Medicine, Accommodation, and Rudeness

“October Day”, Jean Charles Cazin, oil on canvas

This is sort of a hodgepodge of medical things that have been bouncing around in my brain, that I wanted to share with you. But it seems connected to me, somehow.

Thought 1: Needing Medication Isn’t A Bad Thing

Not everything, alas, can be fixed by diet, by getting more sleep, or by exercising, or praying more. Sometimes people need actual medical treatment, and that can include medication. This is not a failure, and this doesn’t make you a bad person. I feel like we especially feel like taking medication for a mental health condition is somehow shameful. It is not.

Connected to that is that medications have side effects. A lot of people treat this as a reason to avoid medications at all costs. However, that’s not feasible. At some point in your life, you’re going to need medication, whether it’s Tylenol for your headache or chemo for cancer.

Side effects are to be weighed by the overall good of the medication. For example: Prednisone has a ton of side effects. But it also keeps me alive. So, me staying alive outweighs the fact that it messes with my body’s ability to process glucose, that it causes weight gain, and etc. (However it also keeps my voice in great shape and my joints happy, so I feel like I’m winning here!)

Insulin can also cause side effects but without it, I will be in bad shape.

Everything has potential side effects, from water to the latest wonder drug.

Now sometimes, side effects make it not worth it to continue a medication. For instance, my body cannot tolerate statins, and when I took them, they didn’t impact my cholesterol anyway. So it wasn’t worth me taking the meds and dealing with the side effects for something that wasn’t doing its job!

So if you need medication, that’s OK. Be sure to talk to your doctor about the side effects, if you experience any, and if that makes taking the medicine intolerable.

But to say that medication shouldn’t be taken because it has side effects is…. silly. They’re something to consider obviously. But it’s not a blanket statement you can make.

You have to educate yourself and weigh the pros and cons.

Two: The Question of Accommodation

Recently there’s been a lot of talk about this due to the Fetterman interview (if you’re not familiar with it—Pennsylvania senate candidate John Fetterman (D) had a stroke earlier this year. In an interview with NBC news, he required captioning software so that he could understand the questions the journalist was asking, due to a sensory processing problem due to the stroke.) As such, there’s been a lot of commentary in the social media world about whether or not the reporter would’ve commented on his abilities (or disabilities) if, say, he’d been wearing glasses or been in a wheelchair—or if he was deaf.

Now, I have a little experience in this area. So I have thoughts—obviously.

First off, the only accommodation that most people seem to have no issue with is a person wearing glasses or contacts. It’s so common that everyone just accepts it as a thing and no one says anything. (However, that’s not true when it comes to things like large-print books, menus, signs, etc.)

This isn’t true for anything else. Hearing aids are often rejected because people don’t want to look “old” or like they’re impaired in any way. Only about one-third of people with hearing loss wear hearing aids. Insurance doesn’t cover hearing aids like it covers glasses, soething that I think is ridiculous (and is somewhat ameliorated by the fact that now you can get them over the counter). But hearing loss is also connected to dementia and Parkinson’s disease if it’s not corrected. There are lots of reasons to wear a hearing aid—but a lot of people don’t.

During COVID, a lot of us hearing impaired people were totally lost when communicating, because of masks. I still can’t go to a medical appointment and not wear a mask, which means I am often lost when it comes to what my doctor is saying! But there isn’t any accommodation. This extends to things like movies and TV, where not everything is captioned (or captioned correctly), to getting pushback when I make the argument for microphones and telecoil systems in church because it’s not…aesthetically pleasing.

Many public places aren’t accessible to a wheelchair uses, or someone who is on crutches or uses a walker or canes, because there’s no switch plate on the doors.

Accommodation is limited. How often do you see a braille menu, for example? How many places don’t have a telecoil system to allow hearing aid and cochlear implant users to understand things better?

But when these are asked for, they’re brushed off as “too expensive” or “impractical”.

So, the fact that Fetterman used captions for his interview isn’t really an issue. When I’ve done radio interviews I ask for the questions ahead of time so I can get an idea of what I’ll be asked. Most places will send me a list of questions that will be asked—sometimes more than we actually answer in the interview!

The issue here, in my opinion, is the difference between a physical disability and a cognitive disability. Wearing contacts and a cochlear implant don’t impede my cognitive functioning. My brain is just fine. Surely no one would say that Stephen Hawking was cognitively impaired! But there is a difference, and most people don’t get that (the same as not understanding that there are people in ICUs every day of the year).

The idea that people don’t make assumptions about people with disabilities isn’t true. I’ve had people talk to my parents instead of me when I’m in the room. When I had my new port put in, one of the nurses asked Dad something about me—I was “her” in this discussion—when she could have asked me, and if I didn’t understand her, Dad would’ve told me what she said. People talk around you but not to you. It happens all the time, to just about everyone who has something “wrong” with them that doesn’t involve wearing glasses.

Is Fetterman capable to serve in the Senate? I don’t know. That’s for the voters of Pennsylvania to decide. The answer might be clearer if updated, detailed medical records or statements were released. I do hope, however, that we can have some real conversations about disability, different kinds of disability, and accommodation, because we don’t have them as a society, and we need to.

But we also need to understand, as disabled people, that there are things we can’t do. I, for example, couldn’t do a job that included phone work. I’d be lost! I will never be able to climb Mt. Everest! That’s not “dissing” myself. It’s stating things that are true.

The discussion around disability is complex and fraught, but we need to have it.

Three: RUDENESS!

People, never comment on what someone is eating, OK?

There is a common misconception about diabetics that we can’t ever eat carbohydrates or sugar.

That is totally wrong. We can, nay, we must, at certain points, have carbs! If I didn’t give my body carbohydrates on a daily basis, it would get very angry with me. There are times when I must have them or I will faint, or go into a coma! Or DIE. (NOT KIDDING)

So there are times when we must have carbohydrates, be that juice, or candy, or cake, or pizza.

We can also have them just as a matter of course—we have to dose for it with insulin, like we do everything else. I eat ice cream and cake and cookies. I’m allowed to have them (like everyone else, in moderation!).

Sometimes my body decides we must have sugar right now, and that’s in church. It’s not great, but it happens. It does not break the Eucharistic fast. It isn’t disrespectful to the Lord. I have sugar packets, Skittles, and Sour Patch Kids in my purse for these occasions, as well as hard candies.

So if you see someone that you know is diabetic eating candy, or drinking juice, or having a brownie, don’t assume that she can’t have it, because she can.

Sometimes I have had to ask people to get me juice if I’m having a low and I’m still dropping, because I don’t trust my hands to not spill it. In that case, people get it for me, I drink the juice, and life continues.

But please don’t ask us if “we can have” a cookie or candy. We can. And we might need to have it immediately!

Thus endeth the medical lesson!

Travel Tips: How I Travel With All My Medication and Medical Stuff!

I don’t leave home without my pink InPen, obviously. :)

A lot of people assume I am a “bad packer” because I always have to check a bag—I can’t do any trip with just carry-ons. That’s not because I bring a lot of stuff for fun—it’s because I have so much medical stuff to pack! Traveling is easier now that it was pre-transplant because I don’t have to bring machines with me, like my aerosol machine and nebulizers, and all the parts that go with that. But I still have quite a few things that I have to take with me, so I thought I’d give you my tips and strategies in case you ever need them.

The first thing is my big bag of meds. I probably started doing this about 10 years ago. I keep all of my medications (except my vitamins) in a large zip top bag. (I use one of these). That way I can just grab the bag and go (this was actually done in case of random hospital admits. My parents would be able to just grab one bag and take it to the hospital without wondering if something was left behind.) When I travel, I do put my supplements and vitamins in here, as long as they fit. If the bottles don’t fit, I just put them in plastic bags. The reason I take the bottles along is in case I need a refill or something happens (always be prepared!), I have the pharmacy bottle and people can see exactly what I take. It’s also good in case I get stuck somewhere longer than I had planned; this way I have all my meds with me at all times.

Once I’m at my destination, I don’t have to carry my meds around with me, because they’re morning and evening meds, so I just take them with breakfast and whenever before bedtime is at my destination. (In Denver, I took them whenever we got back from my sister’s house.)

The big bag of meds on my insanely covered kitchen table!

Second is my insulin and other diabetes things.

I always carry in my purse my glucose meter (just in case my continuous glucose monitor has a hiccup) ,as well as backup insulin (both types), pen needles, and my emergency glucagon kit (this is “emergency glucose”, basically.) I keep all of these things in one of these pouches and that pouch always lives in my purse. I also try to remember to keep candy in this pouch in case I need it. I make sure my glucose monitor has lancets and plenty of (non-expired!) test strips. I will also keep two cartridges of short acting insulin for my inPen in there when I travel, so if I had to reload it when I’m out I can do it easily. (The inPen is the pink item in the top picture.)

Here’s what goes in the blue pouch: Pen needles, backup insulins, emergency glucose (in the red case) and my glucose meter. There are more pen needles inside.

For traveling, I have to bring more insulin. I take two kinds: short acting (right before meals) and “intermediate acting” that lasts for about 10-12 hours. These live in the refrigerator until I need them. When I travel, I take the supply I need and put them in one of these pouches* (do you see a trend here with pouches?) These pouches are great because you don’t need ice or ice packs! They work with cold water and keep insulin cold for up to 45 hours. These are fabulous and they come in tons of sizes!

So what I do is prep the pouch the night before and then stick my insulin in there. I pack waaaayyyy too much insulin—I’m getting better about that!—but I’d rather have too much than not enough. It stays in a refrigerator once I get to my destination (if you don’t have a fridge, you can use the pouch—there are instructions for continual cooling included) and then I prep the pouch again the night before I leave. When I get home, the insulin that I took with me is first in line to get used at home, so that way there’s no issues with waste or things not being cold. (My insulin can be used at room temperature as well, as in, it’s not “bad” if it’s at room temperature. I just use it first. But not all types are like this, so check yours!)

The other things I pack are: keto urine test strips, and a backup continuous glucose monitor, in case the one I’m wearing comes loose or gets accidentally removed. I also pack alcohol wipes. I put the monitor and the alcohol wipes in their own plastic bag and hopefully I won’t need to use this, but better safe than sorry!

The third thing I pack is candy or something that will raise my blood glucose if I need it. This is usually candy or a non-diet drink (like regular Gatorade that I’ll pick up at the airport if I’m flying). If I’m staying with someone I usually ask them to get me regular orange juice just in case I need it. (Or really any kind of juice, orange juice is my current favorite.) For the trip to Denver I put a few boxes of Sour Patch Kids in my luggage and in my carry on backpack, and picked up some additional candy and Gatorade at the airport. (This is also useful for taking my meds, since some of them are really nasty if taken with plain water! Steroid, looking at you.)

You can see, this is quite a bit of stuff; it all goes in my carry-on, which also holds my makeup and anything else I don’t want to risk being lost (like jewelry) and my chargers, which I need for my phone, but also my cochlear implant charger. My extra CI battery goes in my eyeglasses case, which is also in my carryon, as well as my contacts. (I have two CI batteries; one that is the backup and one that’s being used. I try to rotate them daily so they don’t wear out quickly. A battery can last up to 24 hours when fully charged.) In case you’re wondering, I use an LL Bean backpack as my carry-on, because it has lots of compartments and it’s extremely sturdy.

And that is all the medical stuff I pack! Whew! I really find that the pouches are great in keeping my organized, so I highly recommend those. I don’t use any pill boxes because I can remember what I need to take and for me it’s easier to just dole out the meds individually each day. This is my system, and it might not work for you, but I hope that some of these times are helpful!

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.