Hello and Thank You:Thank you for your interest and for visiting this page. Some parts of this story are easy to tell and some parts are harder because, honestly, I don’t want to make this anyone else’s problem and I don’t want this somewhat bummer story to define who I am. Some of you have followed along as I’ve gone through this and some of you are learning about it for the first time. In any case, I am appreciative of your love and support and we are glad to answer any questions you have. And if you want to consider being a part of this story, all I can say is thank you.
Here we go.
Long Story Short:
I need a new kidney. I am currently on the nationwide transplant list, but, I am told that it would be better for my overall health and long-term prospects if I find a living donor.
Long Story Long:
In 1973, I was born with a fairly common condition, kidney reflux. Kidney reflux is when you have a defect in your renal system that allows urine to flow back into your kidneys from the bladder. Today, as in the 70s, kidney reflux has a standard and usually quite successful treatment protocol: antibiotics and/or minor surgery can fix the problem before the kidneys are damaged.
But my kidney reflux was never diagnosed, so I didn’t get the fix. It didn’t impact my childhood that I know of. I was a happy, normal kid … well, I’m told I really loved office supplies. Which isn’t that normal. But I was as normal as an office-supply loving, Pac-Man obsessed and lego-buildin’ kid can be.
If you’re the kind of person who’s into details, here’s some more information on kidney reflux:
http://www.childrenshospital.org/health-topics/conditions/vesicoureteral-reflux-vurFast forward 30 years. I was teaching at Great Falls High School, coaching debate and starting a life with Alison. As part of a regular medical checkup, a diligent doctor in Great Falls, Montana started investigating because it appeared that my renal function was impaired for no really good reason. After a battery of tests and a reference to a nephrologist (a kidney specialist), I was told that I was well into the process of kidney failure and that at some point, I would need a kidney transplant.
Dr. Ross was my funky, young and quite frank nephrologist in Great Falls. I spent a lot of time in her office in Spring 2004 and we had developed a rapport. She worked hard to unravel my health puzzle, and after finally putting all of the pieces together, we had a serious talk about my prospects. I think my doctor must not have seen the reaction she was expecting, because she then leaned in and said, “Listen … you are really sick. This is quite serious.” I asked what I could do to help prevent this from happening and she very poignantly said, “You can’t. However, you can hold this off and the longer you hold this off, the better we become at transplanting kidneys. Every six months you can wait, we will be that much better at this procedure. So, as a start...lose the f$#*ing gut.”
Well. There it is … bottom line doctor advice. And I’ve done my best.
Initially, my doctors suspected my kidneys would last a few years before total failure. However, through diet, exercise, careful monitoring of my blood pressure—and a bit of luck, I’m sure—my kidneys have lasted over ten years. I am down over 80 pounds and my doctor actually referred to me as a “rock star” in how I have handled my situation. I am even seeing a physical trainer now, who has me sitting on something called a “dynadisc” at work and carrying around exercise bands to use during conference calls. Hard core.
In the meantime, I have been living my life as planned … well, as much as you can live life as planned—we all know how well that works. I taught history and social studies at Capital High School in Helena, Montana until I was recruited in 2010 to help start the Montana Digital Academy, a public, online high school where I am now the Assistant Director / Curriculum Director, another job I love. I have nearly completed my Doctorate in Education at the University of Montana. I continue to build an amazing life with Alison, who has been my partner in crime for traveling the world, exploring the great outdoors in Montana and being good humans for Berkeley the dog, and Lily and Stash the cats.
Over the past ten years, my visits to the doctors became positive and mundane. I was always down a pound or two. My blood pressure was well under control, which is important. My kidneys plugged along at around 23 percent functionality. This past spring, however, I faced the next step. A blood test showed that my kidneys have finally crossed over a line into end-game renal failure (around 15 percent functionality), and my nephrologist referred me to Virginia Mason Hospital in Seattle for a transplant.
The last several months have been a whirlwind of information and medical visits. I have been getting a blood draw every 2-3 weeks to see the condition of my renal system. I spent a very full day of medical tests at Virginia Mason in September with the always awesome Alison. They took 30 vials of blood (seriously … 30). I had a lot of poking, prodding and scanning of my general abdominal region … ultrasounds and x-rays. And … I had a very interesting cardio test where they chemically induced my heart to race while they checked out my chest with an ultrasound machine (and for the record, my heart is in great shape … I credit my daily intake of carrots).
What's Next:
We’ve learned a lot about the transplant process, but to summarize … I am on the list now. In all likelihood, it will take 3-5 years in order to make my way up the list to get a transplant. However, a call can come at any time. Once I get the call, I jump on a plane to Seattle and then, assuming all goes well (more tests), I get a new kidney installed. I am in the hospital for a week or so after the surgery, and then spend another 4-5 weeks in Seattle monitoring my health for signs of rejection, in which doctors will utilize what are apparently excellent anti-rejection drugs. I will be on those drugs for the rest of my life.
Here are some things we have learned about kidney transplant that you also may not know:
1. They don’t replace the kidney. Nothing gets taken out; the transplanted kidney just gets put in.
2. The kidney won’t go in my back where kidneys normally go. It will go in my abdomen near my groin.
3. After this is done, other than some medications, I will likely go back to living my day-to-day life as normal. For me, that means traveling and camping with Alison, getting walked by my over-energetic dog, and doing the job that I love.
There are some dos and don’ts that I will need to mind. DO: continue to eat my diet as is … which, for those that have been around me over the last 4 years know, means a lot of vegetables and little processed carbs. DON’T: eat star fruit … ever. (Okay?) DO: Continue to exercise daily and track activity using a pedometer. DON’T: eat sushi (Damn!). DON’T: Clean out the cat litter box. (Sorry, Alison.)
At this time, I am patiently waiting on the list, however, there is a second option. I can also accept an organ from a living donor. Living donors are generally considered better: transplanted organs from living donors last longer and the long-term health prospects are better.
The donor doesn’t have to be a family member and Virginia Mason Medical Center has a process that is very well thought-out. There is no cost to the donor (well,other than a kidney); basically, my insurance covers everything. Virginia Mason has an army of people to support donors, including a whole medical team (separate from my medical team), as well as social workers and other professionals to help determine a good candidate. And don’t worry ... living donors still get to eat sushi.
If you’d like to learn more, here is a link:
https://www.virginiamason.org/Living-DonationI Want You to Know:
I would want any potential donor and their family to know that I am a good investment. I have worked hard, both mentally and physically, since 2004 to be as ready for this as I can be. My doctors in Seattle acknowledged this in September: I am a great candidate for a transplant. This is an incredible gift, which I plan to treat with utmost respect. There are many more life adventures in my future and for that I am, already, deeply grateful. Some people are not able to consider living donation right now, and that’s okay. Their energy, thoughts and support of my family while they support me are also really important.
I have spent more time talking about my health with people in the last few months. The most common question I get is “How are you feeling?” Right now? I feel fine. I continue to work hard at my job. Alison and I are planning to move to Missoula in the Spring. I carefully monitor my food and activity (and track steps on my smartphone religiously … yeah, I am that guy). At some point, my kidneys may fail completely and I will need to go on dialysis; however, my doctors are hopeful that I can get a transplant before that happens. My long-term prognosis improves if I don’t have to start dialysis.
So, that’s my story. I am quite blessed by the love and support of family and friends through this process. I have the ultimate team assembled to assist me through this adventure (there are rumors of a “Team Jason” t-shirt rolling out there somewhere) and they are helping me to tell my story more widely so that I can move forward with my critical next steps.
Thank You (I’m saying that a lot these days, and I mean it):
Thanks for reading, and for your love and support of me and my family.
And, come back again. We will utilize this space to keep family and friends up-to-date.
