Apr 21, 2018 Latest post:
May 26, 2018
My story starts with my first kidney transplant in 1983. I have a hereditary disease called Alport's Syndrome which causes problems with the collagens found in the eyes, ears & kidney. I have had a total of 3 kidney transplants (one donor was me wife, Cathy). I also have had cataracts removed in both eyes and wear hearing aids in both ears. Due to the use of immunosuppressants, i started developing basal cell carcinomas on my skin a few years ago. In 2017 i had 3 MOHS surgeries on cancer on my head. One of these turned out to be squamous cell carcinoma. Although the Dr's thought they had gotten it all, the squamous cell showed up again in November of 2017. After diagnosis, I went to Mayo Clinic to have it removed, along with 60+lymph nodes. While recovering from this in Feb 2018, i noticed a couple more bumps on my neck with were also squamous cell and needed to be removed surgically. On April 16th, I started 6 weeks of Proton Therapy radiation treatment at Mayo Clinic. We hope to be able to destroy any micro squamous cells in my neck on the left side so I do not have to deal with additional surgeries to take are of the squamous cell carcinoms. About 2015, my kidney function was again declining and i went thru the process of taking medications to get rid of Hep C. I had contracted Hep C 20 years previously from a blood transfusion. In the process my kidney was damaged and is again slowly failing. Because of issues involved with my kidney not working well, it was important for me to have the Proton Therapy to spare other tissues of the throat and mouth. After the radiation treatments are completed, i will need to wait 3 month before having a PET scan to see if this was resolved. After that I will need to have a work up to see if I need another kidney transplant.