September 2025 Update
THE TIME IS NOW
They say “don’t bury the lead” - so for that reason I’m starting this update with a plea for your help to find a living kidney donor. I am now in Stage 5 kidney failure, and in need of a transplant now in order to return to living a full and healthy life.
If you or someone you know is curious about living donation don’t hesitate to contact the team.
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!
The gift of life display outside the Transplant Unit at London’s University Hospital
AN OVERWHELMING MONTH
The past month has brought even more to update as well as a rollercoaster of emotions. While it has been difficult to navigate at times, I’ve learned a lot and am clearer on what is needed.
DIALYSIS CATHETER PROCEDURE
Not long after my last update, I had the Peritoneal Dialysis Catheter inserted into my stomach. I’ve never had any type of surgery before, so I was quite nervous. Additionally, I was really hoping that I would be able to avoid dialysis altogether and have a preemptive transplant from a living donor instead. So, the procedure brought a range of emotion. The insertion went well and overall the recovery was not too bad.
DRY RUN
Less than a week after the catheter procedure, we got a phone call at 3AM. It was the transplant coordinator advising that there was a kidney available and I was the best match. I had to be at the hospital for 8AM to be prepped for transplant. I can’t even explain the thoughts and emotions that run through your mind after taking that call. Shock, fear, worry, hope and sadness because it meant that someone else had lost their life… honestly, think of every possible emotion and I’m sure I experienced it all within the first 30 minutes after hanging up the phone. I got out of bed and thankfully the cat instinctively knew that I needed something, hopping up on my lap and curling up for a cuddle. Both Jack and I needed some quiet time to process the emotions.
We drove to the hospital and were taken to my room in the transplant unit where we started to meet various members of the transplant team… the unit nurse, several nephrologists and surgeons. They ran several tests to make sure I was still fit for transplant and then we waited for the organ to arrive at the hospital. Unfortunately, when the kidney arrived, it was deemed not fit for transplant and I was released to go home around 2PM… This brought another wide range of emotion that I can’t even describe.
Apparently they call this a ‘dry run’ and it can sometimes happen. While it was a very difficult day, I also feel it was an important part of my journey as it further highlighted the reasons why a living donor kidney offers the best chance for success:
A living donor kidney usually works right away, while a deceased donor kidney can take days, weeks or months to begin working properly (they call this sleepy kidney)
A living donor kidney lasts 5 years longer (on average) than a deceased donor kidney, which could be the difference in me needing a second transplant in my lifetime or not
A transplant from a living donor would be scheduled, meaning I would be able to better physically and mentally prepare for it
CATHETER CARE
The day after the dry run, we had to return to the dialysis clinic in order to learn how to care for the catheter exit site and flush the catheter. This was a full day of review and practice, which was also difficult to do after the events of the day before. I’m grateful that Jack is so helpful through all of this and have great admiration for those who do this on their own. There was a small complication in the first week as the exit site was leaking and they are very vigilant about infection, so we had to follow some additional safety protocols when doing the exit site care and they also prescribed antibiotics to ensure no infection. This also meant a few extra trips to the dialysis clinic as they wanted to be sure the leak had stopped and there was no infection. Thankfully everything is now healed and we are into a regular routine of daily exit site care and catheter flushes twice a week. Now we wait for the doctor to determine when I need to begin dialysis.
Having my peritoneal catheter flushed for the first time.
SOME RAW EMOTION
Last week, I attended a TAP (Transplant Ambassador Program) Webinar entitled ‘Protecting Your Mental Health on the way to Kidney Transplant’. It included a panel discussion with transplant recipients, who shared their experiences and feelings as they were awaiting transplant. It felt as though this came along at just the right time for me as it’s really hard to describe the toll that all this takes on your mental health. When you talk to people about what you are going through, they often want to find the positive things and encourage you to stay positive. I am naturally that way too. I want to remain positive and don’t want to burden others with the stark reality of the situation. But, I also experience some very difficult feelings of guilt, fear and doubt, which I have to honour as part of this process. A common feeling that was mentioned by transplant recipients is how hard it is to look for a living donor and how much it impacts your self-esteem - I am just an ordinary human being that needs help from someone extraordinary. Please share my story with everyone you can. I know that extraordinary person is out there! Interestingly, when you listen to donors tell their story of donating, most do not consider themselves extraordinary at all… they say they’re just regular people who see an opportunity to help someone else.
KIDNEY WALK
Even though my energy levels are very low, I decided to participate in the Kidney Walk again this year. I hadn’t originally registered this year because I wasn’t sure how far I’d actually be able to walk. But after the all the ups and downs of the past month, it feels like this is the most important time to do the walk… to show support for others who have come before me and who will inevitably come after me. Over the past year, it has become very apparent just how far research and care has come for those with PKD, those in kidney failure and also with transplant processes. If I can help raise funds to help support this work, I will walk as far as I am physically able to.
If you are able to sponsor my walk, I would greatly appreciate it. No donation is too small and tax receipts are provided for donations of $20 or more. You can find my Kidney Walk page here:
YOU CAN HELP - HERE’S HOW:
As a final thought for this month, I’d like to ask that you challenge yourself to tell at least two people about my story this month. I’ve read so many stories about how people find their donors and it often comes from a conversation at a coffee shop or with a random colleague, acquaintance or even a stranger. This is what I need more than anything else right now - for my network of family, friends and colleagues to become my advocates and help me to find a living donor.
As always, my thanks for your support!
