At the age of 14, I was diagnosed with Type 1 diabetes. I have struggled with managing my disease over the years, and it has taken its toll on my body. My wife, Joni, calls it the silent disease as you go on with your day to day living testing your sugars until one day everything hits you at once. Let me explain…
Five years ago I fell off a fire truck while helping to wash it for a parade. After a misdiagnosis of gout from the first doctor and walking on my foot for 5 weeks, I got a second opinion and x-rays. It was then that we learned my ankle was collapsed, and we learned about a common bone injury in diabetics called Charcot. Charcot causes your bones to be weak and the blood to wash your bones away.
This is where my diabetes started rearing its ugly face. I tried everything to save my leg, but I did not succeed. I had a below knee amputation on October 4, 2016. Through this process I learned that I was in need of a kidney transplant and my doctor set me up with a consultation at the University of MN for a Kidney/Pancreas transplant. I was told I had Stage IV Kidney failure, and since the diabetes is what is causing my kidney’s to fail, if we did a Pancreas transplant at that same time from the same donor we could get rid of the diabetes. From there I went through multiple tests at the University of MN to ensure that I was a candidate for a transplant, including consultations with everyone from financial advisors to cardiology to the transplant team. It was an exhausting day but so worth it! There were many things that needed to happen before being considered to be a candidate, including maintaining a healthy lifestyle free of tobacco and alcohol. I had extensive dental work done to make sure that I didn’t have any infections. I needed to get my diabetes under control by getting my A1C (how they calculate your average blood sugar) down. I am currently at a 7.0 and normal is between 5.7 and 6.4.
I am told that I have a great blood type to match, and I shouldn’t have to be on the list for long before getting offers. That was in April of 2017 when I was added to the list as inactive, because my kidney function was still okay. They want to get the most life out of your own kidneys as possible before a transplant or dialysis. It is now February 2018 and I have encountered some setbacks. I have been in the hospital with excess fluid twice in the last 8 weeks. This last time I was flown to a hospital in the cities because they thought it might be time for me to begin dialysis. Fortunately I am still able to hold off on dialysis for a while.
All that said, my medical bills are already adding up as we prepare for the possibility of dialysis and the transplant. We are still paying down the dental expenses, and if dialysis is needed, we’ll need to cover the costs of travel five times a week plus potential supply costs. The initial anti-rejection medications required for the first 3 months post-transplant are extremely expensive and my insurance doesn’t cover them at all, which alone will cost over $6,000 out of pocket. There will be continuing anti-rejection medications after the initial 3 month period as well. Through the surgery and initial month post-op, Joni will continue to work as much as possible, traveling to Minneapolis frequently to visit me incurring additional lodging, travel, and living expenses. Needless to say, expenses accumulate quickly!
Though my path has been rocky, I am thankful that it has lead me to this moment where I have the opportunity to live a life free from the silent destruction of diabetes, with a kidney/pancreas that will help me function well for years to come.
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