September 7, 2012.
I didn’t sleep very well that night. Earlier that day we got the official call. After 527 days, my wife Tammy was finally approved for a kidney transplant. She was officially on THE LIST. She told me in the front yard when she got home from dialysis that morning and we held each other and cried. We were so happy, we practically threw an impromptu party in celebration, wanted to shout from the rooftops that she was finally on THE LIST.
Later that night we went to bed with our cell phones locked and loaded. Ring tones tested, volumes turned up. On call and ready to be woken up by her surgeon the second a kidney was available. I dozed for most of the night in a semi-sleep state of consciousness, knowing that phone could ring at any time and we’d be ready.
How quaint. That was 635 days ago. For those of you keeping score, we’re still waiting for a kidney transplant after Tammy was diagnosed with stage five end stage renal failure 1,162 days ago. That’s 3 years, two months, and five days.
Getting on THE LIST wasn’t easy and it certainly wasn’t a quick process. Tammy’s kidneys started failing on March 7th 2011. A few weeks later after some unsuccessful chemo, they passed away for good and she got her first dialysis treatment on April 4th of that year. It took 18 months of countless appointments and tests before finally getting on the list. In the meantime while we waited, 216 dialysis treatments went by to keep her alive. 5 hours a day, 3 times a week, every week.
It’s been over 3 years since Tammy’s first dialysis treatment, and as of April of 2014 she’s had 431 more. Give or take. Every Monday, Wednesday, and Friday she would rise at 4:30 A.M. and drive 20 minutes to the dialysis center. By 9:30 or 10:00 she’d leave with her blood cleaned and toxins removed. Feeling sick, tired, and horrible. Dialysis is the perfect example of a treatment that makes you feel as bad as the disease. After arriving back at home she’d collapse in bed most days. The entire day gone. 3 times a week. Every week.
In April of 2014 we decided to look into home dialysis. It was an idea she resisted for months because in her mind it was a way of giving up, acknowledging the fact that the call in the middle of the night might never come. After 4 weeks of training for the both of us, we’re finally doing dialysis at home.
It’s a little better, but not much. 3 times a week for 5 hours a day has become 3.5 hours a day, 5 days a week. Instead of a 20 minute drive to the treatment center and back, our commute is the living room. The equipment takes up a corner of the room and 2 closets are packed full of supplies.
We’ve been only doing dialysis at home for 4 weeks now and the renewed sense of optimism and energy is quickly fading. I can see it in her eyes every night when I poke her twice in the arm with needles to hook her up to the machine. The glances at the clock are becoming more frequent. The black cloud over her head thickens. Imagine feeling sick every single day. Never having a break, your whole life in a holding pattern for over three years. I’m closer to her than anybody I can’t fully appreciate what she goes through.
In the meantime, we wait. I’m on my own list now after months of countless appointments and tests. I can’t be a direct donor to Tammy, but I’m in the National Kidney Registry as part of the paired donation program. I donate to a compatible patient in need and their donor would give a kidney to Tammy.
Dialysis is expensive. The numbers vary, but I’ve seen the annual cost per patient anywhere from $50,000 to over $100,000. The average time on dialysis is 3 to 5 years for those who are on the waiting list for a donor. Those who aren’t, cost the health care system that much every year until they pass away. Obviously, we’re not getting bills in the mail for 50K. With our private health insurance and Medicare (dialysis patients automatically quality for disability and Medicare) we pay a small fraction of that out of pocket. But that doesn’t mean it magically gets written off somehow. We all pay for it one way or another.
Instead of shelling out billions each year for a somewhat inefficient and outdated technology, the US government should pay healthy individuals willing to donate a kidney a handsome reward in the area of $50,000 plus medical expenses. Tax free. The live donor pool would go through the roof and the number of dialysis patients would plummet. Overall costs would go down and those who qualified in financial need would receive a nice reward for their sacrifice. The high level of testing, screening, and quality control of live donors is already in place. Junkies walking in the door looking for some quick cash for a couple of stitches would get turned away, just like they would today.
But none of that really matters to my family. Unless that happens tomorrow, we’re still waiting. I try to stay positive, try to focus on the positives and unfocused on what we can’t control. It’s hard not to be tired. Hard for us not to become bitter, cynical, and resentful.
We’re still here and we’re still waiting.
Tomorrow is day 1,163.