There was an op-ed in the NYT today, written by a kidney transplant recipient (Her name is Candida Moss), who has found out that after both COVID shots, she does not have any antibodies to the disease in her body.

After being vaccinated, I was given a spike protein test to see if I had immunity. When I learned I had developed no antibodies, I felt sick to my stomach: How will I persuade others to continue to be careful? How many vulnerable people don’t realize they aren’t protected?

Sigh. OK. It’s time for me to do some brief transplant talk here. This was originally a twitter thread, but now I’m expanding it because I think more people need to be aware of things.

Let’s focus on this paragraph, and then I’ll give you some background.

Until recently, immunocompromised people were excluded from studies of the mRNA vaccines for Covid-19, but data from clinical trials is beginning to emerge. A study of fully vaccinated kidney transplant patients published in April by researchers at New York- Presbyterian Hospital and Columbia University Medical Center revealed that 75 percent of kidney transplant patients studied did not develop measurable immunity after both doses of the vaccine. A second study published by Johns Hopkins University School of Medicine researchers in May found that only 54 percent of fully vaccinated organ transplant recipients studied had antibodies. The numbers are different, but both studies showed that immunocompromised people had significantly reduced responses to the mRNA vaccines.

(emphasis above is mine)

Transplants work because we have medications that suppress the immune system. That’s the basic science behind transplant. We take organs from donors and put them in recipients’ bodies. We want to get the closest match possible for the best chance of success, but even then, medications are needed to keep the recipients’ bodies from figuring out “hey! There’s something here that does not belong!”

The big thing to worry about in transplant is organ rejection. Basically, the body knows that my lungs aren’t mine. We have to trick my body constantly into accepting these lungs as my lungs. So, normally at the outset of transplant, and for the first few years, we need to have a higher dose of medication to “fool” our bodies. For example, when I first had my transplant, I was on 40 mg of prednisone. Now I am on 5 mg of predisone. That’s a big drop in terms of suppression, and that’s good. The higher your immunosuppression dose, the more likely you are to get random bugs that are floating around, because we’re tricking the system in such a huge way.

The farther out a person is from transplant, the less suppression medication you are usually on, and that makes a difference in how “aware” your own innate immune system is. Also, the farther out you are, the chance of rejection drops. Now that I’m 16 years out, we still, of course, think about rejection, but the bigger health issues are the things caused by my medications (see, my diabetes, skin cancers, etc.). It’s not so much the fear of rejection.

This plays a big part in how someone might act and what decisions they might make. We don’t know how far out Ms. Moss is, so that’s key context that is missing in this story. If she’s one year out, that’s vastly different than if she’s 16 or 20 or 25 years out.

Key takeaway: Rejection is the big scary thing in transplant world.

(Also that study she mentions for kidney recipients? It’s twenty eight people with an average age of 66. So……)

So, that brings us to COVID. Bad COVID is basically end-stage CF. That’s a problem. It’s not fun. That’s why I got the vaccine.

Lungs are the only organs that are continually exposed to the world, because, obviously, air. That doesn’t happen with hearts or kidneys or livers. They’re protected from these things. So the fact that she’s a kidney recipient immediately changes the discussion, because her risk probably isn’t as high as mine is, because of the nature of our transplants. (I’m guessing, and I’m not trying to diss her.)

So, if you had a lung transplant in the last year, WOW. I know someone who did, actually. That person’s team probably wants him on lockdown, because not only are the immunosuppression meds at their highest (usually), but also, the body itself is weak. I was very weak post transplant. I needed to work! I needed to eat and get strong! So that plays into as well and makes the risk of COVID (or anything, really) more likely and more devastating, because the body isn’t in a place to fight off anything. It’s low on resources in every way. So a person who is only a year post right now is probably living in a very small world, out of absolute necessity.

This is also what makes us different from other immunocompromised people, a fact that Ms. Moss doesn’t talk about. Remember the key takeaway? Our risk when we get sick is also rejection of a vital organ we need to survive. Our doctors have to balance treating us with also keeping our transplanted organs happy. That’s a fine line to walk, to put it mildly.

That’s not the case with other people who are immunocompromised due to cancer or pregnancy or other things. This was never mentioned, and it’s a big point.

Onto the third point: Vaccines and antibodies.

When my team first talked to us about the vaccine, they told us that they had no idea if we would get any protection. Immunocompromised people hadn’t been studied. So the fact that, according to the article, 54% of transplant recipients that have gotten the vaccine have antibodies, is not a “just” situation. That’s a huge good. That’s great! That number makes me really ecstatically happy! YAY!!!!!! Some of us—actually a majority of people studied—have protection! YES!

And then, we get into the “feeling” weeds, where the author just….sigh. Well, I’ll let you read it.

The vaccine passport on my phone is comically meaningless. Yes, I’m vaccinated, but that doesn’t actually protect me. Thankfully, I have been able to spend the pandemic working from home and shielded from danger. Like everyone else, I nurtured dreams of socializing, travel and seeing relatives I have not seen in over a year. I am tired of my apartment. I feel guilty for forcing my immediate family to continue distancing, but the mortality rates for people like me are high. I’m delighted for friends and relatives who have more freedom, but I feel stuck. I’d like to go back to February, when I thought that vaccination meant safety, or even March when I knew others would wear masks at the grocery store.

Here’s the issue. She mentions nothing about what her doctors are telling her. She might not have to continue to force her family to distance. Have they been vaccinated? My parents have been. I’m allowed to interact with them. (I was before anyway) I will see relatives next month. Yes, mortality rates for people like us are high, but that’s also one of the risks of post-transplant life in general. To live 16 years, like I have, is ground-breaking. I’m not just saying that to be make myself sound awesome, it’s true. There really are not statistics for people who are more than 10 years out.

She says she feels “stuck”, which, OK, but again, this is something she needs to talk to her doctors about. Maybe she has, I don’t know, context is missing from so much of this.

Also, “shielded from danger”? Hon. You can die in the tub, falling out of bed, or walking down the street.

The pandemic exposed society’s ageism and ableism, with many people in the beginning months arguing that only the sick and the elderly were at risk. I thought we would learn to be more thoughtful about accommodating the vulnerable. But the invitations to large gatherings that I receive, which omit any reference to safety measures or remote attendance, feel like conscious avoidance of any disparities.

Oh, good grief. Seriously? If we were more thoughtful about accommodating the vulnerable, everyone would be forced to get flu shots every year. People would stay home when they’re sick, and not send their children to school sick. Etc. Let’s stop acting like the pandemic exposed things we didn’t know about how vulnerable populations are treated. We’ve known these things forever, they are not new. She’s lucky she could work from home during the pandemic. The lack of being able to work from home and having accommodation is what made me leave my job.

She’s getting invited to things, and that’s great. If she does not feel comfortable going, she needs to say that she does not comfortable going. One of the big things you learn in post-transplant life is how to balance living with risk acceptance/avoidance. There are things I try not to do now. I avoid indoor malls at Christmastime and in the winter. I try not to fly in flu season. I’ve always been very conscientious (or nuts) about wiping down every inch of my space on an airplane, drinking water copiously, and traveling with masks in case someone is sick on the plane. If it’s really hot, and the UV index is high, then no, I don’t go to the Harry Potter fair with my friends. I stay home. It’s a balance!

I was hoping we’d get context and more fact-based stuff here, but we didn’t. We got a lot of feelings and that’s fine, because feelings are valid, but at the same time, there’s the balance here of risk that all transplant recipients have to learn to balance, because either extreme way is pointing toward insanity and bad consequences. Her talk about danger and risk of death seems to be overwhelming to her, which is concerning. Yes, we shouldn’t act foolish, but at the same time, risk is inherent in daily living. Each person has to decide for herself what her own acceptable level of risk is, and go from there.