Transplant 101: How Transplants Work

One of the best parts of post-transplant life—having nieces!

It’s the end of Donate Life month, and I’ve realized that a lot of people don’t know how transplants actually work. As in, I think a lot of people think that you have the transplant and….that’s it! Poof! Magic!

As much as I wish it were Poof! Magic!, it’s not quite that simple.

The big barrier for transplant wasn’t the actual surgery; surgeons knew how to do that part. The issue was keeping the body from destroying a foreign object, ie, the donated organ (s).

Your immune system is exquisitely calibrated. It knows what’s “you” and what isn’t you, and that’s why it works—it fights things that aren’t you (ie, pathogens) so that you don’t get sick. It likes to kill things that don’t belong, and while that’s great when it’s germs it’s killing, it’s not so great when it’s a vital organ.

So transplants couldn’t happen until immunosuppressive drugs were found. These drugs do what their name says—they suppress the immune system, basically hacking it so that it doesn’t work as well, which means it doesn’t try to kill the thing that “isn’t you”, but is keeping “you” alive. When the body tries to kick out the transplanted part, that’s called rejection. (Rejection is complicated, and there are different types. I’m trying to keep this simple, so I’m just calling it all rejection.)

Your chances for rejection are highest immediately after transplant. At this point in my post-transplant life, rejection isn't really a huge concern. Bu right after, it definitely is the highest concern. So the immunosuppressive meds are at their highest doses immediately post-transplant, and in the years following. As you get father out, the meds decrease.

I’m on three types of medications, broadly:

• Prograf (tacrolimus), aka, “tac.” This is my immunosuppressant. I will take it the rest of my life. When I first had my transplant, I was on a higher dose than I am now, and I was also on another immunosuppressant, which we dropped many years ago now.

• Steroids, which are also immunosuppressive. I am on five milligrams of prednisone, and I will be on that for the rest of my life. Doctors are now starting to experiment with taking people off steroids a few years post-transplant. We tried that with me, but my body did not cooperate. (My body likes steroids, because I have CF related arthritis. Steroids make joints happy!)

• Prophylactic antibiotics, meaning, I’m taking these not because I’m sick, but so I don’t get sick. I take azithromycin (if you’e had a Z-pack, you’ve had this med) every day. I like to compare myself to a chlorinated pool.

• I also take a few other things that aren’t directly related to transplant/immunosuppression.

Now, keep in mind that we have to “hack” my immune system on a daily basis so that it won’t figure out that my lungs aren’t mine. That’s what these drugs do. I will take them forever and ever, amen.

It is a delicate dance—we want to keep my immune system in the dark, so to speak, but we also don’t want it to be so suppressed that I’m getting every single germ that’s out there. That’s not good.

At this point, what my team and I are worried about treating are the side effects of these medications. If you hack your immune system for seventeen plus years, as we’ve done for me, it’s going to….well, not work right! This puts me at a much higher risk of cancer, especially skin cancer, which is why I see my dermatologist for a full body check every six months, and why I check myself over regularly and am very aware of anything strange that pops up on my skin. (I’m going to my doctor on Friday, actually, to get a spot checked out. Better safe than sorry.) I am diabetic because of the meds. The meds cause other side effects, too, which vary from person to person.

But if you stop taking these meds, BAD THINGS WILL HAPPEN.

And this isn’t just transplant meds. I lost my hearing because of ototoxic (toxic to the ear) medications pre-transplant. We needed strong IV antibiotics to keep me alive, and that has the effect of me losing my hearing and needing my cochlear implant. But, that’s what I chose. (Now, CF doctors are working to be more cognizant of this, yay! I like!) Chemotherapy is probably the best known treatment that causes a lot of side effects that are not, to put it mildly, great.

But these are the choices we make to stay alive.

I’m on many fewer meds than I was at the beginning. At the beginning of my transplant life, I was on four antibiotics daily—now it’s one. I was on at least 40 milligrams of steroids—now it’s 5.

All of this is a big part of why finding the best possible donor match is so imperative. The closer the match is, the lower your dose of suppression can be, because we don’t have to “hack” it as much. I am very lucky that I have a very good match.

So, that’s how transplants work! If you have any questions, drop them below and I’ll try to answer them as best I can! :)

Jinx

Man I hate it when I jinx myself…

So I write a post about how to live Lent when life is Lent-y, and I think, oh this hasn’t happened for awhile…

AND THEN IT HAPPENS.

Sigh. I bring these things upon myself!

Well, not really. It has been a very long time since I’ve had any sort of pulmonary infection issues so I was probably due, to be honest. But I’m doing a course of oral antibiotics and it’s working beautifully, so I feel much better. I’m still dealing with some lingering chest pain, but I know that will get better as the rest of my body heals. I have a week to go on the antibiotics and I’m being very intentional right now in giving my body what it wants (liquids, rest, stretches!) and adding back my Peloton workouts when it feels right to do it. I’m hoping to jump back in with yoga this week (short classes!) to help get some mobility back to my lower right chest, because that’s where the pain was, and I need to start opening that area back up with some good (gentle!) stretches.

I’ve also learned that I can have a lung infection and my blood glucose will be fine. That’s weird, but oh well, t least I know now. The more I learn about blood glucose the more I realize it really is a crazy thing!

So the reason it’s been quiet around here is because of all of the above. I’m very glad to be on the upswing!

Currently on the needles: a long shawl with an interesting construction, which is being knit up in silk! I’ve never knit with silk before and I’m really enjoying it.

Living Lent when your life is pretty Lent-y!

There have been a lot of times in my life when Lent rolls around, people ask me what I’m doing for Lent, and I’m thinking, “MY LIFE IS CURRENTLY LENT.” (Not the case this year.)

February and March used to be pretty “sick” times in my life—it was near the end of the school year so my body was getting tired of the early wakes and the heavy schedule. I’d be doing IV antibiotics, or I’d have TB (That was a fun Lent!), or I was in the hospital for some sort of other thing or another.

Life was pretty Lenty.

Pre-transplant, I was not allowed to fast. And I’m not allowed to fast now because I’m diabetic. There was a, oh, five year period where I could fast, and I tried it, and wow, I was so not good at it. Really, really bad.

But all this to say that some years, your Lent chooses you, and you really might not have to do much else.

If you’re in that position, don’t be hard on yourself. Remember what happened to St. Teresa of Avila: One Lent, she had all these great plans for the Lord. She was going to suffer ALL THE THINGS! She was going to do ALL THE PENANCES!

And then she got sick and was in bed for all of Lent. And she decided to complain to the Lord about this.

“Lord,” she said, “I had all these GREAT IDEAS FOR LENT and then you RUINED THEM. (I’m paraphrasing.)”

“That was your plan for Lent,” He said. “This is my plan for your Lent.”

Oh. Well then.

St. Teresa did not do all the things.

It’s OK if you can’t make it to stations every Friday or daily Mass or do whatever other penance you’ve come up with. Bodies can be super dumb. Or, sometimes, what the Lord wants from you is something else.

Either way, don’t beat yourself up if your life is super Lent-y at the moment and you cannot do ALL THE THINGS! Do what you can do, offer up what you can’t, and remember St. Teresa.

Medicine, Accommodation, and Rudeness

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

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

Thought 1: Needing Medication Isn’t A Bad Thing

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

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

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

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

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

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

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

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

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

Two: The Question of Accommodation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Three: RUDENESS!

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

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

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

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

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

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

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

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

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

Thus endeth the medical lesson!

New port is in!

Hospital lobby at 6:45 AM :)

The port is dead, long live the port!

So last Thursday I had my old port—17 years, RIP!—taken out, and a new POWER PORT put in! (Power ports enable me to get things like contrast for CT scans through my port instead of trying to find a vein for that. They’re GOOD!)

This was a sort of complicated thing, because it involved both sides of my chest. I wasn’t sure where they’d put the new port, and the doctors decided to put it on my right side. So they had to take out the old port—which was buried pretty well, because I weighed ninety pounds when it was put in!—and then put in the new port on the right side, which apparently is the “preferred side” for port placement. Whatever!

This wasn’t done in an OR or under general anesthesia, like my first one was. This was “twilight sedation”, which is what I get for my bronchoscopies—you’re sedated, but you can still talk and respond to commands. I don’t remember anything from the actual procedure. They apparently had to give me more sedation than they thought, probably for two reasons: one, they had to go int through my neck to place the new port and I HATE having my neck messed with, and two, my face was covered by the surgical drape, and I don’t like that either. I was sort of freaking out about that when I fell asleep, so I’ not surprised my subconscious was still freaking out.

(It’s weird. I don’t mind masks and things on my face—like aerosol or oxygen masks. But if I’m flat on my back I hate it. I don’t know why. It’s a thing!)

Anyway, we were home by lunch time. The dressings are off, and now I have steri-strips, instead of stitches, that are still healing. This limits my ability to turn my head and how I move my upper body, which is a bit annoying, and of course impairs driving (can’t turn my head all the way to see things).

I’m not in a lot of pain which is nice. Sleeping is still sort of hard. But fortunately this week is entirely clear so I can just hang out at home and work on knitted Christmas gifts and read while things heal up.

So, I’m doing fine, glad to have my new port!

Therapy

(No, not that kind of therapy.)

So I had my seventeenth yearly post transplant checkup (well really 16th, since there wasn’t one when I first got my new lungs, haha). It went well. My numbers are rock solid and perfection. “Everything’s coming up roses!”

But.

(You knew there was a but.)

As you probably know, I do not like exercise. I missed out on the genetic lottery in this sense—my brother runs marathons (Boston, New York, etc.) and coaches cross country. My sister played high school and college tennis, runs, and her husband (who is not connected to me genetically, obviously, but still) runs marathons as well, and my sister in law was a gymnast, and also runs. I am surrounded by super fit people who like to work out and are good at doing things with their bodies.

I am….not.

Now, over the this year, I’ve been working at getting better at working out because I know I need to be in better shape. At my clinic visit, my transplant coordinator said I absolutely have to be working out 5 times a week for 30 minutes. Must. Have to. Non-negotiable.

Then she said the magic thing. “Just think of it as doing your CF therapies.”

CF therapies—or “therapy” as we called it in our house—consist of nebulizer treatments and doing the vest or other postural drainage techniques (PT) to get the sticky mucus out of the lungs. This took, at minimum, 30-45 minutes, twice a day. In the evening it took longer because I did another nebulizer med, and if I was doing inhaled antibiotics, it could easily take 90 minutes to two hours. This was twice, or three times, a day. Every day.

I had never thought about exercise as being a “replacement” for daily therapy. Because honestly, therapy wasn’t fun. I mean it could be—I could watch movies and things while it was on—but I couldn’t really do homework because if I looked down the nebulizer could drip on my work or the textbook; I couldn’t read because of the vest vibrations (shaking books!). I could do some work on a computer though, and I did that more often in the early 2000s (pre-transplant). But it was a pain.

Exercise is once a day, for thirty minutes, which is way less daily time than the therapies took. It’s one and done. I don’t have to like it, but I do have to do it, the same way I did therapy.

For some reason I had never made this connection. But once it was made, it….made sense.

So I am almost a week into this and it’s been….not bad. I’m using the Peloton app, because it adds music and fun instructors, and it’s captioned (hallelujah!), and it tracks my heart rate on the screen so I don’t have to be looking at my watch all the time. (I do not have a Peloton machine. I use the machines in the complex gym—there’s no bike there, so it’s all treadmill stuff.)

Right now because I’m starting with 20 minutes on the treadmill, five times a week.

I don’t have to like it, but I do have to do it. Because I want to be here for Patty and Maddie and new baby DeArdo. That’s worth it to me. (And hello, there are Broadway themed walks, sign me up.)

So, here we go.

Mid August Daybook

Flowers at the local French cafe

Outside my window::

Sunny and breezy—great late summer weather.

Listening to::

The Rings of Power soundtrack. I’m very excited for the show to start on September 2!

Wearing::

crops and a gray t-shirt—a uniform of sorts for me.

Grateful for::

Conversations with Di, Patty, and Johnny.

Good Echo results!

new knitting projects

Pondering::

Functional fitness. As I wrote in the last daybook , this is important in just keeping up the house and doing regular things, but it’s also important in giving my body the tools it needs to “get through” things. If I’m stronger at the outset then I have less to lose if/when I get sick.

Like right now, I have a sinus infection. Wheeeeeee again. I’ve had a lot of them sine 2020, and that’s unusual for me. I had a long-overdue sinus surgery last December, but that didn’t seem to solve the problem the way it normally does.

So right now I’m on Cipro, which is a great, super powerful antibiotic which will clear up the sinuses—but will also mess with my tendons. So that is a bummer when it comes to the whole “functional fitness” thing, because I really do not want to rupture a tendon.

This means that my workouts have to change—I can’t be doing things like treadmill workouts. So I’m doing gentler things, but things that my body still needs, like yoga/stretches for my body, especially my legs (because my legs get really tight), and things I can do that don’t put a lot of stress on my knees or Achilles’ tendon, because these are the areas that tend to get grumpy with me. I’ve gotten some permanent injury to my right knee because I didn’t listen to my body when I’ve been on Cipro, so I don’t want to repeat that.

It’s a fine line, but it’s one that I have to figure out how to manage, and I think I have a good plan for the next two weeks that I’m on this medication.

Reading::

The Silmarillion,* The Book of Lost Tales (Part 1),* (yes, lots of Tolkien right now!) The Crossing* (my parents are really into this book series and so I’ve started reading them too), and Memories Before and After The Sound of Music.*

In case you’re wondering how I read multiple books at one time—I was an English Lit major in college (and Political Science), so I’m very good at reading multiple books at one time! I’m reading Silmarillion almost like I’d read it for a class; I take it slowly because there are a lot of names and places and things to remember. I try to read 1-2 chapters a day. The other books I’m not reading like that. But I’m very good at juggling books and plot lines.

Creating::

A '“stupid easy” shawl with some of the gorgeous yarn I bought on the yarn crawl!

The pattern is Casapinka’s “Woven”, which I had bought and forgot about in the wilds of my desk, but as part of the house reorganizing/decorating project, I was going through papers and found it, and then decided it would be perfect for this yarn. Ravelry notes here. I still have two shawls to block as well.

(Yes shawls are my favorite thing to knit. They’re so diverse and you can have o much fun with yarn and technique! BUT color work is also really fun. And I’m liking cowls. So cowls/shawls are my favorites right now.)

To live the liturgy::

Today is the feast of St. Bernard, Doctor of the Church and Abbot. Did you know he wrote “O Sacred Head Surrounded” (or “now Wounded” in some translations)? I didn’t! I love that hymn. He’s also featured in Dante’s Paradiso. (The last part of the Divine Comedy. If you haven’t read it, I recommend it!)

Around the house::

Still going on the big project but things are coming together! Yay!

From the kitchen::

I will make another load of Sourdough sometime this month to incorporate Diane’s suggestions to my last attempt! I’m actually really excited. I need to feed Sammy the Starter today.

Plans for the week::

All day doctor extravaganza on Monday for yearly testing. WHEEE. Since I’m on Cipro I won’t have to do the six minute walk, which I sort of hate anyway, so that’s a plus!

Everybody Hurts

(And yes, I did choose that title based off the song.)

One of the things I’ve come across a lot in 40 years is the idea that if you are financially well-off/secure, that you don’t suffer. It’s gotten to the point where I feel like I need to write about it here, to disabuse folks of this notion.

It’s usually not put that baldly, but that’s the gist of a lot of things I hear. Like, “Oh, a homily on suffering at a wealthy parish? They don’t need it!” Or “Well you’re financially secure, you don’t know what suffering is like!”

That’s…just not true.

Let’s start with the obvious and quote Scarlett O’Hara: “Money does help.” Yes, it does help. When my family was dealing with me being in the ICU, we weren’t worried about how we were going to put gas in our cars or keep the electricity on. True statement. Money helps.

However—my parents had a child in the ICU. A child they were being told was going to die. They had two other children to take care of at the same time, and potentially prepare them for the death of their sibling, while they were dealing with the possible death of their daughter, and maybe thinking they were going to have to plan a funeral. And at the same time, they were also dealing with my siblings’ schoolwork and teachers and all that jazz.

Yes, money was helpful—but they were suffering.

Life doesn’t look at your W2 or your 401(k) and go, “you know what, I think I’ll leave you alone because you have a good bank account.”

There are lots of different types of suffering, and financial poverty isn’t the only kind. There’s emotional suffering, physical suffering, combinations of all these things! Saying that being wealthy/well-off/ middle class negates any possibility of suffering “just ain’t so”.

This also goes with the whole, “Oh you’re thin I’m so jealous” thing.

Diane and me, May 2005

Folks. Look at that photograph. This was taken about a month and a half before transplant. I felt awful in this photograph. We’re at my grandfather’s surprise 80th birthday party, which I went to because it was his 80th birthday, even though my body was like PLEASE LAY ME DOWN AND LET ME SLEEP.

I weigh maybe 90 pounds here. The week after this party, I went into the hospital for almost a month. The sweater I’m wearing is an XS and it’s still hanging off me (look at the sleeves). Diane has a healthy paleness about her. I look sick. I was not healthy. In the hospital I was fed TPN (nutrition through an IV line) and lipids (fat!) to get me to gain any weight. This is NOT HEALTHY IN BIG CAPITAL LETTERS. This is a person near death.

And yet I had people telling me that I looked so thin! And making comments about how they had hips, and I didn’t, in a way to make themselves feel better about their bodies! (Seriously, they did this.)

I WAS DYING.

And people were looking at me, being jealous of my thinness.

That’s a problem, folks.

So please don’t think that because someone is financial secure/thin/good looking/happy, her life is just all sunshine and roses and awesomeness.

Everybody hurts.

Forty

I’m forty.

I wasn’t supposed to be forty. This was a birthday I was never supposed to see.

When I was diagnosed with CF, the average life expectancy was mid-thirties. Then I almost died at nineteen.

If my organ donor, Suzanne, hadn’t made the decision to donate her organs, I’d have died at twenty-three.

But she did. And seventeen years later, I’m forty.

FORTY.

Unlike a lot of people, I don’t dread my birthdays. I celebrate them with full vigor, and this one, especially, was celebrated to the hilt.

My door was decorated by my brother Bryan and my sister-in-law, Sarah.

They also sent me a truly stupendous bouquet of flowers.

That night, my parents hosted a party for me at a local restaurant. We had a private room!

I did the name cards!

(Sarris chocolate is my favorite chocolate in life. It’s a Pittsburgh-based chocolate company and I’ve been eating it since I’ve been old enough to have teeth. My grandma used to have little bowls of their foil wrapped Easter egg chocolates in her house and I loved to eat them. So I thought they’d be a sweet treat for our guests!)

Some of my favorite people were there…..

Amilia came all the way from Illinois for the party!

Tiffany and Bill were there! (Alice was with her grandparents.)

Mary was there!

If you’re read Living Memento Mori, then you know about Rita, one of my favorite nurses—she was at the party!

And my brother and SIL were there too!

It was a fabulous party—it went on for four hours, which didn’t seem quite possible.

It was, simply, way too much fun.

Suzanne made all of this possible. She makes my writing this possible.

If you’re not an organ donor, please consider it. You can sign up online here.

Being a "disabled writer"

violets in my yard

The other day on IG I saw someone asking if there were more Catholics who spoke about disability issues or accounts that focused on disability and faith.

Now, this, in and of itself, is not a bad thing but it got me thinking, which got me writing.

I am “disabled”. I put that word in quotes because I don’t really think of myself as disabled apart from my hearing loss. This is something that I’ve noticed, that the range of disability—and who considers themselves disabled—is wide.

And that’s the same as my interests. Like Elizabeth Bennet, “I take pleasure in many things.” I don’t just write about disability and faith, or just disability, or just faith! Taking a quick scan of my blog posts and IG feed, you’ll see babies (ok, lots of babies), knitting, flowers, food, paintings, books, games….all sorts of things. I’m interested in a lot of things, and that’s what I write about. Obviously I am also interested in writing about health because my health is a big part of my life. I do advocate for accommodation. (Here are all my posts with the disability tag)

But I’m never going to start a conversation with “Hi, I’m disabled.” I don’t start by telling people I have CF or I had a transplant or I’m hearing impaired. The latter does tend to come up earlier than usual when I talk to people because, well, it’s sort of urgent if I can’t understand you.

Everyone handles disability or illness in a different way, but don’t expect us to just talk about those things. Some people do—that’s what they feel called to do. But if I just wrote about my disabilities I’d be bored stiff and so would you! I’d run out of things to talk about!

I like to talk about knitting and Maddie and Patty and travel and cooking and TV shows and movies (and speaking of hearing impaired-ness and movies, go CODA!). Don’t just see the disability. See the person behind it.

And also, at the same time, don’t think that we’re exceptionally “brave” or “strong” people because we live with a disability. Seriously. I’m not a saint (ask anyone who knows me, not a saint definitely not). We’re people doing the best we can with the life we have. That’s all.

In Which Emily is Completely Honest: A Hospital Tale

The results of said Hospital Tale

At almost forty, and with 39 1/2 years of medical intervention under my belt, there is very little that I have not yet done in hospitals.

Procedures don’t really surprise me. What surprises me—and dismays me—is crappy staff.

As you all know, most of my medical experiences have been in a pediatric setting (yes, even when I was in my late 30s). In peds, there are many things that should be passed on to adult hospitals when it comes to how you treat medically complex patients. And, indeed, one of my big worries about moving to New Resort was that they wouldn’t know how to treat me.

This has been born out in a lot of ways, but especially in Today’s Tale!

Settle in.

*

On the first Tuesday of the year, I had a colonoscopy. Not the best way to start the year. And yes, I’m not even 40, let alone 50, so why, you may ask, was I having one? Because people with CF are at a higher risk for colon cancer, so we start our screenings earlier.

Now, I have determined (this is in no way scientific, just based on anecdotal evidence) that there are two main types of CF: The CF I had, which is where everything else works and your lungs are CRAP (to put it nicely) or, your lungs are OKish, and everything else is CRAP—mainly your digestive system. This is where the colon cancer it comes in. I have the first type of CF—once I got new lungs, my CF was pretty much….resolved, in the sense that the rest of my body works pretty darn well. Yes, I still have CF, and will until I die, but I’m not doing chest PT every day, I’m not taking albuterol and pulmozyme, and I do not take any CF specific meds. My diabetes is called CF related diabetes, but it really isn't. That’s just the easiest thing to say, instead of “post-transplant steroids + menopause related diabetes”.

Anyway, all this to say, I don’t really need a colonoscopy. But I had one because I’m a good girl.

So the prep was better this time—I only vomited once!—and we got the desired results on that end.

But then I had to deal with….staff.

*

Ask just about any nurse who has had me and they will tell you I am a good patient. I am polite. I don’t hit them (important in peds!). I don’t call them names, I don’t swear at them, I don’t blame them for things that are not their fault.

However.

We had been told to go to Main Campus to get my colonoscopy because they could access my port.

Hahahahah. They didn’t.

You’re probably saying, Emily just shut up and tell the story.

OK.

So I get there. I go back. One nurse is hunting for an IV spot and one is trying to check me in—running through my meds and such. This is all done with masks on, and the door is open, so there’s a lot of noise because this is a “factory” setting endoscopy unit—move people in, move people out. As in, they don’t know your history, they don’t really care about your history, they just want to cycle you through.

I have a hard time understanding the nurses, so I tell them this.

The first nurse looks at my port and I said, “but if you don’t want to try it, we can put in a peripheral, I have good veins in my right shoulder.”

She doesn’t use those veins. She hunts. She fails.

Now, the first thing is that she’s using a not tiny needle. You must use tiny needles on my veins because my veins are shit.

They call in the anesthesiologist. He doesn’t want to do the ones in my shoulder. (Now, why he was being asked, I have no idea. But he was!)

So after this nurse says, “Well, we can do ultrasound guided IV. I know you don’t like them….” (I had mentioned this.)

I HATE ultrasound guided IV. Here’s why: Instead of going for a surface vein, you’re going into the arm.

INTO. Under the skin, INTO THE ARM.

Think about that for a second. NOT FUN.

Nurse doesn’t want to try my port. I’m…..not sure why.

So I submit.

To six of these.

Anyway throughout all these tries, I am not happy. I am further lead into unhappiness by the following comments:

“Has anyone ever told you you have thick skin?” (I do, but not the way she means, and I don’t)

“Why are you crying?” (BECAUSE IT HURTS YOU IDIOT).

And my favorite, “Are you afraid of needles?”

This is where Emily Honesty came out. “No. And if I ever was, I would’ve had to have gotten over by the time I was five.” Because, you see, I was getting monthly blood draws for my anti-seizure meds when I was a wee bairn. I didn’t mention that I stick myself eight times a day for insulin, so if I was afraid of needles my life would be insanely difficult.

Mr. Anesthesiologist comes in again.

“Well we’ll just have to put one in your neck.”

via GIPHY

I have had an IV in my neck, when I was 19 and we needed it there to save my freaking life. Other than that, NO.

So I said that. “No. Absolutely not.”

“Well then you can’t get the procedure.”

“I don’t care. You are not using my neck.”

He shrugs and leaves.

So then we have two more tries, from “good people.”

The first one blamed me for moving during the IV try. Then she looks at my port. “Have they tried that"?”

“Once.”

“I can try it.”

“OK sure. I need a 1.5 inch needle.”

“Oh, we only have a one inch.”

via GIPHY

Dad and I drove down to Main Campus because they could access my port and now you’re telling me that in one of the top medical centers in the nation you don’t have a bigger needle?!

No, dear reader. They had a bigger needle. She didn’t want to get one. Let’s be real here. Hem/Onc (hematology/oncology) has bigger needles. I know they do. We use them all the time when I get labs drawn here from my port.

But this woman didn’t want to go find one.

In peds, she would have, or someone would have, if she was a particularly nasty nurse and didn’t want to go get one. I know this, because it happened a lot. If we didn’t have a needle, or we needed help with my port, one of my nurses would call up to hem/onc, who would come over, and then do their thing.

But no, we can’t do that. Why care about patients? Why try to make things easier for everyone?

I left her try with the one inch, no idea why—she didn’t get it, of course, and I said, “well I knew it wouldn’t work.”

The last dude comes in. He gets it, finally. Led to that bruise which topped the post.

I get the colonoscopy. The results are fine.

But I am not having another one.

*

Here’s why.

I only have so much vein “real estate” at this point. I’m probably going to need a new port, because the hospital nurses are not trained in accessing the one I have, although the ones at the lab can do it. (This is shitty training, if you ask me.) You are not using my neck. And I don’t want to give up good veins or things that are not really, truly important. For example, a CT scan with contrast can be important. A colonoscopy? Nope. (Yes. I know. Colon cancer. Etc. etc.)

Two, I’m tired of breaking in new people. I’m tired of explaining to them why I have a port, why I’m getting a test done. I’m tired of them messing around with my body and being generally incompetent. I’m tired of having to deal with this, quite frankly.

This is where peds is so much better. In peds, they understand that you might be complicated. Here, they expect everyone to be easy when they’re my age and are shocked when they’re not. They don’t know how to handle a patient like me. And I don’t want to be their guinea pig anymore. Instead of trying to understand me, they get frustrated because I’m not an easy patient. Well gee, I’m sorry.

I also don’t want to put up with stupid questions (SEE ABOVE!) anymore. I just don’t have it in me.

One of the things the nurses kept saying to me was , “Well, you know, if you don’t want to do this we don’t have to.”

I finally said, “Half of my life is doing things I don’t want to do, this is no different.”

And that’s probably an overestimate, but it’s true. “What I want to do” isn’t even in the decision making graph for me. It’s what do I have to do. I didn’t want to be doing this at all but I knew if I didn’t, I’d get reamed out by my doctor. (I’m going to have a talk with him when I see him in June, just about how I’m not really doing this anymore.) “Want to” doesn’t factor into it, lady.

I am proud of myself for standing my ground on the neck thing. That’s my line and we’re not going over it.

I am, however, really frustrated at how this hospital treats medically complex patients like me.

Life Lesson: Get In The Picture

The other day, I was going through my photo stash on my computer. I’m sure I’m not the only one who suddenly realizes, I have thousands of photos on my phone, I should do something about that, and then goes on a deleting/organizing spree.

As I as going through them I found a lot of older photos of me, obviously. Photos that, at the time, I had hated. Take the photo above. I didn’t like the way I looked in that photo when it was actually taken. This has been a pretty constant thing for me, in all the years post-transplant. I rarely like how I look in photos.

This is because, pre-transplant, I was tiny. My body was actually eating itself to stay alive. I was actively dying in some photos. But damn I looked good in photos. Girls told me that they wanted to be me. I was a size 0 (00 didn’t exist then). I had a skirt from Gap that was an XXXS. That’s right. A triple small.

I weighed around 103 lbs in college. Before transplant, I weighed 85 pounds. I was the size of a middle schooler.

But I looked good in photographs.

Now, going back, I can see that I didn’t. I didn’t have good color, for one. I’ve always been fair, and I still am, but this was sick fair. Consumptive fair, Lucy-being-drained-of-blood-by-Dracula fair.

This is me in college—when I was healthier, when I weighed about 103 pounds or so.

It’s not a great picture, but you get the idea.

But our culture—and really, it is our culture—is so screwed up that we think that a girl who wears a 00 and is dying is something to be emulated, that this is a “good look”, that this is a good thing.

It is not a good thing. I’m sure some people thought I was anorexic and that I did this on purpose. I didn’t.

CF, for girls, can make you look really “pretty”. You’re thin, for one, so that helps. People think you look good. But it hides the fact that ours bodies are cannibalizing ourselves to stay alive. A CF person needs about 5-6,000 calories a day. I wasn’t getting that. Even on TPN (total parietal nutrition—essentially tube feedings, via an IV that was hooked up while I slept), I wasn’t gaining weight.

But I didn’t mind having my picture taken.

Post-transplant, I mind. I mind a lot. There were maybe a few months where I felt OK about having my photo taken, but generally, over the past 16 years, I try to hide in photos. I don’t like seeing myself in photos.

I’m much healthier now, obviously. I’m not on the brink of death, and that’s not an exaggeration. I have muscles, my body doesn’t try to eat itself to give itself fuel. But there are lots of other issues—not the least is trying to re-learn how to eat after 23 years of “eat whatever you want”—and with diabetes, the fact that you can have to eat things like candy, or drink juice, just to keep your blood glucose happy, is a lot of balls to juggle.

I try not to complain about it. But it’s hard to see myself in photos.

But anyway, as I looked at the photo of Di and Frankie and I (above), I thought. I am glad I got in that picture. I am glad that I have this memory of that moment, of Frankie being that age and Di and I enjoying being together. I am glad that I am in this photo.

Over the weekend, Diane texted me and said that Bridget had found a photo of us, taken when I was on vacation, on her mom’s phone, and that it was “her favorite.”

And I realized, Bridget doesn’t care that I don’t like how I look. What she cares about is that I was in a photo with her. That we have this memory.

This doesn’t mean that I don’t want to be stronger, that I don’t want to be in better shape. (I finished a workout right before I wrote this.) I do.

But so many times we don’t want to be in the picture until we “look better.”

But the important thing is that we make the memories. Because that’s what matters. That we have these things to look at later, and that people have these when we’re not there.

Get in the picture, folks.

Seven Quick Takes--Sinuses & Stats

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Hey everyone! Welcome to fall. (AKA, the return of hockey season!)

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On the blog this past week, I wrote a piece that I think is pretty important, and if you haven’t read it, here it is: Lies, Damn Lies, and Statistics.

If you’ve been a reader here for any length of time, you know that I take the idea that “everyone has worth” seriously. This is because I have been frequently told that because my genetic code is messed up, my life is “too hard”.

Life is hard for everyone. Everyone will suffer. Everyone will die. I wrote a book about this, for Pete’s sake.

Yet some people think we can control suffering. We can control unhappiness.

We can’t.

So whenever the ugly head of eugenics rears its face, I try to play whack-a-mole with it and beat it down into the dust where it belongs. This piece is my latest Whack-A-Mole entry, but with the caveat of a really, really grim statistics at the beginning.

95% of children with CF are aborted in utero.

Anyway, read the piece to get all the sad facts and see exactly how I feel about this. :)

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Happy news, yes? :) How about some Patty?

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Also in HUGE news, I’m an auntie to a little girl! I have a niece coming! Her name is Madeleine Grace and she will arrive in the world in January and I am so excitedddd. (She is my sister and her husband’s little girl)

This is the first grandchild for my parents, so obviously we are all really excited.

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I’m having sinus surgery in December! My ENT had a CT of my sinuses taken and apparently there is lots of “mucus and junk” hanging out in my ethmoid sinuses (which are really cool, btw), so he’s going to go in, get the crap out, and then flush in lots of antibiotic stuff to keep things happy!

This is all part of CF. The mucus that’s really think and causes so many issues in my lungs also causes issues in other places, mostly the sinuses, the pancreas, and the reproductive tract (most men with CF are sterile—not sure if it’s all, but most are.) For me, my transplant took care of about 98% of my CF issues—but not my sinuses. Fortunately I have really good sinuses (I had a friend who needed sinus surgery every nine months) but it’s been about 10 years since I had a clean out and that means I’m overdue. So, December! Surgery! Yay!

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Dad and I are reading the Cormorant Strike series and we love them. I just started watching the TV series. Have you read these? I’m not super into mysteries/crime, but I love these. And I mean it helps that they’re ghost written—it’s actually JK Rowling who write them. :) So as a massive Harry fan, that helps. (I didn’t like her first adult novel, btw. So that’s why I was slow to pick these up. But these are good.)

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Knitting? I finished the Beatrice Shawl, and I’ve got four colors for a mystery KAL.

Beatrice shawl on the mats

The KAL is a 6 week thing, and I have five of the clues so far, so I joined late, but I’m really chomping at the bit to get started. I just needed some more size 4 needles, so once those arrive I can dive in!

Lies, Damn Lies, and Statistics

Diane and I as pre-schoolers, before my CF diagnosis. (I’m the blonde.)

I’ve never really liked statistics.

First off, they used to not work in my favor. 4% of the CF world gets something? That means I’m getting it. Get a bug that only one other person in the world has had? SURE WHY NOT (says Emily’s body).

Also, I’m pretty sure that my stats professor pity passed me, because I was a senior and needed a math credit to graduate (although I can figure out the number of possible combinations of license plates and combo meals, so….not totally wasted?).

Post-transplant, I tend to make statistics in a good direction—being 16 years post-transplant, for one. That’s a good way to end up a statistic.

However. The following, from an article I read last week, is not a good statistic.

Ninety-five percent of unborn children found to have CF are murdered.

(I will put the link to the article at the bottom of this post, if you want to read it for yourself and check out those links.)

I was first told that I shouldn’t exist when I was 15—a story I tell in my book. But since then, we’ve made amazing strides in CF research. There’s Trikafta and Kalydeco, for starters, which are huge breakthroughs in gene therapy that don’t just help CF—this technology helps people with dementia, as well as other genetic diseases. People with CF are living into their 40s and 50s, instead of their 30s. This is all huge.

But people don’t see that. They see problems. They see suffering. They see imperfection. They see a life that isn’t worth it. A life like mine is not worth it.

This is what I wrote on instagram about this:

I used to be pretty private about having CF. Not because I was ashamed of it, but because I didn’t want people making judgements about my capabilities based on that. I didn’t want their pity and I didn’t want their fear. 

But after my transplant, I became much more vocal, because I had to be. Because people “like me”—people with messed up chromosomes—are seen, more and more, as “defective.” As “unwanted”. As “wrongfully born.” 

This hit home yesterday, the 28th anniversary of my CF diagnosis. I read the statistic you see up there—that 95% of children diagnosed with CF in utero are aborted. 

Ninety-five percent of people like me are killed on a regular basis. 

I am a survivor, in more ways than one. 

I used to think that I was supposed to be a contemplative nun. In fact, this [9/15] is the anniversary of being told that I wasn’t going to be going on to the next discernment phase with a monastery. 

Now I know differently. Now I know that I am supposed to be in the world, telling my story, so that people can see that an imperfect, messed up, “defective” body can still give you a life that is joyful and worth living. 

I can become a saint with a messed up chromosome 7. 

I am here to show that life is worthwhile, but also, to deeply pray for those who do not see this. People who think that I am disposable—that children like me are disposable. 

I want to soften their hearts. 

I do want to soften their hearts. But I also want to bring this to light.

There are at least 2,000 CF mutations on chromosome 7. They can’t all be checked for in an amniocentesis. So there are children with CF who are bon, and then we have wrongful birth suits.

The argument behind these suits is that these children shouldn’t have been born, because, they will suffer. They will die.

NEWS FLASH: all of us will suffer. All of us will die. I understand wanting to protect your child. I understand feeling that this is your fault. (Although I’ve never thought it was my parents’ fault. It is what it is. The same genes that gave me my voice, my beautiful eyes, my mind, and sense of humor also gave me CF. It’s the shakes. It’s how it works.)

I cannot imagine how this child will feel, when he is old enough to search the internet, and see that his mother writes about how she doesn’t think that his life is worth living because he suffers.

What it comes down to, really, is this. That we think that suffering is somethign we shouldn’t have to do.

I was talking to someone on twitter about this, and his argument was that we should be able to “select” embryos that don’t have CF or CP or Down Syndrome or whatever, so that we can increase health and happiness. It was sort of like talking to Dr. Jekyll before he consumed his formula.

Health and happiness do not always go together. I’m definitely happier than some healthy people I know. In fact, the strange situation is that having CF has made me more sensitive to happiness, to good moments, to things that deserve to be celebrated. I didn’t get upset over not being class valedictorian (as I remember one girl in my class being). I didn’t get upset about a B-. I had perspective—and still have a perspective—that a lot of people lack, what my dad calls the “macro” view of life. That doesn’t mean that I still don’t get upset about micro (ie, small) things. I do. But it’s not something that’s going to destroy my life or make me question the existence of God, because I’ve learned too many things along the way and seen too much of God’s providence to dismiss that.

But all some people see is the bad side. The treatments. The hospitalizations, the IV courses, the PICC lines. I know that world. I’ve experienced it brutally, and I continue to experience it.

But to wish I didn’t have CF would be to wish I wasn’t me. It would be to wish myself away.

So many people see only what is wrong. They don’t see what is right. Statistics will never tell you that.

Article: “The Moral Panic About Eugenics Poses a Threat to Abortion Rights”.

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

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.

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.