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!

COVID and Lung Function (ie, you can recover lung function!)

One of the things I keep seeing about COVID is that people recover but have a loss of lung function. And every time I see this, I roll my eyes.

Here’s why.

(For new folks: I have CF, I had a double lung transplant 15 years ago. Pulmonary issues are my bag.)

So, let’s talk about lung funciton.

There are actually different types of lung function, but the type most people are probably talk about it spirometry, which is how much air your lungs can hold, and how much you can blow out in a second. It diagnoses various things and it can tell how much function you have—ie, how many liters of air you can get in your lungs, ie, a percentage.

So, right now, my lung function is about 54%. For me, this is good. This is where I’ve been pretty much since transplant.

Lungs are essentially really strong balloons. If you have normal lungs (ie, not CF lungs), then when you get sick with something like pneumonia, you do lose some lung function. For example, when I had pneumonia a few years ago, my lung function dropped to about 30%. Now, it’s not at 30%—it’s at 54%. Your lungs do recover, just like any other cells in your body. Damaged cells out, new cells in.

As you get older, obviously, this process slows down, and if you’re a smoker, you’re ruining your lungs all the time, STOP IT.

For something like COVID, yes, you will lose lung function initially. We don’t know enough about it to see if this lasts permanently, but my guess is that it doesn’t. Lungs do take awhile to recover. They just do. It’s part of their charm. (Not.) But unless you have CF, which impedes the lungs from healing, then you’re going to be fine, eventually. And even my old, crappy CF lungs recovered to an extent, even after I’d been in a medically induced coma, on a ventilator, for two weeks.

So, if my old crappy lungs could do that, yours can too!

Losing lung function is not the end of the world. Even with 21% lung function, I was in college, I double majored, I had an internship. You can live on it. The problem for a lot of you will be that you’re used to having really good lung function and suddenly it’s gone.

It will—most likely—come back. You have to be patient with the process.

So when I see people freaking about losing lung function, I want to tell them to relax. It will come back. The fact that you’re alive is a miracle, to quote Hamilton. You can get lung function back. It does happen—pretty much all the time, folks. There are also things like pulmonary rehab, which can help you gain back lung function via exercise. There are ways!

So, if you get COVID and you recover, your lungs will recover too. Give them time.

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!

Seven Quick Takes--Live Like Me!

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OK, so my friend Andrea gave me a great idea for this post: About HOW TO LIVE LIKE ME in this time of virus nuttiness! :) So after some book business I will share!

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BOOK BUSINESS :)

The Living Memento Mori book club has kicked off!

You can watch the previous two installments on my facebook page! I’d love to see you at our next meeting on Tuesday, when we’ll talk about chapter three.

Also, my book is on sale at Amazon, so you can get it at a reduced price! Yay!

Also, Ave Maria Press is having a sale!

So you can pick up the book there too!

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OK so, living like me.

One of the things I’ve said in this crazy virus time is that immunosuppressed people like moi actually know how to protect themselves from viruses and things, because we do it all the time.

So now, I shall share my tips with you!

Let’s talk about crowds in general. About people. The first year after my transplant, my team was strict about certain things—no malls in the winter, things like that. I couldn’t go to Mass for the first three or four months post-transplant. Since I’m not almost 15 years out, a lot of those restrictions have eased.

I still don’t really like to fly during flu season and avoid it if possible. But I go to the movies and the mall and all sorts of places. I take precautions. Things like eating from a salad bar, I still don’t do. I try to avoid buffets as much as possible, or, if possible, I try to serve myself first so that I avoid most of the people’s germs getting on the food. These are things I and my family think about. You might not have to think about it, but if you’re worried about the virus, it might behoove you to start thinking about these things and deciding what you are comfortable with—as in, your personal level of risk.

I know people, for example, who, post-transplant, change their clothes if they' are in the hospital for any period of time. I never did that. First off, it would’ve been insanely impractical; I often went from clinic appointments to work. But also, because I was comfortable with that level of “exposure” or “risk.”

So, deciding on your personal risk level is important. And realize that not everyone shares your feelings—and I don’t expect everyone else to live like me! :) But if you want to know my tips, here we go.

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Carry hand sanitizer. Get one of those little key chain things from Bath and Body Works and put hand sanitizer in it. Grab sanitizer whenever you’re in there to stock up on body wash or whatever—it’s almost always on some sort of sale. Then you have a stockpile! I keep one in my desk and also in my purse.

NOW: Here is how you use it.

When you touch things, you use the sanitizer. Touch money? Sanitizer. Use the pen at the credit card kiosk thing at the store? Sanitize. Use the gas pump? Sanitize. Just do it. It becomes a habit. In the hospital rooms at the resort there is a sign that says GEL IN, GEL OUT. That means use the sanitizer gel when you come into a patient’s room, and when you leave it. So think of that. Gel in. Gel out. Clean hands! (You don’t have to use it EVERY TIME YOU TOUCH SOMETHING. You’d go nuts. But use it at various times when you’re in a store. Definitely use it when you leave. Things like that.)

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BRING YOUR OWN WHATEVER

Carry your own pens in your purse, so they’re “clean”, and no one else uses it but you! If you use the pen at the doctor’s office, sanitize your hands after you use it! (Also clean off your cell phone, don’t let other people touch it, and if they do, clean it again. Normally I’m not fanatical about this, but right now, it can’t hurt!)

I have my own Magnificat for a few reasons—because I wanted all the prayers to help me know what the priest is saying at Mass, but now, it’s so I don’t use the communal pew missal! It’s clean! It’s mine! No one else messes with it! Only germs on it are mine. :)

Have tissues in your purse, so that if you have to blow your nose, you can and there you go. :) (Also useful for spitting when you have productive cough—isn’t CF elegant? :-P)

When I fly, I bring wipes, and I wipe down the tray, the seat back, the seat rests, and anything else I’m likely to touch. I am really germaphobic when I fly. Now, who knows, I might be that way at a restaurant.

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Don’t open doors with your hands. Use the handicapped switch plate, if there is one—just bang it with your elbow. Push against doors to open them. Also, if you’re wearing gloves (like regular winter gloves), you’re OK. Basically you want to avoid “high touch surfaces”—if you can’t, then, sanitize and go.

In the bathroom you can try to use a paper towel to open the door after you wash your hands, or just sanitize when you get back to your seat. (B/c not every place has paper towels, but they need to bring them back, since they’re MUCH more effective at removing germs from hands after you wash them than the “air dryer” thing.)

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Demonstrate good germ hygiene. Cough into your elbow. Blow your nose once and toss the tissue. IF YOU ARE SICK STAY HOME PLEASE. This, really, is key. I can do all sorts of things to protect myself, but if you come to church/work/whatever, sick, you are putting people at risk. Please do not be stupid. If you MUST come to work sick, then do whatever you can to avoid infecting others. Don’t sit at he communal lunch table! Cover your cough! Etc.

I am not perfect about all this—ask my mom! :) But I’m still alive 15 years post-transplant so I must be doing something right.

Did I wear masks out and about before? No. Not unless I was on a plane or in a hospital (and even in a hospital under SEVERE duress. I hate wearing them). I do have them—as in, real surgical masks. (I also have cloth ones, thanks to my friend Elizabeth!) I will be wearing them when I go out and I’ll keep a stash in my purse, just like I do with tissues and hand sanitizer.

The whole point of a transplant is to have a life after transplant. I know people who are SERIOUS germaphobes post. They don’t open their windows when someone is cutting grass outside. They don’t open car windows if there’s construction. They’re terrified of leaving their house.

That was never me. The point is to live, but not live stupidly. I try not to do stupid things.

Like I said above, I’m not perfect. But a lot of people are freaking out about being in public with anyone, with touching anything, and I’m going to tell you that there are ways to do it and be safe. There really are. I know because I do it, every day, year in and year out, that don’t involve shutting everything down and never leaving your hobbit hole again. I went to the pool. I went to hockey games. I went to amusement parks.

In short, I had a life.

You can too!

Seven Quick Takes--Easter Friday

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HE IS RISEN! Wooooo!

Let’s try to party as much as we can? OK?

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Little bit of business first—Ave Maria Press is shipping books again, and my book is on sale!

The book’s sale price is $9, so grab a couple, stock up! Or buy some other great books—Joyful Momentum , Pray Fully, and Giving Thanks and Letting Go, are other great reads!

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On the blog this week:

Wednesday Notebook #5

Emily Knits a Cardigan!

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Whew, I feel like I have a lot of things to tell you, but I don’t know if I really do! :)

My birthday was last Thursday—Holy Thursday. Obviously we didn’t “go” to Mass. I watched Bishop Barron’s Mass from Santa Barbara—his Masses are captioned, so that’s why I watch those in particular.

There was cake….

There was mucho birthday yarn….

There were other gifts, too, but I didn’t take photos so I’ll have to talk about them next week. :) Maybe I’ll do a whole birthday post so we can have some fun?

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And Easter was weird, too…..I mean, no Mass, for starters. I did watch a Vigil recording at my home parish. BUT—IT IS STILL EASTER. So even though it’s not what we’re used to, the Resurrection still happened. :) We are still Easter people!

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(LONG!)

A couple things that I’ve been thinking about—If we’re all going to be wearing masks for the near future, I, and other hearing impaired folks, are massively screwed, because we read lips. (Well, some of us do!)

Can I just ask—if someone asks you to pull your mask down when you’re talking to them, can you step back and do that? Because otherwise, I really have no idea what you’re saying. In hospital settings my doctors and nurses don’t wear masks, because we end up having a “What did you say?” marathon. It’s just not practical. I’ve seen some pieces that have talked about face time calls or having someone with you to “translate.”

Massive sigh.

Guys. First off, if I had to bring one of my parents to every doctor’s appointment I had, they’d go nuts. And they can’t go to every one. Second, this denies me my agency. I hate to say that because it’s sounds so jargon-ish, but people need to talk to me, not the other people with me. ME. THE PERSON, THE PATIENT.

There are, apparently, masks with clear sections around the lips for lipreading in development. They have to be FDA approved, for starters. And then put into production. And honestly, I don’t think they’re going to be produced for a while yet, because they’re just not a priority.

It is already hard enough for me to get hospitals to email me or talk to people who aren’t me because I can’t use the phone. But if mask wearing becomes super en vogue, a lot of us are really screwed, and I’m going to be either having meltdowns in stores, or I’ll be answering all the wrong questions and looking like an idiot.

I’m trying not to freak out about something that might not happen. But I would ask you all to be aware—if you’re talking to someone and it seems like they’ve really lost the plot, and you’re wearing a mask, chances are they’re hearing impaired.

Oh, and also—and this is just in general—if I ask you to repeat yourself, please do it. Don’t huff about it or be annoyed about it. Just repeat yourself. You don’t need to start with “I said.” And also DO NOT SAY YOU SAID NOTHING. You clearly said something.

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On that note….happy Friday? :) I’ve been watching a lot of the Met Opera live streams. If you’re an opera fan, be sure to check it out. If not, check it out! Tonight is Madama Butterfly, super popular, and a great first opera! Also, this is a gorgeous production.

Billy Love

Getting to meet Billy on Sunday

The first post I wrote about Billy is, far and away, the most popular thing I’ve ever written.

I’m so glad that so many people got to know this incredible little boy and his fabulous parents. I’m so glad—and overwhelmed in a good way—by all the comments, prayers, and e-notes I’ve received saying they are praying for Billy and his family.

Sadly, Billy passed away in his father’s arms this morning (Tuesday, March 23).

He was loved, and so cared for, until the end.

These six days they had with him were an incredible gift from God. They were a miracle. I’m sure about that. Billy wasn’t expected to last an hour. Instead, he gave his parents almost a week to rejoice and delight in him—and for us to delight in him as well.

Tiffany got to nurse him. Bill changed his diapers. They slept with him on their chests, cooed at him, took videos, rocked him, and loved him. Billy grasped their fingers and looked into their eyes. His grandparents and aunts and uncles delighted in him. And so did all of us.

The day they left the hospital, the membrane that covered Billy’s encephelocele began to break down. The neonatologist said this was to be expected. At home, the brain tissue began to bleed. But through it all Billy and his family had the love and support of their family and the wonderful hospice nurses from The Resort. Billy was kept comfortable and was always in someone’s arms. He was unbelievably loved, and only knew love his entire life.

I was so blessed to be able to see him. I was so blessed to see my best friend hold her child, her first-born, to mother him, to see Bill hold his son against his chest and feed him. I stroked his little ear and marveled at his tiny fingers and even tinier nails. I delighted in him.

On Sunday, we heard the gospel that contains my life verse—Jesus healing the man born blind. My verses are taken from the beginning of the gospel’s ninth chapter:

As Jesus passed by, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither this man nor his parents sinned. He was born blind so that God’s works might be revealed in him.”

I don’t know why I was born the way I was—but God does. I don’t know why Billy was born the way he was—but God does.

Maybe we were both born this way so that we can glorify God. I certainly hope so. That’s what gives me comfort, and that’s why I consider this my life verse.

Billy’s short life glorified God. His parents’ faith and love glorified God. The support, community, love, and prayers of all of you for this little family glorified God.

A few weeks ago, Bill and Tiffany’s church had a luncheon for them, to celebrate Billy and to provide support for Tiff and Bill. At the lunch, we made a quilt, where every guest was invited to write something to Tiff and Bill on a square. The quilt was draped over their couch when I went to visit. It is beautiful.

I had brought my Bible with me, and I spent time going through it, wondering what to write. Finally, I settled on one of my favorite verses. It’s the verses that begins the epilogue of my book.

“God himself will be with them;
he will wipe every tear from their eyes.
Death will be no more;
mourning and crying and pain will be no more,
for the first things have passed away.”

 And the one who was seated on the throne said, “See, I am making all things new.” 

—Revelation 21: 4-5

Today’s Mass reading from Isaiah talks about a time when infants will not die after a few days. When I heard that at the streamed Mass this morning, I almost dropped my coffee mug. Billy was dying, and here Isaiah spoke of a new world, where we would all live the lifespan that God appointed us. There would be no more crying, or death, or sadness. We would all live together to old age. Isn’t that what every parent wants for their child?

We all loved Billy. I thank you for all the love that you gave this family, that you continue to give this family. Please pray for them. At this time, the state of Ohio is essentially shut down—I don’t know what’s going to happen with the funeral. Thankfully, their families are local, so they have that support here in town and they can be together. Please continue to pray for them.

Illness & Piety

The second station: Jesus Carries His Cross

A lot of dioceses are dispensing their Catholics from attending Mass; some are shutting their churches completely. It’s a strange time to be Catholic in America—what do we do without Mass?

We know that we are required to attend Mass unless we are sick, find ourselves really far from Mass, or for other big reasons (you’ve got a sick kid and you have to stay home to take care of her). Not attending Mass is a mortal sin, but, like all mortal sins, that means there are three criteria for it: Grave matter, full knowledge, and deliberate consent.

If you live in a diocese where the bishop has dispensed you from attending Mass, you’re not committing a mortal sin if you don’t go. We don’t know a lot about this virus. What we do know is that a person can have zero symptoms and be contagious! That’s scary.

Even before the dispensation came down from Ohio’s Catholic bishops, my transplant team had told me that they didn’t want me going to Mass. Was I super pleased with this idea? No. Am I listening to them? yes.

To me, this is very like life right after my transplant. I didn’t attend Mass for three months, because I was severely compromised. To go would not have been a good thing. (And also, it was an uncomfortable thing. Most Catholic churches have wooden pews. When you weigh 90 pounds, your bones really feel that wood, let me tell ya.)

I am being obedient to my doctors, and not going. My health is important and I know they want what is best for us.

I’ve seen some people talking about how our physical health isn’t more important than our spiritual health. This is true—but, that doesn’t mean that we should be reckless. There are saints who were told not to do so many penances, that they were being too hard on their bodies. It’s a balance.

I am NOT suggesting that we skip Mass just for the fun of it. I am saying that at this time it’s important to think about other people at Mass. (And really, all the time…)

People like me aren’t going. But that doesn’t mean that there won’t be people at Mass who take care of immunocompromised people, or work with them. If they get sick, that’s a big problem. So let’s remember basic good practices.

If you’re sick, don’t shake hands at the sign of peace! Use hand sanitizer. Cover your cough. Leave some space between yourself and other parishioners, so you don’t run the risk of getting them sick. If you have the flu, stay home!

The criteria I use to determine how sick I am is thus: If I would miss work, then it’s fine for me to stay home. If someone said, let’s go to Chuy’s, and I wouldn’t go because I feel awful, then I’m sick enough to not go to Mass.

I can see why some bishops are closing churches—because people aren’t doing what is right and prudent. They’re going to Mass and spreading germs everywhere, in flu season, all the time. This is not cool, folks. Use the best practices I outlined above all the time, not just now!

Also, Masses still happen with out a congregation. Carthusian monks, for example, say Mass everyday without a congregation. I imagine that priests will still say Mass, even if the church is empty.

So, what can you do if your dioceses has shut your churches, or if you are staying home from Mass?

• We can make a spiritual communion. This is important!

• We can read the Mass readings (Magnificat is offering its app for free right now—daily Mass readings and devotional readings every day!)

• We can pray the rosary, or parts of the Liturgy of the Hours.

• We can perform spiritual reading.

In this time, you might want to check on your neighbors who are sick or older, and see if you can do anything for them to help them out. Maybe you could pick up their groceries for them or something, or put gas in their car.

Just because we can’t get to Mass doesn’t mean that we can’t still practice our faith. Yes, the Mass is the source and summit of our lives. Yes, it’s vital.

But sometimes life intervenes and we can’t worship the way we’d like to. I’ve experienced that a lot in my life.

St. Teresa of Avila once received instructions from God to build her convent somewhere. Her bishop then told her to build her convent somewhere else. Teresa obeyed the bishop, because she knew she owed obedience to him. She said later, when God asked her about this, that she knew her bishop was telling her what to do and she owed him obedience; she might have imagined what God told her to do. (This story was in the book Be Holy. I’m paraphrasing here.)

Keep calm, guys, and carry on—and PRAY. Don’t rage against your bishop and take offense. Pray. If you can go to Mass, weigh if it’s prudent for you and your family. If you go, act responsibly—don’t crowd pews, cover your cough, don’t shake hands at the sign of peace, etc.

The important thing is to pray, even if you can’t get to Mass.

Seven Quick Takes--Second Friday of Lent

Linking up with Kelly!

I took this picture before Mass last week—I couldn’t resist the light.

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On the blog this week:

Virus Lent

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There’s a story about St. Teresa of Avila and Lent that I think is a propos. She once had a great program of Lenten penances planned. She was going to do everything. It was going to be great!

Then she was sick. For all of Lent. And she complained to the Lord about this. “Lord, I had so many great penances to offer you,” etc.

“This is my Lent for you,” He told her.

Looks like, no matter what our penances and plans were, we’re getting the Lent that Jesus wants for us right now.

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Like I wrote in my last post, I’m essentially living like I did right after my transplant—not really leaving my house, people coming to me. I’m not actually opposed to this, but what makes it scary for me is that the world around me is caught up in it, too. Whenever I’ve been sick before, there’s always been some sense of normalcy around me to cling to—school went on, I could go to the movies when I felt better, etc.

Now, nothing’s normal. Here, schools are closed starting Monday. The bishops’ conference of Ohio has dispensed us all from the obligation to attend Mass—and I wasn’t going to do that anyway, on the advice of my doctors. It’s just weird.

Last night after dinner I went and stood on my porch for a minute. It was a lovely night—the sun was setting, it was warm, I could hear the train coming through town. But it felt so eerily calm, like it does before a big storm.

All that to say, that it’s a weird time.

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If you’re in the same boat I am and can’t go to Mass, make a spiritual communion! And also try to keep the Sabbath holy—which we should be doing anyway, but if nothing else, this gives us time to really use Sunday as a day of rest. We all need rest right now! There are no sports to watch, and probably no sports games to go to. There’s nothing else. So let’s bring back the Sabbath! Let’s live it! (book recommendation: Souls at Rest.)

And also, let’s pray with our families! We should be doing that anyway, but let’s bring it back, because man do we all need prayer right now! (Book recommendation: The Little Oratory)

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If we’re doing book recs, um, mine? :)

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So while I’m here in my cloister I’ve made a list of things to do—writing, of course, so there will be ore writing here on the blog! I’m going to do the long awaited Outlander and Catholicism series, so be on the lookout for that! I’ll also be writing about illness and virtue—how we practice faith in times like this—and I’ll be doing a post on St. Damien of Molokai, who seems appropriate right now.

I’m also going to be baking a lot—mostly bread. I’ve been wanting to get in to the habit of making my own bread, and now I have the time to do it….and I also have time to knit like a crazy person. I have all this time…of course there is prayer, also. Lenten practices are still going. And cleaning the house, of course.

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I’ll also be watching a lot of movies, starting with the Hobbit series, because, why not, and also Knives Out, which I never saw in the theaters but am excited to watch now. I have to have some exciement, right?

Seven Quick Takes--Authenticity, Book Signings, Etc.

linking up with Kelly!

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From the blog this week:

“Quote Me” podcast and book signing on Saturday!

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So, authenticity.

In one of my interviews for Living Memento Mori, I was asked if it was hard to be so open about my health in the book.

“No.” I said. I didn’t even have to think about this. To me, it wasn’t hard, it was necessary. For me to be real, to really reach the reader, I had to be authentic. And that meant showing what really goes on.

I don’t show everything in the book. The book is limited in scope, to an extent, and so not everything is there, and not everything ever will be. There are things that are private.

But for the most part, I wanted to share how I really feel. I do yell at God. I get mad. I get angry. I throw things. Sometimes I act like a five year old. Like last night.

There were a lot of nit-picky things going on. I had whiffed an interview question. It’s Valentine’s Day and I’m single. And I really really really didn’t want to be a pincushion last night. I didn’t want to test my blood sugar before I went to bed. I didn’t want to shoot insulin into myself with crappy pen needles. I just did not want to.

I grouched a bit. I cried some. And then I did it. And I shared how I felt on Twitter.

Why?

Not for pity or sympathy of whatever. But because I want to be authentic with people. I want to be real. And while I do, generally, handle things with some degree of aplomb, sometimes I am just done. Sometimes, in the words of the musical Side Show, “I want to be like everyone else.”

I’m not.

So every so often, I have a breakdown, but then I just do it again. I feel a lot better today.

But I always want to be honest with my readers. I don’t want you to think I just sail along on a boat of Saint-like acceptance and Oh, everything is wonderful all the time!

It’s not. And that’s just fine. It’s OK to get angry. The key is to do it and then pick up again.

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OK, so, whew, got that done. :)

BOOK SIGNING TOMORROW! Catholic Women’s Conference here in town! YES, you can get tickets at the door!

I am signing during the breakfast break after Mass at the Ave Maria Press table, which is usually right by the eating area. Come say hi! I would love to meet you and sign your book!

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Next week I think two things happen—my Girlfriends interview with Danielle Bean goes live, and I think an interview for Aleteia (Catholic news/lifestyle website) goes up. I will link to them here and on SM and on the media page when they do!

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If you would like a signed book, email me and we’ll do it! They’re $20 and that includes shipping!

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OUTLANDER is back!

I love Outlander. It’s my favorite. I flew threw the series when I was having all my heart thythm issues in 2010—so much so that the clerk at the local B&N told my dad, “Does she know that this is the last one?” when I got to the (then) last installment.

The TV series airs on Starz and season 5 starts on Sunday—but if you have the Starz app, like I do, you can watch the season premiere now! Yay!

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Normal reminders to buy the book, sign up for the newsletter, etc. And please leave a review on Amazon if you’ve read the book! Thank you thank you!

Seven Quick Takes--My baby is two weeks old, upcoming events, knitting, and common sense

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It’s Seven Quick Takes time, YAYYYY!

Posts from this week:

Know Your Body, Meds Have Side Effects, and Being Your Own Health Care Advocate

Yarn Along

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The first post is important, I think. Yes, it’s long. But people need to know that you have to be your own medical advocate—you can’t depend on other people all the time, sadly!—and, yes, medicines have side effects that you may or may not get. I think a lot of people freak out at the idea that meds can cause bad things to happen to you, and yes, that is true. I lost my hearing because of meds. But, um, also, alive. It’s a trade off.

Anyway, it’s a long post but I think it’s worth reading as just a general part of adulting. Know your body!

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My book is two weeks old! Yayyyyy!

I’ve been doing a lot of interviews, getting lots of good reviews, and I’m really happy about all of that. If you want to get a copy, go here for all the options.

Also, if you buy it at Ave Maria Press, you can get 25% off! Yay! Enter MEMENTO at check out!

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I still haven’t checked out bookstores to see if my book is there, so hopefully I’ll see it “in the wild” soon. :) If you do, take a picture and tag me on Instagram!

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It’s actually going to snow tonight. We’ve had a pretty mild winter so the idea of snow is like, oh, cold? Snow? Winter? What is this madness? Oh well.

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I’m going to be at the Columbus Catholic Women’s Conference next weekend signing my book! Come join me!

If you want to read articles or listen to podcasts and interviews, I’m linking them on the “media” page under Living Memento Mori at the top of the site. So you won’t miss anything. If the story or interview can be linked, I will link it, and I’ll also post on social media (and here, of course) about interviews as they air!

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If you’ve read the book, you know about Rita, one of the best nurses at The Resort and a great friend. She and I are going out to dinner tonight to celebrate the publication, so yay!!!!

Have a good weekend!

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.

SQT--A reaaaaaallly interesting week!

Linking up with Kelly!

And it’s gonna be fast quick takes today!

1. OK, so my body does weird things before big events. Jeopardy taping? Pneumonia. I guess for the book release month, my blood sugars will go nuts! But it’s OK, we’ve got them under control now.

2. But to get them under control, Dad and I spent 25 hours at OSU, in the ER/observation, so that was….fun. Best not discussed.

3. So I’m taking two types of insulin right now—a rapid acting one before I eat, and an “intermediate” acting one. These have both made my body much happier! There is sleep! There is energy! My cells rejoice in insulin!

4. But……sigh. OK, doctors’ offices. You must have a system for the hearing impaired to contact you. MyChart doesn’t always work. You must have ways of contact that a patient can do independently! I couldn’t directly contact my doctor’s office last Friday and that led to a really crappy weekend! Today, I can’t select my doctor on MyChart, so I had to contact my FABULOUS transplant coordinator, who will send them numbers that I emailed her! Guys, you can’t think that your lovely “secure system” is going to be the best way for people to get care if they’re hearing impaired! I RAGE ABOUT THIS.

5. STATE OF THE BOOK WICKET is here!

6. Maybe this is the time to show everyone the handy chart about emergency room vs urgent care usage…..

7. OK, that’s it for this week, go read the link at point 5! YAY BOOK! Two weeks to PUB DAY!!!!!!

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.

Why Medicare for All Is a Terrible Idea

OK, I know, some of you don’t like political posts.

And this is political, in the sense that, all the candidates who are pushing “Medicare for All” are not candidates that should be voted for, amen.

But, really, this is a look at how Medicare “works”—as someone who is currently going through the incredibly difficult work of selecting a plan.

Here’s why it’s hard:

1. I take a medication that must be the brand medication. I cannot take the generic because we can’t get what’s called a “therapeutic level” with it. The drug in question? Prograf. The drug that basically keeps me alive. So, I have to take brand name Prograf, which is expensive.

2. I see all the normal doctors people see—dentist, eye doctor, etc. But I also see special specialists. Meaning, doctors that are not normal run of the mill doctors.

3. I also see these doctors in two separate hospital systems—The Resort, and OSU (Ohio State).

So, we must find a plan that covers my meds, my doctors, and my hospitals.

Under private insurance, this was not hard at all. I just typed in names and meds, saw they were covered, signed up. Done. It took less than a half hour.

Private insurance did not like to pay for prograf, but it did. And if it didn’t, then the manufacturer had a Prograf saver card I could use to reduce the out of pocket costs.

Now, I have Medicare.

And here are all the problems.

1. There are plans that refuse to cover prograf. It’s not even in their formulary. It just says, “not covered.” Even though this med is basically what keeps me alive. There are many, many plans who do not cover it in any way, shape, or form.

2. There are plans that cover the med, but not my doctors. As in, one entire group of plans refuses to cover any OSU doctors. OHIO STATE! One of the top-ranked systems in the country!

These are, to put it mildly, big problems.

My dad and I have spent at least three days—as in, hours upon hours!—on the phone with people, looking at plans on line, until our eyes have crossed and our brains have melted.

Because a plan will cover some of these things—but then we’ll see, oh, there’s no out of pocket max. Well, that’s gonna get expensive, quickly.

They’ll cover my endocrinologist, but not my transplant doctor!

They’ll cover doctors, but not meds!

Or meds, but not doctors or hospitals!

Do we see the problem here?

Oh, and to make it even better, Medicaid will cover Prograf. But Medicare plans don’t!

And the copay card? Doesn’t work for Medicare patients. Only private insurance patients—when Prograf was covered by my private insurance!

This is insanity.

They’ll cover things like acupuncture and chiropractic, but not the med that keeps me alive. Not top doctors at top medical facilities. Nah. That’s too hard.

Also, it’s insanely complicated to compare plans. They don’t always list what doctors are covered, or what meds are covered. They don’t mention facilities. They put in stuff like Silver Sneakers—well, goodie, a free gym pass!—but not stuff that is actually life saving and vital!

How about we not cover gym costs, and instead, cover medications that keep people alive?

Oh, and. This is the good part.

Here’s an NYT story on this issue. Medicare will cover transplant meds if the transplant occurred while the person was on Medicare. NOT BEFORE.

This is the biggest piece of insanity I have ever seen. These are drugs that we know work. They are not new therapies, they’re not snake oil. They are proven. And yet, no, I’m sorry, we won’t cover that.

We have presidential candidates saying that this insanely complicated, twisted, insane system should be the one health care provider for the entire nation?

No.

Or, to be spicy, HELL NO.

Greetings From the Resort

Yes, I’m back in the Resort.

For new readers, I started calling Children’s Hospital “The Resort” once I started working, because all my vacation days ended up being spent here, and the name stuck.

On Thursday I started having a lot of abdominal pain. After I talked to the nurses at clinic, they mentioned that I had gall stones on my last CT scan that I had when I had the Awful, Nasty Stomach Bug. So back I went to the local ER (It’s run by a local hospital, so it’s a good one, not like some tiny little thing), where they ran tests and determined that I had….pancreatitis.

My old friend!

I haven’t had a bout of this in years, but once that diagnosis came in, I knew what I was in for. So Mom and I went back to my place, I packed a bag, and dad drove me to Children’s, where I am currently writing this.

The treatment for pancreatitis is: IV fluids, anti-nausea meds, and pain meds. That’s in. Blood is drawn daily to see how the lipase (a pancreatic enzyme) is doing—with pancreatitis this number is high. We want it to be around 50 or so, and today mine was 480 sometimes, which is still better than the 1600 it was when I was first admitted!

Giselle the Unicorn.

So, all in all, not too bad, except for being in a hospital, but even that’s not bad, because I don’t really get bothered. There’s no fancy treatment for this, just meds through an IV line. At some point I’ll try eating “clears” (broth, jello, etc.) and if that stays down then we’ll try more substantial foods.

So, that’s where I am right now. But big news coming later this week! (If you already subscribe to the blog, you know what the news is….)

Endocrinology (Or: Not Personal Failure!)

So the past two weeks have been sort of nuts, and hence why I haven’t written. So I’ll bring you up to speed and explain the title.

After my last post, I got a killer stomach bug, and I ended up in the ER. When you’re me—meaning, you take a lot of meds, you have blood sugar level issues, and you need to be able to keep things down—you don’t really “wait out” a stomach bug. (In fact, I learned today I get to give myself four hours before going to an ER for treatment.)

So after a day of nausea and 12 hours of vomiting (WHAT JOY) and abdominal pain, I took myself to the local free-standing ER, which is excellent. My mom met me there, Dad drove my car home, and four hours later I’d had IV fluids, anti-emetics (anti-vomiting meds), and pain meds, I felt a lot better, everything calmed down, and I got to go home. I spend Tuesday sort of out of it. Wednesday had a ton of energy and did laundry and some taking out of trash. Thursday, pretty back to normal—but I needed to take my car to the service place to get a tire patched. Friday, normalcy! Saturday, Harry Potter tea with my writers ‘ group (post on that coming), and I went to Mass for the first time in two weeks. Hallelujah!

So, that was last week. This week, the tire repair didn’t hold, so I had to call AAA to put the spare on on Monday, get the tire checked out Tuesday, to find out I need a new tire, which will be on my car tomorrow, which meant that I had to borrow my mom’s car to get to my endocrinology appointment today.

Honestly, I was really freaked about this appointment. I had visions of insulin shots multiple times a day and constant finger sticks and food restrictions and all sorts of evil things conjured by the word “diabetes.” I really, really, really didn’t want a heavy-duty diagnosis. I was freaked out.

I had a long appointment today (2 hours), where I met with great, wonderful, smart people, who went over my history and all my labs with a fine-tooth comb. They looked at everything. They asked about family history. The fact that my mom has five sisters, and that my grandma is almost 90 and in pretty darn good health, is great for my doctors because there’s a lot of female family history to look at when we’re talking about health indicators.

My endocrinologist thinks that what I have is a type of CF related diabetes (CFRD), which is not Type 1 diabetes, even though insulin is involved, and it’s not type 2 diabetes. It’s its own special thing. But what this did for me was release a big burden I’d been carrying around—the idea that I had done this to myself. That if I had done more or tried harder or whatever, that I wouldn’t have been in that office.

That’s not the case. Dr. W (the new doc) said that just about every CF person will get CFRD at some point, because we’re living longer. The severity will vary, but it’s probably going to happen. Throw in the fact that I’m on three drugs that mess around with blood sugar production and regulation, and, yeah. This was, most likely, going to happen.

We don’t exactly have a plan yet, because we need data, which will be provided by two things:

Me checking my blood glucose level at various times a day

Me wearing a continuous glucose monitor (CGM) for a week. This little do-dad checks your blood sugar every five minutes with a little sensor. So we’ll get tons of data, cascades of data! And with that data, we can make a plan.

The other great thing as that this doctor asked me if I was OK with this plan. That’s so important to me. I want to be OK with what we’re doing. And with this doctor, I do. I feel secure and I trust her to do the right thing to get things under control.

So even though I’m going to be doing a lot of finger sticks over the next few days/weeks, I don’t really mind. Because I don’t feel like a total failure, like I brought this upon myself. I didn’t. This is the result of being 37 with CF and a double-lung transplant. It’s the way it goes.

We get the data, we make a plan, and we move on.

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

Seven Quick Takes--writing, pro-life ministry, and Washer Monster

Linking up with Kelli!

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Around these parts this week:

Doing the best you can with what you have

Prime Day deals—Prime Day is over, but if you haven’t checked in with Take Up & Read lately, we have a lot of gorgeous studies! Maybe it’s time to start Christmas shopping?

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This is sort of a…well, a sad take. But.

On Twitter this week I saw a woman writing about how she didn’t know how to get a casket for her miscarried child.

The Trappist monks of New Melleray Abbey provide infant and child caskets free to families.

Free. Gratis. No charge.

Go here, and scroll down to “child”, and select a size.

These are beautiful handmade caskets. In addition to the caskets, the monks will plant a memorial tree for your child, and remember your child in a special Mass. The parents also receive a keepsake cross made of th same wood as the casket.

If you need one IMMEDIATELY, call them at:

888-433-6934

They answer the phone 24 hours a day.

They also have a child casket fund, where people can donate to support this ministry, here.

This is such a beautiful service they provide. I know it’s terribly hard to think about, but I have had friends who have lost children to miscarriage. This makes one part of it easier—you don’t have to make your child’s casket or fumble around at a funeral home. The monks will do it, beautifully, for free.

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The book skips along! It’s done with copy edits so my editor has it now and is working on it. No cover art yet but the minute I have it I’ll share with you (subscribers find out first!)

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This week I finished a long linen scarf I knit to use in the summer. I love it. It’s a gorgeous color. So I went to block it in my washing machine. I had run a test piece of linen before and it came out fine so I thought I’d be fine this time.

NOPE.

Washer Monster wanted to eat it.

via GIPHY

But my lovely maintenance man here saved it! Yay!

Yay! It’s saved!

I’m always amazed at how well linen blocks. It’s just great. Such a difference!

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I’m on an Emily Blunt movie binge lately. I watched The Devil Wears Prada and A Quiet Place this week and I’m going to watch Mary Poppins Returns tonight. (My movie BF Colin F. is in it too. I do love his movies.)

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Sometimes we live in Hoth, here in Ohio, and sometimes it’s in the 90s with a heat index giving us a temp of 114. Yeah, it’s that day. So, movie binging and working on house projects today!

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It feels hard to believe that July is half over and that Target has school supply displays up. When do the schools in your area go back? Ours tend to go back in the middle of August now, but they get out before June.