Archive for the ‘Kidney Donation’ Category

Living Kidney Donation Reading List

If you are like I was, when considering donation you just cant get enough of reading about it. Below are some of my top choices.

Living Kidney Donation Reading List

Books:

Marsh, Abigail. The Fear Factor: How One Emotion Connects Altruists, Psychopaths and Everyone In-Between. Basic Books, 2017. I have heard and read Marsh’s story and her theories in various formats and I will say her research is fascinating. The basic idea is that the ability to recognize other’s fear, which is rooted in the amygdala, is missing in psychopaths and is present in greater degrees in altruists. The connection here to donation is in Marsh’s selection of altruists — she studied non-directed kidney donors. The science seems fairly solid but she is upfront about the fact that she has materialistic presuppositions that lead her to different places than a person of faith might end up at. I have a lot of thoughts on this book which I will likely get around to posting on at some point so stay tuned.

Mezrich, Joshua. When Death Becomes Life: Notes from a Transplant Surgeon. Harper, 2019. This is not a read for those with weak stomachs but is a fascinating and well-written book about the history of organ transplantation of all kinds. The stories, both the historical ones and those form the author’s own patients, are riveting.

Sytner, Ari. The Kidney Donor’s Journey: 100 Questions I Asked Before Donating My Kidney. 2016. A short book good for potential donors and for friends and family who may have questions about the risks of donation. Sytner is a rabbi and writes from his perspective which is a little different than mine but I still found a lot of points of commonality. A short and easy read. Free if you have Kindle Unlimited.

Websites about Donation:

Donor Care Network. The Donor Care Network uses the NKR’s system to create paired donations but aims for a higher level of care. Their lst of qualifying hospitals is smaller because their criteria are higher. I first began the process of donation by filling out a form on their website. I can’t honestly say if overall this made a difference relative to going directly through the NKR but my experience was a good one.

Living Donors Online has a long list of kidney donation stories as well as stories related to other kinds of donation and general information on donation.

National Kidney Registry (NKR). I did my donation through the NKR. They are the forerunners in matching paired donations to maximize transplants. I found the interview with its founder (see Donor to Donor under videos below) very interesting.

Us for Them. A Christian group promoting kidney donation, started by living donors. The videos of the founders’ story are moving and very well done.

Donor Stories:

There are so many kidney donation stories out there one can read (or hear or watch). These are some of my favorites.

Conversations with Living Organ Donors. This podcast only lasted a few episodes but the ones they did were quite good.

“Donating My Kidney at 19,” by Shelby Tacker. YouTube video. I wouldn’t normally advocate that one should donate so young but it is hard to argue with this young woman’s determination and sense of calling (she appears to be Christian). She tells her story well.

Cara’s experience as a non-directed donor

OK Solo, another non-directed donation story

Ray’s Story

My Kidney, God’s Path

Videos:

Donor to Donor. YouTube channel. Including an interview with Abigail Marsh (see her book above) and Garet Hil, founder of the NKR (also see above).

National Kidney Donation Organization (NKDO) 2020 Virtual Living Donor Advocacy Conference. On YouTube.

“Why Some People are More Altruistic Than Others,” by Abigail Marsh on Ted talks. For more detail, check out her book (above).

Theological Implications

Lewis, Robert L. “Don’t Bring Your Organs to Heaven Because Heaven Knows We Need Them Here: Theological Issues Surrounding Cadaver Organ Donation,” Boston University. At one point I went looking for articles on the ethics of organ donation from a Christian perspective. I didn’t find much. This series of articles by Lewis is pretty much it. The title, as you may guess, gives away that he is pro-donation. He does gives many denominational statements on donation which is useful.

Stats and Complications

“OPTN/SRTR 2018 Annual Data Report: Kidney,” by A. Hart, et. al. If you like stats, as I do, this is a great but long report to peruse. If the reading is too much, skip to the charts at the end.

“Risks of Living Kidney Donation,” by Krista Lentine, et.al. from Evidence Based Nephrology. A scientific article on the risks of living donation. I will admit that I found it a bit much to read but there is an abstract and some helpful graphics.

Changes in Kidney Function Follow [sic] Living Donor Nephrectomy,” Ngan Lam, et. al. Brief abstract with a nice graphic on how kidney function changes.

Testimony of Jane Zill from Organ Donor.gov. This is mostly a call for better follow-up.

“Life after Living Organ Donation Not Always Bright,” by David Wahlberg from The Wisconsin State Journal and “Lessons Learned: The Reality of Living Organ Donation,” by Donna Luebke from Narrative Inquiry in Bioethics (vol. 2, no. 1, spring 2012). These two articles tell Luebke’s story. I do think it is important to note that she donated a while ago and that she had an open procedure which is no longer the norm.

How a Calvinist Donates a Kidney

Today I have something a bit different for you. We are laying aside the educational philosophy for the day, and I am going to tell you a story instead. Three weeks ago I donated my right kidney to someone (not sure who). This is that story. 

I am not sure I ever would have considered donating a kidney if I hadn’t known one person in real life who had already done so, and I soaked up those stories I found online of others’ experiences. I have no hard evidence on this but I suspect that many who consider donation are likewise inspired by others’ stories. So while I am not terribly comfortable talking about myself in this public forum, I feel like I need to be part of that process. The ideal outcome for me here is not to have people say “Wow, what a great thing she did” but to say “Wow, this kidney donation thing seems doable.” The more these stories are told, the more we can normalize the process and take it off its pedestal and, hopefully, save more lives. One last note of introduction — I can’t see the world in any way but through my own belief system and for me that means my Christian faith. If you don’t come from the same place, I hope that you can still get something out of this story. 

Step 1: Kidney donation comes on the radar

Time involved: the amount it takes to read a Facebook post

For almost 48 years, donating a kidney was never anything I thought about myself doing. I was aware of course that these things happened and I knew one person (a member of my church family) who had donated a kidney, but I did not think of it in terms of myself at all. In the summer of 2019 when I was 47 and ⅔  a friend posted on facebook about the child of a friend of hers who needed a kidney. This little girl was cute as a button, a homeschooler (as all my kids are), and had blood type O (as I do). This was the first time I ever considered donating a kidney. It wasn’t a good time in my life to start the process as my second child who has a chronic health condition was preparing to start college, and I had some initial resistance to the idea even though I was intrigued so I told myself if that if the girl was still looking for a donor in the fall that I would at least see what I could do. 

Step 2: Google stuff

Time involved: 6+ months.

Well, that little girl thankfully found a donor and has since had a transplant and seems to be doing well (I don’t know these people at all but I have followed the Facebook posts). But that initial thought caused me to do some Google searches on what goes into kidney donation and to think about the fact that there might be other people out there who need a kidney like mine. It turns out that “type O kidney needed” is a very fruitful Google search [1]. There are whole websites dedicated to people looking for donors. Even narrowing the search to type O people near me, I was overwhelmed. There are just so many people and every last one of their stories is heartbreaking. I decided pretty quickly that I could not possibly pick between them.

Fortunately, there are people who can do the choosing for you. The biggest such organization is the National Kidney Registry (NKR). You can start the process pretty simply by filling out an online form. That is the sort of simple I like — no personal contact, no awkward phone calls needed. Just enter your information in a form and the next step is theirs.

Telling the story up to this point has taken me about 10 minutes. In real life, this part of the process took about six months, from summer 2019 to January 2020. In that time, my process was almost entirely online and in my head. I didn’t talk about kidney donation to anyone because I needed to sort through it all and get as many facts and stories as I could. I particularly sought out stories that involved complications and bad outcomes because I wanted to know the worst. As the daughter of a mathematician, I also sought out statistics. I won’t bore you with the numbers; if you are interested, you can find them on your own. Only two things I will say — the immediate risk of a c-section is greater than the immediate risk of a nephrectomy (kidney removal), and in the long term, a kidney donor’s risk of kidney problems does increase but donors are screened very thoroughly so that their overall risk is less than that of the general population. 

The one in-person conversation I had in those months was with my then 17-year-old daughter. She sells tie-dyes and we were at a craft fair when a customer mentioned that she was buying a shirt for her daughter who had just donated a kidney. I asked her a couple of questions about it and when she left my daughter mentioned that she had had a dream that I had donated a kidney which prompted me to say that I was actually considering donation. Now theologically I am a cessationist (mostly). I am not big on God-talks-to-us-through-dreams-and-visions and am certainly not of the I’ve-got-a-prophecy-just-for-you school. So I didn’t and still don’t take this as a prophetic sign. It was a nudge to keep me researching. In the long run the Scriptures tell us that a prophecy is tested by its outcome — if it comes true it was real (Deuteronomy 18:22). So for me, even as I write this, I consider her dream a nudge and not a God-definitely-wants-me-to-do-this. 

There were a number of these nudges in those six months. I would alternate reading everything I could about donation with trying to forget the topic altogether. But every so often a story would come up in the news or a post online about donation that would make me think I needed to keep researching. (Though at the same time I am self-aware enough to realize that these stories probably kept coming up because I was inclined to see them, both because I tended to click on things that might in some way be related to donation and because Facebook and Google are really scary cyber-megalodons [2] who know everything about all of us.)

Excursus: Why donate?

I think there are often a lot of reasons we do things, especially big things. It is not always a simple decision. I find the same thing, for instance, in my decision to homeschool my kids. Why we started is not necessarily why we continued. In the end, it becomes very hard to answer what seems like such a simple question: “Why do you . . .?” The same is true for kidney donation, at least for me. Probably the truest reason is that I kept researching and ultimately filled out a form and started the process and then kept with the process because I knew if I didn’t I would regret it more and would always wonder if I could have donated. That’s not a bad reason. 

Another, slightly crazier, way to say it would be to say that the idea consumed me even at times when I really wanted to forget it and read all the negative stories I could. Reading others’ stories, I think that this is not infrequently the case. One I read (actually I think it was a podcast I listened to) said that some people are willing to give kidneys and some people actively want to give a kidney. For some reason, though I spent decades never giving it a thought, I fell in this latter category. Though at times I could stand outside myself and think that this is utterly crazy and that allowing someone to cut up your healthy body and take out a perfectly good organ is borderline barbaric, still I couldn’t get away from it. 

Of course there are other better reasons to donate a kidney. One for me is that it is such a profoundly pro-life thing to do. I hope that if you are not pro-life in a political sense that you will not abandon me here. I mean this is a very broad sense. In a day and age when slogans like “black lives matter” and “all lives matter” compete with each other and when we have arguments about whether we should wear masks to protect complete strangers in the grocery store, I hope that we can at least agree that life is good and generally worth preserving, though we may disagree about what that means practically speaking. To give a kidney is to act for the life of another. We are all called to do this in various ways and organ donation is one of those ways though it is not for everyone. 

Acting for the good of the life of another always costs us something. This is true of giving birth. The phrase “get my body back” would not exist if there were not a level on which the new mom loses her body (and I hate to tell you but you may never get it back as it was). In many ways kidney donation is easy (she says before having actually done so) because it is purely physical. Other ways we speak into the lives of others cost us in other ways, some less profound and some more so. 

Step 3: Tell a few important people

Time involved: one month, 10 minutes, specifically one month of delaying and 10 minutes of actual talking

My daughter and I had briefly discussed kidney donation in August because it came up organically [3]. The first person I deliberately brought the subject up with was my oldest child. I knew he would be a pretty easy first person because I expected him to be supportive of the idea. We had actually gone to give blood, something he had done many times but I never had. It seemed like a necessary first step. How could I give a kidney if I hadn’t even given blood? In fairness, I had gone to give blood in the past but always tested as too low on iron. I almost did this time as well. I failed on the first test and just passed the threshold on the second. On the way home, I brought up kidney donation. I explained the need and how donation chains work (more on that below) pretty briefly. His response was “I think you should do it.” 

My husband was harder. I didn’t know what to expect from him. He had major abdominal surgery as a teen at a time when laparoscopic was not an option so he isn’t very positive on having one’s gut sliced open. I don’t know what he expected when I finally got up the courage to say I had something serious to talk about. All in all me potentially giving away a body part may not have been as bad as whatever he expected. To my surprise, he was at least mildly on board from that first conversation and has become more so over time. Many months later I was saying “if I have surgery,” he was speaking of it as a sure thing.

Step 4: Fill out a form online

Time involved: 5 minutes

I finally took the definitive first step of filling out an online form around the end of January 2020. As I recall, one form led to another asking for more specific medical information. Everything is via email at this point in the process. I don’t think it is entirely automated but it feels pretty close to it. I’m not a huge fan of talking to people on the phone but at times it felt a little too impersonal for such a big decision. 

Step 5: Keep a giant jug of urine in your fridge for a day

Time involved: 24 hours

Having passed the initial paperwork stage, the next step is to give blood and urine, a fair amount of each. In fact, you have to collect all your urine in a 24 hour period in a jug the NKR mails out to you and take it to a local lab where a nice lady thanks you very politely for this lovely yellow gift and comments on how well you did. She also takes some of your blood. 

Since I was going to be keeping my urine in the fridge for a day, I figured I had to tell my other two kids, ages 14 and 16, at this point. One of them was on-board from the start. The other asked, “Why would you want to do that?” In his defense, he did it in a fairly polite, honestly-wanting-to-know way. Frankly, the vibe I got from all of them, husband and kids, was mostly along the lines of “Uh-oh, what has she got into her head now?”

The initial blood and urine experience wasn’t too bad. It does get a bit tiresome to collect all your pee by the end of the day, but it wasn’t really hard. We homeschool anyway so I picked a day we would be home all day (side note: in normal time homeschoolers are not home all day). Beyond that there wasn’t much inconvenience. 

Step 6: Pick a transplant center

Time involved: about 2 seconds

The results of this initial screen were good so I got to move on. Still everything was automated. The next step was to pick a transplant center to work with. I am in the greater Boston area so there are a number around. I had tried to research them individually but in truth there are at least three good, quality hospitals in the area that do this. I ended up picking Brigham and Women’s in Boston (BWH). I can’t speak to the other local options but to date I have no reason to regret that decision. They have been pretty good to work with and I have since read a book on the history of transplantation [4] in which the Brigham looms large so that is very encouraging. 

Step 7: Have an actual phone call

Time involved: Maybe 15 minutes not including the time to stress about having to talk to a stranger on the phone

And . . . 

Step 8: Give away more of your precious life-blood

Time involved: A few weeks of waiting and about 2 and half hours at the lab

At this point I had my first actual conversation with someone medical, my coordinator at BWH. She asked a lot of medical questions (again) and ordered blood work to be done at the hospital lab (which fortunately could be done at a more local satellite office). There is a lot of waiting and down time in the donor evaluation process. This is even more true if you are female. Sometimes you have to wait for an appropriate time to give urine. Not just any week will do. I ended up having this blood work done right around mid-March, 2020. I remember the time frame, if not the exact date, because things were just starting to change due to COVID. A big bottle of hand sanitizer sat bang-splat in the middle of the lab waiting room. Masks and strict social distancing had not yet made an appearance. I had to fast and do a two-hour glucose tolerance test (among many others) so I got to the lab first thing. I was glad I did because it got crowded soon after. After they drew an initial dozen vials or so, they sent me back to the waiting room to drink my glucose drink. There was an awkward moment there when I ran into someone I know in a professional setting. You know how you don’t recognize people out of context? There was that moment of seeing someone who says hello to me and looks familiar but I can’t place and then an awkward few minutes while we sat side-by-side in the crowded waiting room and I drank my overly sweet, flat orange soda [5]. After that I got to escape to a quiet chair upstairs with my book for a couple of hours till the time of the re-draw. 

Intermission

Time involved: 2 months

If you have been paying attention, you will realize that we have now reached mid-March 2020. If you are reading this years in the future, I hope that life has so gotten back to normal that you have completely forgotten the significance of that time frame. But I doubt it. Between my coordinator ordering the lab tests and the results coming back, COVID hit. She began working from home and the world basically shut down, hospitals especially (except for the overcrowded ERs and ICUs of course). I once again had to pick up a phone and called in to get my test results which were all good. Unfortunately, future testing was on hold indefinitely. She told me to call back in two weeks which in retrospect was a really overly optimistic time frame. 

Excursus #2: Communicating with your coordinator

Since we have two months to chat, we might as well talk about your relationship with your donation coordinator. These are very nice people who work hard in a very meaningful and necessary field. But they also have certain priorities. One of those is to make sure that you are not a kook. Another is to make sure that you are healthy and are under no pressure to donate. I found in my first conversation that my coordinator was very business-like and a bit discouraging. She focused on the negative in my family medical history. I had read that such was the case and I can understand it — they need to be sure to rule out people who aren’t healthy enough to donate. Their job initially is to screen people out, not to encourage donation. I also found that I did not always get calls when I expected them. More often than not after testing, the next step was for me to wait anxiously for two weeks and then to finally give in and make the call myself. When I did call, I would find my coordinator kind, well-informed, and willing to talk, but the impetus always seemed to be on my side. Again, this may be deliberate. I have heard that they often slow down the process so you have time to think and/or that they want to drive to be coming from the donor’s side. They don’t want to be accused of pushing people into donation. I will say that whenever I did call I was told, “Call any time with any questions.”

Step 9: Learn to use Zoom

Time involved: about a week

Even while the five other people in my home studied and worked from home, I vowed to myself that I would try to get through quarantine without having a Zoom meeting. I failed. I did not call my coordinator two weeks later but when I began to hear that hospitals in other areas were opening up for testing again I did finally check in. I didn’t actually expect much to happen right away but my coordinator suggested I do three Zoom meetings with the social worker, nephrologist, and surgeon. These would usually be done in person along with the all important in-hospital testing, but, well, COVID. They were all set up within the next week. 

Before the first meeting, the office administrator called to walk me through how to use Zoom. This was my first contact with her but perhaps she had been warned about me because she spent a long time saying, “It’s okay. It’s really very easy. Don’t overthink it.” She seemed quite concerned but I assuaged her fears somewhat by assuring her I had a house full of teenagers who would love nothing better than to tell me how I am doing something online wrong, and perhaps even to help me do it the right way. When I told my youngest (then age 14) of the conversation she was very amused and appointed herself my guardian for the occasion of my first Zoom meeting. She found the phrase “Don’t overthink it” particularly appropriate and continues to use it on me regularly. 

That first meeting was with the social worker. She was, as I had been told ahead of time very, very nice and easy to talk to. I think I aced that one.

Sadly, with one meeting under my belt, I got over-confident and told my daughter I didn’t need help with my second meeting, the one with the nephrologist (kidney doctor). It turns out I did. I still don’t know what went wrong but somehow the doctor and I both thought we were in the right Zoom room (say that ten times fast) but neither one could see the other. Long story short, the meeting started twenty minutes late and was much more socially awkward. We both survived it though. 

Step 10: In-hospital testing

Time involved: One day

But wait, you say, what about the third meeting, the one with the surgeon? I can only assume God took pity on me at this point and decided to spare me another ZOOM-sperience. I unexpectedly got a call from my coordinator saying they could now do in-hospital testing and would I like to come in and do a real face-to-face meeting with the surgeon to boot. I said yes.

In the many donation stories I had read, the in-hospital testing is the big, long day. Thankfully, COVID actually made this a lot easier than it might have been. First off, I had already met with two people so there was less to accomplish. Then traffic had not returned to normal so the drive into the big city was pretty quick and relatively unstressful. The hospital was screening everyone who came in which took a little longer but then they provide you with a person to escort you to your first appointment [6]. 

I had three tests that day — a CAT scan, an EKG, and a chest x-ray — plus I got to give more urine and to meet the surgeon. Let’s take them in order:

CAT scan — They put in an IV, have you lie on a table and inject you with dye. Then they watch it go through your insides for a while. Sadly, you, the patient, cannot see this happening. I found the CAT scan oddly soothing though. The machine has pretty rainbow colored lights that flash slowly and I quite enjoyed them. The one thing all donors tell you about the CAT scan is that when they inject the dye you will feel like you peed yourself. There may be other side effects as well like feeling really hot or itchy. I didn’t experience much of the latter. As for the pee-yourself feeling, I will say for the females in the audience (men close your eyes for a second) that it felt more like getting one’s period and wasn’t nearly as bad as I expected. 

I had had a specific appointment for the CAT scan. The EKG and chest x-ray were walk-in affairs. I don’t know if it was because of COVID and business being down or if they prioritize people sent to them by the transplant office, but for each of these I was taken in almost immediately and the tests were done quickly. Giving the requisite urine was actually the hardest part because some other patient was in the lab bathroom for a long  time. For all I know she might still be there. I finally went to use the public bathroom in the hall and then had to walk back down the hall with my little specimen cup full.

Last appointment of the day was with the surgeon, a tall, young fellow [7] that I liked immediately. He could already see the preliminary results of my CAT scan and said my kidneys looked good. The only downside — and this is a big one — is that he was the first (and to date only) person to insist on this whole elbow-bump thing that is supposed to replace handshakes. Having now tried it once, I can say with confidence that this is something I can do without. 

One funny — and fun — thing about the donation screening process is that if you are under 50ish they consider you young. I pressed the surgeon on details and he admitted that I am in the middle (read: middle-aged) category. For the most part they seem to prefer older donors. If you are young, you don’t really know yet what your health will be like plus you will have that many more years to develop problems after donation. The one downside to being in the older category is that your recovery may be slower, but if you are 60 and healthy enough to donate you are probably going to be okay. [8]

Step 11: Stressing about results

Time involved: about two weeks

Having online portals for your medical information is very useful in some ways but it also means that one can see things like CAT scan results before talking to any medical professionals. One thing I didn’t know is that that scan looked at pretty much all my internal organs. When I got an email that I had test results, I logged right in to see them and found a long document with lots of big words and numbers about not just my kidney but my appendix, liver, lungs, and gall bladder too. Though the kidney section said very little (which is good), all the other parts had notes of various sorts. If you don’t have a strong constitution and/or a good search engine, I don’t recommend looking at your report by yourself. Even with googling all the various terms, it is very hard to tell what is significant and what isn’t. 

This is one of those times my daughter probably should have said, “Mother, don’t overthink it.” But I did. I did overthink it. Which leads us to . . .

Excursus #3: Life ain’t linear, or You don’t know what God has planned 

I had read far too many accounts of people who started the testing for donation only to find some previously unknown health problem to be casual at this point in time. What if God started me on this process not to have me give a kidney but to uncover some other issue? This is not an uncommon experience. I can’t pretend at any stage of the process that I know what the bigger plan is. Remember that the prophecy isn’t a true prophecy until it comes true. 

And yet, I found it strangely comforting that in the midst of all these other little oddities the CAT scan found that those two kidneys were two (some people have one; some have more), that they had the normal number of arteries (again, some have more which doesn’t rule you out but makes surgery more complicated), and that they had no cysts or stones (also not necessarily a disqualification). At that point, I began to feel that these two kidneys were not my two kidneys but that one at least was placed there for someone else’s benefit more than my own. I began to feel like a caretaker of this little organ more than its owner.

Step 11: Yet more testing

Time interval: three weeks of waiting and one more day at the hospital

Finally I broke down and called my coordinator again. She had my results at the ready and didn’t say anything about all those other organs. The only concern was that one of my kidneys is a little larger than the other.  So I was off to the hospital again for a renal scan with the nuclear medicine department plus a bonus in-person appointment with the nephrologist. The point of the renal scan, as far as I was led to believe, was just to see which kidney is doing more work. They always take your worse kidney and you get to keep the good one.  The appointments were scheduled three weeks out, but finally I got to drive into the big city again.

The renal scan wasn’t as soothing as the CAT scan (no pretty lights).  I got another IV, with something radioactive this time (I assume), and got to watch a very grainy image of my kidneys and bladder for 25 minutes. It was so riveting I almost fell asleep. 

Then I got to go meet my nephrologist in person. Perhaps it was the radioactivity [9] but once again we had technology problems. Her desktop wouldn’t work. Fortunately, it turns out they can look at your medical records on their phones these days (a fact which is a little scary though it proved useful in this case). The appointment was mostly uneventful. She could see preliminary results again and said my left kidney was doing 56% of the work while righty was only pulling 44%. That means they will likely take my right kidney and leave the left. (Usually they take left kidneys, all else being equal. It has to do with arteries and easy access and things like that.) I was also very pleased that my blood pressure was good at this visit. It had been a little high when I met with the surgeon and though no one mentioned it, I was a little concerned that it would disqualify me and/or lead to more testing. This time it was perfect though (the doctor said so twice). [10] 

Step 12: More Waiting and

Step 13: Tell More People

Time involved: About 2 weeks

When I went in for my renal scan one of the things I dreaded most was what I knew would come after — more waiting for results. You may have guessed by now that patience is not my strong suit. As I did wait, even though things were not yet definite, I felt I needed to tell my mom about this whole donation idea. One aspect of doing this all during a pandemic is that every conversation we had been having went along these lines:

“So what have you been doing?

“Me? Nothing, How about you? Have you been anywhere?”

“No, me neither, We haven’t been anywhere.”

Except of course I had been to the hospital a couple of times and had had CAT scans and the like so every conversation felt like a lie. I didn’t want to worry her too early if things didn’t pan out, but I also couldn’t keep going the way I was. 

My mom lives halfway across the country so a phone call was the way to go. I honestly wasn’t sure how she would take this. I was pretty sure that in the long run after it was done and I had recovered she’d be okay with it, but I thought she might not be in the short run. I underestimated her. She immediately said, “Oh, that’s wonderful! I’m not sure I could have done it but good for you.” She didn’t even ask many questions.

About a week after the renal scan I got the automatic notification that my test results were in on the online portal. They were as expected; no surprises this time. At least as far as I could read them, it all looked good, with my right kidney doing a little less work than my left as the nephrologist had indicated. I knew the surgeons had to review this so I resolved to give it another week before making contact,

To my surprise I got an email from my coordinator, on the morning of Saturday, July 4th no less, telling me all looked good and they would be reviewing my case and giving the final go ahead a week later (at the Brigham these things are always done on Fridays apparently). She said she didn’t expect any surprises.

But she also wanted my voucher letter back naming the five people, one of whom could get a kidney credit, so to speak, because of my donation. I knew my one daughter with preexisting conditions would be one of the five but who would the other four be? In my mind my siblings are those I am essentially taking a potential kidney away from. So I began to contact them as well. We are on good terms but we don’t communicate a lot; we all live pretty far apart. Two I emailed, one I called. My sister lives in Europe and also has kids of her own (more potential future donors) so I didn’t expect to put her on the list but I figured I should ask. One brother is all the way across the country and doesn’t see the rest of us much. He appears very healthy, but I couldn’t know for sure. He responded right away to my email which is surprising enough and politely thanked me but declined to be on the voucher. The one brother who lives halfway across the country (near my mom) I called. I didn’t ask him; I told him he was going on the voucher. He assured me his health is fine thus far but thanked me. I was so busy thinking about my own stress in contacting people and telling them this big thing that I have to say I didn’t think at all about how they would take it. In retrospect I think it is a very odd thing to have someone call you out of the blue and say essentially “I would give a kidney to you,” or on your behalf at any rate. I am not sure if there is a better way I could have done things but it is something to think about. 

Step 14: NKR Blood Draw

Time involved: About an hour including travel to the lab and back

Though my approval was not final, I got a box of eight blood draw tubes in the mail from the National Kidney Registry (NKR). It is this blood which they will use to match me with a recipient. I was a little nervous about going in to get this draw done because I didn’t have lab orders and my experience is this tends to confuse people, but the lab at the hospital’s satellite office didn’t seem phased and the phlebotomist inspired a lot of confidence. Those eight tubes got overnighted to California.

Step 15: Approval “Day”

Time involved: 48 hours

Finally Friday came, the day the team meets to discuss patients and, in my case, give the big thumbs up or thumbs down. I was pretty busy this day which is probably good. Honestly wasn’t that stressed about it, even when I didn’t hear back from my coordinator that day or the next. Other people in my life were asking me the results but I remained fairly calm. It helps that my coordinator had told me a couple of times that she didn’t expect any surprises. I finally heard from my coordinator via email Sunday morning with the good news: Approved!

Excursus #4: Choosing a Recipient

I decided early on that I could not possibly choose a recipient. This is no judgment on those who do directed donations. It is often the case that God puts people in our paths for us to minister to. This is the meaning of the parable of the good Samaritan (Luke 10:25-37) [11]. But God did not put one specific person in my path. When I looked at all those people desperately posting their stories online in the hopes that a stranger would a) step up and b) be a match for them, I knew I could never choose. What makes one worthy of this salvation and not another? It is easier to have sympathy with those who are like us in some way. It is easier to have compassion on those who are young or have kids of their own or are the victims of some rare and tragic genetic illness but does that make them more deserving? I was painfully aware that God saves us not because of the factors we have to recommend us but in spite of all the factors which argue against us. 

Step 16: More waiting, more telling, more blood, more paperwork

Time involved: Another two weeks

With approval officially under my belt, I decided it was time to tell pretty much everyone. I had already covered my biological family but now added my in-laws (which my husband got to do), a few homeschooling friends, and everyone in my church. Thankfully, COVID gives one a good excuse to do these things via email. I continue to be surprised by people’s responses — but only in one direction. I have had absolutely no negative responses and very few people who have even asked me why on earth anyone would do this. 

When I talked to my coordinator about the approval and the next steps I asked her about timing and she said “2 to 3 weeks.” I realized after the fact that I wasn’t sure what was 2-3 weeks. Till surgery? Till I get a match? Till ?? 

Unfortunately, she also said they had none of my paperwork. As you can imagine if you have ever had any medical procedure, there is a lot of consent paperwork here. I had mailed mine in a month before and she had apparently never seen any of it. This seems to be largely COVID related as the staff is not actually in the office often and this allows mail a good long chance to get lost. So they mailed more forms and I did them all again (and scanned them all just in case this time). Plus my voucher people each had to fill out a form. Four of these live in my house so I also orchestrated that. Fortunately, the one at a distance did his promptly and without issue.

After a full two weeks, I contacted the coordinator to see if she had all that paperwork yet (and maybe just to nudge things along a little). The response was a “let me see” on the paperwork which is not encouraging. But she also mentioned that she needed me to go to the lab for “a blood draw.” Silly me I took “a blood draw” to mean “oops, we need just one more tube.” Nope. Five tubes. It turns out phlebotomists are pretty bored at 2:30 p.m. on a Friday so I ended up with a good number of them laughing at me. “One tube? You think you can get away with that? We’re taking five!” This blood is apparently to check for various things I may be carrying from the antibodies to mono to syphilis so they know what my hypothetical recipient might need to be treated for. [12]

Finally after a couple more messages left, I heard back from my coordinator that she had gotten my paperwork and could now tell the NKR to start matching me. Because so much time had passed, she suggested a September surgery (I had originally been hoping for the summer). She also gave a lot of specific information in this conversation about the surgery which made it all seem a bit more real.  One thing I learned is that when a match is made they (the center) get 24 hours to say yes or no to it. Since I am looking to donate to a stranger, there really would be no reason to say no.

Step 17: You’ll never guess — more waiting!!

Time involved: another 4 weeks

So I am back to waiting. This time waiting for the phone call that will say, “We have a match. You will have surgery on . . .” Or at least that was what I thought I was waiting for. In real life it didn’t quite work out that way. 

First of all, let’s discuss a topic I like to call: Timing, or Why You Shouldn’t Spend Too Much Time on the Internet. Online support groups and forums (fora?) are lovely things. They provide you with something your medical professionals usually can’t give — the experiences of real people who have been through whatever you are going through.The problem is that they are random experiences. The stories you hear (or read) there may not be the norm. Reading people’s kidney donation experiences led me to believe that once you get in the system you will have a match in like 3 days. It turns out this is not always the case. There are certainly plenty of other people for whom it takes longer but somehow the quick, exciting stories tend to filter to the top of the pile (can something filter to the top?). My experience was that even with my type O blood, which should be the easiest to match, it was a good 4 weeks till I heard anything. My coordinator, in all fairness to her, told me to expect 2-3 weeks. This was a much better estimate than the random internet stories. But it still took a little time beyond that. In retrospect, I think what happened was that my coordinator told the NKR I was looking to donate in September which, with no additional guidance, they read as “mid-September” and that was still a month away which to them is a long time though to me, the recipient, it sounds close. They would also have other people in their queue whose cases might be more urgent so they didn’t rush into matching me. 

On my end there was dead silence while the weeks ticked away, and though with COVID raging my schedule was nowhere near as full as usual, one does like to be able to plan things. So eventually I went for the old stand-by and emailed my coordinator a random question so as to bring myself back to her consciousness and maybe get some news. This strategy seems to work. I got my question answered plus a “we are still working on it; looks like mid-September.” The next week that got narrowed down to “around the 23rd.” And then maybe 4 days later to: “It looks good for the 22nd. You can plan but I will confirm next week.” And then a few days after that: “The 22nd looks very good.” Note that we went from good to very good. We are talking 6th day of Creation levels of surety here. [13]

Excursus #5: Altruistic vs. Non-Directed Donation

Since we are back to waiting, this seems like a good time for another excursus. Let’s talk terminology. The kind of donation I am doing can be called either non-directed or altruistic donation. You may have noticed I consistently (I hope, with good editing) use the term non-directed. It is called non-directed because one essentially gives to the system without designating to whom the kidney should be given. The powers that be use their little algorithm and decide who is most in need of this particular kidney and how it can best be utilized. 

Altruistic is a much more loaded term, and I don’t like it for two somewhat contradictory reasons. It implies that these donations are somehow more admirable than others. To give to an anonymous stranger is not any more noble than seeing a billboard or bumper sticker and calling the number to donate (this would be a directed donation because the recipient is designated, even if he and the donor have never met). And sometimes giving to one’s family member or friend or friend of a friend is an even bigger decision. There can be a lot of layers in a personal relationship. I can imagine my donor as anything I want him or her to be, and if, God forbid, things go wrong, I may never know. If your Cousin Johnny needs a kidney, you probably know just how annoying he is and you might think his chronic kidney disease is not much of an excuse. You might also know that he has never taken very good care of himself and is not likely to start just because he has your precious organ inside him. Sometimes giving an anonymous stranger is way easier than loving those we know intimately. 

On the flip side, as a good Calvinist, I just don’t believe in altruism. For a deed to be altruistic implies that it is done all for selfless reasons. We humans in this life are simply not capable of putting ourselves aside to that extent. There is always something in us that seeks its own, even if it is only to hear those words: “Well done, good and faithful servant” (Matthew 25:23). 

Kidney donors are not better than other people. You can trust me that — pre- or post-donation — all my old sinful habits are still just as entrenched as they always were (and if you don’t believe me, ask my teenage children). A good deed done for the wrong reasons is not a good deed. Even a good deed done for the right reasons does nothing to balance out our bad deeds (and we all have bad deeds). There will, sad to say, be kidney donors in Hell. Giving part of your body for another does not earn you a place in Heaven. If we do any good, it is because Jesus Christ has given His life for us, as a response to the goodness He has already given us, not as a way to earn His favor.

Step 18: The Vampires are Back

Time involved: A couple of hours x 2

So I never got that big “we have a match for you!” call. What I got was a series of progressively more certain emails. I suppose this is a bit anticlimactic but since I was excited by each one maybe it wasn’t a bad way to go, not one big spike of excitement but a flattened curve, so to speak.  By the time I got my “very good” email, we were about two and half weeks from the donation date. 

Perhaps not too surprisingly, there is a lot more blood to be drawn at this point. At T minus 19 days I went in for the pre-op blood draw. This is a big one. I could see no less than twenty things ordered on my patient portal, but they managed to do them in a mere 11 tubes. At T minus 14 days, I got to go in again, this time with a little box of four NKR tubes that had been mailed to me. These go to the recipient’s center so they can do a last crossmatch to make sure that we are still good to go. 

In looking at the paperwork that came with my tubes, I learned (a) where my kidney was going — the Mayo Clinic in Minnesota, and (b) the age of my recipient, possibly maybe. You see each person in the system is given a secret alpha-numeric code name. Mine is the first two letters of my name followed by my birth date (two digits each for month, day, and year). The recipient’s secret code name had a different format, four letters and four numbers, but the end of it looked for all the world like a year (19–). If my assumption was correct, this would make the recipient four years younger than me which seems reasonable both for making us a good match and for putting that person at a common age for transplants. In case you are wondering, with its combo of letters and numbers, my secret code name would be nigh unto unpronounceable so I don’t think I am going to adopt it in my upcoming life as a criminal  superhero spy. 

As a side note, I am becoming quite adept at the whole blood draw process. I know to stand on my giant blue dot to get screened and then to check in at the lab and can shake my head sadly at the (mostly older) people who are confused by this new process. I can confidently answer “no” to the “do you have any of these symptoms?” list without even looking at it. I even reassure people in line waiting to check in that, yes, the receptionist does exist and is coming back soon and you’ll still be in the same place in the queue so it really doesn’t matter how fast you get checked in. On my last visit I was talking to a woman about the new plastic dividers between the waiting room seats and I was able to reminisce about the gradual implementation of COVID precautions and how when I came in March there was just that one big bottle of hand sanitizer and how we all sat next to each other with no plastic barriers or masks. It made me quite nostalgic and I think I might actually miss these little outings. I wonder if I could schedule some recreational blood draws after surgery just as a chance to catch up? 

Step 19: My inbox lights up and  . . . Zoom! (aka Pre-op stuff)

Time involved: About an hour, spread out over a week

Remember those 20 blood tests? I think I got an email when every single result came in. You’ve got to love modern technology. I also got emails and texts about my new surgery portal (not to be confused with the regular patient portal). Digital communication-wise things were really hopping at this point. So it seemed like about time for my favorite thing: another Zoom meeting, this time with the surgeon. 

I went into this meeting expecting to be told things about my surgery. It turns out that it was mostly an opportunity for me to ask questions. I managed to come up with a couple, but altogether it was a 15 minute meeting, semi-awkward but with no technical issues. The one big thing I did have to ask was if I could get kidney pics. Thanks to those internet forums, I knew this was a thing and I had made the mistake of mentioning it to my now 15-year-old. She would have loved to have seen the whole surgery if possible. When the surgeon asked what kinds of pictures I would like, I said “as gory as possible.” He made a note in his phone. 

Two days later I had my pre-op phone call. The one where they ask you if you have any problems with anesthesia, if you have any of about two million medical conditions. The one phone call turned into two. I had been told this one would set up COVID testing but that apparently is a separate office. Let me set this up by saying that I was assured ahead of time, multiple times, that they had lots of testing locations they could work with and that there would no doubt be one close to me. Here’s how our conversation went:

Nurse: “Mrs. . . . this is  . . .  from BWH. I am calling to set up your COVID test for your surgery. We have lots of locations: West Roxbury, Newton-Wellesley, Natick, and Timbuktu. Is any of these convenient for you?”

Me: “No.” 

Nurse: “Oh. Where are you coming from?”

Me: “— town”

Nurse:  “I don’t know where that is.”

Me: “It is south of the city.”

Nurse: “Let me put that in my map and see what we have near there. It looks like Natick is the closest to you. Does that work?”

Me: “Yes.”

Nurse: “Great. Let me schedule that for you. Don’t worry it will just be a 15 minute appointment.” 

I like how she pretended to look at a map only to discover that she did indeed only have the 4 locations she first mentioned to me. Did I mention that Natick is a 45 minute drive each way (without traffic)? 

Excursus #6: The impersonalness of being a non-directed donor

Early on in this process I was shocked to find out how few non-directed kidney donors there are — about 250 a year in the US. As I near the actual donation date, I find I am less surprised by this number. I am not sure we should be asking people to do this, at least not in the way we are.

The problem is that the whole process is so vastly impersonal, and that is not natural to human beings nor should it be. It started, no doubt, with HIPAA laws that protect everyone’s privacy.  Throw COVID into the mix and we have a recipe for disconnectedness. HIPAA keeps a non-directed donor from knowing anything about their recipient. COVID keeps us from even knowing our medical providers. Do you know in all this time I have never seen my coordinator? I have met the surgeon and nephrologist, each once via Zoom and once in person. I did have one very good conversation with a social worker (again via Zoom). This whole long story is mostly written with the potential donor in mind, but if there are any medical providers listening, let me say this: your patients need to connect to someone somewhere in the process and that person might be you. I understand that we don’t want people being pressured in any way to donate. And we certainly don’t want them to donate in order to please their coordinator, but in a world of such vast social distancing, these are people who need some connection to some human being. If anything, I would postulate that non-directed donors need more connection than other people do. [14]  But all donors need to feel that they are part of a human process. They shouldn’t be made to feel like cogs in a machine. [15]

Let’s talk about that for a minute, the non-directedness. If you donate to a specific, designated person, even if it’s just someone you saw on a billboard or Facebook post, you have some idea of where your kidney is going. You know some basic demographic data like age and gender and you can at least imagine the person who is getting your organ and what their life must be like. Non-directed donors often get none of this. I was told absolutely nothing about my recipient. The few things I know, or think I know, come from my deductions based on an anonymous form. 

There are lots of good reasons to donate, whether we know the person we are donating to or not, but I don’t believe we are ever called to spend our lives for a cause. Without a person on the other side of this exchange, we are asking people to risk their lives and their future health for an idea. And that is a very dangerous thing to do. In fact, I would venture to say that when people are willing to risk their lives for an idea, more often than not it is a bad idea and lots of innocent people die. That is not what God did and it is not what He calls us to. God the Son did not lay down His life for an idea or a principle or even so that He might potentially save some people. He laid it down for real, definite people that He knew. [16] We respect those who are so dedicated to a cause that they will sacrifice for it, even to the point of their lives, but I don’t believe God ever asks us to put our lives on the line for an ideal. Christian martyrs, past and present, don’t die for an ideal; they are willing to die for a Person (for the One, ironically, who died for them). 

Now the actual risks of kidney donation are small — I understand that — but there is still some degree of risk involved and certainly some level of self-sacrifice. If we wonder why there are not more non-directed donors and how we can get those numbers up, my answer is simple: we need to make it personal. We know this in other areas. Why do you think charities ask you to sponsor a particular child in a third-world country? They know that you will give to a little boy whose picture you can see and whose story you can read when you will not give to a cause. Human stories persuade us when statistics don’t. And this is as it should be. We are made for this kind of connection. Most non-directed donors have some personal story that has gotten them started on the process (like the little girl whose Facebook story I followed). If we want more donors — and they are desperately needed — we need to make it about people. How do we do that? We can err too far on the other side. Pleas that are overly sappy and emotional manipulate donors by preying upon their emotions (I suspect you, like I, can again think of some commercials for charities that do just this). That is not what I am advocating.  But stories are powerful things. Words that are true and honest, without being manipulative, have the power to change hearts and minds and to move people to action. [17] 

Step 20: COVID testing

Time involved: 100+ minutes of driving, 5 minutes of testing

Did I mention that the COVID testing site was not near me? Google maps claimed 48 minutes but we are talking Saturday shopping traffic (haven’t these people heard of the pandemic?) so closer to an hour on the way there. If you know the area, let me just add that fire engines, sirens blaring, do not mix with route 9. On the way home I took back roads which was infinitely more pleasant, if not shorter. The actual test in between the drives was the best part of the experience. From walking in to out was maybe five minutes total and the longest part of that was waiting to check in behind an older gentleman who didn’t like that they gave him a mask with some sort of characters on it. He’s apparently a fan of the plain blue clinical ones. The COVID test went just what my very precise clinician said it would: it didn’t hurt, it felt weird and sneezy, and 2 seconds after it was done my right eye started to water. 

Step 21: The last 24 hours, or lots of phone calls

Time involved: 24 hours (that was obvious, right?)

I got my COVID test result late the next day (negative! yay!). The last day before surgery was fairly busy, both with things to fill up my time and get my house in order (literally) and with communications. I vacuumed. I scooped kitty litter. I talked to church people. I talked to my mother. I got texts and messages and emails. Did I mention that in all this I didn’t have one friend, relative, or acquaintance who has reacted negatively to my donating? From the donor forums I am on, I know that is not always the case so I’d just like to point out how wonderful everyone in my life is. 

The question of the day was “how are you feeling?” And really I have been feeling fine. I may not sleep a lot tonight (I have to get up at 4am anyway), but if I am nervous it is an excited kind of nervous, like you get before going on a big trip. And when I think that, I also think, “Boy, am I glad I don’t have to deal with airport security tomorrow.” Cause that seems way more stressful than going to the hospital. And I get to sleep through the hard part. Thinking of airports did make me wonder how my kidney gets from Massachusetts to Minnesota though. I hope he doesn’t travel coach. I can just picture him running down the moving walkways in the Pittsburgh airport trying to get his connection. He’s never been out on his own before, you know. I should probably go to bed.

Step 22: Pre-Op

Time Involved: about two hours

I think I was the second non-staff person at the hospital the morning of my surgery. The COVID-screening check-in wasn’t even open yet so I had to wait a couple of minutes just to get in. Everyone at that hour (5:30 am, for the record) seems to be going to surgical admitting. This process was pretty straightforward and pretty quick. A little bit of stand in this line and then sit here and then stand over there, but it was all pretty well organized and I was also one of the first to be taken back from admitting to the actual pre-op area. 

I should add that I was on my own at this point. I had gotten various different bits of info on whether I would be able to have someone with me for any of this process but the latest and seemingly most accurate was that my “support person” could come with me into admitting but not into pre-op.  This seemed nigh unto useless so I just had my husband drop me off. With visitors limited and an hour or so drive each way to the hospital (depending on traffic) I was on my own the entire time. He dropped me off at the door on a Tuesday and picked me up there again on a Friday. While I would have been fine with seeing my husband, all in all the lack of visitors did not bother me. If people had come I would have felt the need to chat with them and entertain them and I really didn’t feel like doing that for my whole time in the hospital. But I am getting ahead of myself. 

Pre-op started out a little dull and I almost fell asleep but then people started coming in. First among them were two hospital chaplains, a tall, thin white woman and a shorter, rounder black man. I think they are probably not told what procedure the patients are in for. They asked me if I was nervous and told me it was normal to be and then asked me how I deal with things when I am nervous. I told them I pray. I think they were surprised. They apparently sized me up at this point and decided a Lord’s Prayer would be acceptable. 

More encouraging than the chaplains was a young anesthesiologist. I think he was the resident from that department. He told me his dad had received a non-directed kidney donation and that he would take good care of me. I believed him.  

From the surgery resident, I learned one very important piece of info — that my kidney would go in a box and fly commercial to its destination but that it would have a human escort. Actually he just said escort and I assumed human. But at this point it is probably better not to ask. 

I met the main surgeon whose name was on all my lab orders and who would be sticking his hand in my abdomen. I also saw the slightly more junior surgeon again and he assured me that he had gotten a “take picture” notification on his phone that morning and wondered what it was and then remembered my surgery. By the way, if you are interested in seeing my kidney, I am happy to share the pics. I may be biased but I think it is a very picturesque little kidney. 

The last thing I remember is that the anesthesiologist said that they were going to give me something in my IV to calm me down (not that I was riled up) and that it would feel like I had just had a couple of margaritas and then  I would be wheeled, awake but calm, into surgery. I don’t normally drink margaritas but they must knock me out because that is all I remember. I do have vague memories of being wheeled into a surgery suite but I think they must have been a dream because it was a lot more like M*A*S*H than like anything in the real world (I hope). 

Step 23: Surgery

Time involved: approximately 3 hours

I can’t tell you anything about this bit. I slept through it. This does seem like a good time to mention an interesting fact I realized shortly before my surgery. In 2020 autumn began at 9:30 am on Tuesday, September 22. This means that when I was put to sleep at approximately 7:30 am it was summer, but when I woke up some three hours later it was fall. Do you remember how I said that I had wanted to donate in summer? Well, I guess I did, just barely. But my recipient didn’t get the kidney till fall. 

Step 24: The hospital stay

Time Involved: 3 days

There is a lot during this period that it is probably better not to relive. Let’s just say the first 5 to 7 days was tough. If you are considering donating a kidney, you can contact me and ask for details. Otherwise, I don’t need to share every personal detail with everyone in my life. 

But let’s start with the good. I have nothing but good things to say about the staff at BWH. I don’t think I had one bad interaction the whole time and the nurses were wonderful. On one of my walks around the hallway loop I saw on a whiteboard that my nurse was only assigned to me and one other patient which even for a homeschooler is a pretty good class size. I am particularly grateful to the night nurse who that first night kind of took charge of me and said things like “people often sleep better with support here and here” and began shoving pillows around me to make a kind of nest. Between that and the meds, I actually did manage to get some sleep.

I know hospital food gets a bad rap but it turns out if you donate an organ you get to order off the double-secret, special menu. I was told that the head of that kitchen actually showed up and yelled at the nurses for not having told me and given me this special menu from the get-go. At that point I had only eaten jello (note: the lime is better than the lemon) so it was a moot point, but I do appreciate the sentiment. The food I had, once I got the menu, was all quite good. I only wish I could go back now that I am feeling better and can eat a little more to really do it justice. I think the only thing I finished in my time there was a strawberry frappe (that’s a fancy grownup word for milkshake; I ordered the chocolate one my last lunch there and I think I did a noble job of sucking half of it down very quickly but then, unfortunately, they discharged me). 

Now for the less fun stuff. My mother who has had at least a couple of abdominal surgeries told me the first two times I got out of bed would be tough and that I just had to get through them. She was correct. The first time I just sat on the edge of the bed (which probably doesn’t really count). The second time I made it a few steps and then the nurse said I had turned white so I didn’t go any further. But eventually things did get a little easier.

There is a lot of discussion on donor forums as to what one should bring to the hospital. I don’t think I went overboard in packing but the only thing I used was my phone with its extra long charging cord. Everything else literally stayed in its bag until the last morning. I wore home the same clothes I had come in (they had only been worn a few hours on the surgery day and hardly smelled at all). Loose fitting soft pants are a must. Not just for that day but for the next few weeks at least. (Since my surgery was near the end of September, my family took to calling the next 5 or 6 weeks of my life “soft pants October” which also somehow morphed into “sleepy pants October.”)

I didn’t really need a lot of entertainment in the hospital. My level of concentration was about enough to watch local news so that is what I did. If I were into other daytime TV, I suppose I could have handled that as well. Interesting COVID note, I found out there was an outbreak in the hospital from the news. I had to look at the white board in my room to see what floor I was on and if it was one of those mentioned. 

The only non-standard (though not unusual) problem I have had thus far was some shoulder pain. I say “some shoulder pain” but this was way worse than my abdominal pain ever was. It started as nerve pain in my right shoulder. I got the same pain, but much worse, in my left shoulder as well once I was home, at about day 4 post-op. By the “same pain” I mean nerve pain in the exact same spot but in my other shoulder. A throbbing, spasming nerve pain. I share this, not to get your pity (but you can pity me if you like) but just in case someone else out there has this particular symptom, because there is an explanation and there are things that helped.  

I got various explanations for my shoulder pain from the medical staff while I was in the hospital. Putting some things together and doing some googling when I was back home, I have decided that the pain was caused by some of the laparoscopic gas they fill you up with during surgery that was trapped under my diaphragm [18]. There is a nerve (the phrenic nerve) that goes right from the diaphragm to the “shoulder tips” which was right where my pain was. Tylenol did nothing for this pain and cold only helped very minimally. Oxycodone — which I decided I hate because it makes me woozyish — helps somewhat but even that doesn’t take it all away. Heat helps considerably. But the biggest and easiest thing that helped was just to be horizontal. There is some logic to this if the gas bubble on my diaphragm theory is correct — when I was vertical, the bubble would shift and/or press up more. It seems silly but it took me a while to discover this. I knew even in the hospital that it hurt more when I got up but since, not having working abdominal muscles I was using my arms to push myself up, I thought it was the pushing with my arms that was triggering the shoulder pain. It wasn’t. It was just the fact of being up.

Step 25: Recover at home

Time involved: 3 weeks and counting

Recovery is an ongoing process. After my shoulder pain disappeared, I was looking at just normal post-surgery stuff. My incisions never bothered me much but there is cutting that goes deeper than that. Most of what I have felt is more discomfort than pain, however, with a fair degree of swelling and stiffness. There is exhaustion as well. Some of course is normal after any surgery. There is also some fatigue that comes specifically from donating a kidney as your body struggles to compensate for what is missing and to make up the lost function. 

This is probably an appropriate time to say that, while I am very bad at getting thank you notes out, I am very grateful for the meals and help we got after surgery. It is pretty amazing that everyone at our church is a good cook but it seems to be true. At the three week post-op mark now, we are nearing the end of the meals that have been provided for us and I can see my teens circling me hungrily. One of them asked me the other day if people can live without gallbladders so I think they might be contemplating harvesting more of my organs for the sake of a free meal. 

A few things that helped at home (besides the meals) — for all of these you should ask your medical provider. After kidney donation, you need to avoid NSAIDs and should ask about any medicine or supplement. Again, this is not medical advice which I am not qualified to give. It is just a list of what helped me.

  • Melatonin — I couldn’t initially get to sleep at home. I would lay down at night and it felt like I had just simply forgotten how to fall asleep. This is an aftereffect of the general anesthesia. A few nights of melatonin solved that problem pretty quickly. Of course, getting comfortable was still an issue, especially when I had the shoulder pain as well. I spent most of my days in a recliner and some of the first nights too. 
  • Probiotics — Another thing they don’t tell you is that you are given antibiotics during surgery. I highly recommend asking about probiotics for when you get home to get your system back to where it should be. 
  • Iron — There is a certain amount of fatigue that comes from the surgery itself but there might also be fatigue you can avoid. I spend my life borderline anemic anyway (I think many females do) so I asked about taking iron after surgery. Though the tubes are small, you will likely have given a fair amount of blood in the weeks before surgery, and the PA I talked to admitted that you lose some blood with the kidney too. Add in that you will probably not be eating a lot right after surgery and there are a lot of good reasons to ask about a supplement.

On the non-medical end, having a selection of pillows, heating pads, and ice packs is a huge help. Since it had become autumn during my surgery, I found that I turned to the heating pad more than the ice, simply because I would have frozen in my own house otherwise. (There is some dispute in our house as to when the right time to turn the heat on is. In my weakened state, this is not a battle I am winning this year.) There is one downside to spending one’s days in a  pile of heating pads, blankets, and pillows– pretty soon you will find yourself in a pile of heating pads, blankets, pillows, and cats. I am pretty sure this will happen even if you don’t own cats. Personally I went into this whole thing reasonably confident that I only owned two cats but every time I look there seem to be cats everywhere. [19]

Wrapping this whole thing up . . .

After 25 steps and about as many pages, you are probably ready for this thing to wind down. (I feel like anyone who has made it this far should get some sort of prize; I’d give you a kidney but I no longer have any to spare.) As I write this I am about three weeks out from surgery so obviously there is still a lot of healing to go. On the other hand, barring unforeseen consequences, the worst is over and certainly the most exciting part is. In closing, I want to remind you of what I said in the beginning which is what the proper response to this mini-book is. It is not: “Oh, wow, she did something so impressive and special.”  It is: “Huh. Maybe this kidney donation thing is doable.” Which is not to say that everyone should donate a kidney. A fair chunk of people will be excluded medically. And even of those who could donate, not everyone will be called to it. God has different things for each of us to do. But if after reading all this, a few more people consider donation, or just tuck it away in the back of their minds for future consideration, then my time here has been well spent. 

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Notes:

[1] Kidneys are particularly needed for those with blood type O because Os can donate to anyone but can only accept kidneys from other Os. The +s and -s don’t matter for kidney donation. 

[2] Since you asked, a megalodon is a giant, prehistoric shark more fierce than a T-Rex. 

[3] I am not really sure if I like this use of the word “organically.” Though my daughter and I are both carbon-based life-forms, I am not sure if there was much else organic about our conversation. In this context, it seems to just mean “naturally, without premeditation on the part of either party.” When you are sitting in the hot sun trying to sell tie-dyes, you feel pretty crunchy though. 

[4] When Death Becomes Life by Joshua D. Mezrich, MD, tells the history of transplant surgeries. It is a fascinating, well-written book but probably not for the faint-of-heart. 

[5] If you have ever been pregnant, you have probably done a glucose tolerance test and gotten to enjoy the world’s worst orange soda. Not all candidates for donation get to enjoy this milestone but I have two relatives with diabetes (one type 1 and one type 2) so I got the pleasure. Oddly, when I called the lab to schedule an appointment, I was told that no appointment was needed for the two-hour glucose test but that if they had ordered the three-hour version I would have needed an appointment. 

[6] For a book about hospitals being mazes of death, I highly recommend Connie Willis’ Passage

[7] I use “fellow” here to mean “guy, dude, person of the male persuasion.” To the best of my knowledge he is a full-fledged doctor, not a medical fellow.  

[8] As with this whole essay, this is not medical advice. I can’t give you medical advice. I am just reporting what I understood from the conversation. 

[9] That’s a joke.

[10] For the record, there is a reason they do all this screening and care about things like your blood pressure so I don’t recommend trying to get around the system but I do have every reason to think my blood pressure is normal most of the time (always is when I test it at home) and that I would have been dehydrated and stressed out that one day. 

[11] The Samaritans were a weird little quasi-Jewish sect that practiced an amalgamation of the Israelite religion and local pagan ones. They arose when strangers were settled in the region that had been the northern kingdom of Israel and wanted to worship the local gods just to be safe. It is perhaps an everlasting testament to the fictional character of the good Samaritan (he only existed in a parable, which is a made-up story used to teach a lesson, that this appellation has come to mean anyone who does a good work. It is also one of my pet peeves. A Samaritan is an adherent of a weird little historical religion from an obscure corner of the Middle East. It is not someone who does a good deed. 

[12] In case you are wondering, I don’t have syphilis. 

[13] I realize that makes no sense but I was struck by the change between “good” and “very good.” If you don’t understand the reference, you really need to go back and read Genesis 1 more closely. 

[14] The evidence is that non-directed donors have a greater capacity for empathizing with others, including people they don’t know. This is largely the point of Abigail Marsh’s book The Fear Factor (Basic Books, 2017) which discusses the range from psychopaths, who cannot connect with others, to non-directed donors. I have a lot of thoughts on this book but this is probably not the time or place for them. 

[15] Sadly, one common complaint online from donors is: “They took my kidney and had no further interest in me or my long-term health.”

[16] The Scriptures tell us that God foreknew His people; even before the world was created they were real to Him and He had decided to die on their behalf. Ephesians 1:4-5 reads: “[God] chose us in [Christ] before the foundation of the world, that we should be holy and blameless before him. In love he predestined us for adoption to himself as sons through Jesus Christ, according to the purpose of his will . . . “ (ESV).

[17] Words in the Bible are very powerful things. It is through words, not images, that God has chosen to reveal Himself to His people. Jesus Christ is called the Word of God. And it is through His written Word, the Scriptures, that God continues to speak to us. God’s Word is transformative (Hebrews 4:12; Romans 12:2). Human words, of course, will not have the same power, but as a people we are made to respond to words and stories. They have the power to hurt but also the power to transform. 

[18] This pain can happen with any laparoscopic surgery. There seems to be some debate still as to why the pain happens — whether the gas they pump into you forms an acid, whether it is too drying, or some other explanation — but the mechanism isn’t so important when you have it.  There are a number of articles which refer to this kind of pain (which makes one wonder why I didn’t get one simple explanation from the medical staff in the hospital). Here are a couple: “Shoulder Pain after Laparoscopic Surgery” and “Post-Surgical Shoulder Pain.”

[19] I feel like I should add at this point that after any surgery, walking is an important part of the recovery process and I did do my requisite amount of walking. I don’t want you to think I became a complete recliner-bound blob.