JULY 2025 Update
LOTS OF CHANGES
Every time I sit down to write a new post, I am amazed at how fast the time seems to pass and how quickly things change from day to day. A lot has happened since my March update, so I’ll do my best to outline everything as best I can.
TRANSPLANT EVALUATION
I’ve had several appointments over the past few months. Early April was my second day of transplant evaluation appointments which had us meeting several different people on the transplant team. The day started at 8am and finished at 3pm and consisted of meetings with the anaesthetist, social worker, surgeon, more bloodwork and ending with the transplant coordinator. All of the meetings were thorough and each person explained their role in the transplant process and also asked questions to evaluate my fitness for a transplant. I won’t get into all the details here, but I’m happy to discuss it with anyone who is curious - please just ask me! The important thing was that the team felt I am a good candidate for transplant and that I have a strong and healthy heart. I just needed a few final tests in order to receive official approval.
I’M NOW IN CKD STAGE 5 - KIDNEY FAILURE
On a less positive note, I also had my regular Nephrologist follow-up in early June and unfortunately, my kidney function has declined again. Currently, my function is at 12% (a 5% drop since January), so I am now considered to be in Stage 5 - which means my kidneys could fail at any time. Because of this, they want to insert the dialysis catheter so that I am ready for dialysis if my kidneys fail before I receive a transplant. I have chosen Peritoneal dialysis and met with the dialysis access nurse and doctor on June 25th. They determined how the catheter will be inserted and reviewed the procedure details with me. The catheter insertion has been scheduled for July 23rd.
While I am disappointed in this news, I am not entirely surprised as I have been experiencing increased symptoms and discomfort over the past couple of months. The biggest hurdle is that I am having trouble sleeping, which is causing my already low energy level to be depleted. Restless legs, muscle cramping, aches and overall just not feeling well are all symptoms which are taking their toll.
STILL SEARCHING FOR A LIVING DONOR - TRYING TO REMAIN HOPEFUL
If I’m being honest, the thought of the dialysis catheter and daily dialysis is quite overwhelming. I try not to dwell on it too much as fear, anger and sadness will not change my circumstances. I continue to take things one day at a time and focus on whatever immediate hurdle is in front of me. I also try to remain hopeful that a donor will come forward and that I still might be able to avoid dialysis or only be on it for a short time.
If you’d like to find out more about the living donation process, please contact:
London Health Sciences Centre
519-663-3552
The dedicated team 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!
APPROVED FOR TRANSPLANT NOW
The final news is that with my recent decline and having completed the final testing, I was officially approved for transplant and was placed on the transplant waitlist on June 26th. This means that if a living donor is approved, they would be able to schedule the surgery without any further testing. It also means that I am now on the waitlist for a deceased donor kidney although the average wait time is 2-5 years.
Once again, this news comes with a wide array of emotions. While I am happy to finally be approved and through all of the testing, it also means that a single phone call could rapidly change my life. Many of you will know that I am a planner and am not really a fan of surprises, so the thought of potentially getting a call and needing to be at the hospital within an hour for a major surgery is quite overwhelming. It is also really difficult to realize that if I get that call, it means that someone else has lost their life. So I’d like to just pause for a moment and acknowledge all the people that have chosen to be organ donors, or that have lost loved ones who donated their organs. Please know that the gift is truly appreciated and brings another person hope for a better life!
EVER WONDER WHY THE WAITLIST FOR KIDNEY DONATION IS SO LONG?
While we are on the subject of organ donation, something has always had me perplexed. I could never understand why the waitlist is so long for a kidney transplant when a single deceased organ donor could potentially donate 2 kidneys. Just a little bit of research helped me find the answer.
The website beadonor.ca provides information on organ donation and allows Ontarians to register. I’m sure there are similar websites for your province or country if you are not from Ontario. But, this site provides some great insight into organ donation.
Here are some basic stats (they update these numbers quarterly):
Looking at these numbers, you might still wonder why the average wait time for a deceased donor kidney is 2-5 years, but the answer is right on their main page:
“Sadly, every 3 days someone will die waiting. Becoming a donor at the end of your life is exceedingly rare — generally, only about 1-2% of deaths occur under circumstances that make donation possible, and you are six times more likely to need an organ transplant than to become a donor.”
So, only 1-2% of the 4.7 million people that are registered organ donors will actually be able to donate their organs.
YOU CAN HELP - HERE’S HOW:
Over the past year, many people have asked me how they can help. I realize that living donation is not a possibility for many, but there are other ways that you can help not just me, but the others that are waiting for an organ:
Register to be an organ donor or start a registration drive: https://beadonor.ca/drives
In Ontario, some communities have donor registrations as high as 60%, while others are as low as 15%. You can look up the donation rate in your area here: https://beadonor.ca/community/list
Wear a green shirt or green ribbon and talk to people about what it means. Most Canadians will remember the Humboldt Broncos, but many might not be aware of Logan Boulet and his generous gift that saved 6 lives. I encourage you to visit the ‘Green Shirt Day’ website: greenshirtday.ca
Continue to share my story and website. This will help raise awareness and increase the chances of reaching that one special person.
APPRECIATING LIFE’S LITTLE JOYS AND FEELING GRATEFUL
On a non-medical note, as we officially begin summer, we are doing our best to take it easy and enjoy the beauty of our surroundings. We have switched to raised bed gardening this year and I enjoy going out to train the squash plants up the trellis and see the garden come alive. I’m hopeful that we’ll have a fantastic harvest of fresh vegetables to nourish our soul.
We also had a pregnant stray cat show up on our doorstep in April and we’ve enjoyed watching her raise 5 kittens over the past couple of months. Although they are pretty shy, they are hilarious to watch as they play and run all over the yard, climbing trees and then curling up for a nap together in a ball of black and white fluff.
My apologies for the long post. It was one of the most difficult ones to write. The past few months have definitely been challenging for both Jack and myself as we do our best to navigate through all of this. Speaking of Jack, I came across a survey that was done with transplant patients and one thing they all identified was that there needed to be more support offered to caregivers. While so much attention is focused on the patient, sometimes people forget that there is often a caregiver who needs support as well. I can’t say it enough - to everyone who is offering care for someone else, you are a true hero! If you know someone who is a caregiver, remember they need support too!
I’ll do my best to write more frequent posts and keep you updated! Thank you again for your support!
