Yearly Transplant Appointment Recap!

A little petit déjeuner after the first part of the day!

The Yearly Transplant Appointment Day is a LONG day, so it’s always a good idea to have some treats sprinkled in. :)

The first part of the day is testing, and the second is my doctor appointment. The first part looks like this:

—CT scan, just to see how things are going inside.

—Pulmonary Function Tests (PFTs). I do “regular” PFTs, called spirometry, every three months. These measure my lung capacity, among other things. But annually we do what’s called “full” PFTs, which means there are two other tests added on to spirometry.

—A six minute walk; this test measures stamina and how your pulse and oxygen saturation do while being active. You pick your own speed and walk along a pre-set track (usually a hallway) for six minutes.

—Blood work (also done every month).

So after the first part was done, Dad and I (dad is a good sport who came with me) had a little French snack before a trip to the yarn store for therapeutic yarn shopping, and lunch at 11:30 at a local restaurant.

Dad’s very cute strawberry basil lemonade at lunch.

Finally we headed over to the hospital, where my appointment is, and waited…and waited….and waited….

BUT I was finally seen. Doctor is pleased with all things!

My PFTs went up four points which is really amazing, because my PFTs don’t generally go up—go my workout program, go (more on this in the next post) ! My six minute walk results were also right smack in the normal range. There’s a “low normal” and a “high normal” and I was right in the middle, which is great (this is for everyone, by the way—it’s not a special transplant range. It’s normal person range.). Labs also look very normal.

So all in all, a good appointment with good results! Yay!

Transplant Myth Busting #1: Only Rich People Get Transplants

Fall near my transplant center

Social media can be a den of vipers, as the Bible says.

But it can also be a great place to correct myths, evangelize, and truth-tell.

Last night, a friend of mine on Twitter directed my attention to a thread (by a doctor, no less, sigh) talking about how only the “wealthy” get transplants. She (my friend) was wondering if this was actually true.

It is not, and I did a short thread dealing with the issues she talked about, but I thought it deserved longer (and slightly more permanent) treatment, so, here we go! Time to myth bust.

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Transplants are expensive. It’s true. It’s not just the cost of the surgery, the hospitalization, and the rehab, it’s also the cost of the medications that one must take in perpetuity. That’s why, when you’re first being worked up for possible transplant listing, an insurance check is run. What that means is that your policy is looked at and its coverage limits, etc. are determined. Back in the day when I got mine, my policies (they were different as I went through the process) had a cap of a few million. (Yes, a few million.) That covered the surgery, the hospital stay, the rehab, meds, and also some of the relocation costs, because a lot of people have to relocate to their center for a few months if they don’t live nearby. I did not have to do that, a thing for which I am eternally grateful. So no, I didn’t use all of the cap for my surgery and recovery. But it was there.

The medications are key to transplant success. If you don’t have them, you will die. Ciao, adios, kaput, end of story, Elvis has left the building. You get the idea. So you either must have insurance coverage for them, or you have to be eligible for the low-cost co pay cards that drug companies offer.

The hospital doesn’t run this step just to say, “well, sucker, you don’t have good insurance? TOUGH LUCK!” They do it to get an idea of what you have, but also to get you help if you need it.

Medicare covers transplants, as does Medicaid. So the idea that “only rich people” get transplants isn’t true on its face.

But yes, the hospital has to know that the patient can access their medications, otherwise the transplant isn’t going to work. Before I was discharged after my transplant, the transplant pharmacist had my parents bring in all the medications we’d gotten from our local pharmacy so she could double check that everything was correct. It’s imperative.

But even if we stripped away all the monetary things—let’s say we had the magical Medicare for All that some parts of the left talk about—that doesn’t mean that everyone would get listed. Why?

I’ll tell you.

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To be a good candidate for transplant, you have to check a lot of boxes. You have to be sick enough to need the surgery, but strong enough to survive it. You have to be cognitively capable of understanding when to take all the medications, what symptoms to report, how to take the medications, and why you need to take them. You have to have at least one caretaker during the initial process, because you won’t be able to do things on your own for a bit. (I couldn't drive for three months post-transplant.) You have to have appropriate housing (ie, nothing from Hoarders). You have to have reliable transportation so you can get to and from appointments and tests.

And you have to have a record of giving a crap about yourself.

I’ve told this story many times, but it’s worth rehashing here. At my last CF clinic appointment before transplant, I was sitting in the waiting room next to a girl about my age (early 20s). She had a baby with her. She told me she had two other children and she lived with her mother. She was on IV antibiotics, but she was sort of haphazardly doing them. And then she told me that she knew that she wasn’t doing well and that she needed to find a better living situation and take care of herself better, but that she was “going to die soon anyway” and so what did it matter?

My heart broke for her—it still does. I often wonder what happened to her. She knew that she wasn’t taking care of herself, she knew it was going to lead to nowhere good, but she didn’t change it.

She is the type of person who is not eligible for transplant. You have to be willing to change things if they need changing. You have to be willing to fight for yourself. I don’t know if she was just tired by all of it—because we all have those days—or what. But she was pushing her body to its event horizon very quickly.

I also remember neighbors I used to have, senior citizens who were husband and wife. The husband had quadruple bypass surgery. His wife, a compulsive smoker, continued to smoke even after his surgery. She would laugh if off as we talked outside—I tried not to get too close either, because the smoke wasn’t good for me, but I didn’t want to be rude.

Transplant doesn’t just affect the patient, it affects the families. You can’t have certain pets in the house (ie, birds). No one in the house can smoke. Certain foods are off-limits for transplant patients (ie, grapefruit). The family has to be willing to support the patient through the process. You can be as wealthy as Scrooge, but if you don’t have someone to help you through it, that money is not going to help you get listed. There’s a psycho-social evaluation component to listing as well.

And even when all the stars align, that still doesn’t mean you will get a transplant.

My friend Sage died waiting. I have no idea why she died, and I didn’t. I have no idea why I’m here today, other than God must still have something for me to do. I got damn lucky and all the stars aligned.

There are not enough organ donors to meet the demand for them. This is especially true among minority populations. If you want to increase transplant equity, this is great place to start, and UNOS is already doing good work here, but it needs amplified.

It’s very easy to say, “Oh, it’s all about money” but it’s not. It’s easy to say many things about transplant that aren’t true.

But transplant medicine is the most intense high-wire act in all of medicine. Even when all the stars are aligned, it’s not guaranteed to happen. That’s the truth.

Yearly Testing Wrap-Up!

Yesterday was a very, very good—albeit hot—day at the New Resort, where I had my annual testing—the sixteenth edition!

Yay!

In short, everyone is very happy, and things are GOOD!

So, if you’re new here, let me give you an overview.

“Yearly Testing” is exactly what it sounds like—in-depth testing that I have done every year (duh) to see how my body and my lungs are working post-transplant. This is a great way to update baselines, to get a full picture of my body, and see how things are going. The “menu” changes from year to year. In the first five years, I got a CT scan every year, and a bone density test, and an ECHO and EKG. (I dislike ECHOs muchly, because I hate being touched around the breastbone area, and where do ECHOS take place? RIGHT THERE.)

This year, I had: lab work, full PFTs (I’ll explain that in a second), a chest x-ray, a treadmill test, and a bone density test, in addition to a visit with my doctor (Dr. K, whom I love. He’s from my hometown!)

My bone density test was a few weeks ago and it was fine. I am actually very proud of my bones. Prednisone can affect bone density, leading to early osteoporosis and other unfun things (and CF can do this too, since we can have poor absorption of nutrients—I don’t have this problem). So, my bones are excellent. Yay!!!! (I do take Vitamin D and Calcium supplements in addition to my love of eating dairy. :))

Testing day (Monday) kicked off with a visit to the lab. I have to say it’s much nicer now than when all the COVID things were in place, like temperature testing and all that. You can actually move through the lobby and hear people! (You still have to wear a mask in the hospital.) A very nice nurse accessed my port after we called clinic to get my blood orders because they were not in the computer. (This was repeated throughout the day, and I think it was tech gremlins, as opposed to the nurses not putting them in, because my nurses are conscientious like that.)

After that I had my “lunch break”, where I went to the local French cafe.

I mean, don’t you feel like you’re in France?

Here’s a tip for when you have to do things you don’t want to do, or are less than enthused about, or if you’re having a long day: plan good points in your day. For me, it’s stopping at this cafe and having delicious lunch. It’s a nice way to recharge and layer not-fun things with fun things.

(It’s not that I mind all the doctor appointments. I’m used to them. But it is a long day, with a lot of driving and meandering through medical halls in a place I’m still acclimating to [so I don’t always know where things are!]).

After this I headed to the main hospital for my chest x-ray (which, really, I could do in my sleep by now, just give me the button, folks) and “full” PFTs.

Generally PFTs involve something called “spirometry”—and that’s all I do at a regular appointment. This measures lung capacity (I’m massively simplifying here, if you want more, here you go) by having you take in a deep breath and then pushing it out hard and fast. So when I say I have X lung function, that’s how I know. I usually hang out in the 50s, which is good for me. This is because when I had my transplant, my donor was taller than I was, so my lungs had to be trimmed, so that lessened capacity, as it were, and my surgeon also nicked my diaphragm, which also affects function. But I mean, 50 something is a hell of a lot better than nineteen percent function, which is what I had pre-transplant. But it does mean that I don’t have “normal” capacity, and this is why I dislike wearing a mask so much—it feels like someone has clamped their hand over my mouth. And I did notice yesterday that I lost about 4% oxygen saturation when I had a mask on. So. Take that as you will.)

Anyway, for yearly, we do all the tests, which also measure exchange of gasses in your lungs and other things like “tidal volume” and diffusing and all sorts of things. I just look at the numbers. Unlike at the First Resort, the screen here is turned away from me, so I can’t see the numbers on the screen and have to check them out using MyChart or asking my nurses! But my doctor said they were good, so I’ll take that as they went up, or they’re the same.

After all this, I made a trip to the local yarn store, because I MUST GET YARN, and that was fun. I will discuss all this in a massive yarn along that I owe you and which will come in August. :)

And then it was back to the hospital for my visit with my nurse, Kim, and my doctor. We talked about results and basically everything is great—I killed it on the treadmill test and was super happy.

(Oh, sorry, treadmill test—basically you walk on a treadmill for 6 minutes while the machine increases speed and incline. I did much better than in February, probably because I’m back to living my life again, YAY!, and I feel much stronger. My oxygen saturation was 98-100%! Which is EPIC! YAY!!!!!! And my heart is doing its thing! Yay heart!)

As one doctor told me last year, “We just have to not break you.” At 16 years, that’s really the goal.

But the other thing? I don’t have to go back to see my doctor for a YEARRRRRRR.

via GIPHY

Now, some centers have their patients hit this milestone after, say, 10 years. Or even five. I have been going every three months because, back in Ye Olden Times, my doctor’s office was on my way to work, and do to PFTs, which I need to do every 3 months, I had to actually go to the doctors’ office, because that’s where the PFTs lab was. So it made no sense to go in and not see my people!

However, now, the Resort is on the other side of town, and it makes less sense. So this is a GREAT thing! I can do labs and PFTs at a building off campus and just having those done is easy-peasy and takes less than an hour. So I can still have my fun French lunches and get my tests done so everyone is happy.

Obviously if something goes south, I will report it ASAP and then I might have to come in, but that’s how life is all the time and I’m used to that.

But this is a great thing and I’m really happy that one, my doctors are happy, and two, that I feel so much stronger and more fit. A lot of this is from, like I said before, just getting back to living my life, and also seeing Patty and Di and their family and going on vacation, but all of this is, again, LIFE. As in, not sitting at home not doing things! YAYYYYY!

So that’s how that went, I am very happy and thrilled that I had a good appointment and can now relax for a good long while! (Yes, I do get nervous about finding all these places and paring and all that stuff. It’s just part of the transition—going from a place where I had gone for thirty-six years and that I could walk in my sleep, to something big and new. It’ll get better.)

Sixteen

I have now had my new lungs for sixteen years. They are old enough to drive. :-P (Actually, my donor was a 50 year old woman named Suzanne. So these lungs are now 66 and still kicking!)

The 16th year was hard. We had COVID. We had my transfer to a new center, which….to be honest is still sort of irritating, because adult hospitals just really do not care about their patients’ time in the same way a children’s hospital does. Kinks are being worked out. The diabetes stuff was….rough, not gonna lie. But also, huge strides have been made which is great.

AND there was Patty!!!!!!

And getting to meet Patty!

Even in the midst of worldwide pandemic, there is still joy. There is joy everywhere. Not every day, maybe. I’ve had days that were definitely not joy filled. I’m not a perpetual ball of sunshine. I know that there are days, weeks, months, years, even, that are hard sledding.

But the key is to find the moments that are good (or, less bad).

There isn’t a whole lot of data for post-lung transplant folk like me. the data sets I’ve seen go to 10 years, and there aren’t enough patients to talk about 15 year, or 20 year, data. I’m making data.

I love turning the pages on the calendar. I love having birthdays. I love getting older because I wasn’t supposed to get older. But because of Suzanne, my donor, I did.

And I am grateful and incredibly happy about that.

Seven Quick Takes--Fifteen years, and a signed book sale!

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On the blog this week:

COVID and lung function!

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The big news is that it’s my fifteenth transplant anniversary!

via GIPHY

Fifteen years, folks!

As I write this, 15 years ago it was my last day with my “old” (or factory original?) model lungs. It was a long, hot, HOT day. (Hot like this summer has been hot) I woke up feeling very, very, tired and very beat. I ended the day feeling….well, mixed feelings.

It’s always mixed feelings, right? Because for me to live, Suzanne—my donor—died. She died of a brain aneurysm and her brother gave the OK for her organs to be donated, and she saved my life.

I will repeat the call I repeat every year. If you are not an organ donor, please, be one? Every major religion supports organ donation. (Yes, including the Catholic Church….) If you have any questions, here are some FAQs.

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Here’s a list of what’s happened in fifteen years:

Both my siblings got married

My parents celebrated their fortieth wedding anniversary, and my grandma turned 90!

My godson graduated from college

I have a new goddaughter!

I wrote a book…..(more on a special sale a bit further down)

I’ve been able to do some pretty awesome theater

I’ve made new friends and traveled to new places

I did that Jeopardy thing

I’ve traveled to lots of states—traveling was so hard pre-transplant!

I became a Lay Dominican

I wrote an ebook

I’ve spent time with people—family, friends, new family and new friends!

And really, time is the important thing. That’s the gift.

Winning trivia night

My first hockey playoff game!!! (And they won!)

Me and Di at Christmas

Visiting Williamsburg has definitely been one of my favorite things. And learning to knit with the wool of these sheep!

Mel and I on the beach on Galveston

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OK, so not 7 today, four but we’ll end with: SIGNED BOOK SALE!

Until Sunday at midnight EST (7/12/20), I’m selling SIGNED copies of Living Memento Mori for $15! That’s $5 off the regular price. You get shipping, inscription of your choice (as in I’ll dedicate it to someone or to you!), and a specially designed prayer card and bookmark!

Want one? Email me!

Have a great weekend everyone!