South Park humor behind me as I addressed this sensitive subject. I tried.

There is a chance that my fatigue is due to my mysthenia gravis coming out of remission. I was diagnosed with MG while completing my undergraduate at Western Michigan University many moons ago (1989). I thought the dressing my wife had made was just too sour and that was why I had trouble moving my mouth and swallowing. Though I couldn't link the double vision to the salad dressing. Now that was challenge driving. MG also causes weakness in the shoulders and arms. Thanks to an attentive physician's assistant at the WMU Health Center I was soon in the care of neurologist. The steroid treatment only succeeded in transforming me into what my friends lovingly referred to as my Stay Puff Marshmallow period. Not really enjoying this we went to Plan B. Plan B consisted of cracking my chest open and removing a little, apparently not so necessary, organ called the thymus gland. That did the trick. Along with a little medicine, I later hiked the back country of the Grand Canyon and basically lived a very active life, well until the kidney went kerplooie. If we successfully improve the anemia and I'm still fatigued I will get a neurology consult. I want to make sure I'm able to paddle for fourteen days.

I am scheduled for a Dobutamine Stress Test later this month and hopefully will be cleared for action and to get off the hold status on the transplant list.

Next Monday I have a meeting with Kidney Transplant Department Head at the University of Michigan. This was scheduled before I found out about the EKG. I hope to find out if there are new procedures for desensitizing my high level of antibodies and addressing my FSGS if a kidney does become available. At nine years on the list I'm at the top, however, because of my past two transplants I have a high level of antibodies which will promote rejection of new tissue.   And of course, the FSGS just shuts the kidney down immediately. While a transplant that works would be great, the odds of getting one to work are not high for me. So, long ago I came to terms with being on daily nocturnal hemodialysis as a way to stay alive. That is why I say, dialysis is the true gift of life. I'm proof.

I was scheduled to see my trainer Roxanne today. I was already to work out when Andria reminded me that I should tell her about the EKG. When I told her we agreed it would be best to wait for the results of the stress test before I went back to the gym to push it. Instead of working out, I went to Woody's Oasis, my favorite Lebanese Restaurant, and had an eggplant sandwich.  It lifted me spirits a bit.  I have been enjoying Woody's food since 1989.

I'm not complaining. But, because I truly want to inspire others with chronic illness or kidney disease to take control of their illness and get outside and be active, I figure I have to keep it real. The reality is I like the exercise me much better than the diseased me. I have to live with both.

As I was leaving Roxanne complimented me on how well I was taking the news about the abnormal EKG. I held back a laugh and told her that after ten years of disappointing health news - twenty if you include the infertility - I have developed a calm wait and see attitude. The miracle of the human body is its resiliency both in mind and body.

Jacob and Antonia will be coming home soon so I need to find my healthy Erich self. It won't be hard. Just being with my children brings joy which is always a stimulant. Time to post and step outside to walk to meet Jacob at school and then Antonia at the bus stop.

Dialyze for the Prize!

I put the boat in the water

2010-05-04T11:34:00.000-07:00

When I got back from our Florida Spring Break trip I knew it was time to start canoeing. I felt a little guilty that I found time to take a wave runner a mile offshore of Fort Myers Beach with my children but didn't find time to kayak the backwaters. Either the weather didn't cooperate or the kayaks weren't available each time I tried.  Back in Michigan the only challenge was whether or not I could get my Mad River Adventurer on top of my Highlander by myself.

After adjusting the car top carrier so that it was hanging six inches past the driver's side on my monster 78 inch Thule bars, I attached the canoe brackets. I had a new found vigor as I crawled all over my car to make the adjustments. Last summer I was exhausted just thinking about putting the canoe up top. After everything was just right it was time to see if I could hoist the 75 pound polyethylene boat over my shoulders and on to the car. I situated the bow behind my car then turned and lifted it over my head. With me squarely underneath in the middle of the boat, I tossed the bow on top and slid the canoe forward until it is over the hood. Wow! I couldn't believe it. Being able to load my own boat makes the idea of canoeing a delightful anticipation. Roxanne, "thank you." I owe this ability to my trainer who has been working my core since January.

Who is Roxanne you might ask? I know early on I used the pseudonym Vicky. That was because I was anticipating a love-hate relationship with my trainer. She would push me and I would hate it and then with any luck I would love the results. After five months of training I am happy to report it is just pure love. I love that I can get my boat on my car. I encourage anyone in the East Lansing area who would like to get in shape to hook-up with Roxanne at the Hannah Community Center.

After I secure the boat I drive over to Summit Sports so that the fellows there can check my work. Last year I used foam feet and the luggage rack of our Minivan to carry the canoe. The banging on the roof as the boat bounced along as we headed north drove Andria crazy. As she sat in the passanger side I could tell she was just waiting for the canoe to fly off the roof and cause catastrophe on the freeway. The reason I could tell this is because she wouldn't stop sharing her fear - "I don't like this, it is going to fly off.  Does that sound right? I don't think so. Maybe we should pull over and check. Yep, pull over." The boat never did move more than a few inches, but to make sure I had the Thule figured out I thought it wouldn't hurt to have the experts confirm it.

From Summit I travel a few miles over to Lake Lansing for my inaugural trip. There will be a lot of flat water on the Grand River because of a number of dams. Flat water is when my nice free flowing river that will be carrying to Lake Michigan turns into a lake. This is where I will have to rely on my core training and whomever paddles with me to help me not fall too far behind.

It is a beautiful 70 degree day and there are a number of people out at the boat launch enjoying it. With pride I expertly remove the canoe and place it at the waters edge next to the dock. I pull my Highlander into the parking lot and place my Blackberry, wallet and keys into my dry bag and head toward the water. Now the day is beautiful but there is a strong wind out of the southwest putting a two foot chop on the water. But, I know I have a sturdy boat and heck, I already have it off my car ready to go. I pull the boat into the water and from the dock I carefully put my hand on the left gunwale. As I do this the boat starts drifting away from the dock due to the strong breeze. I quickly pull my body into the canoe. As I do this, the momentum created by the thrust of my 220 pounds from the dock launches me over the canoe and into the lake. The water is cold.

Undaunted, I right the canoe and pull it onto the ramp. I am expecting to see some smiling faces and hear some laughter, but I all see is concern. Apparently watching a fat man in a little boat go for a swim isn't as funny to them as it was to me. I laughed through my chagrin. With my pride in check I assure anyone who is listening that I'm ok. A fellow comes over and helps me lift the flipped canoe up to get the water out. I thank him.

I imagine what is going through the onlooker's minds as I right the canoe and once again slide it into the lake next to the dock. "Is he out of his mind?" "Florence, are you getting this on your IPhone?" "I bet he does it again." "Shouldn't he get a bigger boat?" The weather was warm and I was determined to get on the water. In a few short months I would be canoeing 225 miles. I needed to see what I could do.

With the canoe aside the dock again, I grabbed the left gunwale and in a much quicker and more fluid move I sit down in the middle seat of the Adventurer. The boat sways but holds. I paddle out past the dock and am met by the southwest wind which immediately sends my bow to port wanting to push me across the lake. I again put my core training to work as I paddle wide and strong to my port side to point the bow into the wind. I stroke hard through the white caps and set a course to the west side of the lake in the direction of the wind. I figure that if I get fatigued I can ride the wind back to shore and hopefully land near the dock. This turned out to be a challenge as the gusts are such that waves smash the bow and spray kisses my face. It is a challenge that ignites the adrenaline that had long been dormant in my dialysis body. It is the feeling that I have to master this or I will be in deep doo doo, er water.

After getting half way across the lake I realize that I was spent and had to get back in time to pick up Antonia at school. "Oh, oh time to bring it around." Remember the season two closing of Hawaii Five-O when the credits roll over an outrigger canoe as it is madly paddled ahead of the waves? To anyone looking on I'm sure my actions didn't elicit that memory, but for me in the boat, the theme song tracks in my mind. I grasp the handle and paddle like crazy to make sure I stay on top of the waves and get back to shore in time. The shoreline comes upon me quickly and I have to deftly maneuver the the Adventurer so that I don't overshoot the dock and then have to drag the boat back upshore to the car. Redemption. I glide the boat so that despite the wind the right gunwale synches up nicely to the wooden dock. I not too glamorously extract my tired self on to the dock by placing my hands on the wooden slats and hoisting my body upon it not unlike a sea lion at San Francisco's Pier 39.

I had completed my inaugural training run. I felt good. Tired, but good. I excepted it when a man sunning himself on a bench offered to help me put the boat on. I knew theoretically I could but wasn't sure at this point and was in a hurry. I Thanked him and tied it down.  It took twenty minutes to get across town to Antonia's school. I had thought to bring a t-shirt to change into in case I was sweaty. It hadn't occurred to me to bring a change of shorts and underwear too.  I was rusty. Back when I canoed regularly I always had a spare change of clothes packed in a dry bag onboard. Note to self.

I get to Antonia's school just as they are letting out. As I step out of the Highlander, a little soggy, I swagger to the school with the silent satisfaction that I had challenged my abilities. This was something I use to thrive on, whether it was skiing, biking, canoeing, hiking, I loved taking it to the limit. My limit as a 44 year old dad on dialysis is a bit more limited but the feeling of reaching it is the same - gratification.  As usual, Antonia crosses the street with the crossing guard and jumps into my arms with a delightfully loud, "Daddy!" I smile and give her a squeeze. Life is good on dialysis.

Mid-Michigan Patient in Charge

2010-05-03T15:23:00.000-07:00

Summit Sports Demo Day is this Thursday at Lake Lansing

2010-05-03T10:51:00.000-07:00

If you don't have a boat or are looking for an upgrade check out "A Summit Sports Demo Day is an excellent way to discover which kayak will work best for you. Our expert staff and technical assistance will help you narrow your choices, but paddling the kayaks will help you decide. For virtually every kayak we sell, we ...have at least one in demo. We bring our whole fleet of kayaks, so there’s many for you to test drive. This is absolutely the best way to buy a kayak." This Thursday 12:00 - 6:00.

Kiitos CarbonexAB

2010-04-27T07:54:00.000-07:00

Thank you to my first international Corporate Crew member, my friends at the Finnish Company, Oy.Carbonex.AB

Thank you to our new sponsors Doggy Daycare and Spa and Lafolette Architects, Builders Interior Designers

2010-04-24T15:22:00.000-07:00

Thank you to our two new generous Corporate Crew Sponsors:

Doggy Daycare and Spa located 5325 W. Mount Hope Highway in Lansing, Michigan. Our seven month old Chocolate Labrador Cassie has a blast at Doggy Daycare.

and

LaFollette Architects, Builders and Interior Designers located at 145 W. Grand River in Williamston, Michigan. They have been Green Builders for twenty years.

With their contributions we now have raised $2,405 toward our $20,000 goal.

If you would like to join these great Corporate Crew Sponsors just make a contribution of $200, $500 or $1,000. You can make a check to the National Kidney Foundation and mail it to me or use our secure fundraising page.

Thank you Doggy Daycare and Spa and LaFollette Architects, Builders and Interior Designers.

Dialyze for the Prize!

Erich

I need Paddling on Dialysis Crew Members

2010-04-20T07:17:00.001-07:00

Dear Riverdudes:

Thank you so very much for your incredible support for the National Kidney Foundation of Michigan over the past nine years. With your generous help we have raised over $54,000. An awesome accomplishment.

To celebrate my 10th year of extra life, I want to do something big. I want Jacob and Antonia to be able to say, "My Dad did that." So I've linked my love of rivers with my need to help find a cure for kidney disease and will be canoeing 224 miles from the beginning of the Grand River to Lake Michigan with the Grand River Expedition http://michigan.sierraclub.org/issues/greatlakes/articles/GRE_Admin.html

And, in so doing I hope to raise $20,000.

I need your help to accomplish both of these goals.

1. I would welcome you again to be on the Riverdude Crew. I would love to have you walk with me:

Date:	Sunday, June 13, 2010
Location:	Potter Park Zoo
	Lansing, MI
Check In Begins:	12:00 pm
Walk Starts at:	1:30 pm

You can join the team at

http://donate.kidney.org/site/TR/Walk/Michigan?px=1006841&pg=personal&fr_id=2860&et=zAhRzmctrVTfaMOlPHo19A..&s_tafId=32401

If it doesn't work as a hyperlink just cut and paste or link to it from my blog http://paddlingondialysisforkidneyhealth.blogspot.com/

If you have already made a donation please sign up and join me. Once you sign up please ask at least ten people to sponsor you for $10.00. I will send you a donation envelope or you can set up your own secure funding website. I can do this for you if you like, just let me know.

If you can't make it to Lansing for the Walk or the Paddling, you can still join the Riverdudes as a virtual paddler and still raise funds.

2. I would like you to join me for a day on the river. Andria is pretty adamant that I need to paddle with someone so that I don't fall behind. While I doubt I will, I respect her request. Please sign up to paddle with me on one of the days July 15 through July 26. We will have a shuttle service to take you back to your car after we reach our destination. You are welcome to spend the night and be part of the festivities too, I just need to know. There is a $20.00 cost to cover lunch and insurance and a water bottle for your participation. The Paddling on Dialysis for Kidney Health t-shirt is on me. You can canoe multiple days if you like. Just let me know

http://michigan.sierraclub.org/pdfs/GRE2010_Itinerary_revJul09DC.pdf

I'm not sure what I'm doing yet for accommodations since I will be doing hemodialysis each night. I may have access to a travel trailer or I may based out of centrally located hotels. I'm still working on that.

I appreciate all that you have done for kidney disease research and education and look forward to you joining me on these very special events.

Warm thoughts, Erich

Hyvä Dialyysi Ystävät

2010-04-19T07:28:00.000-07:00

I was asked to write a letter to Finnish dialyzors to give them an idea of what it is like to use the NxStage System One home hemodialysis machine - which I use. The letter is below. When my friend Anu sent back the Finnish translation I used Google Translator to see what I said. To my surprise libido translates to manhood. So with my list of things I lost while on three times a week dialysis in clinic came the words, "menetin miehuus" - I lost my manhood. I quickly read ahead to see where I say I gained it back. To my surprise that part ended up on the editing floor. Now when I go to Helsinki, people are going to see me and shake their heads saying, "Miesparka menetti miehuutensa. Niin surullista. Erityisesti hänen vaimonsa." Tranlation - "The poor fellow lost his manhood. So sad. Especially for his wife."

I emailed Anu and asked her if it wasn't too late to please insert a sentence saying that once on NxStage he regained all that he lost and then some.

I haven't heard back yet.

Dialyze for the Prize!

Erich

April 18, 2010

Hyvä Dialyysi Ystävät:

I am excited that you will soon be able to do short term daily dialysis using the NxStage System One. This home dialysis machine changed my life. Just last week my family and I came home from a ten day trip south to Florida for the warm beaches. I easily packed up my eighty-pound System One and put it in the back of our car and off we went. When I got to our hotel, NxStage had already delivered the bags of dialysate and the cartridges that I would need to dialyze.

Having been on dialysis for ten years, starting when I was 36 years old, I really appreciate being able to do dialysis in my hotel room with my family. Instead of spending four hours away from them hooked up with strangers in a clinic, I was driving a wave-runner a mile offshore with my children in search of porpoises – we found them too. A month a ago I put my System One on a plane and flew to Seattle to speak at a dialysis conference. Traveling is very enjoyable and easy using the System One.

I have been on all types of dialysis including using a traditional machine at home, peritoneal dialysis and three times a week hemodialysis in a clinic. I have had two kidney transplants the first from my wife. Unfortunately they each failed almost immediately due to my kidney disease. For me dialysis is the true gift of life. I adopted my newborn daughter while on dialysis and I am able to be a father to my now six year old daughter, Antonia and my ten year old son, Jacob and husband to my wife of twenty-two years, Andria because of dialysis.

But, I didn't do all that well on traditional hemodialysis. I never felt close to what I felt like before the loss of my kidneys. I was often tired and would crash after taking off four to five kilos. I losed my libido. While I was thankful to be alive, I knew there had to be something better. I wanted to thrive. I wanted the life I had before dialysis.

Then one day while reading a nephrology magazine I saw an add for NxStage. Before long I had my doctor enroll me in a training program. After three weeks of training I was ready to come home. I have to admit that learning to cannulate myself was the hardest part. But I knew if I could get past the needle sticks I could go home and dialyze with my family. It didn't take long before I was feeling better than I ever did on three times a week. In fact, soon after I even found my libido. I wrote a letter to NxStage suggesting that they should market the System One as better than Viagra.

It may be hard to think of having to dialyze more than three times a week. For me, short term daily dialysis entails six days a week at two and a half hours a week. If you don't try it though you will never know what you are missing. More frequent dialysis opened my life to a much more liberal diet and no fluid restrictions. In fact, I'm drinking a Finlandia and tonic as I write this. My anemia is better controlled and I am on only one small dose of hypertension medicine. Dialyzing at home minimizes my exposure to infection. I haven't been in a hospital the entire four years that I have been using the System One. Most importantly, I am looking forward to a long life where one day a long time from now I will walk my daughter down the aisle on her wedding day.

I also look forward to one day flying to Helsinki and dialyzing in my hotel room with my NxStage System One and meeting some of you.

Lämpimästi, amerikkalaisen Dialyysi ystävälle,

Erich Ditschman

PS I really enjoyed watching Peetu Piiroinen's half pipe runs at the Vancouver Winter Olympics.

I have returned

2010-04-16T10:25:00.000-07:00

In preparation for my canoeing extravaganza this summer I recently equipped my Highlander with a Thule car top carrier which has been a point of contention in our house. After ten years of service our Chrysler Minivan finally was ready for retirement. After ten years of driving a minivan I was ready to get back to my driving enthusiasm roots. The contention is not based on the Highlander and a return to my roots, rather it is the piling of stuff on top of it.

A brief automotive ownership history will add some clarity. Prior to the Minivan I drove a Jeep Cherokee. While unreliable it was fun and our Chocolate Lab - Amos and our Golden Retriever - Molson both looked incredible in it, er, I mean there was plenty of room for them. After sometime I sold the Cherokee and bought a bright red Mazda Miata. Flipping down the top made my hour commute from Bloomfield to Port Huron a joy - well at least during the two and half months of warm weather. After two incredible summers with the Miata I sold it in favor of a more practical Michigan winter car, a shiny red Jeep Wrangler which was a blast on the two tracks near our home in Lapeer but not so much fun on my hour commute from Lapeer to Bloomfield. But when you are driving a Wrangler you never complain about the ride, rather you just keep looking for other Wrangler owners to flip the two finger Jeep salute to which really says, “we look cool even though we are doing irrevocable damage to our spinal columns.” We then moved to East Lansing and adopted our baby, Jacob. “Bye, bye Wrangler” and “hello Chrysler Town & Country.” It wasn’t all bad. Even though the Chrysler was a lemon and required constant maintenance it had a ton of room which made life easy when it ran.

So yesterday, I stop and look at the Highlander with our new seven month old Chocolate Lab - Cassie in the back and my canoe on top and think, “I have returned.” To me the vehicle looks natural with a canoe on one side and a car top carrier on the other. Andria, however, thinks the car looks wonderful just as it was when we drove it off the lot. Not to interject favorites, but our son who is now ten years old, said, "Mom, it makes us look active." "Thanks son." To me not only do we look active thanks to this project, I am getting more active.

I knew Andria's concern as I was at Summit Sports contemplating the bar length of the Thule. We have one canoe which has capacity for three. I knew we needed another boat to get all four of us on the water at the same time. I was also thinking about adding a car top carrier to hold the paddles and life jackets and figured we could use it on our upcoming road trip to Florida. My eighty pound NxStage Hemodialysis machine takes a bit of space so I thought we could use some extra storage. The storage worked out great, however, suffice it to say it was probably our last road trip to Florida.

I’m at Summit Sports adding up different configurations of canoe racks, kayak saddles and car top carriers to determine the proper bar length when I look out the store window and see Trey, the store manager’s van loaded with four kayaks on top and I think, “what a beautiful sight.” After a few minutes another vision enters my mind and I think, “think smaller Erich you have to think smaller.” The only way I can figure out getting two boats on top and a carrier is to buy the 78 inch bars which end up over lapping my roof by a few inches on both sides. I left them at the shop until a week before our recent Florida trip, putting off the inevitable disappointment to the last possible minute. Then the day before our trip I put up the sleek black Atlantis cargo carrier. Andria’s sigh was palpable when she came home and saw it. However, suffice it to say we both enjoyed being able to look out the rear window when driving. And, retrieving our gear out of the carrier was a piece of cake. Andria definitely warmed up to the practicalness of the carrier by the end of our trip. It wasn’t until yesterday when she came home and saw that the carrier was no longer centered and was instead hanging over the driver’s side so that I could fit the canoe on the other side which was also hanging off the side that any goodwill I may have garnered flew out the window. I promised her that the good thing about Thule is that they can easily be removed. That is when canoeing season is over. Unfortunately, yesterday I found out that I would not be able to get two boats and the car top carrier all on the roof. I was really thinking that would look sweet. I came to this realization when I was at Summit Sports having Kyle check my rigging. I'll still be able to get two boats on top which will be good. But as I was looking for a small dry bag for my trip out to Lake Lansing yesterday, I saw the solution to my problem - a two kayak trailer. I knew there was a reason I bought a hitch. With any luck, before long I'll look like I own a canoe livery.

"Wow that is more than my whole pay check."

2010-03-23T07:35:00.000-07:00

“Wow that is more than my whole pay check. What do you do?” asked Shondra with an innocent smile. “I’m an attorney,” my wife responded, slightly embarrassed as she swiped her credit card. We were at Sears last night purchasing clothes for our upcoming trip to Florida when we met Shondra. I’ve been thinking of her and that exchange all day.

I think about how much I don’t know about Shondra. Perhaps she has children. Maybe not. She could still be living with her mother, or she could be out on her own. Whatever her circumstances, I’m sure it is very difficult for her to make ends meet. I admire her simple honesty. She masked no pride when she asked her straight forward question. She simply wondered how on earth a family of four could buy so much all at once.

What I do know about Shondra is that she is at a high risk for kidney disease. I can tell this just by looking. She is heavy set and African American. Both of these characteristics place her in the high risk category. For me it is difficult to see people who are at a high risk for kidney failure and not want to help them. I had this same problems in 1990’s with recycling and water conservation. Eventually my friends would put their right hand up and say, “talk to the hand, Erich.” They had received the message and were very capable of making their own decisions - thank you very much. Freedom to choose - this is the American way. It is just difficult to stand by and watch people make poor choices, especially when I know what living without kidneys really entails.

My wife’s answer was equally honest and simple. I’m not sure how it was received by Shondra. Did it explain the situation? Did it register with Shondra as an unimaginable accomplishment? Did it inspire her? I do know that it is a very rare occasion when we purchase that many clothes at one time. Of course they are not just for the trip, but for the entire summer. And, our kids are growing quickly. Yet, something about that brief exchange reverberates in my mind.

Sears is where I did my shopping with my mom when I was growing up. It gives me a rooted feeling that though my personal circumstances have changed, my family is still shopping at “America’s store.” In my youth most of my friends shopped there. Many of us were being raised by mothers with limited income jobs. Tough Skins were the official jeans of the neighborhood.

The exchange reminds me of how fortunate I am. Of course it hasn’t been easy. I don’t think that it ever is. It is all relevant, isn’t it? To explain to Shondra the many times that we’ve been dragged down only to have to pull ourselves up again wouldn’t change anything for her. She would still be amazed that someone could spend what she makes in a couple weeks all at once on clothes.

Despite my medical misfortunes and the hardships they have caused my family, I do feel very fortunate. I was again reminded of this when today I went to my Nephrologist's office and saw a large man in a wheel chair at the foot of the stairs. He was missing his right foot. Diabetes comes to mind, which can often lead to kidney failure. I passed by and ascended the stairs. Which, even though I’m regularly working out, is still a chore. I grab the handrail and meticulously take each step, feeling slightly winded when I reach the second floor. Despite the difficulty, I am grateful that I have my feet and my mobility. Sometimes dialysis seems like a minor inconvenience in light of the burdens of others.

It is this auspicious feeling that drives my desire to give back. It is important for me to do whatever I can to help those at risk like Shondra to perhaps delay or even prevent kidney disease. Sure, after ten years I can say that dialysis is a minor inconvenience. But that is relative too. Dialysis can sap the life out of some - out of many. It certainly shortens life. I can’t help Shondra to be an attorney, but I can help to make tools available to help her to lead a healthier life. The National Kidney Foundation of Michigan offers a Beauty and Barber Shop program that is directed specifically at women like Shondra. The program brings accessible information to a high risk population from a trusted source, their hairdresser. Because of the money we raise, the National Kidney Foundation of Michigan can provide the Beauty and Barbershop program and many others that help real people learn how to live a more healthful and fruitful life.

Please help me to raise $20,000 for the National Kidney Foundation through my Paddling on Dialysis for Kidney Health 225 mile canoe journey. Make a donation today using the link above to my secure fundraising page. Thank you for your help.

Eight reasons why you want to be a Corporate Crew Sponsor

2010-03-21T19:22:00.000-07:00

Thank you to The Hubbard Law Firm for their generous donation of $500.00 to the National Kidney Foundation of Michigan. They are the first company to join our Paddling on Dialysis for Kidney Health Crew Sponsors.

For a donation of $500.00 or more a Crew Sponsor will get this wonderful recognition:

1. Your logo and link on paddlingondialysisforkidneyhealth.blogspot.com/
2. Your logo and link on the Facebook version of Paddling on Dialysis for Kidney Health
3. A shout out on the National Kidney Foundation of Michigan Facebook page
4. Your logo and name on the back of my super cool Paddling on Dialysis Crew T-Shirts and a shirt.
5. Your name on the Paddling on Dialysis for Kidney Health Secure Fundraising Page

and,

6. Your company's logo and name on my kayak skin that Bluefish Advertising will be making for me. That is right, just like NASCAR. Every time I put the boat on my car to take it to the water, your logo will be seen throughout Michigan. Each night during the Grand River Expedition 2010 when I take the boat out of the water, your logo will be seen by local government officials and an engaged public.

But there is more.

7. You will get the satisfaction that you are sending a child on dialysis or with a transplant to summer camp. The satisfaction that you are helping to research cures for this incredibly debilitating illness. The satisfaction that you are educating your friends and neighbors on how to keep their kidneys healthy for a lifetime.

And,

8. You will receive my unending gratitude and I'll be your friend for life.

Once again, thank you The Hubbard Law Firm. Please consider joining them as Crew Sponsors of Paddling on Dialysis for Kidney Health.

Dialyze for the Prize! Erich

Celebrate World Kidney Day - get tested, get educated, share the info

2010-03-10T18:09:00.000-08:00

Gris and Dotcomm will be at the Dialysis Patient Citizens and National Kidney Foundation Congressional Reception. Unfortunately I have to miss this one. I just didn't have the energy to fly from Seattle to DC with all my dialysis gear. . . and I can't leave home withou it. I'm sure me fellow Board Members will have a great time. I do miss storming the Rayburn and Hart Buildings for better kidney care.

Please watch the NBC Public Service Announcement, Spreading the Word.

The Patient as Captain of his Team Dialyzing for the Prize

2010-03-06T11:02:00.000-08:00

I'm here in Seattle for the Annual Dialysis Conference. I absolutely love Northwest Washington. I am eating salmon every chance I get, salmon breakfast burrito, salmon taco, salmon en croute with lemon herb sauce, salmon milkshake (kidding). And, did I mention the coffee? I'm trying to sample them all before I head home. I'm planning to take a cruise of Elliott Bay in a couple of hours. It is sunny and 60 and I can't wait. Unfortunately the Kurt exhibit at the Seattle Art Museum won't start until May.

The last time I was here was about ten years ago. I flew into Sea-Tac with Andria and our eighteen month old Jacob. We spent a few hours, had lunch at the Needle, then headed on to Vancouver for a Watershed Conference. I believe that was the last conference at which I gave a professional paper before kidney disease changed my course.

Well, I'm back in this part of the country to present another professional paper. This time it will be to nurses and medical doctors instead of resource planners, riverine morphologists, GIS specialists, and biologists. I feel fortunate that I have this opportunity to continue doing what I love to do - sharing information with others. This time though I don't have a cutting edge watershed planning tool to unveil, rather just my simple story of how we need to be the leader of our own medical team. The paper is entitled, The Patient as Captain of his Team: Dialyze for the Prize. The last time I gave this paper I had an hour and a captive audience of 150 people. On Monday I will be the eighth speaker in the first of a many two hour concurrent sessions. I figure that gives me eight minutes, tops and perhaps an audience of ten. Luckily, I brought a hand out. If worse comes to worse, I can stand and say, "Good morning, my name is Erich Ditschman, enjoy the handout, and, the coffee break is being served to the left when you exist. If you leave now, you will be first in line." Here it is, I hope you enjoy it.

The Patient as Captain of his Team

Dialyzing for the Prize

30^th Annual Dialysis Conference

Outline

Erich P. Ditschman

http://paddlingondialysisforkidneyhealth.blogspot.com

Objectives With this talk I hope to:

Encourage you to empower your patient to be the leader of her healthcare team.
Inspire you to not under estimate the intelligence of your patient.
Promote you to provide continuing education to your patient so that she has the proper information to make leadership decisions.
Help you to understand that each day your actions will either help us to lead a happy and meaningful life or not.

Premise is that Dialysis is the True Gift of Life. While it is certainly true that a viable kidney transplant can greatly improve one's life and outcome with end-stage renal disease, dialysis, in most cases will keep one from being dead. And, most importantly, that this life needs to be lead by the person sitting in the chair.

Disclaimer Since starting dialysis in 2001, I have made many associations in the renal community and am actively involved with Dialysis Patient Citizens as a Board Member, National Kidney Foundation of Michigan as a fundraiser and on their Lansing Advisory Committee, NxStage as a member of its Advisory Council, and Greenfield as a patient. My comments are wholly my own. Today, I will make some sweeping generalizations and know that they are just that. For every example I give, I know there are thousands of examples that may show the complete opposite of my experience. So with that, here we go.

Help – In the words of two great English philosopher poets as interpreted in William Shatner tradition:

Help, I need somebody,
Help, not just anybody,
Help, you know I need someone, help.

And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I've never done before.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me?

Frequently, patients reach dialysis without time to prepare a dialysis plan of action. Many, like me, crash into dialysis. They are afraid and upset realizing that life as they knew it no longer exists. In this fragile and susceptible state, they accept what options they are provided.

Patient – from Merriam Online Dictionary we find that a patient is an in an individual awaiting or under medical care and treatment, one that is acted upon.

When we are done today, I hope that you will see that the person in the chair is someone who has made it through life until this point without your help. Someone, who is capable of making important decisions if given appropriate information and guidance. Someone, who should be leading her medical team rather than receiving and following directions presented by all her teammates. We all have the ability to lead our lives. Along with believing it ourselves, we need others to believe in our ability.

IMPORTANT POINT “Acted upon” I think that is a very true definition for many renal patients. When you go back to the clinic, please try not to act upon the person in the chair. Rather, look her in the eye and engage her in the process of the procedure that is giving her an opportunity to live.

The patient truly is the Captain of her medical team. So let's climb aboard the good ship Dialysis and set sail for a ten minute cruise over the rocky seas of patient personification.

The beginning of my journey Before the loss of the use of my kidneys I was a husband to my high school sweetheart, father of my one year old son, an aggressive professional at a consulting engineering firm, and a student launching into my doctoral dissertation. I felt like I had life by the horns. I was 36 and everything was finally coming together. In fact, I had been commuting up to 240 miles every other day in order to take classes in East Lansing and work full time in the Detroit area while we lived in thumb. That was reduced to twenty miles a day by moving to East Lansing. Things were looking good. Then one day I noticed my shoes were a little snug. Four months later I was incredibly sick, on dialysis and waiting to receive a new kidney from my wife so that I could get back on track with my life.

Hold the boat - that was where I was incredibly naive. Over the next six years I had more surgeries and medical procedures than I imagined a body would survive. For me there was no, “thanks for the transplant and off to work I go.” Things got very bad. They would get a little better, but then they would get quite bad again. At the time little did I know that things would get incredibly better for me.

IMPORTANT POINT– We all live in the now and it is very difficult to see past the current situation to a better tomorrow. While we are stuck in a cloud of pain and pity we need a guiding light to help us lead ourselves to that better tomorrow. We can't just be hoisted up, carried and deposited in a better place, rather we need to travel the journey for it is only in the journey – struggling to make tough decisions that we will improve our lives - that we can reach a better place, a brighter tomorrow. You need to be our guiding light. At times we need you to shine as bright as a star on a moonless night to help us find our way, but other times we need you to be dim as a 4 Watt night light, a light of comfort on a familiar path. Your challenge is to figure out which one is needed and when and to kindly offer it.

Dialysis

The Choice Once we realized how quickly I was loosing my kidney function we headed to the University of Michigan. I had hoped to get a kidney before going on dialysis. Unfortunately, my function disappeared before my wife and I could undergo surgery. In high school it after a gout attack my kidneys degraded to fifty percent renal function. My failure was never diagnosed.

Except for regular visits to my nephrologist and a relatively low protein diet, I went on living a pretty normal life for the next twenty years. I struggled a year with Mysthenia Gravis in college but a thymectomy put that quickly into remission. For all the times I saw my nephrologist we never once talked about dialysis or transplant. In retrospect, I am very glad that we didn't because I didn't have to spend any time worrying about something that I had very little control over. However, when I crashed and the Physician Assistant at U of M started discussing whether I would want to do peritoneal dialysis or hemo dialysis I was shocked. Neither option had any appeal to me.

At the time, 2001, the U wasn't putting any energy into their home hemodialysis program, so peritoneal dialysis was really the only home option. I want to emphasize how patient the PA was in providing me detailed pros and cons on both procedures. I'm sure he thought none of it was getting through to me since I was looking at him with a glazed over look of disbelief.

IMPORTANT POINT – Just because a patient resembles a doe trapped by the headlight's beam in mid crossing doesn't mean it won't respond if you stop and give it time. Remember, step on the brakes and not the accelerator. Be patient, we may even need to comeback a couple of times. In the words of Liz Lemmon from 30 Rock, when we first hear about it, we think dialysis is a “deal breaker.” However, once we realize it is the only deal in town, then eventually we come around – or we die.

Eventually I too came around an opted for peritoneal dialysis. The ability to be at home was compelling, especially because of our two year old son, Jacob; even if it did mean having to have big plastic tube sticking out of my belly. Unfortunately, the uremia went rampant and I was put on immediate hemodialysis. Once that occurred, we decided to stick with the permacatheter for four months until our transplant surgery.

It will get better Nearly ten years since my first dialysis run, I have now been associated with four different dialysis providers. In each of these associations I have been surrounded by the kindest people I have ever met. It sure seems that to be in the dialysis field is a calling that each of you take very seriously. Thank you for answering that call.

This kindness is so important especially when being introduced to the concept of being tied to a machine, potentially for the rest of your life. To the uninitiated dialysis is a bizarre world. Your kindness helps to smooth the edges.

One nurse at the U in particular kept reminding me that “it would get better.” When I contracted a staph infection sepsis gave me rigors as I sat in my chair, Kathy tucked me in with blankets and said, “it will get better.” Of course, there was no way in hell that I believed her at the time. She would repeat this mantra time and time again as I nearly fainted at the end of the run as we had difficulty finding my dry weight. And, each time I wouldn't believe her, but slowly over a number of months, she was right and things did get better. Keep reminding us that things will get better and that if we take control we can make them much better.

Fast Forward The donated kidney from my wife, which I had named Annie - because my Nephrologist suggested I talk to it, since I guess I had nothing better to do between pharesing and dialyzing as I sat in the courtyard at the U daily for the next four weeks watching leaves slowly emerge on the trees.

Let me tell you, I got quite a few stares as I shuffled my bulbous body along the walkway saying, “Come-on Annie, you can do it, just make some pee.” Anyway, Annie shutdown immediately. Like out of a bad B-Movie, the transplant nephrologist says, “Mr. Ditschman, you have a horrible disease. It is called focal segmental glomerulosclerosis (FSGS) and we know nothing about it.” Upon hearing that, my faith in the medical community crumbled.

Four years later I get a cadaveric kidney transplant at the University of Wisconsin and after five weeks of trying to save it, like my first, it was removed. A biopsy of the second failed transplant confirms that I have recurrent FSGS. Unfortunately there isn't an easier way to diagnose recurrent FSGS.

I think there is this generally shared myth by the healthy public that doctors and hospitals can fix most anything. Of course, you all know that is not true, but most of us once healthy folks don't get it, well not until a doctor comes in and shrugs her shoulders and says, “I got nothin.” At least for people with kidney failure we have something - dialysis and for many transplant.

IMPORTANT POINT – Kidney patients lose faith on a number of levels. It is important to help us regain some sense of faith in the medical community. This can be done by helping us to achieve optimal health on dialysis. Give us fair and unbiased information on all dialysis modalities available in a geographic region, not just available at your center. Give us training in in-center self care and have patience while we work to master self cannulation or setting up our machine. Help us to understand that the more control we regain the better we are going to feel – physically and mentally.

In-center Well with that information, I moved on to in-center dialysis. A dialysis center is a scary place. There are sick people everywhere. There are people buried under blankets. People moaning and calling for a nurse. There are people well, I am not telling you something you don't know. I just find dialysis centers as they are currently configured as a difficult place to feel well. Don't get me wrong, I'm glad we have them, just as a 36 years young professional, I was not prepared for the mind numbing roller coaster that is in-center dialysis. Of course, until you try another modality it is all that you know so you adapt and persevere.

IMPORTANT NOTE – Just because we stopped complaining doesn't mean we don't want better health. In many cases we have adapted to the only thing we know as an act of self-preservation. We need help to understand that more control will make our lives better.

For the next four years I stuck with the U of M even though I lived in East Lansing. I was under some delusional idea that if I stayed at the U, this great medical research institution, where I was again on the list, that I would still be able to successfully return to the life I once lead. I was in total denial.

While I was there, the U resurrected it's home hemodialysis program and my wife and I quickly became candidates to go home. During our training the U was kind enough to install an RO unit and a full size traditional dialysis machine in our little den.

This was a blessing and a curse. I received the blessing, dialyzing in the comfort of my own home and my wife received the curse – setting up the machine, getting me on, watching our then 3 year old son, Jacob, monitoring me, making dinner and breaking down the machine and disinfecting it.

IMPORTANT POINT – At this point I was still feeling fully like a patient (an individual awaiting or under medical care and treatment). I was not mentally nor physically prepared to take responsibility for my treatment. I wanted to be acted-upon. Just like in-center, I looked away and grimaced as my wife cannulated me. The burden of my care had been transferred from the professionals at the U and placed squarely on my wife who had recently had to go back to work as an attorney to help us make ends meet. You need to promote in-center self care as the first step in helping a patient realize that she can be the Captain of her team.

Nephrology News and web based research. Depending on the doctor, information surrounding a kidney disease patient's condition and treatment, seems to be given out in teaspoon doses. Just enough for a patient to swallow without choking on it. Unfortunately, when you end up with a chronic disease that changes your life forever this is not enough. A teaspoon worth of knowledge is not going to fortify one adequately to take control.

Patients need to know there is a vast array of information available which will help them to take better control of improving their quality of life on dialysis. This is not a one time effort, remind patients that these resources exist. Hand fliers to us. Ask us if we've read the latest edition of Nephrology News and Issues. Have it in your lobby. Each time we sit in our chair you can be a conduit to help us take more control of our disease.

While on home hemodialysis with the traditional dialysis machine, Andria and I found research studies that indicated that more frequent dialysis would make me feel better and keep me alive longer. Since we had all the equipment at home it seemed like a no brainer.

BAM! With that simple thought we entered the world of bureaucratic obstacles. Perhaps the seed of independence was starting to sprout, the seed that sent us home in the first place, but we just couldn't take “no” for an answer. The U Medical Director was steadfast in maintaining that we could only use three dialyzors a week despite the mounting medical evidence that more frequent dialysis who give me a better outcome. At the time we knew little about medicare reimbursement, but we offered to pay for a couple of extra dialyzors so that I could dialyze five times a week. Hell, we were doing the all the work, we just needed two more dialyzors. The heated discussions that we had with the Medical Director who was also my nephrologist were disconcerting. They flew in the face of conventions which implied that we should be good patients and do what our doctors tell us to do. How can we do that when we knew I might be able to see my son graduate high school with a little more dialysis. I suppose when mortality stares you in the face, you either wake up and smell the coffee or ask for a fifth of Jim Beam and go back to the couch. I poured a triple espresso and didn't look back to see if the Grim Reaper was in quick pursuit.

After a time, the Medical Director relented and I was able to dialyze five times a week. Of course, this took up a tremendous amount of time. During this period I attempted on numerous occasions to go back to work, but due to complicating issues, like undergoing a nephrectomy, multiple fistula surgeries and a partial parathyroidectomy, I eventually came to the conclusion that I would have to go on permanent medical disability. The once tightly held vision that I would get my transplant and be back to work in a few short months had disappeared for good.

Peritoneal Dialysis - With me being on permanent disability, my wife stepped up her part-time job to full-time. Now with her working full time and me feeling a bit more stable, I was finally able to see what a burden I placed on her by doing home-hemodiaylsis with a traditional dialysis machine. I knew she couldn't continue working full time, taking care our son and dialyzing me five times a week. So, I got a tenckhoff catheter placed in my abdomen and started training for peritoneal dialysis. I'll be brief here. PD is an excellent modality and more people with kidney failure should be encouraged to use it. However, for me it didn't work.

When your patient runs on the machine for eight hours a night and then has to perform at least two manual exchanges, that is a clue that PD may not be the best option. Now, I was able to perform most of it myself and was able to take care of my son, but it took a tremendous amount of work. The other night my son said, “Dad remember when you use to hang your dialysate in the car window?” He had a point I certainly could travel. And, one more extremely important point, my wife and I adopted our daughter, Antonia, from birth while I was on PD.

VERY IMPORTANT POINT – Share stories of empowerment with your patients. I was on dialysis and not even in the kind of shape that you see me now and we didn't stop living. We had always gone to Disney World, both while I was on in-center and on PD. It is easy to do PD in the first aid room. We even took my son to Jamaica while I was on PD. Most importantly, we adopted our daughter while I was on dialysis. We were able to continue to grow our family, to give Andria a little girl, to give Jacob a sister, and to give me my princess. I know you all have to deal with your own trials and tribulations of everyday life, but when you step up to that chair be positive, be empowering.

Over the next two years I gained sixty pounds due to a heavy diet of 4.25% dialysate. It was like having your cake without the advantage of tasting it. I also managed to break one foot each spring. Both of these were signs that maybe PD wasn't working for me.

Back to In-Center After the 2005 failed cadaveric transplant I switched to in-center in Lansing. It had become apparent to me that I was going to be on dialysis the rest of my life and dialyzing at the U wasn't going to change that. I found a local nephrologist, Fareha Kazi and she enrolled me in the only dialysis clinic in Lansing at the time. Dr. Kazi had been one of the Fellows back at the U when I was first transplanted. For the next year we got to know each other as she visited me once a week in-center.

I had known about home-hemodialysis and had even bought some stock in Aksys but because the Lansing clinic wasn't offering home-hemodialysis, I didn't think it was available to me.

Then one day I read about NxStage's System One in Nephrology News and Issues. I checked out the website and before long someone called to tell me that the nearest provider was a clinic in Flint. I called up and by April of 2006 I was training on the System One for short term daily hemodialysis.

On being the Captain – One aspect of being the Captain is that you have to have a willing crew and a top flight First Officer. You need someone you can trust so that when you say, “Make it so, Number One,” there is a steadfast William Riker to properly execute the command. This is the crux of my discussion. The person in the chair is the Captain. Not the doctor, not the nurse nor technician, not the social worker and not the dietician. In my case, Dr. Kazi has been a wonderful First Mate. Sounds weird doesn't it? The doctor is my first mate. It goes against our historically patriarchal medical traditions. But, it is so empowering to the patient. I realize not everyone comes to the chair equipped with leadership abilities, but this is where you can help. If you leave here thinking that the patient is the Captain then the next time you see her you may be more inclined to help her increase her leadership capabilities and to take more control of the quality of her health and life. For many patients, this will require many baby steps and extreme patience. But just because it is difficult doesn't mean that it should not be done.

O.k. if I haven't shocked you enough - then if we as patients do not have a top flight First Officer we need to fire the one we have and hire a new one. Now this may be difficult in rural areas, and it may also be difficult in urban areas where there is a strong patriarchal medical tradition. But, like with any contractor or service provider that is not meeting our needs, we need to find one that does. I'm not talking about not getting enough of what you think you might need, like Oxycontin, or Valium, Percocet. I mean getting the best medical providers to help us help ourselves optimize our healthcare and give us the best possible outcome.

Re-credentialing Dr. Kazi trained at the University of Michigan on traditional dialysis machines. She later joined a Lansing practice that worked solely with the traditional machine dialysis clinic which was the only game in town. The clinic offered PD and only in-center traditional hemodialysis. When I told her that there was a provider in Flint which offered short term daily home hemodialysis on the NxStage System One, she readily agreed to get re credentialed and did. My nephrologist knew that I could get a better outcome on a more frequent home modality and “made it so.” Incidentally three years later, the Flint provider opened an At Home Clinic offering the NxStage System One in Lansing and to the Mid-Michigan dialysis community. Others in her practice are now actively referring patients. Home hemodialysis would have come eventually to Mid-Michigan, but because one patient, the Captain of his team, sought out a better quality of life on dialysis, it came sooner than later.

She would three years later, be re-credentialed again so that I could switch to Greenfield Health Systems which is the only provider in Michigan offering frequent nocturnal hemodialysis of the NxStage System One. I have changed my crew repeatedly as I search for the best possible outcome, but I have been very fortunate to have the same First Officer by my side along the way.

Sometime after restarting in-center dialysis I again strengthened my leadership ability. Instead of slathering EMLA cream on my bicep and cringing and staring away when the technician made the first attempts at cannulating, I did away with the cream and started to watch. I felt that enduring the brief pain of the cannulation helped me gain a little more control. It brought my focus from dream like denial to reality. It allowed me to participate rather than to ignore it. Never when I was with the Lansing Provider did anyone discuss self-care. It simply was not practiced. Later as I learned more about home hemodialysis and the buttonhole technique I shared this with my crew. At the time few had heard about the technique.

IMPORTANT POINT – Self care is a critical first step to being the Captain of your team. Encourage your patients to undergo self care. Teach them how to set up their machine. Teach them to cannulate themselves. Learn about the buttonhole technique and teach that to your patients.

The training was going well except for one thing – cannulation. I wrote the following on my blog, Tasty Kidney Pie, not long afterward.

“The first time I had to stick, I held the surgically sharp tip with my right hand just above the bulging vein in my left bicep. I just held it there. After some time I tried to imagine my hand moving forward at the correct angle. I tried not to think about the razor sharp metal slicing layers of skin until I felt a “pop,” the feeling described to me when the needle bursts through the vein wall allowing blood to flash into the connected tubing. I was instructed that at that point I would know when to stop pushing. “But, how would I know?” “What would keep me from continuing right on through the opposite wall skewering the Triceps brachii like some tender piece of marinated tenderloin?” The answer given was that I would just know, which was comforting, not!

Now four years after cannulating myself, currently with one buttonhole and one regular stick, I look back an realize I under went significant needless pain as technicians first tried to stick me and were unsuccessful, then nurses, and then finally the cannulating expert nurse. Not only did I suffer, but it wasted a significant amount of staff time. I wish I had been taught self-care when I first started dialysis.

At Home – Short term daily dialysis with the NxStage System One as made an incredible difference to my life. My phosphorous which was always a bit difficult to control, even with a proper diet, greatly improved. My hemoglobin stabilized. My children could now sit on my lap as I dialyzed. When we traveled I no longer had to leave my family for four hours every other day and suffer through another couple of hours as I recovered from the dialysis crash. My energy level increased and I was able to be more active in my community and at my children's schools. Music again mattered to me. I found my libido, which I am sad to say that when it is lost, you really don't care. I was so grateful for this I wrote the following email,

“I'd appreciate you forwarding this brief note of thanks to Jeffrey Burbank, President of NxStage Medical. I am grateful for the System One, but, one thing that I'm really thankful for, which you don't see too often on the renal list-serves, is the return of my libido. I'm note joking here. When it is gone you don't really miss it, but when its there you wouldn't want to lose it for the world. So, Jeffrey thank you very much. By the way, I mean this in the purest sense. I married the girl who became my high school sweetheart in 1981. Anyway, you may want to pursue this angle a bit more in your marketing. Who needs Viagra when you have a NxStage instead of one of those three times a week machines? Thanks again. I think I hear my darling calling. Erich Ditschman”

By the way I received a nice response from Jeffrey.

IMPORTANT POINT – It is difficult for a patient undergoing three times a week traditional dialysis to appreciate the benefits she receives. Because the benefits often do not exceed a marginal lifestyle. It is almost impossible to convince them that doing more will make them feel better. It is difficult for a patient enduring the burden of dialysis to see that adding to this burden will make them feel so much better that they will crave more dialysis. But, once you sample it – get a taste of your old energy levels, it is addictive. I believe that many people will say that they don't mind three times a week in-center because they simple don't know anything else. Just like not missing my libido, until after I actually got it back.

The most important benefit to switching to at home hemodialysis for me has been the I have potentially given myself the gift of a longer life. I remember when I started at the U I calculated that based on the average lifespan of dialysis patients that I would be lucky to live to 55 years of age – that is a little over ten years from now. My son will hopefully be in college and my daughter will be a fifteen years old and sophomore in high school. I cannot imagine not being there for them or my high school sweetheart.

It takes work While there are many benefits to home hemodialysis, it is not a piece of cake. We service our machines, take, load and store inventory, we sterilize and disinfect, when we travel we transport and set up our machines, owe troubleshoot problems, order supplies, we have to go to clinic which in my case is now over an hour away, we have to recycle and dispose of our waste. It is a lot of work to do home hemodialysis. Not half as much work as it was with the traditional machine, but it is work. However, it is in that work that we are taking control, that we are captaining. But feeling good is addictive and it is certainly worth it.

As part of a Yahoo NxStage User list-serve that I co-moderated, I began to learn more about fellow patients who had switched to nocturnal home hemodialysis on the System One. Research that I read about in Nephrology News and various National Kidney Foundation peer reviewed journals began to indicate that frequent nocturnal dialysis may offer the same outcomes as those of cadaveric kidney transplants. While I'm on the list again at the U, I'm not certain I am willing to trade my stability and long term outlook for a huge dose of immunosuppressive drugs and a lengthy hospital stay without much promise for success.

The Flint Provider opened its Lansing Clinic just as I started exploring the options of using the NxStage for nocturnal dialysis – or in the current vernacular, extended dialysis.

Unfortunately the Flint Provider was not prepared to offer extended dialysis with the System One. Again, I had to change crews to seek out a better outcome for me and my family. And again, Dr. Kazi re-credentialed herself and continued by my side.

IMPORTANT NOTE Even though my nephrologist has been an incredibly supportive First Mate, she did not offer me the changes in dialysis modality that I eventually sought out. Each time, I lead the way to better health for myself. This is why we must be the Captain's of our teams. We have our best interests always at the top of our list. We only have one patient to worry about.

So since April I have been a patient at Greenfield Health Systems, where through frequent nocturnal dialysis I have regained a tremendous amount of my old self. I feel the best that I have since I lost the use of my kidneys nine years ago. My potassium which was still a problem using short term daily and following a strict diet is now wonderfully within limits. My energy levels have even improved over what they were with short term daily. And, best of all, I no longer have to commit 3 hours six days a week to dialyzing. I now have time to make nutritious and tasty meals for my family. I can take on more responsibility at Dialysis Patient Citizens, and under take more local volunteer opportunities. I no longer worry about whether I will see my daughter or son graduate or get married. I feel like I am living a much more normal lifestyle – of course accept for the needles in my arm and the machine next to my bed. But for the most point, I think of my System One as a glorified toilet. Just like you don't think much about flushing a toilet, I don't think much about hooking up to my System One. It is just something I use in the course of the day. In fact, I felt so good that I relinquished my duties on the NxStage Users list-serve because my days were filled with much other non dialysis activities. I no longer wanted to spend the time talking about my glorified toilet. I wanted to live my life as I once had.

Conclusion I got to this point by being the Captain of my team. Please try to treat each of your patients as the Captain of their team. Help them develop leadership capabilities if they are scarce. Have patience with us. Teach us self care. Share information with us. Help us to lead the way to better health, to a longer life, to happier place. You can do it and continue to do it each time you see us. Your patient is the Captain of her team.

Captain of my own boat Not only am I the Captain of my own team I am now the Captain of my own boat. 2010 will be my tenth year on dialysis.

To mark the occasion I am going to get into shape so that I can join the Grand River Expedition 2010 which will lead scientists, educators, local officials, river enthusiasts and at least one fellow on dialysis from its headwaters near Jackson, Michigan to Lake Michigan at its mouth in Grand Haven 225 miles downstream. I am also raising money for the National Kidney Foundation of Michigan.

I'm proud to say that my NKFM Walking Team, the Riverdudes, has raised over $54,000 since we started in 2001.

To celebrate my tenth year on dialysis I pledge to raise $20,000 for NKFM with your help and the help of the Riverdudes.

Prior to having my kidneys suddenly fail I was a watershed management consultant working to protect rivers and the lands that drain to them. Back then I use to talk about how we needed to preserve wetlands since they were nature's kidneys working to improve water quality and manage flow. Well now, I'm talking about human kidneys and how we need to protect them for pretty much the same reasons. The 2010 Grand River Expedition will stop in communities along the way and set up mini-river festivals. With my friends at NKFM we will join the festivals to encourage people to take good care of their kidneys and to protect wetlands too and to get out and enjoy the river. For the past ten years, I haven't done any river work, other than paddling with my ten year old son and my six year old daughter, rather I've been working with a number of groups to improve the lives of dialysis patients. When I first started river work someone who recognized me in a grocery store, shouted, "hey, Riverdude." The nickname stuck, so I'm proud to say that in 2010, the Riverdude will reenter the waters to again help protect the river and kidneys too.

I'm paddling 225 miles on the Grand River and raising $20,000 for kidney disease research - I need your help

2010-03-02T17:50:00.000-08:00

2010 will be my tenth year on dialysis. Ten extra years of life, that is phenomenal. Not as phenomenal as say twenty years oreven twenty five years, but, it sure the heck beats being dead.

To mark the occasion I am getting into shape and joining the Grand River Expedition 2010 which will lead scientists, educators, local officials, river enthusiasts and at least one fellow on dialysis from its headwaters near Jackson, Michigan to Lake Michigan 225 miles downstream. I am also raising money for the National Kidney Foundation of Michigan which is the nation's premier organization working to prevent kidney disease and to improve the lives of those who are suffering from kidney disease.

I'm proud to say that my Mid-Michigan NKFM Walking Team of which so many wonderful friends have been apart of over the years, the Riverdudes, has raised over $54,000 since we started in 2001. This couldn't have happened with your help. Thank you.

To celebrate my tenth year on dialysis I pledge to raise $20,000.

Prior to having my kidneys suddenly fail, I was a watershed management consultant working to protect Michigan rivers. Back then I use to talk about how we needed to preserve wetlands since they were nature's kidneys working to improve water quality and manage flow. Well now, I'm talking about human kidneys and how we need to protect them for pretty much the same reasons. the 2010 Grand River Expedition will stop in communities along the way and set up mini-river festivals. With my friends at NKFM we will join the festivals to encourage people to take good care of their kidneys and to protect wetlands too and to get out and enjoy the river.

For the past ten years, I haven't done any river work, other than paddling with my two childrenm Jacob and Antonia and my wife, Andria. Rather, I've been working with a number of groups to improve the lives of dialysis patients. When I first started river work someone who recognized me in a grocery store, shouted, "hey, Riverdude." The nickname stuck, so I'm proud to say that in 2010, the Riverdude will re-enter the waters to once again help protect them and kidneys too.

There are four ways that you can get involved:

1. Make a donation through this link above.

2. Join The Riverdudes Walk Team and collect funds to help us reach our goal. We will be walking at Potter Park in Lansing on June 13. Let me know and I will happily sign you up.

3. Join me for a day on the river. The Grand River Expedition will be held the last two weeks of July. I would love it if you would consider paddling with me for a day as we make our journey from Jackson to Lake Michigan. Just let me know which day you can join me. You can also raise funds in support of our goal by joining the Walk Team even though you will be paddling rather than walking.

4. Become a virtual member of my crew. Join the Walk Team but because of timing or distance, just help raise money. If you can't walk or paddle with me, you can still be a part of the crew.

The money you donate to NKFM is used for research into cures and better treatments, sending kids on dialysis and with transplants to camp and educating at risk populations about how to reduce their risk to kidney disease.

Please donate $100, $50, or what you can today.
Thank you for helping me with this great project.

Dialyze for the Prize! Erich

It all ends up in the Grand River

2010-02-24T09:14:00.001-08:00

No more red wine?

2010-02-14T18:25:00.000-08:00

I had every intention of exercising today, Valentines Day. It has been seven days since I was at the gym. This so reminds me of my Catechism days at St. Joseph Catholic Church in Port Huron. "Father, it has been seven days since my last gym visit. Please forgive me for not exercising my body. I know His body was given up for me and I can't even show a little respect and get my body on an elliptical trainer." I haven't seen a confessional in All Saints Episcopal Church, the church that my family now attends, so I guess this blog will have to do.

There I feel a little bit better, but I'm guessing not as good as I would if I had actually went to the gym.

There was a moment when I was at Mitchell's Fish Market after finishing my second glass of Chardonnay but before ordering a slice of key lime pie, that I was feeling pretty motivated. I was thinking to myself that as soon as lunch was over, I would go to the fruit market to stock up for the week and buy some roses - since the early Valentine tulips were fading fast and tomorrow is also Andria's birthday, come home and then head over to the gym.

It was one big slice of key lime pie. I still don't understand why the waiter brought two forks. So, after lunch I was feeling pretty cozy, but still had my plan ready to execute. In fact, the rest of the afternoon went accordingly until I came home and was greeted by a frantic Andria who was desperately trying to finish writing a presentation while keeping our overly excitable six month Chocolate Lab, Cassie, from her enthusiastic mock chewing of our children's extremities. I got the sense that it wasn't the right time to leave again. Now, I wasn't born with such an acute sense, it took, let's see - I've been together with Andria since 1982 and it is now 2010 - well, twenty-eight years of Navy SEAL like training to achieve what I like to call "complete spousal awareness." My buddy's have a different term for this zen like heighten sense of support. They just crack an air whip and make a kershwip sound as if I am supposed to know what that means.

I suspect what is really going on is that my hemoglobin slipped a bit to 10.3. After ten years of trying to manage kidney disease I have become very aware of how I'm feeling based on what is happening with my body. At first it was extremely frustrating when my body just wouldn't respond to what my mind was asking of it. But after years of frustration I eventually came to understand that at times like this it is better to ride it out, own up to these biological shortcomings and float until they are corrected rather than to be angry. In a fast pace world this was not very easy. Though, my world slowed down without my permission. I had no choice but to adjust. And, it has been much better since I have. However, blogging about not exercising wasn't the intent of Paddling on Dialysis for Kidney Health. It is though, an honest portrayal of life with kidney disease.

For those of you who know me, you might have noticed I said Chardonnay rather than Shiraz or Cabernet Sauvignon. Well the results of that endoscopy gracefully showed no cancer, but apparently I don't have my own esophagus. Rather, I have Barrett's and that is unfortunate because he is not allowed to drink much coffee or wine, especially red wine. Now I just received a wonderful Keurig one cup coffee maker for Christmas and joined the Green Mountain Espresso Club. I have been having a delightful time brewing deliciously dark and bold fair trade coffees throughout each day and ending it with a class of healthful and warm Jacob's Creek Merlot or Shiraz or Cab. And if writing is on schedule for the night, perhaps two - one for me and one for Ernest H's spirit. Of course, I have been walking around with a frown from being anemic and having an upset stomach most of 2010. So, perhaps there is something to Mr. Barrett's Esophagus. Thank goodness lent is fast approaching, perhaps now is a good time to give up - mmmm, how about carbonated sodas - they are on the list too.

As if meeting Mr. Barrett wasn't enough. After having a rather delicate discussion with my beautiful Nephrologist about a very sensitive area of mine, I now have to go meet Dr. Butt Surgeon next Wednesday. "Ya got trouble, my friend, right here, trouble I say, trouble right here in River City." Were talking about the mouth of the river, my friend, the end of the line, the place I fear to be and that rhymes with P that stands for. . .

Now it doesn't matter that I have had two kidney transplant surgeries, and two failed kidney transplant removal surgeries. I have had my chest cracked open to remove my thymus gland - that helped with the Mysthenia Gravis. And, I have had multiple fistula surgeries and an emergency appendectomy. Those were small potatoes compared to this new area of concern. I absolutely do not look forward to hearing these three words, "Please bend over." Unh, Unh. I don't want to hear it, and I certainly don't want to do it. But, I realize that if I'm continuing to loose blood that that is just not a sustainable thing. So just like facing that colonoscopy head on er ass on, I will have to face my fears bend over, hold my ankles (well I can't quite get there yet) and . . .

I'm sure I will appreciate my bravery when I'm having to sit in a canoe for 225 miles.

With my pity party firmly behind me. And, after Wednesday I'll let you know whatever else is behind me. It is time to look forward to a week of great intents on getting to the gym. It helps tremendously to hear from you. The many words of encouragement that I get here and on our facebook page helps immensely. Thank you.

Additionally, I am now collecting the names of volunteers who would like to paddle with me for a day during the Grand River Expedition. While we will be canoeing with a number of individuals, Andria and I agreed that it would be great if I could have a companion to share the river with each day. I see it as a great opportunity to spend a day with a friend on a meaningful and beautiful summer river boating excursion. Please let me know if you can join me for a day during the last two weeks of July.

Also, we will be launching the fundraising aspect of this project. When I went to buy Antonia's corsage for the Daddy Daughter Dance last week I ran into a neighbor who remembered me from my early days of fundraising for the National Kidney Foundation of Michigan. She said, “didn't you have that picture of your children as frogs?” Here it is, a picture from the early days of The Riverdudes National Kidney Foundation of Michigan's fundraising team. Enjoy and happy Valentines Day.

A brief shiny moment

2010-02-08T19:32:00.000-08:00

Well I wouldn't say I'm a gym rat. I'm not even a gym mouse. What I can say is that I went to the gym today.

There was a brief shiny moment last week when Antonia, my five year old daughter, and I were walking Cassie, our six month old Chocolate Lab. When we got to the end of the block the three of us turned and started to run back home.

I saw Antonia's beautiful brown eyes look up at me with amazement. I answered her unasked question with, "yea, were running, what do you think of that?" She smiled widely and stepped it up a notch. Unexpectedly, instead of stopping in a heavy pant, I went stride for stride with her thinking, "oh my gosh, I'm actually running, what is going on here? Could it be that I'm getting in shape?" It is amazing how quickly the frontal cortex can execute executive functions when it receives a healthy supply of blood. Immediately after I asked myself the second question, I rapidly supplied an answer, "yes," and promptly downgraded to a walk thinking, "but that is enough." For a moment there was spontaneous, albeit slow, running with my daughter and puppy. How delightful this glimpse of me-past was and how promising too.

I started last week strongly with visits to the gym on Monday and Wednesday. My timing was great since Vicky was in mid training both times and was able to witness me in action. I have to admit I was self-consciously waiting for her to come and correct my form. Thankfully, she was too involved with her current trainee to come over. Or, perhaps I was paying particular attention to my form. All I know is despite the uncomfortableness, it was great to be seen in the gym by my trainer.

I had to cancel last Friday's session with Vicky because my endoscopy was scheduled close to the same time as the training. As difficult as the training is, I seriously would have preferred it to the endoscopy. When I called to reschedule, Vicky said, "it looks like you have been hitting the gym pretty regularly, I'll see you next Friday." My timing had payed off.

The endoscopy was quick and painless, except for the sixteen hour fasting. I know, we should all know what starvation feels like. Or, perhaps we should all be so lucky not to know what starvation feels like. I didn't come close to starving, but I was getting a bit cranky by show time. In the waiting room, I was salivating as I read recipes out of Guy Fieri's Diners, Drive-ins and Dives: An All American Road Trip. . . with Recipes! I absolutely love his show. Hmm, not so sure it fits with my training regiment. Pass the barbecue, Mahalo!

This was my second endoscopy. The first one, a few months earlier, came with a bonus colonoscopy. My doctor has been searching for a reason my hemoglobin is hovering around 10.5. Good news, on the second go around, my recently found eroded esophagus was nicely healing. Thank you Prilosec. I sure the heck wasn't ready to cut back on the espresso. One thing I can say about Friday's procedure is that the photos were more pleasant to view. You know that great timeless philosophical statement, "opinions and ____, we all have one?" Well, after my two-fer three months ago, I actually had photographic proof. It is just something I would rather assume I had based on daily use. But, no. As I was coming out of anesthesia, the doctor pulls out an eight-by-ten glossy and points to it and says, "looks good." I said, "would you like me to sign it?"

By this morning the shiny moment was a distant memory. I was eager to get back to the gym last Friday, because I was feeling the benefits of routine. However, four days off and I felt like I was starting from square one and once again, needing to pry my arse out of my chair. Thank goodness it was sunny today. As I watched my window for working out gradually get smaller, by the grace of the sun, I was able turn my chair away from my computer, stand and walk to my front door, open it and leave. And to my delight, when I get to the gym, there was Vicky. She was without a trainee and stopped by and mentioned something about having eyes in the back of her head. When she was leaving, I looked, but couldn't see anything but hair.

I have to go to the gym tomorrow to get in shape for tomorrow night's Daddy Daughter Valentine's Dance. Gosh, I hope I can fit into my suit. It is time to go upstairs and dialyze. I'll see if I can remove four to six pounds of water tonight. That should help with the suit.

On a healthy community corner note: It is nice to see that my local Kroger's has traded in its healthy Mediterranean olive bar for a fried chicken bar, complete with sauces that can be tossed on top of the fried chicken and shaken in a bucket - not.

Nearly 50 pounds of gelatinous goo

2010-01-29T09:51:00.000-08:00

A week ago I first met my trainer Vicky at the local community center gym. I was skeptical about the need for a trainer until I realized my Wii Me wasn't getting any smaller. In fact, it appears that he even got shorter, or perhaps my picture tube is on the fritz. I could swear he seems a bit rounder. I'll have to call a t.v. repair technician. And yes, I do have a picture tube, my Sony is about twenty-five years old.

Adding a trainer to my regiment has been very beneficial. Since first meeting last Friday, I am proud to announce that after today at 2:00, I will have seen a 100% increase in my gym time this week. As much as I love my Wii Trainer, her motivational techniques did not come even close to this kind of result.

While the live version of a trainer is much more enjoyable than the virtual one, it appears that they may have undergone similar training. When Vicky asked me to stand still to check my posture she immediately noticed my lack of balance. I mentioned to her that was the same thing my Wii Trainer noticed. Vicky suggested that I buy new shoes because it seems that I have a bowled over second position stance that reeks havoc on my balance and my shoes.

Which reminded me that on a recent trip to D.C., I arrived wearing my sports coat over a polo shirt since I didn't bring a garment bag on the plane. I'm on my way back from a briefing before we go to the Hill and I happened to see this fellow in the mirror - I swear it is the spit'n image of Michael Moore - a hunched over tired looking man with an axe to grind wearing an extra large sports coat, ball cap and splayed out flat footed sneakers. The only thing missing was a camera crew and about twelve inches.

So I tell Vicky that I don't use shoes on the Wii. "Oh," she said, just like the concerned surprise that the Wii has when I stand on it to get weighed. "You may still want to get new shoes," she suggests.

Vicky points out that her BMI measurements pretty much approximate those of the Wii. The main difference is that when she is done she doesn't draw a short plump caricature of me, rather she asks me to look in the mirror. Which I might say, is much more effective if not a bit depressing. My Wii Me always seems to be smiling, not so the real me. Especially after the mirror. O.k. so we have our work cut out for us - me.

Vicky goes on to suggest, "would you like to try the calipers?" I ask if most people do this, and she says that most haven't got the fortitude for it. But she thinks that perhaps I do. I think about if for a minute. ". . . and the truth shall set you free," John 8:32. Of course when I was thinking this through I had no idea that this saying is attributed to Jesus as written down by John - thank you Google, er I mean All Saints Episcopal Church. Being the truth seeker that I am, I ask Vicky to bring on the calipers.

A big pinch on my arm, a bigger pinch on my side and then the pinch of all pinches, the belly button pinch. I'm not sure if I was giggling in response to the cold metal on my skin or the unbelievably large amount of skin being pressed between the calipers. I really should have been crying.

After to doing a few calculations. Vicky announce that I have 22.6% body fat. That doesn't sound so bad. That must mean I have 77.4% muscle, bone, and innards. Then she lets the hammer drop, "Erich that is 47.46 pounds of fat for your 210 pounds of body weight." Hmmm, I think to myself. That is how much my six year-old daughter Antonia weighs. It seems a bit excessive. I mean I know she feels pretty heavy when she sits on my shoulders. Kind of puts it all into perspective.

Nearly 50 pounds of gelatinous goo is weighing me down. That can't be good.

With that I'm off to the gym to see Vicky for training day number 2.

Resiliency brother, resiliency

2010-01-28T11:47:00.000-08:00

Written December 27, 2010

I'm sitting here here at 2:30 this afternoon in my new athletic wear wondering whether if I should go to the gym and exercise or go upstairs and take a short nap. Andria is going to be late tonight, and I need to be my cheery dad-self when I go to pick up Jacob and Antonia starting at 3:30. We are planning on seeing Jack Sprat Low Fat World Tour tonight at the Wharton. You know, Jack Sprout from the mid-seventeenth century English nursery rhyme:

Jack Sprat could eat no fat

His wife could eat no lean

And so betwixt the two of them

They licked the platter clean.

I think going to see a play about eating low fat foods should be considered the equivalent of four sessions of exercise. I was planning on taking the kids to see 101 Dalmatians but four free tickets came our way, so nutritional theater here we come.

To exercise or to nap? Feeling fairly tired I'm just not sure if exercise will charge me up or wear me down. Interestingly, after I pick up Antonia I mention that I'm tired to which she says, "exercise always wakes me up." Kids what do they know? Instinctively, I head up for a nap. Over the past ten years my instincts have evolved to a more protective cocoon like flee response rather than the natural fight instinct I once had. That may be o.k. since the old instinct often got me in trouble. I'm at the foot of the stairs about to take the first step and the futuristic electronic synth tone of my phone chimes. Fifteen minutes earlier, Jacob had called me fifteen asking for clarification on the note of things to turn in and ask his teacher that his mom had placed in this binder this morning. In case it is him again, I answer. "Hi, this is Tonya from ATT I am five minutes away and can come fix your problem now."

Resiliency. To some degree we are all resilient. It is a very important survival mechanism. Having been chronically ill for ten years and having dealt with ten years of infertility (I suppose it has been twenty years, though we stopped counting after Jacob was born) I have come to rely on my resiliency. While it was somewhat of a disappointment when the phone rang, I saw it as a sign the nap was not to be. Instead, I sat down and started to type since I can't leave to go workout.

The ATT Service Tech Tonya is here because two hours earlier when ATT Service Tech George left after fixing my DSL he forgot to make sure my phone line was good. It wasn't until I went to make a call that I found out it wasn't. George was here because on Monday, ATT Service Tech Manny came to upgrade my house to UVERSE which would give my sad little DSL line a heroic boost. It wasn't until Manny got to the local HUB that he found out that I was a few hundred feet too far for UVERSE. Everything was working fine when he left until Tuesday. After some investigation today, George found out the home office forgot to reconnect my DSL. Tonya just found out that George had inadvertently shorted the phone line. How do they stay in business? That was a lot of work to give me the same service I had on Sunday. The idea did cross my mind to switch to Comcast, but I really like my email address. Resiliency allows me to see this bungling as a comedy of errors and not a tragic drama. I was so relieved to get reconnected that I let the frustration of my wasted time drift away.

Andria is also very resilient though her acute instincts remain intact. Last night Antonia's sighing woke her. Antonia told her that she had a bloody nose to which Andria asked how do you know as she turned on the light - blood was all over her bedding. As she was cleaning this up at 3:00 a.m., Jacob who has asthma was coughing and having difficulties. While she was checking on Jacob my dialysis machine alarmed. I attended my machine and managed to get to the end of my dialysis run only to have forgotten to clamp my arterial line when I was done. That is the line that is connected to the top of my fistula which is my bicep via a large needle. Because of my own rough night tending my alarming machine, I am groggy when I go to disconnect my machine lines from my needle lines in my arm and sure enough blood spills all over the bed from that unclamped arterial line -- another CSI like mess. I can't really help clean it up because I need to spend the next fifteen minutes pulling the needles from my arm and holding my sites (holes in my arm) until they stop bleeding. Because of her resiliency, Andria is able to lightly step over to my side of the bed and attend to the mess, before she simply goes about getting ready for her day. She is probably relieved that our six month old puppy Cassie hasn't barked to go out yet.

There was a time that I fainted at the sight of blood. Those days are long gone. Resiliency brother, resiliency. Now when I am dealing with a spill or a reluctant clot, Jacob and Antonia just watch with curiosity. Daddy bleeding just doesn't phase them. Of course, Antonia was none too thrilled with her own bloody nose. I hope these experiences are fortifying them and not scarring them for life.

To exercise or to nap? Today it will be neither. I'll have to make do with a hearty serving of deliciously healthy theater.

Dialyze for the Prize.

Prying my arst out of my seat

2010-01-26T06:55:00.000-08:00

How delightful. The snow is lightly falling. The children are off to school. Andria is at work. And, our Marley like six month Chocolate Lab, Cassie, is getting a bath at the kennel. Simply, it is just a wonderful time to write.

Except that I'm writing a blog about getting into shape and I haven't been to the gym since Friday when I met my trainer Nancy (which incidentally is not her real name. I thought I should use a pseudonym in case things get ugly).

So, I will pry my rather soft comfortable arst out of this chair, put on my boots and trudge to the gym.

Time for the Trainer

2010-01-21T11:36:00.000-08:00

Apparently the power walking mama's were too busy power walking to come to the nine o'clock class this morning. And the AARP set were more content to be down the hall playing pinochle.

"Herb, it is your bid," Harold says.

"Herb!" says Harold.

"Yeah, yeah, I hear you. I was just thinking there was some place I was supposed to be. I bid 250. Darn, it is right on the tip of my brain. Florence was saying something the other day about something she signed me up for," says Herb.

"You won the bid. Are we playing cards or what?" Stan chimes in.

"I can't imagine being anywhere other than here. Hmmm?" says Herb.

"You want me to get you some Ex-lax to speed things up, Herb? says Stan.

"Hearts it is," says Herb

Alas my class was cancelled. What does I guy have to do around here to get in shape?

I decided to take things into my own hands and went to the fitness center. You sure can get a kink in your neck staring up at the T.V. watching MSNBC while strolling on the treadmill. I also found it was hard to read the captioning with Patrick Simmons of the Doobie Brothers singing:

Well, I built me a raft and she's ready for floatin'
Ol' Mississippi, she's callin' my name
Catfish are jumpin'

That paddle wheel thumpin'
Black water keeps rollin' on past just the same

through my Blackberry earphones. I love that song. Very appropriate for the Grand River Expedition too.

Thirty-five minutes later I'm off the treadmill and on to something else. One thing I noticed about the fitness center. There are a lot of fit people working out here. Hmmm.

There it is, old faithful, the bench press. There was a time when I could load a four of the forty-five pounds weights onto the bar and almost press it. But for today, the forty-five pound bar was more than enough. Vision's of the old Charles Atlas beach weakling found on the back of Flash Gordon Comic Books flash before me. Has it really come to this? I think to myself. I do two sets of fifteen reps and then sit up to a bit of vertigo. I know the lactic acid will be screaming through my deeply buried pecs tomorrow. But, you have to start somewhere.

I grab some dumbells and do ten bicep and ten tricep curls. I do a few presses and figure I've done enough for the day. I set the dumbells down and to my surprise the 20 lb mark I was expecting to see reads 10 lbs. Sheesh.

I realize as I leave the fitness center that it is time to call in a professional. I had noticed a flyer on the wall next to the bench press - very strategic placement - advertising a personal trainer. The flyer suggested that the personal trainer can provide an exercise regime tailored to specific needs, including medical concerns. I grabbed her card at the front desk and called when I got home.

After getting some initial information, Vicky, the professional trainer, asks, "would you like to start tomorrow?" Hold the boat I think to myself. I mean I just walked 1.4 miles and benched forty-five pounds. Today was a huge day for me. I "Just did it." I'm not an automaton that can workout every day. What about my my sure to be searing lactic acid tomorrow? I didn't say all that. Roxanne just heard a nervous giggle prior to me saying, "ah, sure." She then went on to discuss how we would discuss a number of things and assess my strengths and weaknesses. To which I couldn't help but laugh out loud and say, "shouldn't take long on the strengths." She didn't say anything and probably just thought, "he won't make it past two sessions."

So tomorrow it truly starts. I'll be forking over real money to be motivated to exercise and not just collecting Wii coins on my Wii Fit. I'll let you know how it turns out.

"Dialyze for the Prize." Erich

Sometimes even Yoda can inspire not. Yeesssssss.

2010-01-20T08:14:00.000-08:00

"Just do it"
~ Nike

"Do, or do not. There is no 'try'. "

~ Yoda

"A journey of a thousand miles begins with a single step."

~ Lao Tzu

"Even if you are on the right track, you will get run over if you just sit there."
~ Will Rogers

"People often say that motivation doesn't last. Well, neither does bathing - that's why we recommend it daily."

~ Zig Ziglar

Sometimes even the greatest of motivational phrases aren't enough to overcome anemia. I started out last week with the best of intentions. I weighed in to get a baseline with my Wii Fitness Trainer. The short squat avatar of my Wii Me is now seared onto my frontal lobe. When I look into a mirror the image I see is a recall of my Wii Me. The cute little chunky Me is standing there smiling and waving, just waiting to play. You would think that would be enough to motivate me to jump on the treadmill and run as fast as I can to escape the stare of the happy little hobbit Me. But alas, even this unbelievable portrayal of how I see myself isn't enough to overcome a low hemoglobin.

Anemia is just one of the comorbidities that people like me who are on dialysis face. As I undertake the journaling of this journey of Paddling on Dialysis for Kidney Health, I want to ensure that it is kept light hearted and enjoyable to follow. However, at the root, we are dealing with a serious subject - kidney disease and chronic illness. While motivational phrases are necessary to stimulate action, it is important that I don't gloss over the real obstacles to achieving success.

I want to step back for a moment to when I proposed this project to my wife, Andria. At first she was skeptical and as she realized the project was picking up steam, she became worried. These ten years that I have been on dialysis have not been easy for the four of us and it has been particularly difficult for Andria. For the first few years we weren't even sure of my survival. After a worrisome evening she would finally fall asleep beside me not knowing if I would awaken the next morning. All too often she had to think about raising our son and then our daughter without me. It was only a year after the last of my failed kidney transplants (she donated her kidney to me for my first) that we began to see some stability in our lives. The stability became much more consistent when I moved from three times a week in-center hemodialysis to daily short term hemodialysis at home. It has only improved as I moved to nocturnal daily hemodialysis at home.

In order for me to do this project, Andria insisted that we make sure my nephrologist was on board. She didn't want me to die of a heart-attack now that I was going to start a strenuous exercise program. Of course, the strenuous part of the exercise program hasn't quite started. Actually the exercise part of the program hasn't started yet either. But, I did get cleared my nephrologist, Dr. Fareha Kazi.

A quick note on Dr. Kazi, she was a Fellow at the University of Michigan when I was there as my kidneys were failing and also while I received the gift of life from Andria. After completing her Fellowship she moved into an existing practice in Lansing. After my second failed transplant I realized that there were no miracle treatments in my future and that maintenance dialysis was what was left for me. With no reason to continue at the U of M I sought out a nephrologist in Lansing and to my surprise found Dr. Kazi. Over the past five years she has been a very progressive and supportive physician as we have worked together to help me have a prolonged and productive life.

With a "clean" bill of health, relatively speaking, Andria came on board realizing that there was no stopping me now. Of course what seems to be stopping me now is 10.5 hemoglobin. Back in the day it would be nothing for me to run five miles a day. Of course, in the day I had a hemoglobin of 14.0. But thankfully our bodies are resilient. Even when diseased, we seem to establish a homeostasis or balance with our limitations. While anemia may be inhibiting me to undertake strenuous exercise, it hasn't stopped me from grocery shopping, seeing to my children's needs, and walking the dog. Of course, perhaps it is Andria suggests, that I'm just cold and unmotivated, hmmm. How to discern the difference?

I am getting iron infusions weekly because my iron saturation is low. This is just one of those things that happens to people on dialysis. I'm also injecting myself twice weekly with the performance enhancing drug Epogen. This brings a whole different meaning to the word performance. While EPO my help Lance Armstrong's cohorts get through Ventoux it often helps dialysis patients just get out of bed.

Last week I did indulge in some Wii yoga. While my Warrior Pose garnered trainer status, my Palm Tree swayed in the breeze, my Half Moon bayed, and my Tree came crashing down. I also signed up for two dumbell classes at my local community center. Unfortunately the one that I would have been at right now didn't have enough participants. I have no idea why folks aren't available for a 9:00 exercise class. I see all my grey-haired friends shopping at Meijers at this time, surely some of them could take the time to get their AARP butts over to the gym so that my class can happen. When you are medically disabled and are on permanent disability you live in a world of stay at home moms and retires during the day. For me it is like living my life in slow-motion. It is surreal and often frustrating, but in the final analysis, "it is what it is" and I make do. Quite frankly I was hopping to lead the curve at my dumbell class, although that was probably wishful thinking. There are some pretty fit seniors out there, and lets not get started on those power walking mamas. They haven't cancelled my Thursday class so I will keep my fingers crossed that the class will go.

I am certain that the right combination of iron, EPO and motivational phrases is just around the corner and soon I will be sweating and panting out of breath. I mean more than when I go down stairs to get the laundry.

When you shoot for the moon and you come up short, you still end up among the stars.
~ Les Brown

What the mind can conceive and believe, it can achieve.
~ Napolean Hill

Go as far as you can see, when you get there you'll see further.
~ Latvian proverb

Paddling on Dialysis for Kidney Health

The Shortcut

Providers - Do not underestimate the value of your Social Worker

Celebrating organ donation this Sunday at All Saints Episcopal Church East Lansing

Sticking the needle for the first time - first published in 2006 on Tasty Kidney Pie

Sweet dreams my dear

Please support the National Kidney Foundation by donating to the Riverdudes

Please help me raise $5,000 to help beat Kidney Disease

"I wish you weren't fat."

A message to a friend

A cool picture published in Our Grand Journey: discovering the river we thought we knew.

This photo is on page 108-109 of Our Grand Journey: Discovering the river we thought we knew -http://vintagegrandrapids.com/

Removing my fistula and inserting a Graft

Jaunary 17, 2011

Phi Sigma Sigma Golf Outing in Mt.Pleasant to benefit National Kidney Foundation

If you are in the Mount Pleasant area on April 16th check this out http://www.wix.com/holla4jm/phisigmasigma-golfoutingThe sisters of Phi Sigma Sigma are hosting a golf outing to benefit the National Kidney Foundation. I just found out my cuz is a sister - small world.

Paddling upstream

Jump in your boat, grab a paddle and ride the river to a joyful life on dialysi

Jacob's Class Project

The link to my fundraising site is ready to go. Feel free to try it out.

City of East Lansing Resolution - This was a neat surprise

Donations

Grand River Expedition Photos from my friend Shelby

Nephrology News & Issues Article - September 2010

A few more pictures for Grand River Expedition 2010

Paddling Poster at Greenfield Health Dialysis Center at Henry Ford Hospital

Follow Fit and Active on Dialysis for incredible inspiration from Julia

225 miles later

The Chippewa was wonderful tonic for the "liquid soul"

Heading for the Chippewa River for a river fix with Jacob and Antonia

We have hit the $12,000 mark!

No more paddling for now

Three more days to go.

Day 9 - Sunny, Slow, Wet, Thunder, Speed Paddle, Great Bowman

Day 1 and Day 2 pics

Tired but delighted

Tomorrow is the day!

More positive media helping to get the word out about Paddling on Dialysis for Kidney Health.

Paddling the extra mile

Thank you Riverdudes!

I have 35 Walker for this Sunday NKFM Walk but would love more

The Riverdude needs some more paddlers for the Grand River Trek

This Riverdude is seriously aching to get on the river

Wishing I was on the water

My letter to Finnish Dialysis Patients has been published

Beached canoe

I'd rather be canoeing

I put the boat in the water

Mid-Michigan Patient in Charge

Summit Sports Demo Day is this Thursday at Lake Lansing

Kiitos CarbonexAB

Thank you to our new sponsors Doggy Daycare and Spa and Lafolette Architects, Builders Interior Designers

I need Paddling on Dialysis Crew Members

Hyvä Dialyysi Ystävät

I have returned

"Wow that is more than my whole pay check."

Eight reasons why you want to be a Corporate Crew Sponsor

Celebrate World Kidney Day - get tested, get educated, share the info

The Patient as Captain of his Team Dialyzing for the Prize

I'm paddling 225 miles on the Grand River and raising $20,000 for kidney disease research - I need your help

It all ends up in the Grand River

No more red wine?

A brief shiny moment

Nearly 50 pounds of gelatinous goo

Resiliency brother, resiliency

Prying my arst out of my seat

Time for the Trainer

Sometimes even Yoda can inspire not. Yeesssssss.

If you are in the Mount Pleasant area on April 16th check this out http://www.wix.com/holla4jm/phisigmasigma-golfouting
The sisters of Phi Sigma Sigma are hosting a golf outing to benefit the National Kidney Foundation. I just found out my cuz is a sister - small world.