Paul's Internet Landfill/ 2022/ Kidney Donation

Kidney Donation

If all had gone well I would have spent this February recovering from surgery. All did not go well, but I will document this journey anyways.

The TL;DR is that I attempted to donate a kidney anonymously. In the end I was rejected, and I did not enjoy the process, but I feel that if you are healthy and open to donating a kidney you should consider it.

Backstory

I have been donating blood for decades. My reasons for doing so are not particularly commendable, but it has become a habit. I am aware that sooner or later I will become ineligible to give blood.

At one point Canadian Blood Services was promoting a stem cell registry. I wanted to participate but opted not to. One reason was that if I ever had a male sexual partner then (as I understood it at the time) I would have been banned for life from donating, and it would have been really disheartening for a potential match to be denied stem cells because the potential donor was inelgible. The second reason is that Canadian Blood Services needed a reliable lifetime mechanism to contact me, which I could not offer at the time. Since then I have aged out of this program (the cutoff is age 35), so it is no longer an option. I am pretty unhappy that I did not participate.

The initiating event to get me thinking about donating a kidney was a podcast on the CBC. It was a story about a woman who decided to donate a kidney anonymously, and who felt that she had enough bodily autonomy to do so without informing her husband. I cannot find that podcast now, although there are many many other stories about anonymous donors on the CBC website (example 1, example 2, example 3).

I suspected I had two kidneys. At the time I thought they were in reasonable shape: I am fat, but I exercise, do not drink, and am not yet diabetic (knock on wood). I thought this was something to put on my todo list, but I did not act until after the pandemic started. I was out of work and so had some time to spare. I knew I did not have many years before I developed diabetes. If I was going to donate a kidney, I would have to act soon.

Getting Started

Figuring out how to get started with kidney donation was actually fairly frustrating. I first tried the Kidney Foundation of Canada. They told me to contact my local hospital. So I called Grand River Hospital (which has a nephrology unit) and got no response. Then I gave up for a while.

The secret was not The Kidney Foundation, but Canadian Blood Services. They have a listing of hospitals that do kidney transplants. From that page I saw my options were Hamilton or Toronto. I chose the St Michael's Hospital program because they had an email address listed.

It turns out that most kidney donations are "directed" -- a donor is donating to a particular recipient. My donation would have been an anonymous undirected donation -- I did not care much who got the kidney so long as it would go to a good home.

I started this process in January 2021. In the best case I would have been done by June 2021. Because I was working in fall 2021, I would have been scheduled for surgery in February 2022. I will explain more about these timelines later.

After emailing the St Michael's donation team I received a large number of forms to fill out. There was a questionnaire that asked about my medical history, whether I could afford to take time off, whether I had a support network, drug use, sexual history, family history, and so on. There was another questionnaire about my feelings concerning kidney donation. There was a consent form to communicate via email. Finally there was a referral form to the program.

In filling these forms I disclosed a number of things that (in retrospect) jeopardized my donation:

I also feel that the medical staff were mystified about my motivations for donating.

I believe I was scheduled with an interview with a social worker before I started any physical testing. She also interrogated me about my reasons for donating, and expressed concerns about my support networks for recovery. I told her that if worst came to worst I would hire a personal support worker to attend to me while I was recovering from surgery.

Tests, Tests, Tests

The next phase of donation consisted of a large number of tests. The initial tests could be done in Kitchener, but I was told that I would have to travel to Toronto for the rest. I expressed great hesitation at this. For one thing we were in a pandemic, and I did not particularly want to travel on GO buses. For another thing this would be expensive and disruptive. I told the team I preferred to do as many tests as I could in Kitchener, and that I would prefer to minimize the number of trips I made to Toronto. I feel they were unhappy about this but they tried to comply with my requests.

The first set of tests were done via LifeLabs in Kitchener:

There were a number of mixups with these tests. Often the LifeLabs people were unhappy with the requisition forms that St Michael's provided.

There were also long delays between sets of tests. I tried to be prompt about telling my contact at St Mike's when I had completed the tests, but often there were weeks of delay between sets of tests.

In addition to the LifeLabs work, I had to get an ultrasound of my kidney done, and (if I remember correctly) some X-rays of my chest. LifeLabs does not do this. The main ultrasound franchise around here is called True North Imaging, but when I called they had waitlists of weeks and weeks. Fortunately, I found a lab called Cambridge Diagnostic Imaging which was able to get my ultrasounds and X-rays done quickly. Unfortunately this lab is in Cambridge on Hespeler Road, so the bike ride is not ideal.

By this time it was April 2021. I was scheduled to travel to Toronto for a CT scan, but disaster struck: my anxiety decided that I had COVID, so I got tested and then had to isolate and defer the scan. It was June by the time I was rescheduled, which was A Problem for reasons I will describe in a future section.

In addition to the CT scan I was booked for an in-person interview with a member of the transplant team. They also ended up doing more bloodwork on this visit, including DNA analysis (!?)

I was moderately irritated that they wanted a CT scan, since they had already done ultrasound imaging and established that indeed had two kidneys. Nonetheless I went. I wanted to take my bicycle, and you cannot take your bicycle on the GO train during rush hour (which includes all trips from Kitchener) so I opted for the GO bus. This was stressful because I had to make a connection someplace in the outskirts of Mississauga, and I got thoroughly confused about where I was supposed to catch the connecting bus, and I missed it. Nonetheless I managed to get to the hospital in time.

The CT scan was interesting. They slid me in and out of a big plastic donut with lights and hieroglyphic symbols. The machine told me to breathe and to hold my breath. I cannot imagine how many hundreds of dollars this test cost, but given that I was not seriously ill, it was reasonably fun. What wasn't fun was the waiting room. I was really really anxious having to stay in a waiting room with a lot of other people during COVID.

In addition to the CT scan I had another interview with a nurse practitioner on the medical team. She was not the surgeon (I never met the surgeon) but she interrogated me further about why I was donating, and gave me a few hints about the next steps.

After the CT scan I was scheduled for an interview with a psychiatrist. Fortunately, this was to be held over Zoom. Unfortunately, I had no clear understanding (and no clear answers) why a psychiatrist was getting involved, and why the wise minds at St Michael's decided it was worth hundreds of dollars of taxpayer funds to have me do a third psychological assessment. I understood fully that I have a broken brain, but I was donating my kidney, not my brain. Nonetheless, I did the interview and convinced the psychiatrist that I could continue with the donation process. Honestly, getting the psychiatrist involved made me angry on several fronts. Firstly, it seemed to me that they were looking for reasons to deny my donation without telling me they were trying to deny my donation. Secondly, I clearly need psychiatric help, but as a Poor it is not accessible to me. Yet it is perfectly okay for hospitals to have expensive psychiatrists on staff to screen out anonymous kidney donors?

After the psychiatrist test I had to get a few more tests done in Kitchener:

The CT scan determined that I did indeed have two kidneys, but that one was smaller than the other. Apparently this was a big deal. So the surgeon called me back to Toronto for yet another expensive test -- a "Renal GFR", which Uncle Wikipedia says stands for "Renal Glumerular Filtration Rate". Basically, they wanted to see how quickly my kidneys filtered water. They wanted to do this by injecting me with radioactive dye and then scanning my kidneys. I was even less thrilled with this than with the CT scan, but I complied. By this time it was August. I was pushing hard on the donation team to get all their tests done by August because I was going to teach in September, and then my free time was going to vanish.

I went to Toronto for the GFR scan, and that is where I screwed up. I did not drink water on the morning of this test, and I should have. They gave me a big glass of water to drink for the test, but I guess my kidneys are slow or were not primed sufficiently, because they did not filter a lot of water while I was in the scanner. From this test the team concluded that my kidneys were not fast enough, and they rejected me as a donor.

Timelines

If I had been approved for surgery I would have had two more trips to Toronto. One would have been a week before the surgery and another would have been for the surgery itself.

There are two kinds of surgery. The preferred surgery (laproscopic?) would involve cutting a small slit in my back and extracting the kidney that way. The other option would be to open my abdomen and fish around for the organ. The laproscopic option would have had a faster recovery time, but I was told to expect a six to eight week recovery period. I would have spent a few days in hospital and then be sent home to recover.

At St Michael's there were three "matching periods" for undirected donors: June, October, and February. The initial hope was that I would be done all the testing in order to have surgery in June, but my COVID scare put the kibosh to that. The next option would have been October, but I was teaching in October and could not afford 6-8 weeks off. Thus we decided that (had I been eligible) I would go under the knife in February.

I was expecting the process to be much faster than it took. I spent at least six months doing tests and waiting for test results. I think that a year is a reasonable amount of time to budget for this.

Aftermath

I received a final email telling me I was rejected, a "thanks for your altruism!", and that was it.

Despite the three rounds of psychological tests while they were considering me as a donor (which included lots of questions like "how would you feel if your kidney was not able to be used?") there was zero followup care after I was rejected. This is evidence to me that the team did not care one whit for my wellbeing. They just wanted to cover their rear-ends against liability.

I had a lot of tests done during this process, and I wanted a copy of my medical records. Apparently it is possible to obtain medical records from St Michael's, so once teaching was done I initiated that process. It is still ongoing. They want me to pay money for the medical data, but they have not told me how much money to pay yet. I am hoping I can get this resolved in the next month or two. I would like a copy of my records for personal reference, and to see if there are any non-redacted clues about why they chose the tests they did.

Costs

When I initiated the process I was told that there was some financial support for kidney donors. I did not really care about this, but that is for the best -- the support only applies to the trip when you go under the knife. None of the pre-testing travel costs are covered, and I think none of the post-operative costs (eg the cost of hiring a personal support worker) would have been covered.

In total I spent about $70 in travel costs to and from Toronto. Obviously if I had had the surgery I would have had to pay more. I also had to run around getting tests done.

Risks

There are definitely risks to the surgery, but the worst outcomes are not the probable ones. Obviously I did not want to be crippled for life because I attempted to donate a kidney, but the chances for this were fairly low. A more important risk would be that my remaining kidney might fail. Overall this risk was also low but in my case they decided that my kidneys were so slow that I needed both of them.

In addition to the physical risks there are some emotional risks. I did not have strong feelings about the recipient contacting me. I strongly did not want to be seen as some kind of martyr for giving a kidney, and I did not want to be put on a pedestal for doing so. (This is one reason I kept this process to myself as I was going through it.) But there is always the risk that either I would feel abandoned if the recipient did not contact me, or overwhelmed if that recipient had wanted to be in touch.

Because I do not have a strong support network, the recovery risks were real. It was not even clear how I would get back from Toronto after the surgery. I expect St Michael's would have wanted somebody to drive me back, but I did not want to do that at all. My hope would have been to take a cab to the GO station, then take the GO bus home, then take a cab to my house, but I bet they would not have liked this plan. Even negotiating a personal support worker in the days of COVID would have been tough.

I fell off my bike in January and my shoulder is still screwed up. Even dealing with this minor inconvenience has demonstrated that recovering from injury is no joke.

Should I have been rejected? I don't know. It may well be the case that I have kidneys that are too slow to be useful. I have never peed a lot, but I always thought that was because I don't drink all that much water during the day.

Systems and Bureaucracy

Man, it was frustrating dealing with bureaucracy. In addition to the psychological screenings being meaningless, I had all kinds of forms to deal with, and it was a continual fight to keep this process moving.

I had both good and bad experiences in the hospital itself. On the positive side, St Michael's has coloured lines on the floor that indicate how you get to different departments. That really helped. On the other hand, I got lost trying to find the GFR testing area and that sucked.

Mostly I did not need to show paperwork to explain why I was in the hospital for particular tests. I guess that is good?

When doing the GFR I got confused several times about what they were doing and what my next steps were supposed to be. At one point they stuck an IV spout in my arm and did not tell me why. At another point I was sitting in the hallway and confused about what I was supposed to do next.

Hospital IT infrastructure is terrifying. In 2021 I saw computers running Windows 7, which has been out of suppport for years. That is quite frightening. It is not a surprise to me that medical centres often get hit hard by ransomware.

I am still irritated at the number of tests they wanted from me, and how much they must have cost the taxpayer. I think a bunch of these tests were not necessary and were done for liability purposes.

Many kidney donors do not have to go through all these tests. Instead they ride motorcycles and end up donating their kidneys (and many other organs) that way. As I was going through test after test, I kept reflecting on this. If I got into a motorcycle and had a fatal accident, then I bet I would not have to go through months and months of tests before they accepted my organs for transplant. Furthermore, I am guessing many of those organs (even my slow kidneys) would have been "good enough" to improve the quality of life for many sick people. But because I was a living donor, I was rejected.

Should You Bother?

Although my experience had its frustrations, and although I got rejected, I think many more people should consider kidney donation (just as I think many more people should consider blood donation). We currently have artifical kidneys of a sort. They are called dialysis machines, and they suck. We are now into the techno-bio-medical revolution (I feel the mRNA vaccines were a turning point here) and within decades we might have artifical kidneys that work well. But for now we don't, and for now there are hundreds and hundreds of people waiting for kidney donations.

Furthermore, we are in for an organ donation crisis. Our friend long-COVID is associated with organ failure, so you should expect a lot of demand for kidneys on top of the existing tidal wave of diabetes-related organ failures. If relatively healthy people can stem that tide at relatively low risk to themselves, I feel they should do so.

This is my paranoia speaking, but I strongly feel that middle-class donors with strong support networks are vastly preferred to people like me. It is no surprise that a Poor has a harder time navigating bureaucratic systems than respectable people, but I was not expecting it to be this much of a factor. So if you are not a Poor then maybe you should be more inclined to consider this. On the other hand, one of the reasons you are not a Poor is likely because you can hold down a steady job, in which case traipsing off to Toronto and taking 6-8 weeks of recovery time is much more of an issue for you.

My secret agenda in writing this blog post was to document the process in the hopes that readers would feel more comfortable (and less hesitant) in considering it. I do not think it is an easy decision, and I do not think anybody should be compelled to give organs against their will, but I do think it is something to consider.