Spirit Airlines corrects a mistake

Andria contacted Spirit Airlines to make sure they were aware that we will be traveling with my NxStage Hemodialysis machine. She reached a Call Center. Repeatedly the representative stated that the only devices that would not carry a charge are assisted breathing machines. My dialysis machine and case weigh one hundred pounds. Spirit has a hefty baggage price, especially if the item is oversized. And the price increases if you have to buy it at the gate. We were planning ahead to minimize surprises.

Andria calmly tried to explain the Department of Transportation disability rule to no avail. This rule waives baggage fees for life sustaining devices. Requests to speak with a Complaint Resolution Official were met with responses to the affect of - we do not have one. Clearly, the Spirit Airlines Call Center staff was not prepared for someone traveling with life sustaining dialysis equipment. For those who may not be aware. The average lifespan for a person without the use of their kidneys and without dialysis is between seven and twelve days.

I suppose if you have some residual function and thereby make some urine one might survive to twelve days or so. It wouldn't be a pleasant twelve days. I haven't pee'd since 2001, accept for a couple of brief moments while we were trying to make my two transplanted kidney's work (one in 2001 another in 2005).

One of those times will always stick with me. We were on our way home from the University of Wisconsin Hospital in Madison. We stopped at a restaurant for a break and I took my five year old son to the bathroom. We stood side by side and used the urinals. This may be a dad thing. But, it felt normal. Our new normal, well twelve years new, is that I'm the camel of the family. Cross me in a car, and it will only be a matter of time until your legs are crossed and you're whistling, Oh Susanna, and tearing up at the eyes.

I asked my friend Mary at NxStage if she could help us. She spent the next two days trying to get through to the appropriate parties at Spirit. On Valentines Day, Mary forwarded the following message to me.

I have been using Nxstage's System One Home Hemodialysis since 2006 and on dialysis since 2001. NxStage and the people who work there are passionate about providing a device that help people like me live a passion filled life. Thanks Mary.

Thank Spirit Airlines for correcting this mistake.  There are over 300,000 American's on dialysis and unfortunately with near epidemic levels of diabetes and high blood pressure as result of alarmingly increasing obesity in the US, this number will be growing.  Many people on dialysis are turning to home therapies to provide better outcomes and to increase their freedom to pursue a full and meaningful life.  It is appropriate for your staff to be trained to deal with the devices these patients will be bringing along as they travel the world in pursuit of their dreams.


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Spirit Airlines Customer Relations Agent Michelle , Feb 14 10:44 am (EST):

Thank you for your patience as we investigated this matter.

As a general matter, we do not charge overweight fees for assistive devices. In the interest of clarifying what was stated in the conversation between Mr. Ditschman and our Reservations agent, I requested that the call made on February 11, 2013 be converted into a transcript for review. According to the transcripts, the agent did not offer correct information to Mr. Ditschman in regards to the assistive device he wished to check nor did he provide information regarding a Complaint Resolution Official (CRO) which Mr. Ditschman requested. For this reason, we believe that we violated DOT's disability rule in regards to both aspects of your claim. We thank you for bringing this to our attention. We’ve used your correspondence as a coaching tool for the entire Reservations staff.

I've gone ahead and made a note on Mr. Ditschman's record indicating that he should not be charged for his checked dialysis machine. I've also contacted the stations he's traveling from and advised of the device.

Please note, if you ever encounter problems when traveling with us, feel free to ask our Spirit Airlines customer service personnel for a Complaint Resolution Official (CRO). Our CROs have been specially trained and are aware of applicable Department of Transportation disability regulations. Our CROs are available at all airport locations and will be glad to respond to your concerns.

We trust we have addressed your concerns in a satisfactory manner; however, if you choose to pursue enforcement action, you have the right to contact the Department of Transportation, in accordance with ACAA and DOT rule 14 CFR Part 382.

Please feel free to contact me if you ever require assistance; it is my pleasure to assist you.

We know you have a choice in air travel and are grateful you choose Spirit Airlines.

Kindest regards,

Michelle M.
Disability Specialist/
Corporate Escalation Officer
Spirit Airlines, Inc.

Thank you for your past support.  Together we have raised nearly $75,000 for the National Kidney Foundation of Michigan.  Since 2001, when I surprisingly ended up on dialysis, your continued support has helped to curb kidney disease in a state where the main risks - obesity, high blood pressure and diabetes are near epidemic.  The NKFM helps to increase kidney donations, including living-donations like the one Andria gave me in 2001.

Unfortunately my disease, FSGS, shut down her gracious donation immediately.  There are many folks like me where future kidney transplants are dubious (you may recall, I had another transplant in 2005 that also shut down).  In the US there are nearly half a million people on dialysis.  The National Kidney Foundation provides tools to help people on dialysis to live a quality life

Again, this year the Riverdudes are raising money for the National Kidney Foundation of Michigan.  There are three ways that you can get involved.

1. Make a donation through this secure website right now. 
2. Join The Riverdudes and The Hubbard Law Firm Walk Team and collect funds to help us reach our goal. We will be walking downtown this year on Saturday, June 9 at 8:00 am at Lugnuts Stadium. You can register at the website.

1. Become a virtual member of the Riverdudes.  Join the Walk Team by registering at the website, but because of timing or distance, just help raise money.

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 in the enclosed envelop.

Together we can help many others through supporting the NKFM.

Dialyze for the Prize!

And, thank you for your support and kindness -

Erich

The Shortcut

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

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

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

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

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.