Posted yesterday at 4:00 p.m.
I learned at 15 that I had polycystic kidney disease (PRD), or polycystic kidney disease. PRM is an inherited disease where cysts multiply in the kidneys until they have torn them so much that they can no longer filter the blood, causing kidney failure. There is no cure for PRD and the only solutions for someone with end-stage renal disease are dialysis or transplantation, which are solutions with severe repercussions on the patient’s life.
When my diagnosis was announced 20 years ago, I told myself that at worst, maybe one day I would need a kidney transplant. For years, I had no consequence of the disease.
Then, the thirties arrived, and things took a turn for the worse. After a change of doctor following a move, I discovered that at 33 years old, my kidney function had returned to 30% and had actually been declining by 7% per year since 2015.
This is where my life changed. This diagnosis came with a ban on childbearing before a kidney transplant. The family project that my husband and I dreamed of turned into a disastrous egg retrieval operation. We hope that one day, after receiving the transplant, we will still be able to succeed in founding our family.
I have been off work for almost two years in order to rest until a possible transplant. In the meantime, I am constantly sick to my stomach, very tired and I have frequent episodes of brain fog. I have trouble thinking. At 36, my kidney function is only 13% of its capacity; I am now in end-stage renal failure.
There is no one around me who can give me a kidney and I have been on the cadaveric donor waiting list since October 2021. Normally we expect a delay of two or three years before a transplant as part of of this process, but the delays are getting longer and longer due to the shortage of organs in Quebec. In the groups of kidney failure, people who currently receive a kidney have usually waited more than four or five years before their transplant.
Moreover, 26% of the families of potential donors refused to have their organs removed upon their death in 2021, according to Transplant Québec. We can never say enough that signing the famous sun card is not enough, we must discuss our post-mortem wishes with our loved ones as well so that they can respect them.
With all this information, I believe less and less in a transplant for me within a reasonable time by the waiting list, especially considering the desire to start a family before we are too old.
Since it’s not my style to just wait at home, I take all the energy I have left and invest it in raising awareness about my illness, organ transplants, and finding a living donor on my blog1. My hope of getting a kidney quickly is now embodied through the sharing of my articles and my story by my readers. Who knows, maybe I will be able to join someone who will and can give me a kidney, so that I can resume my life where I left it!
Every year, September 4th is Polycystic Kidney Disease (PCD) Awareness Day, also known as Polycystic Kidney Disease. I want to raise awareness about this disease and the fact that there is still no cure. The Government of Canada and 41 Canadian mayors recognize this special day in a variety of ways, including lighting Niagara Falls in teal (the color of our disease). We need money to finance research, and that requires a better understanding of the disease by the population.
On September 11, I will also be attending the Canadian PRM Foundation Annual Walk2 to Montreal. We want to raise funds to find a cure for PRM.
I hope to share my story and the facts about my disease more widely through you. If my story interests you, do not hesitate to contact me.