September 2026 Update
PROGRESS IS NEVER LINEAR
Having settled into a dialysis routine and enjoying some increased energy, I was hopeful that this summer would provide a few more opportunities to get back to doing some of the things I love. Unfortunately, I’m learning that this journey is definitely not linear and bumps in the road are to be expected.
Having more energy this past spring, I was so excited to be able to plant and tend to the vegetable garden this year.
1-YEAR REFLECTION
It’s hard to believe that it was over a year ago that I had my Peritoneal Dialysis (PD) catheter inserted. I’ve also been on the transplant list for 14 months now. The last half of 2025 was particularly tough as my energy level sank and I felt progressively worse with each passing month. While I didn’t want to do dialysis, it reached a point in March of 2026 where I had no other choice. If you are a regular follower of my blog, you know that all of this has taken a toll both physically and mentally.
PERITONEAL DIALYSIS COMPLICATIONS
Starting in early March, I have been doing Peritoneal Dialysis (PD) every night for 8 hours while I sleep. As I mentioned in my May blog, it has not always been easy and there were a few complications early on, but once Jack & I settled into a routine and I got used to sleeping on the machine, things really began to improve. I felt better than I had in a couple of years - my energy level had significantly improved and I was able to do things I hadn’t done for quite some time such as gardening and cooking.
Unfortunately, in late July, I experienced some issues with my catheter and was sent for an Xray, which showed that I had fluid on my right lung (called a pleural effusion) and a subsequent CT scan confirmed that the dialysis fluid was leaking into my chest. Apparently, this is an uncommon complication of PD (1-2%) and the treatment for this is to pause dialysis in order to give the leak time to heal (the chances of it healing are about 50/50).
This is the X-ray of my lungs. The white part in the bottom left of the image (which is my right lung) is the PD fluid that was leaking into my chest. I had to stop dialysis and hope that the leak would heal.
As a result, I was off dialysis for almost 6 weeks over the summer, and the PD team closely monitored my bloodwork and kidney function. While it was nice to have some freedom from the nightly routine and being tethered to a machine, it was also difficult as I once again began to feel tired and sick as time went on. It was a stark reminder that the PD is keeping me alive.
CAUTIOUS OPTIMISM
On September 1st, I restarted dialysis with the hope that the leak was healed and that I could once again get back to feeling better and enjoying the last few days of summer. As of the time of this writing, I have completed 12 nights on the PD machine and so far, the fluid has not leaked into my lung again. While I’m still on a low volume of fluid and it’s too soon to say definitively, we remain cautiously optimistic that the leak has healed.
WHY SHARING & TALKING ABOUT THIS MATTERS
I recently came across a clever video done for the Michael J Fox Foundation. While it discusses tips for what to do when “your friend tells you they have Parkinson’s”, I think they are fantastic tips that can be applied to any illness, disease or disability…
My favorite is tip #4 - KEEP SHOWING UP - when Michael responds to the question: ‘What’s the biggest mistake people make?’ He says: “They worry so much about saying the wrong thing, that they stop saying anything.”
I can tell you after 2 years of living with Kidney failure that this is definitely true! Jack & I have been living with this disease every day for the past 2 years and we need your support as much today as the first day we told you.
So please don’t stop saying anything - it doesn’t have to be weird! We need you to keep showing up! I need you more than ever to share my story and to help bring awareness that I am still looking for a living donor.
THE SEARCH CONTINUES FOR A LIVING DONOR
Speaking of finding a living donor, this week (September 13-19) is ‘Living Donation Week’ - a chance to acknowledge all the wonderful people who have given hope to someone else. It’s also a chance to provide hope and support to the many others who are currently waiting for a transplant.
How can you keep showing up? Share this blog post, help to advocate for me, follow me on Instagram or Facebook and share my social media posts with your network. Check in on Jack and I and ask how we are doing. Any of these things only take a few minutes out of your day, but would mean the world to us and could help bring hope to life.
Please help us raise awareness and share my story!
FOR LIVING DONATION INFORMATION
As a reminder, if you speak to anyone who is considering living donation or who wants more information, please encourage them to contact my transplant center (share the link to this blog and let them know the information is at the bottom):
London Health Sciences Centre
Multi-Organ Transplant Program
519-663-3552
livingkidneydonation@lhsc.on.ca
Mention you would like more information regarding a directed donation for Krista Merkley.
Reminder that there is no commitment required - you can call just to get more information! And it’s anonymous!