I need a kidney transplant. I only tell this story because this is my best chance at living a full life. That being said,
this is my story in a nutshell.
Who knows? Maybe there is someone
out there who wants to give me a
kidney (and save a life).
I was born in Minnesota in 1970. Sometime in 1978, my parents moved us to Montana. There was something about the wide open spaces that really got me excited. I loved the outdoors and Western Montana was a beautiful backdrop. In 1982 we went east to Billings and this is where I grew up. Luckily, our first home was right along the banks of the Yellowstone river. I spent a lot of time there.
Billings is a baseball town and I had been playing since I was five. I continued to play through high school and into college. When it was not baseball season I worked odds and end type jobs, but it was only to finance the addiction of the outdoors. I loved baseball, but hunting, fishing, and camping became my identity. I lived for it. When I was 19 I met a friend who had the “fever” as bad as I did. Every weekend it wasn’t a matter of “if” we were going, it was “where.” If it was summer we fished. If it was fall we hunted. In winter we ice fished and hunted coyotes for local ranchers to keep the numbers in check. We learned to process our own game and get it stored for the year. Eventually we bought an old fixer upper boat. We got it running and even entered a few fishing tournaments.
Life was good.
In 2001 I was promoted for work (an auto parts distribution company) and was moved to Portland, Oregon. I packed things up and moved out here by myself. I met my now wife almost immediately. She laid claim to me instantly and I’m not sure I could have gotten away had I wanted. I eventually made some new friends who also loved the outdoors and continued to enjoy many more trips. My wife, Britt, likes camping and will even fish with me occasionally. She’s not opposed to me hunting, but it’s not her thing. It’s not for everyone. Thank goodness she likes the food it provides.
The auto parts company wasn’t quite cutting it, and after 16 years I took a job with the railroad. I became a locomotive engineer and worked there for 13 years. That job, too, took its toll as I was on call 24/7 and out of town a lot. In May of 2019, I was lucky enough to land a job as a project manager for an environmental company. In town all the time. No more working weekends and holidays.
My grandpa was diagnosed with polycystic kidney disease sometime in his 60’s. He was very private about it. I knew he was on dialysis but never really knew what he was going through. When he was 64, his friend “big Tom” drug him to a Legion hall meeting (grandpa was a WWII vet). When the meeting got to the new business portion, Tom stood up and announced “This is my friend Bud. He needs a kidney. I suggest you all go get tested to see if you are a match.” The story goes that almost half of those in attendance went to get tested, the bartender included. It urned out the bartender was a perfect match for my grandpa. Bud lived until he was 82 and his death had nothing to do with the donated kidney. I am aware that these little miracles can happen.
My mother is living with polycystic kidney disease, too. Her sister also has it, as well as two of my cousins. None of them are having any difficulties though. They are living normal lives on a controlled diet and medications. I tried several times over the years to get my primary doctors to test me for polycystic kidney disease. None of them would or insurance would not authorize a CT or an ultrasound as it was expensive and there were no symptoms. They would simply order renal labs and check my creatinine and tell me my kidney function was fine. Until it wasn’t.
I was on my annual deer hunting trip to Montana. My 13 year old son was with me. There were at least six of us in camp. It was chilly but not cold by Montana standards. I couldn’t seem to get warm. Then, I started having abdominal pain that was coming and going. Sometimes, it was unbearable and then it would subside. This went on for three days. Finally I admitted to myself that something was wrong. I could see the look on my son's face as we were in the camper bed and I was curled into a ball, shivering. He was scared. My friend Don drove me,
my son, and my truck one hour south to the hospital.
After a CT scan, I was admitted immediately for renal failure due to poly cystic kidney disease.
The cysts were forming so quickly they were bursting. The diagnosis was that they would get me back to some kind of health and that my kidneys should make a recovery. That indeed seemed to be the case and I was released after five days. When I got back to Portland I found a nephrologist to continue to monitor my progress. After two months and two sets of labs, things were looking good. Lab number three was not what we had hoped. For no apparent reason my kidneys began to slip. I held off of dialysis for one year. When I finally gave in, I realized that I really didn’t know how bad I felt. Dialysis helped a lot. It’s weird though. Dialysis can suck the life out of you too. Eating better helps that though.
I started the process of getting on the transplant list almost immediately after my nephrologist told me that dialysis was inevitable. Covid slowed the process but I was able to get listed in October of 2020. A mentorship was suggested to me by my transplant support nurse and I thought “What the hell. Anything helps.” My mentor suggested I get this story out there.
Being listed is good, but the fact of the matter is that I am waiting for a deceased kidney. Typically deceased kidneys only last 7-10 years. I’m willing to accept any help but, statically, a living kidney lasts longer. With proper care they can last up to 20 years or longer.
Who knows? Maybe there is someone out there who wants to give me a kidney (and save a life).
I can hardly imagine. No more dialysis on Mondays, Wednesdays, and Fridays. It's much easier to travel when you can be spontaneous and not have to set up a clinic months in advance and have it nearby to where I am traveling. More energy to be able to get back to tinkering around the house.
I am happy that modern medicine is keeping me alive, but it is tough. Liquid intake is limited as my kidneys can’t keep up. Foods with high phosphorous, potassium, etc. are off limits. It’s an emotional roller coaster all ready. One day I’m at peace with it and the next I’m angry about it. Why me? It doesn’t really matter because I’m here and this is reality. But facts are facts. The longer I’m on dialysis, the more likely the chance I slide downhill to being too sick to receive a kidney transplant. Dialysis is a treatment but it can’t go on forever. There are exceptions to the rule but if you look at statistics,
I might only have ten years left.
But I still count my blessings.
I’m still working. My wife is very supportive. My son is in high school and actually thriving amid this chaos of online learning and being cooped up. I believe everything happens for a reason. Regardless of how this all ends there will be something good that comes out of it. I just need to keep my eyes open so I can see it.
I can accept any O blood type. There is also an exchange program where if you are not a match for me you can still donate on my behalf. Your kidney would go to the best match and I would go to the top of the list for the next kidney that is a match for me. If you made it this far, thank you for taking the time to hear my story.
If you'd like to know more, share your story, or just reach out, send me a message below.
