I was fiddling around on Facebook the other day and I came across the original letter I wrote when I first learned I would need a transplant many years back. I decided to post it with an update
Many of you received an email back in 2007 stating that I had suffered from kidney disease since childhood. Fortunately, I was able to maintain function with medication for many years.
When I moved to Florida I found a wonderful nephrologists at The Cleveland Clinic to continue monitoring my kidney function. I was advised that given my numbers, either a transplant or dialysis would be necessary within 1-3 years and in my case, the choice between dialysis and a transplant were based on healthy lifestyle and quality of life.
Plan A was a transplant, which would allow me to continue teaching and maintain a somewhat normal quality of life. Plan B would be dialysis, which would completely change my life due to treatments 3-5 times a week for 3-5 hours per session.
While I had passed the 1-3 year mark my doctors projected, my kidneys had finally had enough and I needed to find a living donor as soon as possible.
Thanksgiving of 2012 Lee , my brother-in-law, and I announced the news that he was a match. All was right with the world!!!
As luck would have it, in September of 2012 I contracted C-Diff (Clostridioides difficile is a bacterium that causes diarrhea and colitis (an inflammation of the colon) and doctors would not transplant me until I was cleared by an infectious disease doctor. For almost a year I was put on every single medication created to cure C-Diff; pills, liquid antibiotics , pic-lines, and fecal transplants. Yes, Fecal transplants. Two to be exact.
Tampa doctors didn’t know what to do with me so I headed to the Mayo Clininc. Mind you, by this point my kidney function had reached below 15%, therefore, I needed to get a fistula and start dialysis.
The Mayo Clininc told us to try The Cleveland Clinic where we met a remarkable doctor who sat and listened to my entire sob story and then wholeheartedly preceded to tell us that the FDA no longer allowed medical professionals to do fecal transplants.
SERIOUSLY? I could not catch a break! I can actually remember sitting there dumbfounded with tears rolling down my face. My mom looked at me, helpless and all I could do was stare back at her.
As we sat in disbelief, anger, sadness, until the doctor finally took pity on us and decided to fight for me. If we could get the FDA to approve my procedure, she would perform it.
With calls to the FDA we were able to get it approved and I finally had a successful fecal transplant in May of 2012.
After almost a year on dialysis, this speed bump was cleared and on August 1, 2013 I received my new kidney.
Smooth sailing, right? Please!! I rejected 5 days after surgery and went back into the hospital for about a week. The doctors blasted my immune system with plasmapherisis so that I would not reject. Thank goodness they were able to save the kidney and so started my war with prednisone.
During the summer of 2018, I woke with a fever and wasn’t feeling well so I went to the emergency room. I was admitted and tests were being ordered. Based on a biopsy, I was rejecting the kidney all over again. On July 5, 2018 I was driven to Tampa General Hospital by ambulance and didn’t return home until July 18th. I was an outpatient enduring plasmapheresis, IVIG and Rotuxin treatments every other day. Unfortunately, I was losing the kidney.
March 2019, I began dialysis again and 7 surgeries later I am here looking for another hero.
This letter is my effort to spread the word, again, that I am seeking a living donor who might be a potential match.
If you are interested in more information about how you can help, please contact Tampa General Hospital at 813-844-5669 or firstname.lastname@example.org. All communications are completely confidential.