In 2010, to celebrate my tenth year of a wonderful life on dialysis I sort of got in shape and canoed 225 miles with the Grand River Expedition 2010. It was an incredible journey that couldn't have happened without my family and many dear friends.

I have been on dialysis since 2001 and have used every form of dialysis currently available in search of the best outcome and the best life. I have done in-center hemodialysis, at home hemodialysis with a traditional dialysis machine, peritoneal dialysis and finally, NxStage's System One home hemodialysis machine. I have had two kidney transplants, one from my beautiful wife and another because a thoughtful motorcyclist had checked the donate organs line on his license. For me, the technology for a successful transplant does not exist for my disease. I remain open and optimistic about wearable and implantable artificial kidneys.

Since I started my first blog, Tasty Kidney Pie, in 2001, I have tried to, and hope to continue to, inspire dialysis patients and others living with chronic illnesses to get outdoors and live an active and fruitful life.

Since 2001, The Riverdudes, my National Kidney Foundation of Michigan Walk Team has raised $78,000.

I currently spend my time writing, raising my children, snuggling with my wife, getting outside and staying active, and hopefully inspiring others along the way.

Thank you

With your help we can exceed this year's goal of $5,000 for the National Kidney Foundation of Michigan. Thank you very much for your continued support. Erich



Sunday, February 14, 2010

No more red wine?

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.

Monday, February 8, 2010

A brief shiny moment

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.