“Can you die?” … and Other Questions About Kidney Donation
After we shared our “best and worst” at dinner last week, I started a conversation with my kids (as I have done many times before now) about my upcoming surgery to donate my kidney. I was reminding them both that they can always ask me questions, whatever they want to know or are curious about, at any time. While my ten-year old son had some pretty interesting and curious questions about the kidney, the body, and healing, my nine-year old daughter had only one question for me that night.
“I only have one question” she said. “Can you die?”
Her question seemed to momentarily freeze time. It cut right to the core of it all. It told me everything I needed to know in that moment about where my daughters mind had gone when we had been talking about my upcoming surgery.
In a matter of milliseconds I looked into her eyes, flashed my gaze to my boyfriend Paul across the table, processed her question and the real truth of it all, and then regained eye contact with her and said, “No honey. Of course not.” To which she replied, “OK.” and the conversation moved on. Just like that I watched the anxiety and discomfort of it all evaporate from her little body.
We of course all know that with ANY surgery, there is a risk of death. There are no guarantees. With life comes death. It is inevitable. We get closer and closer each day that passes, each day that we are gifted. But in this instance, to even think about going into some long drawn out explanation of risks of surgery with my baby girl was incomprehensible. Trying to explain to her that this was a possibility, albeit a very small possibility, would have ultimately led to more harm than good in that moment and so I did what we sometimes do as parents and care givers. I protected her little world, eased her mind, and told her what she needed to hear to feel safe.
I’d be lying if I tried to say that her question didn’t rock my world for a bit. I’d be lying if I said it didn’t bring up all kinds of scenarios and questions in my own mind. Kids have a way of cutting through all the bullshit though and driving right to the matter at hand. They really do ask the best questions.
While that particular question was a bit dark, I’ve been receiving a lot of other questions about my upcoming surgery from family members, friends, and co-workers, some of which I hadn’t even thought of myself. This made me realize that I’m sure some of you are wondering some things too and so, in an effort to share what I am learning and to help educate others about kidney donation, I thought I’d share this list of eight things I found interesting. But first, the obligatory disclaimer that I am certainly not a doctor or professional when it comes to kidney donation, none of this is advice, and that what I am share is based on my own experience thus far.
Here we go…
1. Does your (the donor’s) remaining kidney do the work of two kidneys post donation or what happens?
Yes, the remaining kidney does the work of two kidneys post donation. In fact, I found it fascinating to learn that my one remaining kidney will grow in size. I have heard that it doubles from some, but my surgeon shared that my remaining kidney will grow “up to 60-70%” in size. When I told my kids this, my son wanted to know if I would have a huge growth or bump on my side from this extra large kidney. The answer is thankfully no.
2. Does the recipient of your (the donor’s) kidney have a kidney removed to make room for the new one?
No. Melissa, who will be receiving my kidney, does not have one of her kidneys removed to make room for the new one. In fact, the recipient will ultimately have three kidneys in their body post transplant instead of just two. Wild right?
3. Which kidney are you donating? How does the medical team decide which one to take?
I will be donating my left kidney. I didn’t know this until I met with my surgeon just last week, but funny enough, I think somehow I did know it.
Part of getting my body/mind/spirit ready for this donation has involved working with an energy healer. Energy healing has been part of my own personal health care for three years now so this is not new to me. During one of our sessions, my practitioner asked if I knew which kidney would be donated at which point in time I did not, but I shared with her that when I thought about my right kidney, it was easy for me to see it, visualize it, see it happy and dancing and with a lot of color and know it was there. Oddly enough, when I thought about my left kidney, it just felt disconnected, hard to see, a bit like it was hiding or already not there and so I told her if I had to guess, it would be my left. What do you know, it is!
My surgeon shared that often it is the left kidney that is donated because it has a longer renal vein that proves helpful when reattaching the kidney in the recipients’ body.
4. What will the experience be like for you (the donor) post donation?
While there are some generalizations I can make after speaking to about 18 kidney donors, my medical team, and doing my own research, I have come to my own conclusion that each donors experience post donation is unique to them.
Some of the general themes for donors include brain fog early on and lingering fatigue that can require naps during the day or additional rest. In the short term, pain is to be expected at the incision sites and gas pain is quite common in the body due to carbon dioxide gas that is pumped into the body to help the surgeon see during the surgery. Lastly, there is an increased risk of a hernia hence the “no lifting anything over 10 lbs for 6 weeks” post surgery. Outside of those things though, the experiences that were shared with me by the other donors varied. One donor shared that she experienced depression, another shared that her recipient had complications, and still another shared that she PR’d her marathon just three months post-op! Therefore, I am doing my best to not have any bold expectations of what my own experience will be like post donation. I’m here for this journey and ready to experience whatever the Universe brings my way.
5. How does your family feel about your decision to donate?
My family knows me well enough at this point to know that once I decide something, I am doing it barring any obvious red flags or red flags from the Universe and so while they may not all want me to donate because it requires a major surgery, they do all support me and my decision.
Regarding my two kiddos, while they have had a lot of questions and we have had a lot of conversations about this process, they ultimately think it’s very cool and have wondered why more people don’t do this. In their own words, “if you don’t need two kidneys, why don’t more people give one to someone that needs one?” Great question, right?
Fun fact…my boyfriend and I spent time with the social worker at Mass General that is part of the transplant team. When she asked him how he was feeling about my decision, he basically told her that if she told him that day that I was not a match or that I could not do this for some reason, she would make his whole day sooooo that tells you how he feels about my decision. In all seriousness though, I certainly understand the fear that surrounds this for him and those close to me. However, he is fully supporting me on this journey and THAT is a beautiful thing!
6. How many incisions will be made for your surgery?
There are two different types of surgeries for living kidney donors – open nephrectomy and laparoscopic nephrectomy. The more common method now is laparoscopic and that is the method that my surgeon will be using. However, I have learned the location of incisions for this method can vary depending on the surgeon. In my case, I’ve been told that I will have three smaller incisions (about 0.5-1 cm long) along my left side and then one larger incision (about 6-7 cm) similar to a C-Section incision.
If I’m being honest, when I first thought about these scars on my body post surgery, the vain piece of me that still enjoys wearing a bikini was sort of like oh shit/what the fuck/am I doing this? I’ve come around though and let those stupid thoughts go and instead, I now think of these soon to be scars as really fucking cool and beautiful and likely the segue to getting to share my experience with others.
7. Will you and the recipient be in surgery at the same time in the same place or no?
Fortunately, Melissa and I will both be having our surgeries at Mass General Hospital in Boston. From what I understand, I will go into surgery about an hour or so before Melissa does so that my team can do what they need to do first to remove my kidney. My surgeon will communicate with her surgeon during the surgery and when the time is right, Melissa will be brought into an OR in the room next door to me, prepped for surgery, and then my kidney will be brought over to that room as well to be transplanted into her.
I feel very lucky that my match is local as some donors travel to a new city for their surgeries and recovery and in some cases, if the donor and recipient are in different cities or locations and travel to be together is not feasible, the kidney is transported from one location to another.
8. Does your life change post donation? Can you still exercise and be active?
Assuming all goes well with my surgery, all signs point to a normal, healthy, and active lifestyle moving forward. I do have restrictions in place for six weeks post-op, but I should be able to start walking shortly after surgery. My goal is to be up and walking as soon as possible because the movement will only help my body to bounce back and recover overall. If you know me, you know I can’t sit still so I have visions of walking laps at MGH with my Garmin on and I hope those visions become my reality!
As I had shared in my previous blog post, there is a non-profit called Kidney Donor Athletes where many members, including my friend Chris Sullivan, are climbing mountains, running marathons and ultras, and doing big, active, physical things. My goal is to become a Kidney Donor Athlete myself and have many more epic experiences in my lifetime, but first, healing, recovering, and getting back to a solid foundation of physical health.
I have learned so much through this process already and I know I will only continue to learn and share and grow as time goes on. As I connected with other donors, I learned of their experiences (not all with positive outcomes), formed new relationships, and formed a new community of amazing humans that are now part of my life. In talking with those around me, I have realized that some individuals close to me have been impacted by kidney donations in their own lives, others have friends waiting for a kidney transplant, and even that one friend of mine was born with only one kidney and that two others have had to have one removed. I can only imagine the ripple effect that my own experience, that my own story, (one of many), might have on people I have never even met. Isn’t that an amazing thing to think about the potential ripple effect?
As I sign off and disconnect for a short while, I leave you with this…
Be courageous enough to share YOUR story with the world, whatever your story might be. In doing so, you will find that you are gifted with a wealth of knowledge you might otherwise have never known, beautiful connections you might have otherwise never made, and most importantly, the opportunity to spread a positive impact that ripples out into this Universe.