March 2025 Update
IT’S BEEN A YEAR
March is Kidney month and it’s hard to believe that we launched this website exactly one year ago! While this site is about my story specifically, and my journey to find a living donor, I hope that it also brings awareness to PKD, CKD and the benefits of living donation. There are so many people with stories similar to mine - maybe even someone you know!
This past year has been quite a journey and I thank everyone who has shared their story, supported, guided and cheered me on over the past year. While 2025 brings optimism and hope for the upcoming year, the past year has also brought a lot of challenges and information to process. I did not choose this journey, but it is the one I am on, so I do my best to take each day as it comes with grace and determination.
WHAT’S CHANGED SINCE I LAST TOUCHED BASE
We spent the holidays at home and I appreciated the quiet time to rest, relax and recharge. While I am still feeling ok overall, I am really beginning to notice the impact that kidney disease is having on my energy. For example, we went Christmas shopping at the mall and climbing one flight of stairs left me winded and exhausted. I’m not able to do hot yoga classes anymore and if I push myself too hard, it takes me days to recover.
I saw my nephrologist in late January for my regular check-up. While my kidney function (eGfr) is not declining as rapidly as it was, it is now sitting at 17%. Unfortunately, there is no crystal ball on when my kidneys will fail, but it’s just a matter of time. Kidney failure typically occurs somewhere below 15%.
SOME GOOD NEWS
The good news is that I have completed phase one of the transplant process (the pre-transplant workup). In my last post, I mentioned all of the tests that were involved, which meant lots of trips to the hospital and doctor’s office. The next phase (2) is called the transplant assessment, which is where the transplant team meets with me and reviews all of my tests to determine if I am a suitable candidate for transplant. I met with the transplant nephrologist on March 5th, and will meet the rest of the transplant team on April 10th. This appointment was very informative and I was grateful for some of the things that were made crystal clear to me during this initial assessment appointment: my best option for an improved quality of life, and longest lifespan is a kidney from a living donor.
DID YOU KNOW:
approximately 70% of people on the organ transplant list in Canada are waiting on a kidney?
Only 3% of Canadians with incident kidney failure received a pre-emptive kidney transplant in 2023 (N = 181); proportions have remained consistent across the last decade.
The average wait time for a kidney transplant from a deceased donor is 3.4 years AFTER you begin dialysis? You do not even go on the kidney transplant list for a deceased donor until you have begun dialysis! This is why living donors can have such a big impact! I came across this infographic, which puts these numbers into perspective.
THANKFUL AND I STILL NEED YOUR HELP
I want to thank the people who have come forward and considered living donation already! Unfortunately, I am still looking for that perfect match and I need your help to find it! Please share my story as much as you can. Talk about it with your friends and family, and share my website on your social media - it just needs to reach that one person!
WHAT IF IT WASN’T ABOUT CHANGING MY LIFE - BUT ABOUT CHANGING YOURS?
For anyone considering living donation, please contact
London Health Sciences Centre
519-663-3552
The friendly folks at LHSC are available to answer all of your questions. Many people think they cannot be a donor for various reasons, but they are often wrong. Please don’t make that assumption, but call and ask instead. It is anonymous and there is no commitment. Not only could it change my life, or help one of the other thousands who are also waiting for a kidney - but maybe (and more importantly) it could change yours!
A HEARTFELT MESSAGE ON WORLD KIDNEY DAY
In closing, March 13th was World Kidney Day, and I’d like to share something from the PKD Foundation of Canada:
“On World Kidney Day, we pause to recognize not just the disease itself, but the people behind the diagnosis - the individuals, families, friends, and caregivers. We recognize you.
You didn't choose PKD. When you choose to keep going despite the pain, to ask questions even when the answers are hard, or to offer comfort to someone else even though you're hurting yourself, you're making a profound statement. You're saying, "This disease may be a part of my life, but it does not define who I am."
This message literally brought me to tears. I truly appreciate all the people who have supported me through this journey and the acknowledgement of how difficult it is.
