Voices of PKD: Judith Belair-Kyle
Hi! It’s me, Judith, who told my story here almost a year ago. Since that time, a lot of things have changed. I am now transplanted with a new kidney, which a stranger gave to me thanks to my search for a donor on social media! I was asked to tell you about it all here.
Summary of My Story
I have polycystic kidney disease (PKD), was badly taken care of by my doctor and learned at 33 that I could not have children before a kidney transplant, since I only had 30% of kidney function left. This news devastated me, since my partner and I were a few months away from starting our family. Quickly, we decided to freeze eggs to have options after a future transplant.
Two years later, I was in terminal renal failure (kidney function less than 15%) and was on the list of cadaveric donors, without having much hope that it would be my turn one day. For some mysterious reason, my kidney function stopped dropping around 14%. Despite my many more than bothersome symptoms, I was not allowed to do dialysis. As a good part of the points given on the list are those of the number of days on dialysis, I knew that the chances of ever being first on the list were very low.
Because of my symptoms, I was no longer working and – obviously, still couldn't have children. As soon as my nephrologist started talking to me about the transplant, he also spoke about looking asking around me, to see if anyone could donate a kidney to me. If I couldn't find one, he suggested I do a campaign on social media to find myself a donor I knew – or even to find a stranger who would be willing to help me!
Finding a Donor Online
It took me a few months to really start the process. Why? First, I wasn't sure how. Second, it involved making my life pretty public, and I had to decide if I was ready to do that. Third, asking the entire universe for a kidney seemed a bit presumptuous to me, and awkward to ask. The words of my nephrologist nevertheless stuck in my head, and I finally created in 2021 a Facebook page dedicated to my kidney research.
I posted a first post on my page, telling my story and asking people to share. I had put resources on living donation in there, as well as the phone number to reach my transplant team, which I had notified beforehand. This article has been shared over 200 times and reached over 12,000 people.
Last year, in 2022, I created a blog (pkdwarrior.com) to talk about my experience as a PKD patient and the transplant process. I wrote to many media outlets to tell them my story and raise awareness about the kidney cause, and did more than twenty interviews in French and English on the subject. Each time, I named my need to find a donor, but by raising awareness of the cause of organ donation and PKD, which gave meaning to what I was going through. I was exhausted and spent a lot of time lying down, but I knew I had to be the architect of my future, if I didn't want to wait more than 5 years before getting a transplant.
In September 2022, I received a call telling me that a compatible donor had completed the tests, and that I could be transplanted either at the end of November or the beginning of December.
I was stunned. I hardly believed it. I had put my efforts into finding a kidney, but did not have much hope, so as not to create too many expectations.
But it was true. On December 1, 2022, I was transplanted with a perfect kidney from a person who was totally unknown to me before this adventure. 3 months post-transplant, I am much better and can even exercise! I am still very tired, but I manage to do a lot more things. It's not perfect yet, but we're headed in the right direction!
And in a year, we should be able to start our family. ♥
My message is a pretty simple one: even when you feel like you have no control over your life, there are places where you do. Find what can help you the most, and put your available energy into it. You can help yourself, and it will make a difference!
Judith was recently documented sharing her story by Radio-Canada. "Suffering from a degenerative kidney disease and short of resources, Judith, a resident of Trois-Rivières, appeals for help on social networks to find someone willing to donate a kidney to her and thus ensure her survival and preserve her dream of founding a family. Her cry from the heart was heard as far away as Bury, in the Eastern Townships, by Frédéric, a market gardener from the region who decided to take steps anonymously to make Judith's wish come true."
Watch the full video here (Note: the video is is French)!
Facebook : facebook.com/thepkdwarrior
Instagram : instagram.com/judithonajourney
Webpage : pkdwarrior.com