A kidney donation story
I donated a kidney to help a family member via paired exchange in May 2021 when I was 32 years old. A year and a half later I am finally getting some mojo to write this up 🤓. I’m pregnant now so I figured it would be nice to write about my experience before I go through another life changing health event and forget everything even more 🙈. My hope is that this story will be helpful for anyone considering becoming a living donor and perhaps interesting to some additional folks too!
This post is a bit long so I included headings so folks can find sections that interest them. I also marked advice for future donors sections with 🔍 emojis. Brief content warning, this post does include a graphic photo of a kidney!
Getting started
My kidney donation story began sometime in late spring of 2020. I got home from a run and my partner was on the phone with his mom who mentioned she might be needing a kidney. I popped my sweaty head into the screen for a moment and said “Hey maybe I can donate!” then carried on with my day. I think I filled out an application online that night. At this point, my thought process about donating was something like “Well other people do this so I probably can too!”
The initial evaluation process
While I live in California, Hopkins hospital in Baltimore was the center where my mother-in-law, Carole, was receiving care. Quickly after I filled out the online form, the team at Hopkins reached out to me to continue being evaluated in the process. I did my first initial labs in July 2020. These blood and urine tests queried into my overall health, kidney function, and blood type and they were easy for me to do locally near my home. It felt like they screened me for everything under the sun! These pre-screening labs had two main outcomes — one, I was thus far a good candidate for donation and two, that I wasn’t a great direct match for my mother-in-law due to different blood types and some mismatched antibodies. This led us to consider paired exchange.
Paired exchange
Before any of this I had actually heard of paired exchange — from Dr Miranda Bailey on the TV show Grey’s Anatomy 😂. In case you’re wondering, it’s the There’s No ‘I’ in Team episode — Season 5 episode 5 — where Dr Bailey orchestrates a kidney domino surgery. The episode clearly shows how domino or paired exchange surgeries work — you donate to someone else’s loved one who donates to someone else’s and through the exchange your loved one gets a kidney too!
It’s worth noting that a lot of the decision-making around paired exchange was with my mother-in-law, Carole, and her team. There were decisions around waiting to see if other family members would be better matches, if a joint pancreas-kidney transplant would be better (my mother-in-law is type 1 diabetic), and a lot more I’m sure — it’s a big decision! Ultimately for me as a donor, paired exchange vs direct donation didn’t make much of a difference.
Completing the evaluation
After the bloodwork, the next big step was an onsite day at John Hopkins during which you complete more testing and meet with the surgeon, nephrologist (kidney doctor), and a therapist. Due to cross-state-line telemedicine laws, I could not complete this step virtually and had to travel to Baltimore. This was non-trivial as it was now October 2020 during the COVID pandemic and we were still without vaccination. My partner is type 1 diabetic like his mom and he was understandably quite nervous about my trip. I ended up renting an airbnb so I could quarantine after the trip before going home. I was lucky enough to have a friend give me an N95 mask and then I hopped on the plane and hoped for the best.
In retrospect, I think visiting Hopkins in person was a very important step. It made everything seem much more real and helped me to really reckon with the impact of the decision to donate and imagine more what donating would be like. The nephrologist I spoke with in particular was very serious. He cautioned me that under no circumstances should I get pregnant in the year after donating or else I could lose my remaining kidney. I am also an avid runner, and he suggested that in the future instead of running twenty miles at a time I just run ten one day and ten the next day (For the runners out there you’ll know that I did not take kindly to that suggestion 😂!)
Looking back, I think during my Hopkins visit I was focusing on trying to seem like a good donation candidate and I think I could have prepared more with questions and thought about how I’d like to advocate for myself.
🔍 🔍 🔍 For future donors, some ideas for questions you could ask at this stage:
- Will you take my right or left kidney? How will you decide and what are the trade-offs of each?
- How many incisions will you make during the surgery and where? How do you decide this and is there anything you customize per the patient?
- My _______ hobby is really important to me as well as my hope to _______ in the future. How do you think donating will impact these? (I did ask this one for running and having kids and I was very glad I did!)
- How will your team support me after donation? What providers should I have relationships with back home in advance and how will you support continuity of care when I transition to them?
The questions you ask may be different, but my point is think of some questions and ask them!
Finalizing the decision to donate
After the trip was when I felt like I really settled into my decision to donate and move forward. Running and pregnancy were the big flags in my mind after leaving Baltimore.
In terms of running, I was able to speak with an acquaintance who had donated who is also a runner, and just having that connection was a huge support to me. I also found the group kidney donor athletes, which amplified the voices of runners who did complete ultra-marathons after donation. This helped me to see that even though we don’t yet have great medical research on endurance sports with one kidney, it is still done and quite possible! I also read a research paper completed with Western States 100 athletes. The research showed that while completing a 100 mile run results in temporary kidney damage, athletes do recover and crucially even if they participate year after year the kidney impacts do not worsen. While this research was completed on athletes with two kidneys, I found it heartening nonetheless!
In terms of pregnancy, my partner and I had been thinking about having kids but we just decided waiting a year would be fine and that was that! It is worth noting that the majority of kidney donors in the US are women of child-bearing age and there is still very little research done about the impacts of kidney donation on pregnancy. I certainly hope the medical community will complete more research in this area (and with kidney donor athletes too!).
Beyond looking into my flag areas, I think I just had a feeling that donating would be the right thing to do and that I could do it! I remember one day looking at a picture of my mother-in-law with her grandkids at the beach and thinking to myself that I want to donate so she can hang out with our future kids too. That sealed the deal for me!
The lead up to donation
After my trip to Baltimore I completed further testing, including a test at a hospital near me called NMGFR where they injected me with some sort of dye then studied how long my kidneys took to clear it. An interesting tidbit from this testing was that we decided I would donate my right kidney. By default, kidney donors usually donate their left kidney because it has a longer vein on it which makes implantation in the recipient easier (also I bet surgeons are just used to this). For me, my left kidney was doing 60% of the work and my right 40% so due to that unevenness I would donate my right and keep the stronger one. There are some studies as well on how left vs right decision impacts donors — if you’re considering donating you may be interested in researching this further or reading up on it. Shortly after completing the final testing at the tail end of 2020 I was officially cleared as a donor. This gave my mother-in-law an option to think about with her team, and in mid-January 2021 we decided to list on the paired exchange.
After you list on the exchange, you wait. At any time you could be notified that the team found an exchange for you to join and then the surgery would be within a few weeks. I remember finding some PDFs online with the average wait times for different types of donor recipient pairs and reading them over for clues. As of today, the average wait time for someone waiting for a deceased donor kidney is 3–5 years so needless to say the wait time for paired exchange with a living donor is much shorter.
Ultimately Hopkins notified me via email May 3, 2021 that myself and my mother-in-law had matched on paired exchange with a target date for surgeries of May 27th. Looking back at the email now, I wrote back succinctly 13 minutes after receipt: “What good news. May 27 works for me.”
A note about work leave
In the state of California kidney donors are guaranteed by law 30 business days paid leave for the surgery. This was a cool, seemingly niche law that benefited me! My employer put together the pay via a combination of me filing for state disability, me filing with their private insurance, and then my employer topping off the rest. It was a lot of paperwork and ended up being pretty stressful for me. I didn’t end up with full pay in the end due to a paperwork error by the private insurer that I got a bit tired of pursuing. I also ended up giving notice at my job and changing companies after donation so I was also grateful to get the pay through the leave seeing as I was leaving the company afterwards! It all made for a bit of added stress in the transition period though for sure.
🔍 🔍 🔍 My advice for future donors is to take as much time off of work as you can to recover. While everyone is different, I ended up with a month and a half away from work, and it felt like barely enough for me even though I work a desk job.
Donation!
My partner Ryan and I decided to drive across the country for the surgery, *with* our two dogs! Maybe that was a crazy idea but that’s what we did! We had the added pressure of not wanting to get sick — if anyone in our donation chain tested positive for COVID then everything would be called off, and I certainly did not want to be the person to cause that to happen! All said and done we arrived in Maryland safe and sound.
Ryan was able to see his family for the first time since the pandemic began. It was lovely and also hectic figuring out our protocol for interacting seeing as two of us would be going in for surgery shortly amidst a pandemic! My sister-in-law had just had a brand new baby a few days prior and it was so hectic that meeting the baby ended up feeling like an afterthought which I felt very bad about. The only other thing worth noting is the day prior to surgery I was only supposed to have clear liquids. I had a lot of jello and then before we knew it our 4am alarm was going off at our Baltimore airbnb — time to head to the hospital!
Ryan was able to come back with me into the pre-op area. I don’t remember much besides that my surgeon was a woman and the anesthesiologist was a woman too and I thought that was cool! They did a pregnancy test on me right before, just to be sure, which is a protocol I find kind of amusing or weird. They also asked if we wanted a picture of the kidney and I just kind of looked at Ryan who said yes. After getting gowned up and such I kissed Ryan goodbye and then they wheeled me down to the operating area. The operating room was huge and there were tons of staff in there! I just remember feeling like the anesthesiologist was really nice and comforting and I was glad she had those communication skills on a jittery morning.
In terms of the surgery itself I imagine Ryan would have more to say than me — it was quite the day for him with both his mom and his wife going under the knife and a lot of waiting around in addition to caring for our two dogs. At some point a good friend came and took the dogs to her house for a few days which was an absolute lifesaver. Ryan also was keeping family in California in the loop on how I was doing. With the paired exchange, my surgery was first and then the kidney that was formerly mine was then flown to Mississippi. My mother in law’s new kidney was flown in from New York and she had her surgery the same evening. Throughout the day and around the country more nodes of the chain were going through the same experience!
In surgery it took them a few hours to find the kidney, or at least that is what they said to Ryan on the phone. Eventually they sent him a sweet kidney picture and then the surgery was done. In the post-op area I was in and out. I remember when I woke up my hip was in a ton of pain — I’m guessing from whatever wonky still positions they had me in during the surgery. I felt like they just asked me where it hurt then knocked me out again 😂There was also some discussion of my urine output and the team wanting it to be more. From Ryan’s perspective it took absolutely forever to get out of post-op and for him to see me in my room — maybe 7 hours total. From my perspective I was mostly sleeping and it was fine! I remember when we got to my room they asked me if I could shift from the gurney to the bed and that was my first challenge. I remember feeling like shifting my body the 10 inches or so from gurney to bed was a nearly insurmountable task although I guess I did it in the end, with some pain. I don’t remember much from when I saw Ryan but I did ask him to take my picture! I’d like to think I had the grace to ask how my mother-in-law was doing but who knows.
The next day I sat up for the first time, ate for the first time, and went for a few short walks. I remember a nurse came and was like ‘Time to sit up’. Sitting up was incredibly painful and I don’t know how that nurse got me up! She was good at her job! I told her I wasn’t ready to walk yet and she said she’d come back later. Before the surgery I had been scared of having the urinary catheter; after the surgery I didn’t want it out because it would mean I’d have to get out of bed and walk in order to pee 😂Ultimately though we took that step, and I ended up being able to walk all the way down the hall to my mother-in-law’s room — she was doing well recovering from her surgery on the same floor.
Recovery, the first two weeks
I remember before discharge my partner Ryan saying, “Are you sure? We could stay another night.” I imagine he was feeling quite daunted about the prospect of having me “home” aka in our temporary Baltimore airbnb. The drive home was very painful with potholes galore. Our apartment was on a second story and Ryan had planned a way to park by the building elevator. Nonetheless, finally getting to my new spot in the apartment — a twin bed with plenty of pillows — was a huge relief.
The first days were really difficult. At one point I was trying to sit up out of the bed and just couldn’t figure out how to do it without excruciating pain. Ryan was trying to help saying “What can I do” and I was just crying in pain. The hospital nurses had coached me to roll on my side then press myself up, which still felt really painful for me. Eventually I settled on getting my hands behind me pushing myself up that way, with as little core involvement as possible which felt much better for me. My first shower was similarly dramatic — Ryan helped me get dressed and undressed and in some sort of shock response my whole body started shaking. I was a pitiful sight I’m sure! In terms of the pain, I just remember desperately wanting to know when it would get better a little — the point where recovery would feel more bearable. Turns out the answer for me was about 7 days post-op.
A few additional items about my recovery that may be worth noting — they sent me home with both Tylenol and opioids. The first days I had so much nausea that I tried cutting out the opioids to see if it would help. It didn’t but I still stayed off the opioids. In retrospect once I realized they weren’t causing my nausea perhaps it would have worked better to take them for a few more days. Additionally, since my surgery was laparoscopic, they fill up your abdomen with gas. Reading up on it, some of my pain could have come from that gas and it’s possible walking a bit more would have helped me recover more easily in the first days.
At one week post-op we moved to an airbnb in a more suburban area which definitely marked a new recovery phase for me. I started being able to shower by myself, felt well enough to do things like watch tv or get myself a snack, and started going for more little walks to build my stamina. This airbnb also had one of those lazy-boy type chairs and this was heaven sent. You can go from a prone position to upright with no personal effort and this was great for me! On day 7 post-op, I walked 3/10ths of a mile. On day 8 post-op I walked 3/4s of a mile — this took me 40 minutes and I had to sit down multiple times. After two weeks, I walked 1.7 miles which was a big milestone for me — after that I was able to start building up my walking mileage as part of my recovery, and walking became part of my recovery routine.
Around two weeks post-op I also had my follow up appointment with the doctors at Hopkins. This was in many ways the last touch point with the team at Hopkins and if that sounds fast I would say that yes it felt quick for me too! Up until this point, I had surgical glue covering my incisions and I also still hadn’t looked at them myself because I was scared of them. I went into my post-op appointment alone due to pandemic protocols. During the appt the doctor removed the surgical glue and found that one of the incisions had split open, meaning there was just kind of a gaping hole in my abdomen. The protocol for this would be that we should clean it and pack with gauze once a day until it healed. In retrospect, once we started this discussion I definitely should have video called Ryan in, because when I got back out the parking lot and told him about his new nursing duties he was definitely shook! In the appointment itself I also started having vasovagal syncope after they were telling me about the gaping hole (and I don’t have a history of getting squeamish for things like that!) so then I also had to lie down and was barely listening throughout the rest of the appointment 😂
🔍 🔍 🔍 For future donors, my advice about the first two weeks of recovery is the following:
- Everyone is different — after having read many donor stories, know that your experience will be your own and everyone recovers at their own pace.
- Do what’s comfortable — when I first got home from the hospital initially I had this idea that every morning I’d get up and try to sit in a chair for a while to make a routine. This was just painful and staying in bed was just fine!
- Try for really tiny walks multiple times a day — getting up and moving could help moving the gas after a laparoscopic surgery. I also walked with a pillow on my abdomen (did basically everything with the pillow actually) and that was great.
- Keep some plain crackers and electrolytes on hand and try to eat a tiny bit frequently if you have nausea
- Take your spouse or family member to your follow up appointments!
- If the initial recovery is excruciating, know it will get better. For me on the 7th day things really started looking up.
Running and recovery back to sport
Pre-donation, I ran 30 miles per week regularly and would flex up to 60 mile weeks when training for a big race. I ran ultra marathons of 50k and 50 mile distances and enjoyed being super active. After donation, I started on a few little walks in the initial weeks. Week 4 and 5 I increased my walking, working up to walking 4 miles at a time and walking every day.
I started back running 6 weeks post op with a 3 mile run. It felt exhausting and like my insides were shaking around a bit! From week 6 to 14 I built back to my goal of running 30 miles a week again. I did a lot of 2 mile runs at first and built to longer distances slowly. Throughout the build up I saw a physical therapist once a week which I would *highly recommend* to anyone building back fitness after major surgery. I found it helpful to build back injury free. It was also great mentally to have the weekly appointment to remind me that even as the rest of the world moved on that I was still going through a big recovery. I donated May 27 and by the week of Sept 6 I hit my goal of a 30 mile running week! From there I maintained and built up mileage more. In November I ran a celebratory 6 month post-op half marathon with my sister. She was 6 months postpartum so it was a really wonderful milestone to mark together and really fun!
After the half marathon fun run with my sister, I trained to race a half in earnest in February, which marked 9 months post-op. I had some great workouts and while I didn’t PR in the race I put in a good effort and ran maybe 7 minutes or so off my best time. I didn’t have a chance yet to try my hand at longer efforts as I got pregnant at pretty much exactly one year post-donation — that’s something I’m really looking forward to trying postpartum. Ultimately something I was really proud of was seeing my Strava fitness graph — you can see a huge dip after donating and how I build back stronger.
🔍 🔍 🔍 My advice for kidney donors getting back to running:
- I’ve already said this elsewhere — but everyone is different! In the kidney donor athletes group I definitely saw folks building back way more quickly than me. I am really proud of how I listened to my body building back up and did so injury free. For reference, I made it back to my pre-donation mileage at week 15 post-op but again everyone will be different!
- If you can, do physical therapy. I was really hesitant about how to ease back into strength training, especially core work. Having the guidance was really helpful, and also really supported my build back to running strong.
- Aiming for a for-fun race event 6 months post op was a fun goal! Your timeline may be longer or shorter but I think doing something fun like that to celebrate your journey is a great idea!
- It will take some time to figure out your hydration needs post-donation. It will be different. I still feel like I’m figuring this out. I did treat myself to a new running hydration pack as a way to make it fun!
For any donors who want to connect and chat about the return to running, please don’t hesitate to reach out 👋! This is me on Strava.
Longer term recovery and some health data
Once I was back home in California, I saw my primary care provider and also found a local nephrologist. After donation there aren’t many additional touch points with your donation center so I definitely recommend donors establish this kind of care. My PCP was incredibly kind, helping me with wound care as the incision that opened worked on healing and I was glad to have a nephrologist to keep an eye on things.
One of the measurements doctors use to look at kidney function is your creatinine levels. The kidneys are responsible for filtering creatinine out of the blood so creatinine levels are a bit of a proxy to understand kidney function, albeit an imperfect one. I enjoyed following my creatinine levels pre and post donation, which you can see below.
The idea is that after you donate the first 6 months or so are key recovery time and that your remaining kidney will get stronger and take on more work. I think that the degree it does that will differ from person to person. I’ve never had a doctor say to me that I regained “X% kidney function” or something like that, but I have seen my creatinine readings improve. I recently had my best post-donation creatinine reading yet — I’m quite curious if it’s because I’m pregnant and haven’t been running as much! I suppose I’ll find out if and when I do additional blood work in the future.
🔍 🔍 🔍 Overall for potential donors wondering what their recovery will be like I’d say the following:
1. Donating a kidney is a big deal and your body will never be the same. For me I definitely notice feeling much more thirsty and feel like I’m still on a journey to discover what my running will be like in this new stage of life!
2. If you’re an athlete used to pushing your body, your recovery or return to fitness may feel longer than someone who may define recovery as getting back to the basics of life pain-free.
3. Identify a primary care doctor and a nephrologist to be on your team back home. Support groups like kidney donor athletes or similar are also great resources!
Something I’ve reflected on is that as a potential donor you read a lot of research and studies saying ‘donors go on to live long, healthy, and normal lives’. This is absolutely true and what data we have so far bears this out. That said, having now taken some of the surveys that inform this research, they mostly ask you questions about if you’ve been hospitalized post-donation, or had very serious health problems. I think my reminder to future donors would be that while you may have great health outcomes post-donation there may still be a new normal to find. Whether you’re a little more thirsty each day or simply have to get used to reporting more involved medical history on forms, things will be a little different! My bet is that you’ll also find expanded community, renewed appreciation for the medical system, and many more silver linings.
Reflections on the overall experience
In the months following my donation, the New York Times published a piece, Bad Art Friend. Discussion of the dispute covered in the piece went viral with folks around the internet weighing in. Bad Art Friend is about how one woman called Dawn (a white woman who is perhaps a bit self-involved) donates her kidney, and her friend, Sonya, writes a piece inspired by it with commentary on white saviorism (as well as perhaps some plagiarism of things Dawn wrote about her experience in a closed online group).
The Bad Art Friend discussion reminded me of some of my own feelings about the experience. For me there was a feeling that I shouldn’t talk about it much because donation is supposed to be altruistic and as a donor it’s not really about you — it’s about the recipient. At the same time, for donors, the donation is a major health and life event. Kidney donors are very healthy people and so I imagine for many donors it could be their first hospital stay, first time experiencing major surgery, etc. For me going through the event of donation I did turn to my inner circle for support. I learned a lot about opening myself up to accept love and care, and looked to medical professionals or communities of donors when I had specific questions or needs. In broader circles and in public I’ve tried to focus the conversation beyond myself and towards the recipient experience, the need for more donors, and the need for more equitable health research in the US.
Some will say that donating an organ is an honorable thing to do and of course it is. That said, being able to donate is also a reflection of huge privilege. It means you’re healthy, can afford to take time off of work, and have the means to travel and support your family through recovery. I don’t think it is a coincidence that the majority of living donors in the US are white — a group very privileged in our society. In my case, the theme of privilege was prevalent from the very beginning. My partner Ryan would have raised his hand to donate in a heartbeat, but because he’s also type 1 diabetic he was ineligible from the start. Many other friends and family members raised their hand to donate as well. The fact that ultimately I was the one who donated was a reflection of my privilege, not a higher moral standing.
Overall reflecting back I think I’d say donating a kidney was simply something I was able to do, so I did! A year and a half later I do not have regrets and would make the same decision if I could go back in time. Donating a kidney is a great way to practice just giving something away and then letting it go — really, truly and fully. As a super healthy person, the experience helped me to be less afraid of doctors — I’m definitely more likely to go for check-ups and such now.
Thank you for reading 👋
Whew! That’s it! For anyone considering donation or hoping to support a loved-one going through donation, I hope this (overly detailed 😂) post is helpful. I’m always excited to speak with potential future donors to share my experience, especially runners hoping to get back into it afterwards! In the years to come I’m hoping to connect more with communities of donors, so please don’t hesitate to reach out and say hello (you can find me under my name on Twitter, Instagram, and Strava). Lastly, thank you to everyone who has supported me on this journey and sending good vibes to organ donors and recipients everywhere! Beat and pump on!
PS. A few calls to action for anyone wondering what they can do to support folks waiting for life saving medical care:
- If you’re not already, sign up on Be The Match as a bone marrow donor. This is easy to do (I’ve been on the registry since college), and you never know — you could save someone’s life. Another family member of mine recently received a life saving bone marrow transplant which reminded me how important Be The Match is.
- Donate Blood or Platelets! The Red Cross even has an app for this nowadays. If you are a larger person or have certain blood types there are even more opportunities to make a difference.
- If and when you see the chance, speak up for the need for more medical research around organ donation. Personally I’d love to see more research around women who donate and athletes who donate, and there are so many areas beyond that to advance health equity!
