I decided to start this blog because I needed an outlet for the hundreds of thoughts I have at any given moment. Why go public instead of keeping a personal journal? Because right now I am living a personal hell and thought that maybe, just maybe while getting my thoughts out I could also help someone who is going through difficult times. I am not 100% sure what is going to be written here but I can tell you it’s going to be from my heart. I cannot guarantee that you will agree with my thoughts but please understand the intensity behind my words.
I have Kidney disease. I have dealt with this for most of my life but I found out about 9 years ago that I needed a transplant. That was when Lee, my brother-in-law decided to get tested to see if he was a match. Fortunately he was a perfect match. After a year of dialysis (I could not be transplanted because I had C-Diff) I was finally cleared for my surgery and Lee gave me the gift of life. My body rejected the kidney 5 days after the transplant and I was back in the hospital so that doctors could basically blow up my immune system so that my body would not reject. I was lucky enough to get 6 years added to my life. Unfortunately, My body rejected the kidney and in 2018 I spent the summer living in a hotel across from Tampa General Hospital. I was receiving plasmapheresis every other day in hopes of saving the kidney. It did not work and in March of 2019 I started dialysis again.
After my first transplant failed I didn’t think I could go through asking someone to donate again. I am now listed at Tampa General Hospital and working on Cleveland Clinic. It could be anywhere from 4-6 years before I receive a kidney from the transplant list. Transplant is also more difficult the second time around for me because I have built up antibodies. After speaking with my doctors it was consensus that my best option is to look for a living donor again.
According to kidney.org, “Our immune system naturally forms antibodies as a protective response against bacteria and viruses. In the context of transplantation, antibodies are good when they are ready to attack foreign invaders that can lead to illness, but antibodies can also be ready to attack foreign tissue – such as a new kidney transplant.”
I have 99 out of 100 antibodies. This makes finding a match very difficult. How did I get antibodies? Anti-HLA antibodies are formed by the immune system when you are exposed to proteins that appear similar to tissue types. This most commonly occurs in the setting of previous transplantation, pregnancy, or blood transfusion. Occasionally the cause of anti-HLA antibody formation is not known. Unfortunately once you have anti-HLA antibodies, they do not go away on their own. Antibodies can be difficult to remove from the body, although different treatments have been tried. One of these treatments is plasmapheresis. I underwent six weeks of plasmapheresis last year. Unfortunately it did not work.
I was never one to really ask for help but recently I find myself doing it more and more. So here it is… I need help finding a donor. I know that this is a lot to ask. But I guess what I’m asking is that if you’re reading my story, please share my story. The more people that read my story the better my chances of receiving a kidney.
I am finding this entry very hard to write because I don’t want anybody to read it and think that I take this lightly. I know that what I am asking of somebody is huge and I know that there are many things to take into account. Miracles happen every day and I have to believe that my miracle is out there..
Here’s the cool thing about transplantation, Someone can choose to donate for me and if they are not a match for me then they will match us with another transplant patient and donor.
If you are interested in learning more you can contact the Cleveland Clinic or Tampa General Hospital and they will give you any information that you need. Everything is confidential. I do not find out if people call to get tested for me until they decide to tell me themselves.
I am excited for what the future holds for me. No matter what comes my way I will continue on this journey. I will continue to do dialysis three days a week for four hours a day and I will continue to blog and hope that someone else out there finds comfort in my words.
I am so appreciative for all of the support that I continue to receive.
Again, I am asking that you please share my story and please ask your friends to share my story. Social media is a powerful thing!
If you would like to be tested or know someone that may be interested you can contact the Cleveland Clinic at ccflorida. donorscreen. org or Tampa General Hospital at 813-844-5669 or firstname.lastname@example.org