Polycystic kidney disease (PKD) is in my husband Adam’s family. It’s a genetic disease where cysts form in the kidneys and gradually take over the healthy kidney tissue. Adam and I met when we were teenagers, and the first time I met my in-laws in 1999, they had just undergone transplant surgery - my father-in-law Roger donated a kidney to Roxanne, my mother-in-law. They were literally still shuffling around the house in slippers and housecoats on the day I met them, and I am glad to report that the transplanted kidney is sill working well, almost 24 years later. I remember deciding in their living room that donating a kidney was something I would do, thinking at the time - and for many years after - that it would likely be to Adam. But when Adam’s older brother Josh’s function declined to the point of transplant discussion in August 2021, Adam asked if I would consider donating to him. Of course we talked it over at length and came to a decision together. I have plenty of sick time saved up through work, I’m healthy and able right now, we don’t know what tomorrow might bring, so we discussed and agreed that I would at least start the process and see where it led. Over the first few months, I passed the initial screening, which led to our blood being tested, and it turns out that we’re an excellent match. So after the initial few months of screening, I began the extensive work-up process to evaluate my health and suitability to donate just over a year ago.
Adam also has PKD and will quite possibly need a kidney in the future, but we don’t know when that might be, or what might happen between now and then that could affect my ability to donate. Our two kids each have a 50/50 chance of having PKD. They have not been tested (a kidney ultrasound would show cysts), and we don’t know if either of them have it. So they could either potentially need kidneys one day themselves, or be willing to donate one to Adam (or not). There are so many unknowns. I do know, however, that this evaluation process has been challenging, and that it would be SO much harder if I was hoping to donate to Adam. Juggling the stress of an ill partner at the same time as undergoing the testing, parenting, working a regular job and worrying that at any point I might be rejected as a donor and where that might lead would be a lot to handle. And so, we are going with the information we have, which is the best we can do, and trusting that in the future there will be people able and willing to consider donating to whoever in our family might need a kidney.
This is all very big and serious stuff, so memes are helpful.
I think that for most people, the extent of thinking about kidney donation is that they see a post online that moves them, they feel warm and fuzzy that someone did something good for someone else, and everyone lived happily ever after. Which is a small part of some stories, but there is so much more! By sharing my experience so far, I’m hoping that you, dear reader, will think a bit more about organ donation.
Firstly, it’s certainly not for everyone, for a million reasons. Of course, some people would simply not consider donating a kidney, which is absolutely fine. (I never want people to think that I think that they’re selfish or something for keeping both kidneys. By all means, feel free to keep your kidneys and appreciate them!) Some people might have religious reasons. A variety of health conditions would disqualify someone from donating (diabetes, high blood pressure, autoimmune conditions, etc.etc.) Here in Nova Scotia, the first basic criteria to donate are: that you have a family doctor, your BMI is under 35, and that you’re willing to donate without coercion. You need to have a family doctor to follow up on anything that might come up during testing. For example, my iron was low, so it was my family doctor who followed up, and my iron is now fine. (This could also be something far more serious, of course.) Don’t get me started on BMI - I am jumping through the hoops and can’t fight that rule. I lost 10-15 pounds back at the beginning of the process.
The testing process is thorough, and the donor needs to be prepared for anything to be discovered in the process. In most cases, the whole process takes between 6-8 months until surgery. I am currently at month 18. Anything at all that comes up in any testing is investigated as throughly as possible to ensure as far (as possible) that the surgery will do as little harm (as possible). So, for example, my white count is generally a bit low. Without any other symptoms, family doctors would call it idiopathic and send me on my way. My transplant team, while doing their due diligence, sent me for a hematology consult. Which meant a wait of two months to see the specialist and another wait of two months for the report. A cyst on my adrenal glad, ruled benign by two radiologists was then referred to an endocrinologist (wait of three months to see him, still waiting for the final report). You can see how the time adds up.
In some places (primarily in the US, it seems), they have a condensed two-day testing period. This makes so much sense to me, and I wish it was a possibility here. Let’s say a person had three people who stepped up to be tested to donate a kidney. Person #1 could go in, have all of their tests done over the two day period, and maybe something came up that eliminated them as a donor. Then person #2 could do their two day testing and maybe they were also disqualified. Then person #3 might be a good match, and they would have things settled fairly quickly. Here, I was responsible for booking the vast majority of my own tests whenever I can get an appointment, and I am still the number one candidate until I am either approved or rejected. Meaning: we are now currently at month 18 of my process, and I could still theoretically be disqualified (although it looks unlikely). In which case another person would begin testing, and Josh would probably have to start dialysis in the meantime. (He’s currently not on it, and we’re hopeful that we can get the transplant done before he needs to begin.) You can see how frustrating and time consuming the process is. Which for me, is so hard. I like to do things and get them done, and all of this waiting, the delays and not knowing have really been tiring. And of course the main thing is that during all of this time, Josh has been getting sicker. I would have gladly had surgery a year ago, but the system is so slow. To be clear, every person that I have encountered through this whole process has been professional, helpful and kind and has done everything they could to move things along, but the system is not designed for speed or efficiency. (This is all for the direct donation process; there are other ways to donate indirectly or altruistically.)
As far as the actual tests, I have had just about everything you can think of. CT scans, x-rays, ultrasounds, EKGs, 24 hour urines (x3!), SO MUCH BLOODWORK, mammograms, pap… I’ve had an iron infusion, a uterine polyp removed, and consults with hematology and endocrinology. I am fit as a fiddle. Right now, everything is done, including the repeat bloodwork, EKG, chest x-ray, 24 hour urines and mammogram because my results from last year expired. We’re just waiting for two reports (which we already know are good, but they need to have the actual reports) to be sent to my team, and then things will move ahead. There could always still be delays if either of us gets Covid (7 week delay until surgery if I get it), or an infection, or if a surgeon gets sick, etc. etc. I’m learning that my timelines don’t mean a thing. I’m still quite consistently hopeful, though - some days are easier than others.
As far as benefits to me, my coordinator keeps reminding me that this surgery is of no benefit to me, which is why they need to be so diligent. Which I understand. I think that there are two benefits for me, though. First, I know for a fact that I am in excellent health - they tried hard and couldn’t find much other than low iron. It’s nice to have that reassurance. Second, it feels good to do good things. So in a way, it’s a bit selfish, but doing all of this and knowing that it’s for someone else feels good. And it will feel very good when this whole thing is done and no longer hanging over me.
I am getting used to “the look", when a new doctor is reading my file and sees that I’m doing all of these tests to donate a kidney. They pause, sit back to process, and look me in the eye to see… something, and say something like “Wow, that’s amazing!” I am of three minds about this response. One: yes, it is - the fact that an organ that has been living in my body can work in someone else’s and that people figured out how to do this successfully is incredible. And it is a lot of work to go through this process. Two: I haven’t actually donated yet, so I don’t feel like I deserve any accolades (although at this point, I am convinced that the appointments and tests so far have actually been more difficult and time consuming (but not more painful) than the actual surgery). Three: not really. I don’t want people to think that this is something impossible or only for “heroes” or “angels”. (I am a very matter-of-fact type of person.) If people think that it’s only something that a certain “other” type of person could do, they might miss seeing the possibility for themselves. There are so many people in need.
The statistics are definitely in our favour. At the 1 year post-surgery mark, 98% of living donations are successful. There can definitely be some bumps along the way, through surgery and recovery for both donors and recipients, and some stories don’t end happily for all kinds of reasons. But the potential benefits far outweigh the potential risks. I risk my life every time I drive my car. I could slip in a parking lot and end up with permanent brain damage. I will be at a higher risk driving to the city for surgery than during/after the surgery itself. I don’t say these things to minimize the significance of the surgery, but it is comparatively less risky than many daily activities.
Josh (pictured above with our boys, many years ago) needs a kidney, through no fault of his own. I have two kidneys that function perfectly, through nothing that I’ve done. I can give one away and live a long healthy life. I want him to be able to walk up hills and feel good as he goes about work and washing dishes and playing with his kids. I want him to have energy to enjoy doing the things he loves. He loves nature and I want him to be able to be out in it, with comfort and ease. Functioning kidneys are something that everyone deserves, and it turns out that it’s something I can play a part in. As with everything in life, there are no guarantees, but taking all of these things into consideration, sign me up.
Even though so much of this process has been long and frustrating, I would do it all over again. There is still so much beauty and joy and funny memes going back and forth despite it all; I feel like this has all sounded quite serious. (Which it is.) I am so happy to chat with people about any and all of these things. I hope that this has been informative and maybe made you consider all of the amazing things going on in your body at any given moment. It’s truly amazing.