My path to becoming a living kidney donor

I’m going to be a little lazy and just copy/paste the email I sent to a handful of friends and relatives a couple of weeks prior to my surgery below:

After a very long  period of contemplation and evaluation, I have decided to become a kidney donor. This donation will be what is referred to as altruistic, or anonymous and directed, in that I know who will be getting my kidney, but they don’t know who I am. Last summer I learned of a young man in Milwaukee who was looking for a living kidney donor through the Blood Bank of Wisconsin’s social media page. It kind of stuck with me because he was a former runner (and soccer player), 0 positive (my blood type, but pretty common), at the beginning of his life, recently engaged and faced chronic kidney failure. He has been doing daily home dialysis for 4+ years, which looks like a pretty terrible way to have to live your life. I immediately thought, is this something I could do? I have been a lifelong blood and sometime platelet donor, but obviously this is a whole other level. I would check on his status (eg. lurk on his gofundme and facebook pages) from time to time to see how he was doing, and as the months passed I would feel more anxious before the page loaded that something may have happened to him. In January of this year I finally told myself to just call and get the blood work done, because we may not even be a match and I could put these thoughts to bed. I got the blood work done and a few days later learned we are a great match. From there it has been a long screening process including:

• Fasting blood sugar to rule out diabetes risk
• Lots more blood work to rule out infectious diseases, determine antibodies, etc.
• 24-hr Kidney function test (more blood work and saving your pee in plastic containers a la Howard Hughes)
• Lung x-ray
• ultrasounds
• Meetings with social workers
• Psych evaluation
• Reviewing life and health insurance implications w/ a financial counselor
• Reviewing everything w/ my Nephrologist
• EKG and Echocardiogram
• Meeting with a nutritionist (she asked me to stay the rest of the day and teach her other patients)
• Meeting w/ a pharmacist to go over post-op drugs and medications going forward w/ one kidney
• CT Scan of my abdomen
• Meeting w/ the recipient’s surgeon and my surgeon (separately – we both have completely separate medical teams)

I am working through Aurora St. Luke’s Hospital in Milwaukee, they are part of the Organ Transplant Procurement Network. The surgery will be done by Dr. Mark Waples, the Chief of Surgery there. He specializes in kidney cancer surgery and will be using the fully-robotic Da Vinci system. He does about 200 nephrectomies a year, mostly for cancer,  95% of them with the Da Vinci robot. This means very small incisions (3-5 @ 1 cm for scopes/instruments and 1 @ 4-5 cm to remove the kidney) and should mean less pain and a faster recovery. I feel very lucky to have the robotic option, you can watch an animation of the surgery here: https://www.youtube.com/watch?v=0nRzYKss33Q

I will be under general anesthesia and the operation should take around 2-3 hours. I should expect to feel very tired for the first couple of weeks and have a 10 lb weight restriction for 6 weeks. I can resume a normal diet and exercise as soon as I feel able.

Dr. Waples likes to avoid opioids as much as possible and he has a standard protocol that he uses during/after the surgery so that you can avoid them. Many people are sent home the next day. It won’t be a walk in the park, but the doctors have likened it to recovery after childbirth (they said a caesarean is probably harder, larger incision, more trauma). From there, my remaining kidney will slowly gain capacity as it takes up the extra work. My nephrologist expects my kidney function to return to normal after a couple of months and it should be good for 70 years (although I told him I don’t really want to live to be 112). For the remainder of my life I will need to avoid ibuprofen/NSAIDs/aspirin (not a problem, I avoid them already) and I can’t do some fad PX90 high protein diet (eg. protein supplements, anything I get from natural foods is fine). I will need to monitor my blood pressure every few weeks for the first couple of months and report back to the transplant center for blood work at 6 months, 1 year and 2 years. I will also have to avoid high contact sports and give up rugby, sky diving and bull riding 😉

More seriously though, I have been blessed with incredibly good health and my doctors expect this to continue. I have low blood pressure, good cholesterol and a low risk for diabetes, three big counter-indications for donation. I have also been blessed to be in a financial situation where missing work/finding childcare isn’t a factor, we can swing some extra meals out and help for a few weeks and even higher health insurance premiums if necessary (but please write your senators and ask them to keep the existing conditions protections in the ACA). As my sister-in-law Ellen likes to say, I’m a “why not?” kind of person and when I think of all of the obstacles people face to becoming a living kidney donor, there really aren’t too many in my “why not” column. I have been following other donors’ blogs and I should be able to return to running and triathlon eventually, with some patience. It may be that I now look to simply complete events than try to get faster (but let’s face it, I’m looking at 43 this year and things were going to be slowing down regardless).  We’re done having kids (had to reassure the nephrologist, umm, are you looking at the paperwork? 42 years old, kids ages 15, 12 and 8? Yes, we’re done!) yet still young enough that my kidney should be in pretty good working order for the recipient.

I’m sure you know this already, but kidneys don’t fail one at a time, they fail together. So removing one doesn’t increase the risk that you are stuck w/ the one that was going to “go bad”. We also have no history of kidney disease on either side as far as the girls are concerned (and I’m not blood compatible with my husband) so the odds that one of our kids would need my kidney, and at that time I would be a good donor, are fairly unlikely.

The list of people needing kidneys is huge – over 100,000 people – and live kidneys, especially for someone who is young, are far superior. Kidneys from living donors can last up to 30-40 years. Kidneys from deceased donors last up to 10 years. Last year there were 5,600 live donations and 11,500 from deceased donors.  Of the 5,600 live donations about 550 were anonymous-paired (donor chains) and 180 of them were anonymous/unpaired donors. So this puts me in a freakier category than I had anticipated, but I really feel like it’s something I can do, and I hope you’ll support me.  In the end, if anyone I loved needed someone to step forward and donate, I’d hope that they would. If this is the kind of world I hope to live in, then I have to be willing to step forward.

The recipient has expressed wanting to meet me, and we have decided through our donor and recipient advocates to meet a few weeks post-surgery. As many of you know, I share quite a bit online as far as running, funny things my kids say, travel, etc. But I do keep a layer more hidden, probably like most people. I’m not sure at this point how much of this I will end up sharing after the surgery. From what I’ve read there are some very mixed reactions to unrelated donations. I don’t quite understand it, but if it’s out there I’m not sure when I will want to deal with it.

I also want to apologize to those I’ve spoken with recently and haven’t brought this up. I’ve been hesitant to tell many people prior to the surgery (July 13^th) because I didn’t want the fact that I had told a bunch of people to weigh on my decision on whether to proceed or not.