For the past two months, I have been meeting more and more people related to kidney disease and organ transplantation. I’m trying to get to know my community better, and it means a lot to me to hear other people’s stories. Surprisingly (for me, anyway), everyone’s story with the disease is very different. It allows me to see the disease through other eyes, and to better understand what awaits me with the evolution of Polycystic Kidney Disease (PKD).
I had a discussion group on living kidney donation organized by the Maisonneuve-Rosemont Hospital, a discussion with kidney patients from the Kidney Foundation of Canada and another with PKD patients with the PKD Foundation of Canada. I also did an interview for the youtube channel ACB Organ Health (African Caribbean Black Organ Health), which will be released during the month of April. All these meetings are done remotely, by teleconference.
Hearing the stories of others to better understand my own
A few weeks ago, I had the chance to attend a focus group on living kidney donation, organized by a social worker at Hôpital Maisonneuve-Rosemont. I was surprised by how good it felt to talk to other people who have the same symptoms as me, and who are experiencing a reality similar to mine! I think it soothed me a little bit to hear their stories. It made it normal to suffer from my symptoms. Kidney failure is an invisible disease: one can not often see at first glance how sick the person is and how they are feeling. Sometimes, I see myself in the eye of those who don’t know how bad I feel and I wonder if it’s that bad for me.
Well yes it is. And it’s okay.
We had a great group, it was funny, it was touching, and it was informative. Basically, it made me feel better.
Mademoiselle gref
In addition, Mademoiselle Gref was there to tell us about her own journey. She had a kidney transplant a few years ago and went through all the same steps as us. While she was waiting to find a kidney, she was writing a blog on facebook, like I first did! Her page is active and she still publishes regularly, if you are interested 🙂 (Her facebook page is in French). It was through this page, and through her volunteering for the Kidney Foundation, that she was able to find a donor (article in French).
That is encouraging 🙂
To learn more about her story and what she continues to do for the cause, click here (I think you can have access to some English subtitles on the video).
A decisive meeting
I also had an important meeting a few weeks ago through my facebook page. The coordinator of the Quebec chapter of the PKD Foundation of Canada, Luisa Miniaci, contacted me after finding about my story on the web. I have been thinking about getting involved with the Foundation for a while, within the limits of my energy, of course. Through her, I am getting to know this Quebec community linked to our disease, and I hope to be able to help her a little to make the organization shine.
Luisa has been working for years to raise awareness of our disease in Quebec and Canada, with local and national elected officials. Among other things, it is thanks to her that in Quebec, in September, we have a walk to raise money. These donations are used to fund research to find a cure for PKD, which currently has none.
While working to spread my story and respecting my energy, I will try to help her in her mission. I hope I can be helpful to the cause 🙂
I will no doubt tell you again about what she is putting in place to raise awareness among the population! The best is yet to come!
Discussions to learn more about the progression of PKD
I have also had the chance in recent weeks to meet other people, whose story I will keep quiet since I did not ask for their consent to talk about it, unlike Miss Gref and Luisa. However, thanks to one of these people, I was made aware of the longer-term impacts of PKD.
This person received a transplant more than 30 years ago, and the new kidney is still functional. When a kidney transplant is received, the polycystic disease fortunately does not attack the new kidney. However, as that person told us, a kidney transplant does not solve everything. PKD can also attack other organs (e.g., liver, pancreas, etc.). I admit that I had forgotten that the disease would still progress in my body after the transplant.
In fact, more than 80% of people who have PKD will develop cysts on the liver. Cysts can become so numerous that the liver can grow to a size of 5-10 times the size of a normal liver, when it is already the largest organ in the human body. It comes with a body deformed by a belly swollen by the giant organs. It comes with pain created by internal compression.
And in my last internal images, we learned that I have just started to develop cysts on the liver.
By talking to other people who have PKD, it also prepared me better for the post-transplant. The fight won’t stop there, but I will always fight! Let’s find a cure for this incurable disease!
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