Accommodations are not a "perk"

An example of a lung function test result graph

As the talk about masking mandates ramps up again, I want to say something to all schools (high school and up)—where students and faculty can get vaccinated.

If you are requiring masks for all students and faculty, then please provide accommodation for students and staff who are hard of hearing/deaf and/or cannot wear masks.

When I was in high school and college, my lung function took a huge hit. As a sophomore in high school, I contracted non-infectious TB, which really destroyed my lung function. In college (also my sophomore year!), I almost died. I spent two weeks in the ICU battling a bug that only one other person in the world had ever had.

For the rest of my college career, I had between 19-25% lung function. In my senior year, I began transplant workup. I was sick.

I also started to lose my hearing my junior and senior years in college.

If I had been forced to wear a mask, I would not have been able to attend school. I’m not kidding. This isn’t a “psychological reaction” to wearing masks. It’s a fact, based on my heart rate, my rate of exertion, and my breathlessness when I wear masks and attempt to do anything now, when I have 54% lung function!

I could not have carried all my books around my high school building, let alone my small college campus. I would have not been able to breathe. I would not have been able to go up the stairs in my dormitory. I would have had to drop out of school, because there’s just no way I would’ve been able to do anything like get to class or understand what the professor was saying. This is not hysteria or hyperbole. By the end of my senior year I couldn’t get up a flight of stairs without being severely out of breath.

My hearing loss was fairly mild in college. In fact I didn’t get my first set of hearing aids until after transplant. But who knows if it would’ve been more of a problem if I couldn’t have see my professors’ lips?

Please. If you are in a position of authority to set mask mandates in a school or business, please provide accommodation for those of us who need it. We aren’t making it up, we’re not trying to be dramatic, we need to be able to breathe and understand what’s happening in class.

Seven Quick Takes: Links! Health! Patty!

I know that’s not a sexy title, but….

I’ve been writing about COVID related stuff a bit in the past year. And as we start to talk about masks and lockdowns again, I thought it would make sense to have an index post about COVID-related things.

The reason I feel this way is because I have, not to brag, a lot of hospital experience. I’ve been a patient in a hospital for many years. I know hospitals. I know lung stuff. I know about risk assessment and personal health.

So I feel like I should share my insights with you, for whatever you think they’re worth.

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COVID, antibodies, and transplant life: posted 5/24/21

This one is a bit of an outlier because it deals with transplant a little more specifically, but it also talks about acceptable risk a bit as well.

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Prudence, Acceptable Risk, and Medicine: posted 5/10/21

This was originally going to be a two-parter, but I haven’t written the second part (yet). The first part deals with exactly what the title says—the fact that every medical “intervention” (including taking Tylenol) has risks associated with it, and it’s our job to assess risks for ourselves.

It also talks about how people are in hospitals every single day, in ICUs every single day, and on ventilators every.single.day, because this is totally forgotten in reporting.

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Hospital 101: posted 11/23/20

Basically: “yes you can be in the hospital and not feel terribly crappy.” And, “No, being in the hospital does not mean that you’re going to die.”

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COVID and lung function: posted 7/7/20

Yes, you can recover lung function after being really, really, REALLY sick! If my crappy old CF lungs could do it, yours can too!

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So that’s the listing of the “big” COVID posts. I have some other things scattered in Quick Takes and various places, but these are the long forms, so to speak. I hope you find them helpful.

Here is Patty as reward! :)

She has EIGHT teeth! And can say cheese!"

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I went swimming for the first time in two years! YAY! It felt so great to be back in the water!

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And finally I wrote two posts this week! ICYM them:

An awesome clinic visit

The state of the Writing Wicket

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--Second Friday of Lent

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Hi, everyone! How was your first week of Lent?

Mine was MEH. I thought I could get away with king just little social media. No, I really can’t. I need to be strict about it. So I’m really going to try to only use it for book/writing things and some random updates on my personal page on FB. Because man I use way too much SM. So. Time for timers!

In other news, we WILL start Stations tonight! 7:00 PM EST on my Facebook author page!

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Patty and her family are safe and warm in Texas. :)

Patty was supervising her mom’s yard work when this was taken. :)

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I got my first COVID vaccine!

Yayyyy! My parents and I all got it at a drive-through clinic here in town. It went really fast and really well. I did have a sore spot the next day, but it was minor. Didn’t stop me rom doing anything or sleeping on it.

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I had clinic on Monday. It was….special? I mean, not bad special. I get to go six months without being seen which is the longest I have ever gone in my life between pulmonology appointments, so yay! And my old transplant coordinator at Children’s is now at the New Resort, double yay!!!!! As I told my doctor, “We’re getting the band back together!”

But in some non-yays, I am learning the ways of the new place. The first thing being, they will not take you early. Doesn’t matter if they have time, doesn’t matter if the doctors are ready. They will not take you early. So I now know I don’t have to get up as early as I did, because if I’m there early I just….sit there. Until it’s my turn to be called.

Actually, you can tell this hospital is not used to people being on the ball, because they say they want you there a half hour before your appointment time. I’m assuming this is because people tend to be late. I, however, am almost never late. If I am late, I am probably dead. :-p So, now I know!

Also in the lab, I had a freak out with the tech because she saw all the orders for me in the computer—we were doing vitamin levels and that always require like 40 orders—and she freeeeeeaked. “Well, what do you normally have drawn?! There are orders from two doctors in here! Who do I call!? What labs do you normally get drawn?”

I do not know. I tell her that. She asks me again, in increasing levels of panic.

We did this about four times.

Then I had to give her the clinic number so she could….call and ask them if they really wanted all these labs.

It was insane.

If it’s in the computer….it gets drawn. Sigh.

But, everything was good. PFTs were good, a random treadmill test was good, everything was good. Everyone is happy. We’re working on getting my colonoscopy scheduled….what joy. :-p (it’s a little tricker for me because we have to use the port, and we have to make sure I have lots of anti-emetics (anti-nausea) drugs on hand because my stomach hates the prep. We’re talking projectile vomiting hates the prep, folks. )

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The nice thing about this clinic, however, is that it’s close to a French cafe and a local yarn store! So I went to the yarn store and picked up a really quick project—the yarnicorn cowl.

Knitting in clinic!

Done the next day!

I’ve never used a really chunky yarn like this before and it was SO FUN. It’s from Knit Collage, if you want to check it out. I definitely am going to use more of this in the future! (I used the Lagoon and Nomad color ways here, in the Cast Away yarn.)

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Quick ad break! If you haven’t picked up Living Memento Mori, please do so? Support your local Catholic author! :) I also have a patreon, with memberships starting at a buck a month!

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Next week’s yarn along is going to be AWESOME because…..the cardigan is finished. But more on that next week!!!!!! :)

Seven Quick Takes--Giveaway Winners!!!!

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It has been BUSY here this week! First there was the book giveaway—and the winners are….

Christy Thomas and Rachel Anna!

Congratulations!! I hope you love the book! I I have emailed you to get your information. :)

Thanks to EVERYONE who entered! If you’d like your own signed copy, email me—they are $20 and include a bookmark and prayer card! (And shipping!)

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I also wrote this: No, you cannot cure ALL THE THINGS with diet….

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Speaking of health stuff….this vaccine rollout has been sort of nuts.

First, the state decided that my group of people—people with “congenital” issues, which CF is, but it’s weird to call it that—can begin getting the vaccine on Monday. Ok. Fine.

I talked to my transplant clinic (OSUMC) and they said, well check with the Department of Health.

Oooookay.

So I register with my county’s health department. Fine.

Then I hear that OSUMC is doing a big vaccination clinic for their patients, even turning the basketball arena into a vaccine clinic. Yay!

Oh wait. I’m not eligible for that, because…….health departments are taking care of me? Huh? OSUMC is only doing their elderly patients? (Which makes zero sense given that I am a transplant patient and they see adult CF patients?!)

This makes no sense to me. OSU is doing elderly people, which, OK, obviously they need it. But health departments aren’t getting a ton of vaccines, especially in a county like mine which has a smaller population and is mostly rural. They’re getting a few hundred doses and they have thousands of people signed up.

So. I have no idea when I’m getting the vaccine or where, but I’m really annoyed that the place where I get my healthcare isn’t making an effort to put its patients in their clinic.

This sort of dovetails into something else I’ve been wanting to talk about….

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Adult hospitals really don’t care about making your life easier. They don’t. Children’s hospitals do.

The Resort had everything there. Radiology. Labs. Clinics. ER. Hospital. EVERYTHING. All under one roof. I drove, I parked once, I got everything done. It was easy.

At OSUMC, nope. I have to drive to one building to get my tests done before clinic. Because we can’t use the radiology department in the hospital. And there’s no pulmonary function testing lab at the hospital. REALLY? They do lung transplants. And there isn’t a PFT lab at the hospital itself?

So I have to go to this place, register twice, and then drive to the hospital itself for my appointment.

At the hospital, they do not take you early. They did at the Resort. At the Resort, my day started with an 8:0 lab draw in infusion. I was often out the door by 11 am. I’d seen everyone.

Here? NOPE. I’ve got labs at 9, then PFTs, then X-ray, then I have hours to wait before my 2:00 appt., because they won’t take me early. Seriously?

So I have to find ways to amuse myself between these two things, and I waste an entire day. This annoys the crap out of me.

Ad finally, the free parking is only good for a few hours. So there’s that.

Adult hospitals, quite frankly, suck at this stuff. They’re so awful. And if it wasn’t COVID-tide this would be somewhat better because I could go to cute cafes nearby, or go shopping or something. With COVID, this all becomes a massive pain in the butt because places are either closed to indoor seating, or I’m sitting around wearing a mask in all these places for hours, which is annoying.

ADULT HOSPITALS! DO BETTER.

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OK after that you deserve some Patty. Here you go

She just had her six month check-up and she has gotten taller and heavier so yayyy! And then she got her six month shots, poor bebe. :(

That’s one reason I want the vaccine NOW—I want to see Patty!!!!!!!!! I want to travel!

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This weeknight bolognese recipe is EPIC and you need to make it….I didn’t use ground sirloin, I used regular old ground beef. :) Also left out the cream. But SO GOOD.

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And finally, I read The Lost Man this week and really liked it. If you like mysteries, this is a really good one!

No, You Cannot Cure CF with "Diet"

(I’m doing a book giveaway this week! Enter here!)

I see a lot of crazy things on the Internet.

One of my favorites (sarcasm mode) is that you can “cure” every chronic disease with diet.

Um….

via GIPHY

No, you can’t.

No diet is going to make chromosome 7 magically work in me.

No diet will fix the fact that I have CFRD (CF Related Diabetes). It will not make my pancreas magically make insulin.

I am really, really tired of this crap. Stop it.

When I visited the CF dietician back in the day (I don’t need a specific CF dietician anymore) the rule was “eat as much of anything as you want” as long as it’s not diet, low-fat, or fat free. EAT EAT EAT. We were always trying to find ways to pour more calories into my body. Milkshakes. Ice cream. There was calorie powder!!! (I am not kidding.)

via GIPHY

That’s because when you have CF, your body burns an incredible amount of calories just trying to maintain your baseline. Coughing takes a lot of energy. EVERYTHING takes a lot of energy. Oh, and salt? You want a LOT OF THAT. Popcorn. Peanuts. Potato chips. Because your body loses a lot more salt that everyone else’s. So in the summer, I’m all about the sallllt.

When you see things that say “diabetes can be reversed with diet” they are (I hope) talking about type two, and yes, in type 2, what you eat does matter. It matter a lot. You can try to fix it with what you eat. But if you are a T1 person, you cannot. It’s not possible.

And also, if you have T1, you actually need sugar sometimes. There are times when I am commanded to eat candy and pizza and drink orange juice! (hopefully not at the same time!)

While I’m fixing health lies, let’s fix another one: You do not just “get a transplant.”

If you need one, you might not get one. If you smoke, you must stop smoking. You are tested for cigarette usage in your labs. If you drink and you need a liver transplant, you need to stop drinking.

Do some people do stupid things post-transplant? heck yes. And these are people who get kicked out of their center’s program and are not eligible for another transplant, should they need one.

But the vast majority of the time, centers are hard core about making this sort of behavior STOP before, because there are so many people that need transplants. If you’re not going to take care of the organ, then you’re most likely not going to get one!

And it’s hard work to qualify for a transplant. It’s days of tests and evaluations by multiple people on a multidisciplinary team. The idea of “just getting a transplant” is laughable to me.

2020 taught me a lot about how little the average American knows about hospitals, illness, and ICUs. (And germs.) But in 2021 I’m seeing a lot of misinformation about what a “good” diet can do for your body.

homemade bolognese. YUM.

Good food can help you in a lot of ways. So can exercise. But it does not cure everything and people who say it does are charlatans, up there with the “essential oils cure ebola” crowd.

So, now you know! Go and use your knowledge. :)

The "Brave New Us" Podcast Interview is Live!

I was so privileged to be interviewed by Samantha Stephenson for her Brave New Us podcast! This episode is about genetic illness and genetic manipulation: Should we do it? Why or why not? I had a great time talking to Samantha and I hope you enjoy our conversation! You can listen here.

Seven Quick Takes: Bioethics and Knitting!

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Hi! Tomorrow is St. Dominic’s Day! YAYYYY!

The Virgin Mary with St. Dominic and St. Hyacinth

So pray the rosary today, because the DOMINICANS GOT IT FROM MARY. :) One of the reasons I love being a Dominican!

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Sometimes I talk about bioethics here. Today is a crash course.

One of the things I get a lot of is, “Does the Church [The Catholic Church] permit organ transplants and organ donation?”

Quick answer: Yes.

“What about from brain dead people?” (aka, neurological criteria)

Answer: yes

This…is a point of contention for some Catholics.

The National Catholic Bioethics Center talks about this all in detail. Here, to make it one-stop shopping, I am listing the following for you!:

organ donation: Church documents, Ethics & Medics, FAQ and Summaries, podcasts, Press Releases and News, Statements, book store items

the most important, and probably useful thing, to most of you, is this: FAQ On the Determination of Death Using Neurological Criteria.

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So, if you don’t want to read all that…..cut and paste!

What is brain death?

“Brain death” refers to the medical judgment that a person is dead, determined by neurological criteria. Properly diagnosed, brain death means the complete cessation of all organized neurological activity throughout the entire brain, including the cerebrum, cerebellum, and brain stem. When all brain activity has ceased, the body irrevocably ceases to function as a unified whole. The appropriate phraseology here is “the determination of death using neurological criteria.”

It is appropriate to use this criteria?

The customary criteria for determining death are "cardio-pulmonary," i.e., death is declared after breathing and heart-beat cease. Technological advancements in critical care, however, have made continued circulation and respiration possible through mechanical means even after brain function has ceased. The use of neurological criteria for the determination of death can be legitimate according to the Catholic Church. In an address he gave to the [18th International Conference of Organ Transplant Specialists][1] in August 2000, Pope Saint John Paul II observed that their application, if rigorous, “does not seem to conflict with the essential elements of a sound anthropology.” He further stated that “a health-worker professionally responsible for ascertaining death can use these criteria in each individual case as the basis for arriving at that degree of assurance in ethical judgement which moral teaching describes as ‘moral certainty.’ This moral certainty is considered the necessary and sufficient basis for an ethically correct course of action.” Neurological criteria consist of three basic signs: deep coma or unarousable unresponsiveness, absence of cerebral and brain stem reflexes, and apnea. Pope Pius XII and Pope John Paul II both said the Church has no competency in determining death; this properly belongs to medical science. [1]: http://www.vatican.va/content/john-paul-ii/en/speeches/2000/jul-sep/documents/hf_jp-ii_spe_20000829_transplants.html

Can a Catholic receive an organ transplant?

Yes, a faithful Catholic may receive organs from a donor who is declared dead by neurological criteria. A faithful Catholic may also make provisions for the donation of his own organs in the event of his death whether it is determined by cardio-pulmonary or neurological criteria. Reasonable doubts about the rigor with which the determination of death would be made, however, may warrant caution.

Now, note that last part. In some places, like China, organ harvesting takes place in, um, less that salubrious ways. (To put it REALLY mildly.) So yeah, if you’re in a. place where there was be questions about this…..then yes. You can ask. You can say you don’t want a transplant.

I can say, myself, that if the Church said no to transplants, I would not have gotten one. Full stop. End of discussion. I’m dead serious. (Really, dead serious, because I would’ve…been dead! Oh, my black humor sometimes.)

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OK I think we’re done with the serious now. :) But yes, the Church, like the rabbi said in Fiddler on the Roof, has a position on everything! :)

(In Fiddler, it’s, “Rabbi, Is there a blessing for the Czar?” “There is a blessing for everything my son!…May God bless and keep the czar….far away from us!” )

Check the Catechism. In fact, you do have a Catechism at home, right????? (Because seriously, you should.)

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I didn’t do a yarn along this week, but next week! Yarn! But here’s a peek at Patty’s baby blanket….

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If you want a signed book, email me; they’re $20 and include a book mark, prayer card, AND shipping! It’s time to start thinking about Christmas! :) :) I also have an ebook!

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Book club is still happening! My BGLs have been nuts so it’s sort of thrown off the schedule, but it you want to jump in, you can! All the previous videos are on my Facebook page. On Tuesday we’ll be meeting at 3:00 EST!

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!

Seven Quick Takes--the June Finish Line!!!!

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OK so first, here’s a lovely interview I did with my friend and fellow author Andrea Green Burton!

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Oh my goodness folks. It’s been Doctor Month around here, but I am so glad to be done. Done done DOOOOOONE!

A picture of the New Resort!

Behold, the NEW RESORT.

My new clinic is beneath the walkway bridge you see in this photo on the left. Hi clinic! :)

So, last week I had my first round of Yearly Transplant Testing at the new resort. This was not here, it was at another building slightly off campus. (OSU is very very large)

Here’s what I had done:

PFTs—spirometry (aka, basic PFTs where we check how much lung function I have), a gas diffusion test (which tells you how various gasses diffuse in my lungs and such) and another test called “the box” (where you sit…in a box), and to be honest I’m not entirely sure what that does. I want to say it measures tidal volume or something like that, but I only do it once a year, so….

I met a new respiratory tech (RTs). She was nice. At the time I didn’t know this, but now I know that my PFTs and chest X-rays and blood work will all be happening at this building, so I ‘ll probably get very familiar with the RTs, infusion nurses (because blood work=port access=infusion clinic!), and radiologists here! The building is pretty nice, and it has food, so that’s a good thing, and free parking.

Anyway, PFTs were fine/good. So yay there.

The Six Minute Walk, which I was sort of dreading. Basically a course of a certain length in a hallway is marked and you just walk around the two cones that mark the ends, doing laps for six minutes while your oxygen saturation (sats) are checked via a pulse ox. I was i the normal range, hallelujah!!!! I was really nervous about this test because, you know, haven’t really been getting out all that much….

Then I had a CT scan, which was fine except for two things—one, they had me move on my stomach for some of them, which was uncomfy because I’m a stomach breather and so I couldn’t really hold my breath that well or that long and they kept doing them back to back, so I couldn’t really catch my breath, and two, they just shoved me back out in the hospital without letting me stop to put my bra back on. WEIRD.

So I had to go into the bathroom and, you know, get dressed again. (I had my shirt on, just not my bra. So, weird.)

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OK so after this, I went to another building for the cardiology tests. I was really early—we were booking it today—but once they adjusted to a patient being early, they took me early. I had an ECHO which I loathe with all my being because it HURTS having someone push a transducer INTO YOUR RIBS. For a half hour!

But we ended the day with an EKG, which was fine. Both these tests were fine. SO YAY WINNING AT LIFE.

via GIPHY

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And then I went and got lunch at a French cafe and sketched! (Yes, I wore a mask. There was no one in the dining room. Everyone was out on the patio or in the little bar because it was a really nice day, so I had the whole dining room to myself and I sketched and had quiche lorraine and a chocolate croissant and it was LIFE.)

via GIPHY

See? NO ONE AROUND. Also social distancing markers!!!!

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OK so, that was Friday, which was also my daddy’s birthday. And then mom’s birthday was on Monday. So here are my cute parents:

and their 41st wedding anniversary is on Tuesday! And that’s also my grandma’s NINETIETH birthday!!!!!

(here’s grandma)

At my sister’s wedding last year in Estes Park, CO.

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OK so lots of parties.

Anyway, yesterday, I had my first appointment at the new lung transplant clinic (pictured above!). It was my same doctor, which was great, and my new coordinator is really nice, so I think we’ll get along just great.

The clinic is….weird. Actually, OSU itself is sort of weird, in that it has these programs, but then it doesn’t have ancillary services that they need. Like, they have a ton of immunocompromised patients, because they have a huge cancer center and transplant section, but there’s no special waiting room for us in the ER.

via GIPHY

So, yeah. Why.

Also, the waiting room is basically in the hospital’s atrium, which also makes me go…..why. That doesn’t seem awesome. It’s also incredibly noisy so it makes it very hard for the hearing impaired like moi!

ANYWAY.

Eventually I will adjust to these things.

So the way it works now is I will still be seen every three months. Clinics are in the afternoon, so a few days before my appointment I’ll go to the other offices in the AM for blood draws, PFTs, and chest x-rays (CXRs). Then I have clinic. And we’ll go from there. I do sort of like not having both on the same day.

I will also meet at least one other doctor in the clinic so that someone else has met me and is familiar with all my specialness! :)

(See: CF. Menopause. CI that counter indicates MRIs. Port. Hearing loss! Anemia! Weird diabetes!)

We asked questions, we got answers, and Dad went with me too so he has also met the new folk and seen the clinic.

Also, there is plentiful parking at this location! YAY!!!!! (and it’s free for patients! DOUBLE YAY!)

So now, I’m done with doctor appointments until like, September, and I rejoice in this, and will now take a long weekend to recover from all the madness of the past month! :)

Seven Quick Takes--Doctor Week

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OK so, this isn’t really going to be a quick takes, I don’t think, it’s really going to be more of a “this is what happened in Emily’s world!” this week. :)

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MONDAY

I contacted my endocrinologist b/c I think, per usual, that we changed too many things about my insulin at one time and it was MAKING ME CRAZY.

Really. It was “Emily hates the world for no apparent reason and also WANTS TO CRY FOR NO APPARENT REASON.”

Not fun.

So yeah, we made a few small tweaky things—as in, we’re just slowing down the insulin train. Hopefully that will help. (And will also help my weight….sigh….because yeah, I HATE gaining weight b/c of insulin adjustments. HATE IT.

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Time to visit my ENT!

While in the waiting room, I snapped this picture!

First, yes, those are lovely old school Resort face masks, because TEDDY BEARS!!!!

Second, that’s how you wear a mask! It must cover your nose! It must adjust to your face!

Please don’t be stupid. If you’re gonna wear a mask, wear it properly.

Anyway, the ENT was fine. Thank goodness, because I’d had a sinus infection during all this and apparently it left nothing but a little bit of “debris” (his word) that we got rid of. Yay!

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Wednesday: Dermatologist! Apparently she wants me to use some sort of cream on my arms. So I’m waiting for that to be delivered, but the good news is that we didn’t see any sort of new skin cancers, so yay there!

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Today was book club. I’ve also been really sore all week because of the new workout I’m doing. It’s ROUGH. I mean it’s hard cardio, so the legs are adjusting, but cranky.

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And finally, (so 6, not 7, takes) tomorrow I have all my yearly transplant tests at the New Resort and I’m a little nervous about that. One, because I don’t know if people will take off their masks to talk to me. Two, I’ll have to explain all sorts of things to these people. Like, my PFTs are generally a little weird. They’ve always been that way. Etc. Third, I’ve actually had respiratory techs yell at me because I haven’t been able to do the tests “properly”. Um…..I’m doing the best I can here!!!!!! So yeah, I’m afraid of new techs.

The tests will take all day (full PFTs, 6 minute walk test—UGH, dreading this—a CT scan, and then an EKG and an Echo.). Afterwards I head to my parents’ so we can celebrate my dad’s birthday!

So that’s it from around here! How are you doing?

Seven Quick Takes--June Is Bustin' Out All Over

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Since it’s Corpus Christi this weekend….

Gosh I love Corpus Christi! Of course I’m not going back to Mass yet. So I’ll have to celebrate at home. I might go back to Mass in July. I have a doctor appointment later this month and we’ll talk about those things.

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From the blog this week

Heart Note

I’ve stopped the Wednesday Notebooks—did you like them? Because I can bring them back. Let me know in the comments!

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Also, one of my perennial favorite posts: The Real Lucy Pevensie

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So this week is sort of the “calm before the storm” in a sense. I had nothing scheduled all week. I’ve enjoyed it. :) Next week, however, it gets a little crazy: I see my ENT on Tuesday and I’m really happy about that because man, do things need checked and cleaned out. I see my dermatologist on Wednesday. And on Friday, I have my yearly transplant tests, but they’re at the New Center, so it’ll be….interesting. I mean the tests are all tests I’ve done before. But it’s new people and a new setting and I have no idea how The Mask Thing will go—because usually, medical professionals take them off so I. can understand them. Will that fly here? No idea. Sigh. I’m a little nervous about that.

Friday is also my dad’s birthday! And then my BIL’s birthday is on the 21st, and Mom’s is on the 22nd, and their anniversary (Mom and Dad’s) is the 30th, and that’s also my grandma’s 90th birthday!!! (And my sister and BIL have their anniversary on Saturday!)

whew!

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The week after I have my first appointment at the New Center. Same doctor, but a much larger team—with more doctors as well, so it’ll really be like my old CF center, where you have multiple docs but there’s one who usually follows you. I will report back on how this goes.

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I’m also adjusting my insulin, and wow, whenever I adjust it, my body gets cranky. I had some sort of bug on Tuesday this week, so that’s why no book club. And I’m hungry. Which is normal when you adjust insulin but it doesn’t make me any happier to know that it’s normal!

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Finally some book business!

If you would like a signed copy: They are $20. Email me here. The price includes shipping and book gooides!

If you have a copy and would like a signed book plate, those are $3. Again, email me. You also get book goodies.

I also have an ebook, Catholic 101, that is $5!

Book Club is on THURSDAY next week because of the various doctor appointments. :) So Thursday at 3:00 on my Facebook Writer Page. Previous book club videos are also there, so you can catch up to your heart’s content!

How to be your own health care advocate

Today I’m going to share some hard won wisdom with you!

A friend of mine who also has CF said that we’re the “marines of health care.” And that’s true. We’ve had decades of experience working closely with doctors, hospitals, and medication regimens. And what we think of as obvious is not so obvious to the rest of humanity.

So I’m going to share some tips with you today to help you have better health!

I’m going to start with what is probably the most important tip:

Know your baseline.

What I mean by that is know yourself. How do you normally feel? What’s your general energy level? How much sleep do you normally need—and get—and what do you feel best with? (For me, it’s about nine hours.) How does caffeine affect you? (Or doesn’t it?)

All these things are your baseline—how you normally feel when you’re healthy and everything is chugging along just fine. This even includes stuff like how many times you normally go to the bathroom. (I’m not kidding. For a diabetic, this is important to know—and same with CF.)

You might not have thought about this before, but when you feel “off”, it’s because you’re unconsciously comparing your state to how you normally feel—aka, your baseline.

For example, my right hip tends to bother me on and off. It’s not a big deal, I’m aware of it, it’s been checked out. But if it suddenly became really painful, that would be an anomaly.

I knew that my blood glucose was really high, without even testing it, when I was dropping weight really easily and going to the bathroom more often, and carrying water around with me. Those are all not normal feelings for me.

Knowing how you feel—both physically and emotionally and mentally-is key to judging if something is wrong with you.

I knew that the type of insulin I was on over the summer was wrong for me—on a lot of levels—because I became a really awful person! I was snappy and lost my temper at everything and just hated everything, and this is not me!

So you have to know how you feel normally, so you know how you feel when you’re sick, or when something is off.

All drugs have side effects

The questions are: will you get side effects, and if you do, how bad are they?

People are generally shocked to hear that meds can cause problems. Yes, they can. Heck, water can cause problems if you drink too much of it. If you take too much Tylenol, your kidneys are not gonna be happy with you!

Every medication has side effects. Not every person will experience any, or all, of them.

But a side effect alone is not enough to not take the med.

For example: I used to take cipro for infections. People were always shocked. “Don’t you know that class of meds can cause tendon issues?!” they would cry.

Well, yes, I did (do) know that. But the thing is, I didn’t have a choice. This was what I had to take so, to be honest, I didn’t die.

I lost my hearing because of ototoxic meds. That was a choice we made, so I would not die.

Now, I can’t take cipro or any drugs in its class anymore, because my tendons are starting to get weird with it. I can’t tolerate it anymore. So that means I have fewer options for when I get sick.

I take prednisone daily. I have taken it for 15 years and I will take it until I die. It’s what’s causing all my blood glucose issues. But I can’t not take the pred. I tried to go off it. My body hated it. My joints, in particular, were not really happy. I take nexium, a proton pump inhibitor, even though I know it might cause bone issues and all sorts of other things, but reflux can lead to cancer and rejection, so, again—balancing act. I take immunosuppression meds, because I have to to stay alive, even though it ups my cancer risk by about a factor of ten, especially skin cancer.

Sometimes you start a med, have a rough few days, and then your body adjusts. Pre-transplant, I was on bactrim and cipro and a million other meds every day. At first, this was rough. Eventually, I got used to it.

The lesson here is, if you’re having side effect from a med, and it’s severe, then you need to talk to your doctor about it—especially if you’re having any sort of depression, anxiety, or suicidal ideation. Then, you must call your doctor IMMEDIATELY. This isn’t something to mess around with. Stop the med, talk to the doctor, figure out another plan! There are lots of meds out there! Find what works for you!

You have to be aware of how a med affects you. That goes back to knowing your baseline.

But yes, when you are taking a medication, your body might not like it. That doesn’t mean that it’s a bad drug. It just isn’t working for you, and that’s fine.

If you want to know the side effects of a med, they are easily google-able, or you can ask your pharmacist or your doctor. Every time I go to pick up meds, I get asked if I want to talk to the pharmacist about it. EVERY TIME. So, if you want to know, do that!

You have to know your medical history

You—as in, you yourself—must know your medical history. You must know what drugs you take and why. You must know the dosages. You must know what drugs you cannot take (if any). You have to know what is contraindicated for you.

For example: I can’t have MRIs. I can’t have PICC lines (it’s PICC, not PIC. Peripherally Inserted Central Catheter, folks.), because there aren’t any more spots for them! I can’t have zofran because it makes me vomit. These are all things I have learned and I often have to tell medical professionals these things. Because, they don’t know. Or they haven’t read my chart. (grumble grumble.)

My parents know these things as well. I have my med list and issue list on my phone so I can just whip it out in an ER or a new doctor’s office. It is a good idea to have someone else know your medical history so if you have to go somewhere in an emergency, that person can either say, yes, here’s the deal, or, “here it is on her phone.” (Now, for me, anyone who has read the book knows basically all of my medical history, ha!) I don’t expect people to be able to spout off all of it—except my parents, and they can do it—but I do have friends who know, OK, this is the deal. Especially when I travel with people, I have to tell them things that are relevant, like, me and the sun are not friends. I might have to stay inside for certain hours. I have to check my blood sugar. I might need you to get me juice. Etc.

But you have to be your own advocate. You have to say, I’m sorry, I can’t do that—and why. You have to say, I cannot take that med, or have that procedure, or whatever. (For Catholics, this also includes why you’re not taking birth control pills for contraceptive purposes! Not that you need to go all Humane Vitae on the doctor!)

Sometimes you have to talk doctors off ledges. Sometimes I get a new doctor who doesn’t realize I’m genetically anemic (I have thalassemia minor.) He’ll freak out when he sees my iron counts. But I’ve always been anemic, and we don’t do anything about it. It just is. I’m used to it!

And finally….

Be aware of change

Sometimes you’ll be on a med for awhile and you’ll be fine, and then you’ll notice…issues. That can happen. Sometimes a med builds up in your system and then it causes issues that were not apparent in the beginning. (Ototoxic meds, looking at you!) So if you have a chronic condition, you do need to evaluate. Again, know your baseline. Know what you’re being treated for. Sometimes I have to say, guys, this med isn’t working anymore. And we figure out something else.

Essentially, we all have to be aware of how we normally feel, what we’re taking, why we’re taking it, and our own health history. This enables you to be your own best advocate, which is vitally important.

Seven Quick Takes--The Medical Saga Endeth (we think)

Linking up with Kelly!

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So, here’s a spicy take I wrote this week about Medicare!

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And here’s the follow up:

So, we got the great folks at the CFF involved (they have a team that just looks at insurance stuff). They came to the same conclusion we did: that there really is no plan that covers everything, but that hospitals and doctors and I will make it work. (think Cinderella’s sisters: “I’ll make it fit!”) NCH doesn’t normally have a lot of Medicare people (because, it’s a, um, Children’s hospital), but….”they’ll take it”, says the finance office. (Thank you finance office!)

What I kept hearing from everyone was “well, we haven’t had to deal with this before.” Yes, I am the one that is trail blazing for everyone else. Future generations, YOU ARE WELCOME! I expect copious floral arrangements on my grave and Masses offered after I die. :-p

So, my hospitals are (sort of) covered. My main doctors—as in, the Big Three—are covered. The next issue?

The Prograf (or, THE GRAF).

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The prograf is the med that basically keeps me alive. It keeps my lungs from realizing that they aren’t actually, um, the factory setting. :-D

Now, when I was emailing my nurse about this, she said, “Well, we can always try generic.”

“What do you mean?” quoth I. “Generic doesn’t work for me!”

“Well, the formulation is a lot better now, and the hospital is even considering switching its formulary to the generic,” nurse said.

AH! Well, that would solve problems!

Or….would it????

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So I go to the insurance site. I plug in generic prograf, expecting to see massive cost savings and ease of access!

Hahahaha.

NO.

Generic Prograf is covered—but as a tier 4 med, meaning it’s like, non-preferred, no one wants to use it, and then I see, oh, step therapy may be applied.

Step therapy, for you new people, is when you have to try other drugs first before the company will pay for the med you want.

Yeah, we’re not doing that with the drug that keeps me alive.

So, what we’re going to do is go through prior authoritzation stuff, and we won’t have to pay out the nose, because I qualify for the Medicare Extra Help program (which is a great thing, so kudos there), so we can’t pay more than a certain very low amount.

So.

I have picked a plan. The saga is over. (For this year!)

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In other news, my tree is up, and Susan the Corgi is ready to celebrate….

And I think I’m doing buying gifts. That’s exciting. :)

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I had my first book interview on Wednesday with the delightful Fr. Patrick, O.P. We talked for forty-five minutes about all sorts of good stuff! The interview probably won’t be up until January, but when it is, I’ll let you know! I’ll be posting all media related to the book on the book’s page. . (And pre-order links, to a variety of retaliers, are there are well! Amazon US, Canada, and UK; Barnes and Noble; Indiebound….)

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Just a note about what Kelly wrote about today—how we tell the stories of the disabled.

One of the things I’ve noticed, especially as the practice euthanasia almost on demand rises, is that people don’t really understand life with a disability, or an illness. They think they do. They imagine the horrors of it.

But honestly, that isn’t the way it works.

When I lost my hearing, it was very gradual, over a period of years. It was gradual. Now, if I’d lost it all at once, yes, that would’ve been traumatic, and highly so.

Did I grieve losing my hearing? Um, yes. A lot.

But when it came to CF stuff, it was gradual. I still enjoyed my life, and I do enjoy my life, even with insanely stressful weeks like this week.

Being disabled makes things harder, but it doesn’t make my life worthless or less.

Seven Quick Takes--the 60th of September

Linking up with Kelly!

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In case you missed it, here’s what’s been going down around these parts this week:

Simplicity Series #1—Reset Day!

Stitch Fix Box #8!

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The reason this post is entitled the 60th of September is because this month has seemed insanely long. Isn’t there a song called “Wake Me Up When September Ends?” That’s how I feel right now. It’s just been so long. And sort of crazy.

One of the big crazy-making things is that I’m in the middle of Doctor Roulette, which I really haven’t written about here, so I probably need to catch you up.

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(If you’re not interested in medical stuff, skip this and go to point four, where I talk about BOOK THINGS!)

So, being post-transplant, and being fourteen years out, is….interesting. Obviously, I am INSANELY GRATEFUL to be at that marker. I am. Never think I’m not. But at the same time, it’s a Brave New World of Medical Stuff, because it’s rare. So when things happen, there’s not a lot of research to go on. There’s just…..talking. And guessing. And seeing what works.

Essentially, all summer we have been messing with insulin, because my blood glucose levels have been off. (I”m trying to keep this as medical jargon free, but when I say this, what I mean is my A1c, not my BGLs. If you’re confused, I can explain in another post, so let me know if you want that much detail into my life!)

So my team decided to put me on some long-acting insulin.

But……that didn’t work. First, it didn’t lower my BGLs, which I was testing twice a day, and second, insulin is a hormone. That means it can affect lots of parts of your body.

For me, that meant—headaches. Not sleeping. Weight gain (DAMN IT), and insanely inappropriate mood reactions. If Big Ben threw an interception I wanted to break things. If someone parked next to me at the supermarket, I became incandescently angry.

This is not appropriate.

And the scariest part for me? Forgetting things. Words. Ideas. What I was doing. This is not good. I rely on my brain, and words are my trade. I can’t be forgetting them! I need to be mentally sharp.

(But you’re never mentally sharp, Emily, says the peanut gallery….)

I did some digging and found out that when you have too much insulin—as in, you have WAY too much, and your body doesn’t need it—this is what happens.

And this is the problem. My body is weird. Not just the transplant weird, but weird for a CF person. I’m what’s called “pancreatically sufficient”, which is rare. It means my pancreas works like a normal person’s, not like a CF person’s. I don’t need to take enzymes to help digest my food, because my pancreas does it. I never had CF related diabetes.

And my A1c starting rising once I hit menopause—so there’s probably a connection there as well.

So, long story short, my team is sort of confused, and I’m seeing an endocrinologist the day before Halloween. That’s one reason I haven’t been writing as much this month, because things have just been crazy, but also my body has been through a lot, and I’m trying to be nice to it. Which means, chilling out, after all the non chilling out. :-P

There are some other issues, too, mainly that I don’t have a great track record when seeing endos, because they look at me and go, you’re really messed up, what do you want me to do about it?

But anyway, that’s at the end of October. Yay.

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in the meantime!

BOOK THINGS!

People are starting to ask for interviews, which is….weird. I mean, good, but weird.

The cover is 99% done. I’ve seen it. I can’t show you yet. If you want to be the first to see it, subscribe to the blog!

It’s really pretty, I like it. :)

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Hockey season starts soon and this makes me very happy!

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I am going on retreat next week, so if you have prayer requests, I am honored to take them with me! Drop them in the combox, or use the contact page.

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If you haven’t seen the Word on Fire team’s newest entries in their Pivotal Players series—Fulton Sheen and Flannery O’Connor—I highly recommend them! They’re great! Flannery is a really important influence for me, in how to live as a Catholic and a writer, and I write this quote from her at the beginning of all my journals:

I feel that if I were not a Catholic, I would have no reason to write, no reason to see, no reason ever to feel horrified or even enjoy anything. I am a born Catholic, went to Catholic school in my early years, and have never left or wanted to leave the Church. I have never had the sense that being a Catholic is a limit to the freedom of the writer, but just the reverse. … I feel myself that being a Catholic has saved me a couple of thousand years in learning to write. (The Habit of Being *)

So I love the Flannery film. It was also nice to learn more about soon to be Blessed Fulton Sheen—I had read some of his books, and I knew of him, but the film does a great job fleshing out what I knew.

(Also, in a nice twist, a college friend of mine composed the music for both films. Go Sean!)

And I really don’t think we can improve on Fulton and Flannery, do you? :) Have a great weekend!

*==Amazon Affiliate Link

Amber

“The Song of the Lark”

Amber has joined my buddy Sage.

It’s sort of funny. It used to be that CF kids knew each other more than I did—we’d have wards and camps and so people had lots of CF friends. I never did, because that was all on the way out when I was diagnosed. I knew one kid from my first admission—Elvis (yes, that’s his name)—but I never saw him again after those two weeks of my first admit. (Although, in a strange twist of fate, one of my best college friends was from his hometown, and his mom was his teacher.)

There was Jenny, my freshman year of college—we were on the same dorm floor. I don’t know what happened to her.

But post transplant, I met more people with CF. Sage. Piper. People on Facebook. Kathleen. And Amber.

Unlike Sage, I had met Amber several times. She was the second transplant at our center (I was first, a fact that was a bee in her bonnet for awhile. Cracked me up.). She was younger than me, around my brother’s age (she was born in 1986). She’d been diagnosed with CF the normal way—as a little kid—but she lived nearer the Toledo center so that’s where she got her CF treatment.

We were both writers—she wrote a book called Breathtaking about her experience—and we both went to small Ohio colleges. (She had started at Cedarville University, but couldn’t finish because she got too sick, and eventually graduated from Moody Bible College.) She had a husband and they had adopted a little boy named Noah. He started preschool this month.

Amber had been in rejection for about two years, but she was a force. I mean, I’d never met anyone who was so unapologetic about herself, her life, her goals. She just told you whatever she thought, right out. “You can’t say that to people!” I”d tell her.

“Why not?”

Eventually, some of this rubbed off on me in dealing with our doctors. Ha.

She was just so unapologetically her. Honest, open, passionate, feisty. You always knew what she thought. But she wasn’t mean. She was just open in a way that a lot of people aren’t.

For two years she’d been driving from her home in northwest Ohio to get treatments at The Resort, to try to keep herself alive. There was talk of listing her for a second transplant.

I last saw her in July, at clinic. Clinic days are Mondays and so generally you tend to see other pre and post transplant patients at the same time in the halls and labs and in outpatient radiology. We got to catch up a bit, which was nice, because we hadn’t in awhile. She was carrying around a portable oxygen tank (when I say portable, it really was—it could be slung over your shoulder like a purse), but she was still fiery. Still giving me crap for wearing a skirt to the doctor’s. :-p “Comfort!” She said. And she was right, but I told her I preferred to use my feminine wiles to make the doctors do what I want. I was kidding, and she knew it, and we laughed about it.

I had seen on Instagram that she had missed an outing with her son to the zoo on Labor Day. But I thought she was okay. I have a news feed filter on my facebook app—basically, i don’t see scrolling updates anymore—so I had completely missed that she had been admitted with pneumonia and they had bronched her and she was in the ICU while they figured out a long-term plan.

I messaged her on Wednesday, to ask her a question about treatment. It was my brother’s birthday.

I got from his birthday dinner that night to find a message from her husband—Amber had died on Monday morning.

*

I don’t know why I’m alive, still, and Sage and Amber aren’t. Part of it is the idea that their journey, what God wanted them to do with their lives, was “complete”, I guess. And I’m not done. Which, I mean, is fine, I like being alive. But why me? Why not them too? Why are their husbands widowers, why is Noah without a mom, why did George the dog never see Sage come home? Why? Why do my siblings get to have me, and their siblings don’t?

I don’t know. I know God knows, I know He has his reasons, but I don’t know how much that really helps right now.

In Amber’s case, she had almost fourteen extra years. Her transplant anniversary was September 25. In those fourteen years, she wrote her book, she traveled to speak, she got married, she adopted Noah. She had extra time that she never would’ve had other wise.

But she was still only 33. Sage got an extra year of life, she had a wonderful husband and family and the sweet pups and even sweeter nieces and nephews.

I’m older than both of them.

A lot of people, post transplant, experience the feeling that they need to live for their donor. That they’re sort of entrusted with continuing the donor’s life as well as their own.

I never really felt that—probably because my donor was older, so it wasn’t like another 23 year old had died. (I’m not denigrating my donor’s gift, obviously! OBVIOUSLY. Just trying to explain how I feel.)

But I do feel, now, like I’m living for them. Sometimes I know Sage wants me to do something, to be brave and to ride it out.

And now I’ll feel Amber yelling at me to be honest and tell them how I really feel and figure stuff out, dang it. To just do x.

Both Amber and Sage had strong faith. I know that they’re happy. (I mean, one has to be happy when beholding the beatific vision, right?)

But gosh, I miss them both.

Doing The Best You Can With What You Have

Under the Wave off Kanagawa (Kanagawa oki nami ura), also known as the Great Wave, from the series “Thirty-six Views of Mount Fuji (Fugaku sanjurokkei)”

I was talking to a friend of mine the other day, who, like me, has had some health problems. And we were talking about how the things you do to save your life can later come back and have unplanned consequences.

“I’m dealing with that right now,” I said. We talked a bit more about how frustrating this is—but then we asked, Would we have changed anything?

And the answer is, probably not.

So I thought I’d write about this.

*

After my clinic visits, we always have to wait for blood test results. One of them that we’ve been watching lately is called the A1c, which I talked about in the last post. Basically, it’s a batting average for your blood sugar. And ever since I entered menopause it’s been going up….and up….and up.

This is not good. The more sugar is in your blood, the more that can lead to lots of problems. Problems that I don’t want.

This isn’t CF related diabetes, because my pancreas still works. (I don’t take enzymes to digest my food, so that’s how we know….) But at the same time, my body is clearly becoming insulin resistant.

I’ve been on steroids for 14 years. So the thought is that steroids + menopause=unhappy A1c.

Now, I can’t go off steroids. I’m on a low dose—5 mg a day. There is a 2.5 mg dose. And I might try that. But the problem is, my body has adjusted to them, and my joints, especially like prednisone. A lot. I had CF related arthritis before my transplant and that is helped a lot by the prednisone. I notice when I miss a dose. So when I tried to go off prednisone a few years ago, my body said, “nope.”

Why am I on prednisone? Because I had a transplant.

Which saved my life.

But we know that prednisone has a lot of side effects.

*

Another area where side effects come to play? Cancers. We’ve talked about that a lot here.

And, not pred related, but med related—my hearing loss.

So, these are all things that have happened as a result of staying alive.

But—what were my choices?

Well, to take the meds, or die. Really. It was that stark, in a lot of cases.

So I decided to take the meds. And live with the side effects.

And that can be sort of sucky, to be honest. Because you do things to save your life, but then…there are consequences, and you have to be ready to deal with those. It’s a long-term gamble.

But, and I said this to my friend, we do the best we can with the information we have. We can’t think about 5, 10, 15 years down the road when we’re looking down the barrel of the gun right now.

If you’re in that situation, I know how you feel. I know it’s hard not to google and think about the future. But really, in my opinion, the best thing to do is to talk to your doctors, see what the options are, and then go with what is best—for you, for the situation, for what needs to happen to achieve a good outcome.

Does that mean you’ll be thrilled with what you have to do? Well, no. I’m not thrilled that I’m injecting myself with five units of insulin every night. But it could be worse.

This is what I have to do to stay alive—to see year 15, year 16, year 17….post-transplant.

Now, are there things I won’t do? Yeah. I’ve always said I wouldn’t go for a third transplant. That, to me, is a bridge too far.

But right now, I take the insulin, I adjust my diet, and I do the best I can with what I have.

Trust, Courage, Faith, and Transplants

I had a holy hour last week before Mass, and as I was paging through my Magnificat, I noticed a few things.

Do you see them, too?

Matthew 9:1-8

The Healing of a Paralytic. He entered a boat, made the crossing, and came into his own town. And there people brought to him a paralytic lying on a stretcher. When Jesus saw their faith, he said to the paralytic, “Courage, child, your sins are forgiven.” At that, some of the scribes said to themselves, “This man is blaspheming.” Jesus knew what they were thinking, and said, “Why do you harbor evil thoughts? Which is easier, to say, ‘Your sins are forgiven,’ or to say, ‘Rise and walk’? But that you may know that the Son of Man has authority on earth to forgive sins”—he then said to the paralytic, “Rise, pick up your stretcher, and go home.” He rose and went home. When the crowds saw this they were struck with awe and glorified God who had given such authority to human beings.

And here….

Matthew 9:18-26

The Official’s Daughter and the Woman with a Hemorrhage. While he was saying these things to them, an official came forward, knelt down before him, and said, “My daughter has just died. But come, lay your hand on her, and she will live.” Jesus rose and followed him, and so did his disciples.  A woman suffering hemorrhages for twelve years came up behind him and touched the tassel on his cloak.  She said to herself, “If only I can touch his cloak, I shall be cured.”  Jesus turned around and saw her, and said, “Courage, daughter! Your faith has saved you.” And from that hour the woman was cured.

 When Jesus arrived at the official’s house and saw the flute players and the crowd who were making a commotion,  he said, “Go away! The girl is not dead but sleeping.” And they ridiculed him. When the crowd was put out, he came and took her by the hand, and the little girl arose.  And news of this spread throughout all that land.

Do you see it?

Before Jesus heals these people, he tells them to have courage.

A lot of people tell me I am brave.

I am not brave.

Doing what you have to do to keep on breathing is not brave. It’s necessary. Now, granted, I had to make the choice to go for transplant. If I hadn’t done that, then I wouldn’t be sitting here, writing this, precisely fourteen years later. In fact, as I write this (at 10:47 a.m.), fourteen years ago, I was in the OR. My surgery began around 6:45 in the morning (at least that’s when the epidural started, I think). So, yes, I made the decision to go for transplant. Was that brave? I don’t know. I don’t personally think so.

Really, though, a lot of the time, I did not feel brave. I did not have the courage Jesus is telling these people to have.

But as I looked at these verses, I thought, this is right. They need courage for what’s about to happen. Because it’s scary, to be suddenly plunged into a world you didn’t think was possible, something you had hoped for, but didn’t think would actually happen. It’s sort of terrifying.

These people had faith that Jesus could cure them. And I had faith, too. I’ve always had it. I’ve never doubted my faith. But did I have courage? Did I trust Jesus?

Ah. That’s the slow growing bloom of faith. Faith is the seed. But courage and trust? That’s later. That’s a result. It’s the result of a lot of dark nights and lots of tears and feelings of this is never going to happen.

And I can say that even if I hadn’t been transplanted. Remember, God is always good. I would’ve been cured, either in heaven, or here on earth. And I was lucky that I got my miracle here. Some people aren’t as lucky as I was. That’s the sobering fact.

Throughout, though, Jesus tells us to have courage, because something is happening. And it might be something great. But in the moment, there is fear. There is death, as we see with the little girl. But then…

life.

Even if it’s life on the other side of death. We know how this story ends. We know that death is not the winner.

Trust in Jesus sounds great, and it is great, but until you’ve really had to surrender your will, to say I have no control over this—that’s when you need the courage. It takes courage to trust in God.

Jesus knew that. And I think that’s why he tells these people to have it, to grasp it, to be strong in the moment. Because in the moment when the miracle happens, you might feel like you’re going to drown—save me, Lord, I’m perishing!

If I look brave, it’s really because Jesus gives me the courage to take the steps forward. It’s not my courage at all. It’s his.

My Dominican saint is Bl. Lucy of Narni—and yes, she’s the one C.S. Lewis used as inspiration for both the name “Narnia” and Lucy Pevensie. I’ve always loved Lucy. But remember, Aslan tells Lucy, “Courage, dear heart.”

We need to be reminded to have courage, to keep trusting.

Day In the Life: Yearly Transplant Testing

I thought that I’d give you a little glimpse into a day at clinic, but in order to get the most bang for your reading buck, I chose do chronicle a day where I do yearly testing—as in, clinic, blood draws, X-rays, CT scan, and a DEXA (bone density) screening. So come along with me on Monday’s trip….

6:30 am: Alarm goes off.

7:20 am: Out the door, to the hospital!

It’s not raining! Yay!

The hospital is only 12 miles away form my place, so that makes it easy to get there, but morning rush hour can be a beast. Fortunately, it’s not bad, and I get to the parking garage at 7:45, after being asked for the nth time if I’m a visitor. No, I am a patient. Deep sigh.

Excellent parking!

The hospital has a nature theme, so there are lots of animals and other nature-ish things around. In case you can’t tell, those big green things are acorns.

7:50: Heading to Crossroads Registration

dooooown the long hallways.

I passed this bunny on the way in:

Registration is in the middle of the hospital complex and sometimes it can be a pain. But there was a nice lady behind the desk, the kiosks worked, I had my wrist band, and was on my way to infusion for my first appointment….

Up we go!

The tower building used to be the main hospital—I’ve spent a lot of time here. :) The fourth floor (4AE) where infusion is is where the adult CF floor used to be. It’s where I almost died and it’s where I waited the night my transplant came.

The 4th floor is also home—or was—to the PICU. So yeah, the fourth floor has lots of great memories. (Seriously, some are good. Most are….not.)

It does, however, have a good vending machine.

Anyway!

8:00 Infusion

In the waiting room—Muppet Babies on TV.

Great view, huh?

Since I was early, I got taken back early—yay!—into one of the rooms. Like I said, these used to be patient rooms. Now they’re smaller. Most of infusion is separated by walls and curtained off areas, but since I’m a transplant patient I go into an actual room.

Sometimes infusions last for hours. Really, the reason I go to infusion isn’t to get meds, it’s to get my port accessed for blood draws. So the room has a bed, and the other areas have recliners, if you’re staying. I’m not. This is an in and out thing.

My great nurse comes in and sets things up….

Fortunately no vitamin levels today, so only three tubes. We could not get that out of my veins. So—port!

The blurry part is the strips that have my ID number on them and get attached to various things when the blood goes to the lab.

And yes, everyone must wear PPE—personal protective equipment—when they access the port. Gowns, gloves, masks, and hair nets. It’s like we’re doing surgery here.

So, we’re running ahead of the game, but then my port decides to be dumb, so we have to wrestle with it for ten minutes, but finally it cooperates and we get the blood. Then we flush the line with saline and heparin, and de-access me. Yay!

I am free to go back down to the main floor!

Hallway out to the waiting room.

Doooown we go.

This used to be part of the old ER—the parking lot to the right is where we dropped me off the night of my transplant.

(Bunnies ahead!)

This used to be “main” radiology, and the little hallway you see above used to run between radiology and the ER. This also used to be the main hospital through way—if you went to the end of this hallway you’d reach the main lobby. But I digress!

I’ve been coming to this part of the hospital for twenty-six years. It’s very familiar.

As is this hallway, but now they’re changing it! I don’t know what to do ! :-p

8:40 AM: Chest X-ray

So I have my probably five millionth chest x-ray (that’s a conservative estimate), before which I ran into my post-transplant buddy Amber, who is also going to clinic. It’s always fun to see friends!

So, out of radiology, heading toward clinic, and passing the fish tank and the satellite gift shop.

(Yes. There are two gift shops)

Sharkbait!

Past the coffee bar….

To the elevators, and up to good old fifth floor CF clinic! :) Also been coming through this door for 35 years. :)

9:00 AM: Clinic

This is where I spent the bulk of my time. On a “yearly” clinic day, everyone comes in: the doctors, the dietician, the social workers—and things get a little more in-depth. (Not so much on the doctor end, since I see him every three months.)

*The dietician asks me to talk about what I normally eat: meals and snacks. She’ll then give suggestions. Right now, we’re dealing with weight loss and the silly A1c levels (more on that in a bit), so we want to make sure I’m eating the right combination of things. She made some suggestions, I asked some questions, and it took about a half hour, probably. I really like the dietician so that helps. :)

*My Doctor. I see one of the two docs on the team every three months. This time, he was happy with how I was doing, and we talked about the A1c thing.

Basically, the A1c is a test that looks at how your blood processes sugar all the time—it’s like a batting average. It’s how much sugar “sticks” to your red blood cells. For normal people, you want it to be under 6% For post transplant people, you want it to be in the low 6%, because the prednisone we’re one messes with how our bodies process sugar. So we aren’t aiming for normal people normal, but abnormal normal. :)

I had been testing my blood glucose levels (BGLs) for a few months, and my doctor didn’t think my numbers were really all that bad. (Again, we’re looking at abnormal normal here. Not normal people. ) He did say that if my A1c was up, then we’d probably have to start me on a low-dose, long-acting form of insulin. It wasn’t really because I hadn’t done what they asked—I lost weight, I’m being more active, and I’m checking my BGLs—but because I’ve been on prednisone for 14 years, and I’m in menopause, which, as we know, messes with hormones like nuts.

But my Chest X-ray looked good, and my PFTs were up a point, so lung wise, things are great. Sinus wise, things are great. I’m seeing all my specialists like I’m supposed to and I keep clinic informed of things there.

My doctor wanted me to do some other PFTs so I had to go back to the lab, but we’ll get there in a second. :)

*Social Work: Normally, they just come in and ask how I’m doing and give me a parking token. Since I’m working with some insurance insanity right now, we had more to talk about and they are going to look into some things for me which is massively helpful. So I was happy!

Finally, Pulmonary Function Tests, aka, PFTs.

Normally, when I say I’m doing PFTs, what I mean is I’m doing spirometry. Aka, the thing where you sit down, put clamps on your nose, and breathe in through a tube connected to a computer. You breathe easily for a few breaths (for me it’s two) and then on the third you take in a huge breath, like you’re about to go underwater, then blow it out fast and hard.

You then get results that look like this:

swirly bit is blocked out personal info. :)

Now, this is in liters, and I generally look at percentages. As of yesterday I had about 54% lung function, which is good for me, and that’s the “moderate restrictive defect” part. It’s not anything to worry about, it just says that at the bottom.

I also did two other kinds of tests which check how gases are diffused in my blood and other breathing related things. Those were also fine. So yay there.

11:00 Finished clinic, back to radiology!

I finished in clinic, said goodbye, and my nurse said she’d email me with follow-up things. I then headed back down the elevators,

past the fish….

And back to radiology.

This was a bone density scan that did scans of everything—we did hip focus and lumbar focus, and then the whole body. This is important because prednisone (don’t we love it?!) also causes issues with bone density and causes osteoporosis. Fortunately my bones are AWESOME. I hope they continue to be awesome—I haven’t gotten these results back yet.

FINALLY, the LAST TEST!

11:45 am: Chest CT

so heading back through the center of the hospital, to the Magic Forest!

And into the CT room:

This is just a regular old CT scan of my lungs to make sure we’re not missing any small things that might be happening that regular X-rays don’t pick up. Easy peasy.

So I was free, and said goodbye to the bunny, at around 12:15!

I was really hungry at this point, because I’d only had a little breakfast—you’re not supposed to eat a lot before clinic visits in case something scary shows up in testing and you have to have a bronchoscopy that day. (Yes, that has happened to me before.)

So I was hungry and had walked about a mile and a half, not kidding, in the halls of the hospital. I hit my move goal for the day at 3 PM, so I knew that I’d get a decent workout on this day, lol.

This used to be a longer day—there used to be more tests. So I’m fortunate that this was a pretty quick day and everything went well, except for the silly port being stupid! :)