Category: Kidney donation

I (Hilary Caws-Elwitt, Northampton MA) donated a kidney to a stranger on December 9th, 2020, one year and one day after I filled out the first interest form at the National Kidney Registry and many years after I started thinking about it as something I might do. I was inspired by the many donors who have gone before, who almost universally say it’s one of the best things they’ve ever done. At not quite 3 weeks post-surgery I am feeling almost 100% and have started running again, and I agree with all those other donors that I would do it again in a heartbeat if I could. But instead I can be an advocate. Kidney Donor Athletes became one of my go-to sites during the long journey to donation and made it clear that donors can do whatever they want physically including marathons and ultras; I’m planning another marathon, ideally in fall 2021, which will be my fourth overall but my first with one kidney. I’m rebooting this blog to document that next marathon, but more specifically to encourage recreational marathoners to consider kidney donation. I think it’s a natural fit for many reasons.

Marathoners are well-suited to donation:

• We tend to be healthy, so are more likely to be approved as donors
• Just like running a marathon, donating a kidney is something that most regular people consider a little crazy or even “impossible” and we’ve dealt with those reactions
• We usually have learned to really listen to our bodies
• We have the experience of a long-drawn-out planning and preparing process
• We’ve built physical and mental stamina
• We can deal with physical discomfort

Motivations to run and to donate can be similar:

• If one of the reasons you chose to run a marathon was to challenge yourself, to see what you could handle, to tackle a huge project and a huge adventure… you might find that kidney donation scratches those same itches.
• If you love the camaraderie, community, and feeling of belonging to a tribe of runners, you’ll find something similar in the tight-knit and supportive donor community.
• If you wanted to savor the feeling of “I am a marathoner,” the identity that nothing can take away – becoming a kidney donor is like that in spades.

And best of all, it directly helps another human being in a way that very few people have the opportunity to do. The US kidney waitlist is over 90,000. There are not enough deceased donor kidneys to meet the need, and living kidneys have better outcomes anyway. Thousands of people die every year waiting for a kidney.

Every single one of [the kidney donors] was so proud of what they did. They all felt, Here is something grand that I did. Here is something unambiguously good, and I can be proud of this for the rest of my life, and whatever else I do and however else I fail as a person, this is something that no one can take away from me. And that’s a big thing in a person’s life. And there aren’t that many chances to do something like that. —Larissa McFarquar, interviewed by Charles Duhigg

I wrote up most of the kidney donation journey on a private forum, since I didn’t want to go public until I was successfully through the process. I’ve adapted and reposted, backdated to when the events actually happened – from just before talking to my doctor to the first follow-up after surgery , and I’ll continue with training for the marathon (hoping for Hartford). It’s super-detailed because that’s what I would have wanted to read as a prospective donor (and I tend to be wordy…) Feel free to contact me with any questions or leave a comment.

Even though I couldn’t turn over comfortably, I slept so so much better in my own bed with no noisy roommate! The gas pains subsided over the next couple of days and I started getting better by leaps and bounds – longer walks, able to walk up stairs, sleeping on my side, and finally real pants! By Sunday, four days after surgery, I was doing pretty great. Then my digestion started bothering me – lots of extra gas, low-grade stomach aches like feeling hungry – and it took about a week for it to settle down. Kefir helped for sure. I was back to my very part-time work a week after surgery, able to drive and do small errands.

Two week follow-up

To my surprise the surgeon had said not to do labs yet – they’ll do a blood draw at my 6-week follow-up and that will establish my new baseline. But they did take my blood pressure, which was back to my normal low-ish range (it had been high in the hospital). I saw the social worker, whom I like very much, and this was the very best part: she also works with my recipient and she said something like “You changed her life. You really changed a life.” They passed along my card and it sounds like the recipient will be OK with getting in touch but after things have settled down a little more – the social worker said that sometimes people take a while to believe that the transplant has really taken, and the coordinator said something about her wanting to look like she’s in better shape and not hunched over. Whenever she’s comfortable, even if it’s never, is fine with me. My coordinator asked whether I know David Copperfield – yes, I love Dickens! – she knows I am willing and it always reminds her of “Barkis is willin’,” so that’s our in-joke now – Barkis is willing. The surgeon said I’d only had one dose of antibiotics and that probably wasn’t causing my digestive issues, but that the surgery itself messes with the intestines and they can take a while to settle back down and get used to the new normal. He cleared me to run, do yoga, go hiking and biking, take a bath – basically whatever I want!

Almost 100%

I’m doing really well now – not sleeping great yet but that’s getting better too. I’ve been running a mile or two and doing a little pilates to get my core back in shape. I’m drinking more water just naturally, which is great because that’s a habit I’m going to need to keep up. Interesting that many people say this adventure helped them take even better care of themselves and appreciate their own health even more – I am glad to feel that possibly taking hold.

I would do it again in a heartbeat! All told, I had maybe ~4 hours of quite severe pain, which I knew didn’t mean anything bad and would go away, and the rest was just some discomfort and inconvenience. Totally, totally worth it!!! And having the privilege and opportunity to do something good during this horrible year is extra-sweet.

Pre-surgery

Pre-surgery prep involved special soap, magnesium citrate (ugh), and 3 bottles of foul “strawberry” carb drink, 2 for the night before and 1 for the morning of. I actually slept fairly well but got up at 3:45 to have time for a second shower, my regular morning routine (I’m over 550 consecutive days on Insight Timer and don’t want to break my streak), and still get to the hospital at 5:45. I left time to dance to “Love Will Keep Us Together” (Captain and Tennille), partly for good luck, partly to psych myself up, partly to make Jonathan laugh, and partly to celebrate that THIS IS ACTUALLY HAPPENING! (Up until the day before I kept worrying they would shut down non-essential surgeries). Jonathan dropped me off at the hospital a little early but from there the time flew – got taken to pre-surgery area, IV started, met the anesthesiologist, a transplant fellow, and finally my surgeon showed up in regular clothes right when surgery was supposed to start (7:30am). I reminded him again that I wanted a photo of my kidney.

Surgery

Apparently they had to wait for an OR to clear; I was rolled in about 7:45, transferred to the operating table, and got a heated blanket. I thanked them for the blanket, since what I remember from 3 previous surgeries is waking up freezing, and they said they heat all the fluids etc. to avoid that…

Recovery

Sure enough, when I woke up subjectively seconds later (around 1pm; the surgery took about 3 1/2 hours, and I later heard the old adhesions only added about 10 minutes), I wasn’t cold. They also did a nerve block at the end of surgery so that I wouldn’t have any incision pain for the first 24 hours or so. I felt pretty remarkably good for most of the afternoon; when they wheeled me to my room from recovery, I was able to get up and transfer myself. The only thing bothering me initially was very dry mouth which didn’t go away no matter how much I drank, and made it hard to talk. I did call Jonathan but otherwise stuck to texts and emails.

First few hours – yay!

They didn’t want me walking by myself the first day so I had a yellow “fall risk” bracelet and a bed alarm, which felt really stupid but whatever… I was pretty locked down by the catheter, the IV, and the squeezy boots anyway. The IV was in my left hand but the initial port they had started in my right was still there, sealed off – I was surprised when the phlebotomist came for bloodwork that they couldn’t use it and I had to have a normal arm draw (twice during my stay). I had the bed by the window and for the first hour my roommate was away getting an echocardiogram, so initially I felt pretty good about the setup. I couldn’t really see out the window because the whole bed was forward in the room so I would have had to crane my head. I asked a nice assistant if he could move the bed so I could look out, and he put it at an angle.

I don’t think I mentioned this before, but this medical complex is just across the river from the location of a winter crow roost I’d been to on an Audubon field trip, and on one of my previous appointments I’d seen a staging area in the late morning (about 200-300 crows hanging around, much smaller than the thousands at the roost but still incredibly cool). I was hoping to see some of them, and sure enough around 3 or 3:30 they started streaming overhead. Before I knew about winter roosts, I had seen bunches of crows all flying in the same direction on a visit to my mother-in-law in Rochester, New York. Keep an eye out on winter afternoons – it’s one of those natural phenomena that’s hard to notice but once you do, it’s just so cool to observe and know what’s going on. The clouds had a beautiful evening glow too. I texted everyone I wanted to get in touch with and read the sweet email Jonathan sent to all my family to let them know I was out of surgery and all their nice replies. Various team members stopped by. I was feeling pretty darn good overall – pain only around a 4 on the 0-10 scale – and getting by on just the Tylenol.

Tangent – TV and Google

I don’t typically watch much TV and that was something I was looking forward to! I watched all of Jeopardy! (a rerun), part of a Simpsons episode (see below), and enough Food Factory (National Geographic channel) to get sick of it even though I love that kind of behind the scenes/factory tour stuff. It’s been surprisingly difficult to document that’s what the show was. I thought I remembered the title, and was sure there was a segment on Skippy peanut butter and on a Chuao crunch chocolate bar, but initial Googling didn’t bring it up, presumably because the string “food factory skippy peanut butter” are too generic. Adding “episode” did bring it up – “Working for Peanuts.” My reference librarian background kicks into high gear with this kind of stuff; I’m sure it’s out there and get super-stubborn about finding it, sometimes spending a ridiculous amount of time tracking something down. It is inherently fun for my terrier brain but very frustrating when I come up empty.

First night – boo!

The next dozen hours were pretty grim – this is an unvarnished account – for 3 major reasons.

1. It turns out that although walking is the best way to clear laparoscopic gas pains long-term, short-term it can severely exacerbate them as the gas rises to the diaphragm and irritates the phrenic nerve (cool term I learned). I was somewhat prepared for the pain from reading experiences on the Facebook living donor group, but thought since I was so eager and willing to walk that it wouldn’t be so bad. But it was – a good 8 on the pain scale except I never got asked that when it was at its worst!  As others have described, it was a stabbing, electric shock feeling in the shoulders (“twingling” is the onomatopoeic word that kept coming to mind), but also like a metal band around the ribs, making it painful to breathe. I knew from my research that the opiate painkillers wouldn’t help. The nursing staff brought me hot towels for my shoulders, which helped a little bit, but the staff was overworked or something because whatever was offered or I asked for took at least 30 minutes to come. A nursing assistant suggested some stretches and self-massage, and ultimately I knew it would go away so I mostly just suffered through it. Each time I walked it would last about an hour at peak and then subside again.
2. My poor roommate, an elderly lady who spoke Italian with what must have been a heavy southern accent (lots of “Madron!”) and hardly any English, couldn’t navigate her tech and I ended up needing to help her quite a bit (as much as I could which wasn’t much). It first became clear when I was watching the Simpsons on my own TV and she started shouting. It took me a while to realize she was talking to me, trying to tell me she wanted me to switch to the news. I tried to explain that she had her own TV (hers was off) and she could control it herself, but ended up changing the channel until a staff person came in and I could have them turn it on for her. She couldn’t hear anyway because the beds are set up so the speaker is on the remote control which is attached to the bed. Then for the rest of my stay, I would need to use the button to call the nurse for her because she couldn’t figure it out. I never knew exactly what she needed or wanted (we had a curtain separating us) but each time it would take someone at least 15-30 minutes to come, during which she’d be yelling and crying and I kept saying I had pushed the button and hoped someone would come but didn’t know if she could understand me… it was pretty awful. I only slept a couple of hours in fragments, and it seemed like any time I fell asleep she would wake up and need something. I felt really bad for her, especially when staff who didn’t realize she spoke Italian would try to talk to her in Spanish. They sometimes used a translation interface but it never seemed to understand what she was saying (because of the accent maybe?) It would have been very cool and Star Trek-y if it had worked right.
3. I knew I risked having caffeine withdrawal, but foolishly didn’t think to ask for black coffee first thing in the afternoon (I never drink coffee after noon because I have insomnia, but of course I should have known I wouldn’t sleep well that night anyway). A headache started late evening, and sure enough – skip the rest of the paragraph if you want to avoid gross stuff – it turned into a classic caffeine withdrawal migraine complete with vomiting. All over myself because I couldn’t get up and didn’t have a container. And then I had to just lie in it for quite a while because the nurse was helping my roommate and couldn’t leave her, and the assistant was elsewhere. The poor nurse could hear me and kept apologizing – I told her it was OK, and it really was. At least I was on a liquid diet (a reason to actually be thankful for the bowel prep!) and humans are waterproof and sturdy… and the Stoic/Mr. Money Mustache voluntary discomfort principle, which has helped me so much under so many circumstances, sure came in handy. A low point for sure. Once the nurse was free to help me clean up, the fresh johnny felt really good. I eventually got an anti-nausea med (there was supposed to be a standing order but there wasn’t) but I think it was already past where it did anything.

Plus a lot of little reasons: catheter discomfort, restless legs, too hot, couldn’t reach the things I had brought with me, every request took forever.

Next day – going home

Even though I was so short of sleep, I didn’t feel particularly exhausted or anything, and once the day broke things got better incrementally. Over the course of the morning I shed the unused IV and the catheter. People kept checking my incisions and saying they looked good – nowadays they use  surgical glue (way better than the metal staples I had for my first surgery!), which is waterproof and eventually peels off on its own. There are 3 half-inch incisions spaced out horizontally below the belt line around to my side, and one longer one (where they actually extracted the kidney), maybe 3 inches, very near my old bikini-line abdominal scars. My surgeon was careful to go between muscle fibers as much as possible, which has made healing way easier (and much less risk of hernia etc.) I asked multiple times for a walk, and the guy who was going to take me kept saying it would be another little while; finally I got the fall bracelet and bed alarm removed so I was able to go myself and told him he was off the hook when I saw him. He was super-friendly like everyone else but it had literally been two hours since I had first asked. I also had to remind the nurses multiple times to give me my Tylenol which was supposed to be routinely every 6 hours and was more like 7 or 8. Perhaps it was all related to the hospital system being super-stressed with covid, but that was part of what made me really eager to get out of there. Whenever I saw the team they reassured me I was ahead of the curve in terms of what I needed to do to go home. I finally got solid food for lunch, which wasn’t bad (veggie lasagna and ice cream) especially compared to the liquid diet where even the things I theoretically like (juice, sherbet) tasted chemically and gross.

I forgot to say that I had asked about my recipient and hadn’t heard anything until early evening, when they said my kidney was doing well for her – that was the best news, and really reassuring. I had brought a card for her which I was able to give to one of the transplant team; not sure when they were going to give it to her but I was glad to get that box checked off.

Finally around 1 they asked me if I wanted to go home and I started trying to figure when Jonathan should come for me… I knew everything would take forever and it sure did. I had already changed back into the comfortable dress I’d arrived in and was assembling my stuff when my primary surgeon came by for the first time – he said it didn’t look like I had surgery! They called for transport around 2pm and the person finally came around 2:45 – Jonathan was already waiting – to take me by the pharmacy for discharge meds and out to the car. The wheelchair ride started aggravating the gas pains again and the ride home was pretty painful, but it was so great to see Jonathan and to be on my way. It’s really only about 20 minutes from the hospital to home – we are incredibly lucky to be so close.

The coordinator consulted with the whole team and they are all confident in my safety (which I was too) and that elective surgeries won’t be canceled unless things get truly terrible here – which they might… Jonathan and I talked at great length and I decided to go ahead but to wait to inform my family until closer to. So, pre-surgery testing today!

• Covid test – just a long, somewhat uncomfortable Q-tip, not the brain scrape people have mentioned. No wait – I got there early and was done before my actual appointment time. Still waiting for results.
• 9 tubes of blood, not too bad. The phlebotomist was so nice and said she’d be seeing me again. The whole team has been wonderful; I feel very fortunate in my transplant center.
• Meeting with the coordinator – my recipient is female and middle-aged, just like me! There’s a slight possibility we might get to say hello post-surgery/pre-discharge, but no promises of course and it’s up to how she feels.
• A bag of stuff – magnesium citrate for bowel prep, 3 bottles of pre-surgery Ensure (blech!), special soap for washing
• Met with my social worker in person for the first time – I really liked her. She also has run 3 marathons, loved hearing our Carl Kasell answering message from when I was on Wait Wait Don’t Tell Me, and so I got to tell her about being on Jeopardy! – and it turns out my coordinator’s son lurves J! and I shared my videos/blog posts with them
• Meeting with the financial coordinator, pharmacist, and a surgeon (who will be attending, not the primary). I will automatically get a TAP block for abdominal pain, yay. No surprises there except:
• They are taking the left kidney, with two arteries and one vein, over the right with one artery but three veins(!) I will keep the Captain (Darryl Dragon) and donate (Toni) Tennille no matter which is which.
• Confirmed: no visitors/companions at all – Jonathan will drop me off and pick me up when I’m discharged. I’m fine with that – makes it easier in some ways.

Oh ugh. I was about to send emails to my close family notifying them of the donation & surgery date (I haven’t told them a thing yet) and my coordinator calls to check on me with regards to the covid spike. Because this surgery is totally unnecessary for me, they are more hesitant about bringing me in. And Dec 9th will be at the peak of post-Thanksgiving-foolish-get-togethers surging – our area isn’t as bad as some, but positivity is over 4% as of last week and cases are climbing. I don’t want to postpone! But I also don’t want to do anything risky, and I don’t want to freak out my family if it turns out they cancel on me anyway… My coordinator is going to talk to the team and get back to me. Ugh!

Clarification: Think of this as a cry of frustration, not a decision to plow ahead. I don’t want to skip travel and parties and movies either but I do/will. “I don’t have to like it” is our big motto around here for the things we know we need to do but resent. Anyway, I’ll be guided by my team (I haven’t heard back from my coordinator yet). If we have to postpone, it will probably be until spring at the earliest and I’ll need to retake all the tests. A very tiny, invisible-to-the-naked-eye deal compared to what 2020 has taken from so many.

Silver lining (I can almost always find at least one): if surgery is cancelled I won’t have to do bowel prep on my birthday!

I thought going into this that it was akin to running a marathon. I’ve done that 3 times (looking forward to doing another someday) and it’s sure proved to be an apt comparison. Hold you head up and keep going…

I have a surgery date: 12/9 (day after my birthday)!

Yesterday I posted a bunch of questions to Garet Hil, the NKR founder, about the waitlist, non-directed donation, etc. They were requesting comments on the Youtube video of his keynote for the virtual National Kidney Donation Organization conference last week – supposedly they are going to answer questions tomorrow, but weirdly the comments are gone now? Then this morning I talked to the transplant social worker about the possibility of donating directly to the local deceased donor wait list, and which NKR-like protections I could still get – basically none, but she was going to ask whether I could at least request a recipient on Medicare, which covers complications properly, versus private insurance which can cut off. A few hours later my coordinator called about a match email which basically sends me back to the local waitlist without a chain, but with full NKR protections. So it’s a little disappointing not to be part of a chain, but very exciting because:

• I’m directly helping someone who doesn’t have a living donor match (awesome for them if it works, because living kidneys last way longer)
• It’s someone local, which feels good
• Because we’re in a COVID sane area, I’m at least a little more confident my recipient won’t get it… no guarantees of course as we enter the next phase, but still!
• If/when my recipient agreed to get in touch, it would be easier to meet them
• Most of all right now, no more waiting for a call, and plenty of time to plan!

I’m going to wait to tell family until about 3 weeks out, which is probably when I would have heard under normal circumstances. Whew! Poor Jonathan’s reaction was “Oh no…” (because of the timing) but he is still very supportive. It will have been a year and a day since I started this process, and I’m so excited to be done during 2020! Fingers crossed nothing goes wrong!