Voices of PKD: Monique Marsh, Aurora ON
My name is Monique, and this is my story about being a living kidney donor.
My husband David and I are both 58. David has PKD, as does one of our children (that we know of). There's a lot of PKD in my husband's family.
David is one of five kids, and four of them have PKD. They inherited it from their father. Several of my father-in-law's siblings had PKD, as well.
When I married my husband, we talked about PKD beforehand. We didn't really know what it would entail, potentially having children with PKD, but I guess we figured, “What's the worst thing that's going to happen?” It was never a question of not having children, because he and I both wanted them, and both come from big, supportive families.
When my husband's kidneys began to fail, his eldest sister (who didn't have PKD) donated a kidney to him. David’s brother has also received a kidney donation about seven years ago, from a friend. And his youngest sister had a transplant in October 2021, from her spouse.
Since David's transplant, he takes immunosuppressant medications every day. There are repercussions from long-term immunosuppressant use. David has had skin cancer. But we're very thankful that the transplant has extended his life, and that we still have him here with us.
In October 2020, David's sister Sheena started letting people know that she was going to need a kidney transplant. I'd always thought that I might donate a kidney to her, but it just so happened that that period wasn't a good time in my own family's life, and I couldn't make a donation at that time.
In February of 2021, Sheena found out that her husband couldn't donate to her - his numbers weren't right. Things were a little more settled in my life by then, and I started to seriously think about testing to see if I could be Sheena's donor.
Part of my thinking was, Sheena has four daughters, and grandchildren, and I wanted her to have more time with them. Sheena is also a family doctor, and does obstetrics in a small town. She's an amazing person, and her community needs her.
I also thought about my own children, and my nieces and nephews with PKD, and hoped that someone would help them someday. I would be too old to donate to my own children by the time they might need a transplant, and I wanted to donate my kidney when I was still healthy and able to do it.
So I started to go through the process of becoming a living organ donor. I filled out the 12-page application, and got my homework done. I probably submitted it around the first of March 2021, and I was approved for the first round of testing. I was connected with someone at Toronto General Hospital who helped guide me through the process.
All of my bloodwork was really good. I got tested quickly, and around August 2021, they contacted me and said everything was looking good for a match. On Labour Day weekend they were offering transplant dates in October, and on October 29, 2021, the transplant operation happened, and I donated my left kidney to Sheena – two weeks after my other sister-in-law received her transplant.
Sheena is doing very well now. The first year she had some setbacks - it took about a year to iron things out - but she's great now. I'm thankful for that.
It took me a while to recover from the operation, myself. It takes a lot out of you. I wasn't expecting pain for that long, but I had things checked out, and there were no complications. My surgeon was amazing, and he had a wonderful bedside manner.
If there's anything I wish I'd known ahead of time, it's that I would have some mixed emotions after donating. I don't regret it. But in January after the donation, I had a bit of a hard time. I reached out to the hospital to talk to a social worker - I was under the impression that there was going to be some support afterwards.
It's almost like afterwards, you're just supposed to resume your regular life, and I didn't quite know how to do that. I’d gone through this big experience, but had a feeling of let-down afterwards.
When my husband had his transplant, our kids were very young. I worried that he could die on the operating table. At that time there was a peer support program, and I was able to speak with two peer support volunteers, both of whose husbands had had kidney transplants. I thought the peer support was an amazing program. It was really helpful.
I don't know if they still do that. If the living transplant centres are looking for suggestions for the suggestion box. I really wish there was more support for donors afterwards - especially from someone who understands the transplant process, who understands what you've gone through.
It's really important for me to get information about living donation out there. You can donate a kidney in good health, when you're older in age. I was 56 and Sheena was 60 when she had her transplant, and we're doing amazing.
You don't need to be a marathon runner (although I wish I'd been in a bit better shape). You don't need to be related by blood to donate to someone. You can donate a kidney without too much disruption to your life. And you can live a very healthy life with just one kidney.
A lot of people that I’ve shared my story with had no idea that living donation is a possibility, and not that difficult. Even people in the medical profession are not fully aware of all the possibilities. You need to advocate for yourself and set a goal. I was fortunately very aware of the possibility of pre-emptive transplant because of family members who had had one.
I'm glad that Sheena had the transplant earlier in her disease progression, rather than when she was already on dialysis. She was physically well, going into the surgery, and therefore she had the best outcome. I didn't want her to have to go onto dialysis. The surgery prolonged her life in a healthy, happy way. I mean, how many people get a transplant before they really need it?
I want everyone to talk about living transplants so that my kids, and my nieces and nephews who are likely going to need a kidney at some point, have a better chance at finding a living donor.
This cause is incredibly important to me, and I want my message to reach as many people as possible, whether they have family members with PKD or even those who do not. Living transplants unify us, and bring people from all walks of life together. My goal is to convince everyone who is reading this article, to share my story with your family, friends, and co-workers. Together we can spread valuable information, and ultimately save lives!