transplantstory

“This is Fifty”

I have seen this quote on FaceBook quite often lately, accompanied by a picture of a person looking vibrant, healthy and beautiful. And I usually say to myself, “WOW, she looks vibrant and healthy and beautiful for 50”. Then I remind myself that MY Fifty is around the corner. How did this happen? Where did 50 years go? How are my second graders getting engaged or married or better yet, having babies of their own. I surely haven’t aged, so how did 50 sneak up on me?

The truth of the matter is, I don’t think I feel fifty, but I do know where the years went. I know that I lived them. I have memories of how my life was and of all of my hopes and dreams for a life filled with laughter and friends and family. I had dreams of traveling the world.

So, where did the years go? They went into teaching hundreds of children. For more than 18 years I lived for teaching. I made it my world. Life revolved around my students and what I could do to make life better for them in learning situations but also life lessons. I don’t regret the passion and drive I had when I was teaching, I just wish I had taken more time for me. More time with family and friends. I think about occasions I missed because I would not take a day off, or opportunities that were presented to me that I passed up. Again, no regrets…I am where I am today because this is where I belong.

Where did the time go? It went to so many unbelievable years working at camp and participating in CNYFTY. Probably the best years of my life. I met the most amazing group of friends and truly felt like I was living my best life; teaching school and working camp!! Who could ask for anything better?

Where did the time go? This is when everything seems to get blurry. You see, my thirties seemed to have escaped my memory. Not the teaching aspect, but the social aspect. Did I become a recluse? Was it anxiety and depression that created a fear in me that stopped me from living my best life? Was it being told over and over again that I am not enough? Was it fear of rejection or of not being accepted? Whatever it was, I made it through to my forties. That’s when things really got exciting. On August 1, 2013 I received a kidney from my brother-in-law, Lee. He gave me a second chance at life and I was going to get back in the game and use this opportunity to live my best life, again.

Well, the Universe had other plans; My body started rejecting my new kidney and as of March 2019, I had to go back on dialysis and continue to go 3 days a week for 4 hours per session. So, the hunt for a kidney begins once again. I am on transplant lists and am constantly in search of a living donor. “How do you get through all of this?” A question I get quite often which has a very simple answer. I either get through it or I die and I am not ready to leave this earth.

So, you see, THIS is MY 50!! I have learned to treasure moments with people, laugh more often and louder than ever before, help others when I am able, and try to live my best life, again. Fifty is MY time and I am going to make the most of it. This is just the beginning!!

Becoming A Donor

I am in need of a hero. I need a kidney transplant and I pray that someone reading this can help. Please share my website, StacyNeedsAKidney.com. Follow me on Facebook at StacyNeedsAKidney. Please help me find my hero.

I have provided some resourse to help with the education of organ donation.

https://www.tgh.org/services/transplant

https://www.kidney.org/transplantation

My Story

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 livingkidneydonor@tgh.org