Left: my cousin and I the evening before our surgeries
I have to admit, I keep calling April “donor appreciation month” I guess that’s what it feels like to me after receiving a kidney from my hero cousin
As if donating a kidney to me wasn’t enough, I asked her to write a piece for my blog about her experience with being a donor. And she said yes! So with my gratitude and endless love to my cousin, I would like to present her piece💕 Enjoy.
My Kidney Donor Experience
My kidneys, or kidney disease, were not something I thought about much. I knew my cousin Reena had kidney disease, but apart from the odd remark I heard, it wasn’t something that I was very aware of, especially since Reena never complained about it and rarely talked about it (in my hearing anyway).
In November of 2016, I received an e-mail from Reena’s sister Becky, that Reena’s kidney function had dropped to the point where she would have to start looking for a kidney donor. It was sent to her family and friends. It was very strange to think about such an idea: I didn’t personally know anyone who had to consider being a donor.
I reached out to the Live Donor Coordinator to find out how to start the process. It began, I believe, with a detailed interview about my health: Did I have diabetes, any heart issues, high blood pressure, etc? I then was given a requisition for blood work. I have no idea how many vials I gave. Within a few weeks, the Live Donor Coordinator contacted me to tell me I was eligible to continue to be evaluated as a donor. That meant that my blood type and the antibodies in my blood would ‘work’ with Reena’s.
All of the remaining tests that I had done (and there were MANY!!) were primarily to make sure that donating a kidney wouldn’t adversely affect my health. The donor side and the recipient side are kept strictly separate, and ‘my side’ kept my best interests foremost. Reena didn’t know I was being tested as a donor until April 2017. There were a few bigger hurdles to get over (blood pressure issues for example) before I could continue with testing.
I will say that it took a lot of dedication to see the process through to the end. I would do one test, wait a while for the results, have another test scheduled for a month out, wait a few weeks for the result. For example, in order to resolve my blood pressure issue (I’m thankful to this process for making me aware that I had an issue) I had to wear a blood pressure monitor for 24 hours three separate times. Why did I stay with it?
• Reena is family. While she and I weren’t particularly close growing up, as she is a teensy bit younger than me, our families were very close and her mom in particular, had a very strong positive influence on my path in life. It felt wonderful to be able to pay that forward, in a way. I knew that if I were in her situation, they would be getting tested.
• As you can imagine, I started reading a lot about kidney disease and joined Facebook groups for people with the disease and potential donors. I was absolutely stunned by the every-day and persistent courage of the people I read about. I had a very vague idea of dialysis and knew it would be a huge inconvenience, but that was it. I didn’t know that a person might have a fistula (surgery to prepare a person’s veins for dialysis access) fail, so might eventually have multiple access points. If they don’t respond well to one type of dialysis, they might need to try another. I became acutely aware of the privilege that my good health is.
• It felt amazing to be able to participate in such a thing
• I became committed to seeing the process through as far as I was able
I had to trust that all the testing was being done to minimize risk to me and to put faith in that process. The majority of donors do just fine after donation. Through my reading, however, I became aware of people who experienced life-altering negative consequences as a result of donating. Although the risk is small, it is there.
Finally, I made it through all the tests and in early December 2017 found out I was approved as a donor. At each step along the way, I was told by ‘my side’ that if I decided I didn’t want to proceed any further, the recipient would be told that I wasn’t medically suitable to continue. There was comfort in that.
We had a surgery date set, of March 6, 2018. S*** was getting very real! I had been speaking to my kids about it throughout the process and they seemed to be fine with it. I know it was difficult for my other immediate family members (and Reena too!), as they were mainly concerned for my welfare and were concerned about even the tiny risk of serious harm to me. I understood that and it was probably more difficult for them than it was for me.
One of the more difficult things was deciding whether to talk about it or not. For a while, I didn’t want to talk a lot about it, in case I wasn’t eligible. I also didn’t want to be attention-seeking, so I talked about it, or didn’t, in very random ways. I know that I’m not selfless, that the decision involved an amount of both ego and altruism. Some people I talked to a lot about it, but except for a very few people (my Director and Team Leaders), no one at my work knew about it until the week before. That was weird in its own way.
Eventually the day came. The surgeon told me the day before that I would be having an open procedure, as opposed to a laparoscopic procedure, because of scar tissue from a ruptured appendix and the fact that I had an extra artery on both kidneys (who would know that?). It meant a longer scar and maybe a longer recovery, but I was ok with it. I just wanted it done properly!
The surgery went very smoothly and my recovery has also. I’m 7 weeks post-operation and I feel almost entirely normal. I have to be a bit cautious about abdominal exercises for quite a while, as there is a risk of hernia. I’ve returned to working out, but slowly. I will be out kayaking next weekend. My energy is quite normal and I’ve been back to work for a few weeks. I had amazing support from family and friends at home and it has definitely been a ‘peak’ experience and life-changing in subtle ways.
Reena had a very rough time to start with, which was so hard to see. Very thankfully, things improved steadily and her body has been adapting well to the new little bean 🙂 She is resuming her regular activities slowly and is the amazing person she’s always been, teaching yoga and doing Thai massage. It is just a concept that she has what used to be my kidney; It has little reality and I don’t feel like I’m missing anything.
I have zero regrets about being a kidney donor. I am quite happy it is over, however, as it has occupied my mind a lot over the past year and a half. Onwards and upwards for us both!
If you haven’t yet, consider signing up as an organ donor when you renew your license. The need is immense. People die every day waiting for a transplant! Don’t take your organs with you!