COVID, antibodies, and transplant life

Vermeer, “The milkmaid”

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.

Prudence, Acceptable Risk, and Medicine

I’ve been debating this post for awhile, but I think the time has come for me to just write and get on with it. Also, this is gonna be long so settle in.

This is not about the COVID vaccine, really. The COVID vaccine, to me, is just the tip of the iceberg when it comes to the deeper problem, which is that we, as a people, do not know how to make prudent choices, or define acceptable risk for ourselves and our families.

This will be in two parts: This one, and then a piece about the moral/religious side of things.

(Some of these stories y’all have heard before, but they’re illustrative, so they’re coming up again.)

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The first thing we need to talk about is the fact that hospitals are busy every single day of the world.

With COVID, people seemed to be shocked that people were living and dying in hospitals every day. People were in ICUs! (insert running around screaming gif here)

Folks. Yes. People are in ICUs every day. People are in hospitals every day. Hospitals, like all other things, have cycles—there were times when I was on the floor and it was pretty empty, and there were times where almost every single room was full. But yes, there are people in ICUs every day. There are nurses and doctors who work specifically in ICUs. These folks have jobs because ICU specialists are needed on a regular basis. (1)

I understand that many of you do not have the intimacy with hospitals that I have. But a lot of insanity was caused by the breathless reporting about ICU statistics and “people are on ventilators!”

Folks, I was on a ventilator for almost two weeks. Yes. It happens. Some people are one them for a lot longer. But this is not new. This is medicine. This is life. This is—often—death. People die in hospitals every day. In fact, whenever I drive by the former Resort, I think about that, and I pray for the people inside. It’s not just COVID that kills people, although you’d be hard pressed not to think that these days.

(We’ll come back to media coverage in a bit.)

This leads me to my second point, which is that….

Every single medical intervention has risks associated with it.

This includes the Tylenol you take for your headache, the Motrin for your PMS cramps, as well as interventions like being on a ventilator. Every single thing you put in your body can cause an adverse reaction, as anyone who has ever had food poisoning knows.

Life has risks. Driving to work has risks. Getting out of bed is a risk! Taking a shower is a risk! Everyday, we do something that might cause our demise, and most of the time we’re OK with that, because, life. (Drinking too much water has risks!) But when it comes to medicine, all of sudden we lose the sense of acceptable risk.

An example from my life: I lost my hearing because of ototoxic meds (Meds that are toxic to the ear’s hair cells). The choice was, destroy lung infections and stay alive, or not destroy lung infections and hasten death, but then have my hearing be fine. Now, at the time these medicines began to be given to me IV, we didn’t know about the ototoxic nature of them, and now doctors are more sensitive to that. (Yes, once again I pave the way for others!) But all that being said, the choice is—do you want to fight infection, or have great hearing. In my case, it was fight infection—even after my hearing had begun to deteriorate. (2)

Now, the other thing to do, if we know that certain meds or treatments are not good for us (or just cause bad outcomes) is to ask if there’s anything else that can be substituted. I have also done this, because there are some meds that just mess up my body. I have a gimpy right knee now because I walked too far on it when I was on a particular med. So now when I have a sinus infection we use something else, but it has the same risks associated with it, and now I’m just insanely careful when I’m on it (like, I sit on the couch for two weeks careful). But to not treat the sinus infection could—and probably would—lead to lots of other issues down the road, requiring stronger meds, and possible surgeries and hospital stays. no fun thank you.

When the idea of transplant first came up, I was scared at the idea of such a big surgery because I’d never had surgery before. My transplant ended up being my third surgery ever. (3) A lot can go wrong during surgery. I could’ve rejected my lungs immediately. I could’ve died on the table. But at the same time, the only way I was going to survive was to get the surgery (and this was assuming a donor was found).

So, there were risks to transplant, and there were risks to life without it. I made the choice to accept the risks and go forward. Not everyone does that. It’s their choice.

But with transplant comes other risks, mainly the one that I have a compromised immune system and am more susceptible to things (like, um, COVID!). But even within that, we have to look at choices.

Some people post transplant are afraid to open their windows if the grass is being cut. (I’m not kidding) They never go back to work because they’re afraid of infection. Etc. etc. I was never like that, because the point of a transplant is to live your life, while not being stupid (like, tanning—big no no for us, or drinking a lot).

What I’m seeing with the COVID vaccine is people saying, “But there are side effects!”

Yes. There are. They may happen to you. This is the case for everything. single. thing. Read a box of Tylenol some time. Heck, ladies, check a box of tampons—see all the Toxic Shock warnings on them? Yeah. Everything has side effects. Too much sun? You burn. Drink too much? Hangover. Etc. It’s the circle of life. When people just say SIDE EFFECTS! it doesn’t resonate, and it doesn’t come across as a good argument because everything does. (4)

For example: anti-emetics (aka, anti-nausea drugs). One of the most popular anti-nausea drugs is Zofran. Lots of people like it. It’s great. It is not great for me because it makes me throw up; ie, it causes the exact thing it’s supposed to prevent. This also happens with my mom and my sister. So we cannot take zofran.

But that doesn’t mean that I go around saying Zofran is terrible no one should take it there are SIDE EFFECTS!

Zofran is bad for me, but apparently it is great for many other people.

Now, yes, you might get the vaccine, and you might have side effects. It may even be prudent for many people, who are not as an especially high risk of COVID, to delay taking the vaccine. I can see that.

But to say a la Chicken Little that you won’t take it because SIDE EFECTS, and that’s your only argument, is not…a great one. If you say, “I won't take it right now because I might get pregnant and we aren’t sure of the side effects of the medication on pregnancies,” that’s prudent and valid. But if you just say “side effects!!!!!!!!!!!” it doesn’t come across as a reasoned argument.

Sometimes side effects are just going to happen as a part of the acceptance of risk thing. See, losing my hearing. See, chemo side effects. See, “I’m on prednisone for the rest of my life because I need to be and that leads to many things that are not great but I’d rather be alive.” For me, getting the COVID vaccine made sense because if I get COVID, that’s not good at all.

(Now, obviously, sometimes a side effect becomes not a side effect—like thalidomide in pregnancy—and it becomes a “feature not a bug”. That’s completely different than what I’m talking about here. And even that drug has good uses! Just not in pregnant people!)

For you, it might make sense not to get the COVID vaccine, or any other vaccine (like my sister can’t get the regular flu vaccine because she’s allergic to eggs). And that’s fine. But what’s happened is that everything surrounding COVID has become political. So we’re not really working from a clear choice here—we’re working from one that’s clouded by politics and all sorts of other things.

And this is what is lost: the idea that we can make prudent, acceptable risk choices for ourselves without being screamed at or told that we’re being idiots or saying that others are idiots for doing x, y, or z.

I make acceptable risk choices all the time, without even thinking about it, because after 16 years of transplant life, I know. That includes hugging my parents even before I got vaccinated, because hugs are good. (And yes, my parents mostly stayed at home before getting vaccinated—dad works from home). I’ve spent time with my friends in their houses! Because my friends know that if they’re sick, they shouldn’t invite me over, COVID or no COVID!

I have friends that don’t get flu shots. So in the winter, I tell them that if they’re sick, I will not be around them. It’s pretty simple. I don’t yell at them. I just state that if they’re sick, we’re not going to be hanging out. This is a choice they have made, and in turn, it affects a choice that I make. We both do risk assessment for ourselves.

But for some reasons we can’t do that with COVID.

People look at COVID and they see the death tolls and the case numbers every day and they think that it’s the worst thing ever. But there’s no context to this. It’s like if all you did was watch the news, you’d think that we’re all going to be eaten by sharks, or shot up outside the gas station, or kidnapped, or die in a plane crash. This is because the news reports the newsworthy, which is not, you know “1,000,000 in the metro area got home safely from work today!”

(NOTE: this is not to diminish the death toll from COVID. Most definitely not.)

But at the same time, with COVID especially, it’s giving us a twisted picture. We’re seeing “a patient left the hospital after a month today and everyone clapped!” “A person was on a ventilator for two weeks and came off of it and went home!”

This happens every day and it ties back to point one. Yes, it’s a great day to get the ventilator out, trust me. :) It’s a great day to go home after a month long hospitalization, of which I have had a few, because, you want to go home and take a real bath! (And, yes, I was also on the local news after my transplant because I was the first one at my center. You can actually find this on Youtube. No, I will not link to it. :))

But when that stuff is being covered daily, it gives the impression that this is the rarity, and it’s not, if you look at case numbers versus deaths. (Again, see note above.) Most people who get it will go home, or not be hospitalized at all. That doesn’t mean that the losses aren’t sad, because they are. But it does mean that by this sort of coverage, we’re skewing people’s perceptions of real risk. Again, it would be like if the news were doing stories about a person who came home from work safely every night for a week. It would make us think, gee, it must be really dangerous to drive to and from work!

You can only make an acceptable risk evaluation when you have the information in front of you without '“passion or prejudice”, as someone once said in a movie.

And you also have to trust your doctors. This is the final point:

a lot of people do not trust their doctors or the medical establishment.

I, for one, do trust them because my life depends on it. The very few doctors I have had in my life that I did not trust were overruled, thankfully, by doctors I did trust—or I had a come to Jesus meeting with them and said, hey look. (Or I went behind their backs and got information from the Pulmonology department, who is the apex doctor in my situation). I’ve had shitty doctors. My parents can tell you all the stories of the shitty nurses and doctors we’ve encountered.

But my “team”—my transplant pulmonologist, my transplant nurses, and etc.—I trust inherently. I’ve had the same therapist since I was 17—that’s 22 years! With these folks, I can get good information and decide what to do next.

If you do not trust your doctors, then…you’re sort of screwed, honestly. You need to find one you do trust, who also isn’t a charlatan who just tells you whatever you want to hear, because that’s not useful either. (ie, one who says that you can treat T1 diabetes with essential oils—no, you really can’t.)

Without trustworthy people, you can’t make good decisions because you don’t have all the information.

I don’t think that COVID is helping us trust the medical establishment more, as a whole, because we’re getting crazy messaging from the CDC and others in government that seem to contradict themselves many times a day. But at the same time, it’s a little bit like Congressional popularity: most of the time, people have a really low opinion of Congress as a whole, but they love their local guy.

We need to “love” a local doctor. We need to find medical people we trust, and can help us make appropriate decisions for our health and the health of our families. That’s one reason my parents got the COVID vaccine—because of me!

People die every day, COVID or not—and that you should realize that (memento mori, folks!) and use it as a catalyst to live your one life well. You are going to die of something. Let that knowledge encourage you to live well, make good decisions, and be prudent.

Footnotes:

(1) Yes, I’m aware that one of the big things at the beginning of COVID was worries about hospitals being overwhelmed. It was probably prudent to have shut downs in that time period, when we didn't have the information we have now, and when the risk of hospital overwhelm was real—and happening in some places. However, my point here is that there was breathless coverage of the fact that hospitals have full ICUs or have people on ventilators, which happens every single day, everywhere in the world. There was a clear exhibition of the fact that most people do not understand how hospitals actually work, and that people go in and out of them all the time without any fanfare.

(2) This is not a given. Anna Pavlova, the famous ballerina, contracted pneumonia, and was given a choice to have an operation that would remove her ability to dance, or die. She chose death, saying “If I can’t dance, I’d rather be dead.” She died of pleurisy a few days before her fiftieth birthday.

(3) The first one was a combo sinus clean-out and wisdom teeth removal, and the second was to place my port.

(4) Same thing happens when people toss around the words “toxins” or “chemicals” to just refer to every day stuff. There are chemicals in every single thing we eat, drink, inhale, and are. We are made up of chemicals. Same with “toxins”. Water can be toxic if you have too much of it.