Polycystic Kidney Disease (PKD) is an inherited disease where cysts form in the kidneys. Over the years, cysts multiply and tear the kidneys, until they cause kidney failure. To date, there is no cure for PKD. The only options for a person with the disease and end-stage renal failure are dialysis and/or kidney transplant. More than 13 million people live with PKD worldwide, and I am one of those people.
Bike to the Moon, 2022 Edition
To raise funds to find a cure for PKD, the PKD Foundation of Canada is once again organizing the annual Bike to the Moon bikeathon. Our goal is to cycle the distance from the Moon (384,400 km) and raise funds for vital research in the fight against PKD in Canada. The event will be from June 1 to June 30, 2022, so we will have a month to do as many kilometers as possible for the cause!
Moving, an ordeal for me right now
As you know, these days, I am having a hard time being active given the progression of my disease. I am more and more tired and nausea is very frequent and still intense. I have gained 15 pounds in 2 years. I can hardly mobilize myself because I tire quickly, and unpredictably. It makes every outing risky! I get out of breath really fast too, due to the lack of red blood cells in my blood (they are the ones that carry oxygen) related to my kidney failure. I really need to be attentive to my body’s signals. If I’m not careful, I might need to call my boyfriend to pick me up.
Eating also makes me nauseous, and I’m not hungry anyway most of the time. But if I don’t eat, I become even more nauseous and have to lay down. I am caught in the famous Damned if you do, damned if you don’t. So I snack more often than I would like, to be less nauseous and to be able to continue my days without having to go to bed in the middle of the day. In addition, if anything touches my belly, it increases the feeling of nausea.
For me, who is a very active person normally, this involuntary immobility is really difficult to live with. In addition, I want to stay as healthy as possible until the transplant, for it to go as well as possible!
An opportunity to move for a good cause
So I want to move more, but it’s difficult for me right now.
When I saw that there would be a velothon to find a cure for PKD, I still immediately thought I should participate! Cycling normally takes a big place in my life, I’ve done a lot of bike-camping across Quebec and I love riding long distances to explore with my hybrid bike!
While bike-camping, the most I did in a single day of cycling was from Mont Orford to Longueuil in one day. It was a distance of just over 150 km! All this while dragging my tent and all my gear hanging on my bike. I miss doing challenges like that!
We will bike to the moon… or to the corner of the street! 😛
Without being able to live challenges of this magnitude, I can still try to do a little!
This year, I decided to create a team for the bikeathon to raise funds and encourage me to get active, despite the bodily inconveniences I am experiencing. I don’t know how many kilometers I will be able to do. I will only choose courses without any big hills. I may realize after an outing that cycling is too much for me now.
No big deal! The important thing will be to try, and continue to raise awareness about PKD!
If you want to be part of my team or to form one with your family, friends or colleagues, know that registrations only start on June 1st!
For those who want to be on my team, I accept everyone, whether you’re thinking of doing a single 5-minute ride in the month or if you’re a bike maniac! All that matters is that you are willing to count your miles and share your experience in your networks! I believe that alone, my commitment can make a difference, but it is really with you that it really achieves another level!
I’ll notify you on my facebook page as soon as I create the team on June 1st, so make sure you’re subscribed and get notifications when I post! If you have any questions, do not hesitate to consult the page of the bikeathon, or to write to me. 🙂
I hope that many of us will live this adventure! See you soon, friends!
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