One Year of Peloton

You might remember that are my yearly appointment in 2022, my team told me that I had to—definitely—start an exercise program.

Up until that point, I’d never really had one. I’d done some things sporadically, I’d done a 5K the year after my transplant, and I’d gone to barre, ballet, and yoga classes on and off. But I’d never really had a set program that I did consistently.

Now it was time to get one.

Today I’m going to walk you through my program, do some before and afters, and talk about general fitness-y things.

The first thing I did was sign up for the Peloton app. Two things, right off the bat:

• This post is in no way sponsored by Peloton. It’s what works for me so I’m talking about it, but I don’t get paid to say any of this.

• I do not have any of the Peloton equipment (the bike, the tread, the row). I use the app exclusively, and use the treadmill in my complex gym for my walks.

The “super goal” as it’s called in the goal setting world, is to be working out every day for 30 minutes, with one rest day (Sunday) per week.

I was starting at zero, so this goal is still in progress. I am working out almost every day, but not for 30 minutes, generally.

As I’ve talked about before, my body is weird. I have about 54% lung function, which is good for me, but it’s half of a normal person’s. I have a wonky right knee and right Achilles’ tendon, as well as tight hamstrings. I say this to lay out what I am dealing with and how my routine has helped me here.

So, all that aside, here’s how it goes:

I break my workouts down into several areas: cardio (swimming, yoga, walks), strength, stretching and mobility, and I use the peloton meditation classes. (I don’t meditate, per se. I use these to help with stress and relaxation before bed, because keeping stress low/manageable is a big part of keeping blood glucose levels in check.)

For cardio: I do the treadmill walks on the app—usually 20 minutes, but sometimes 15 if my day is packed and I need to get a workout in. I have done one 30 minute session so far.

When I first started—being totally honest here—I could barely hit 1.0 on the treadmill. Now I’m at 2. (On my treadmill. The app says I’m going about 2.5 on my speed, but speed varies on treadmills).

When I first started, I couldn’t follow any instructor cues (to go faster or to increase incline). Now, I do follow them (within reason—I’m not ready for 6 or 8% incline—yet), and I like them. The app also offers hikes, which I’m going to try for the first time this week! The highest incline I’ve hit so far is 4%.

I also swim in the complex pool, which is a little harder to do regularly, because I have to have room to swim, and in a shared pool, that can be hard to do. I don’t swim fast enough to feel comfortable at a Y or JCC pool doing laps. As you can see above I’ve started tracking my swims with my Apple Watch. I’m hoping the pool will be open for a few more weeks so I can get in more sessions, because swimming really is my favorite cardio. (It’s generally open May-September.)

I count yoga as cardio; I know some people don’t, but when you have the lung function I have, even slow flow classes count for getting the heart rate up. I’m trying to be more consistent here after doing a week long yoga program on the app earlier this summer. There are a wide variety of classes. I almost always do a restorative yoga class once a week because these are great for opening up my chest (very important in the pulmonary world), releasing tight areas, and also reducing stress. (There is actual science that backs up how yoga can help lots of health conditions, CF being one of them; check out the book Yoga as Medicine* for more on this.) Obviously restorative yoga is not cardio, but my body really likes it.

A look at the yoga classes I’ve taken.

For strength, I do the 10 minute arms and light weights on the app. For these you use 1-3 pound weights, with the objective being lower weights but higher reps. I’m currently using the 2 pound weights and I might be ready for the threes, so that’s a huge improvement from the no weights I used when I first started. I love these classes. I’ve dropped a shirt size since I’ve started doing these.

For leg and core exercises (which are also works in all the other things I do) I do things like wall sits, plies, pelvic tilts, etc.

Stretching and mobility is also really important to me. I always do a lower body stretch after a treadmill session and I stretch out my arms after weights. Sometimes I do a really focused 10 or 20 minute stretch like you see above with the “hip mobility”. My legs get very cranky if they do not get stretched out regularly.

Here’s what this looks like in a normal week:

Monday: Restorative Yoga

Tuesday: 10 minute arms and light weights

Wednesday: Treadmill session with stretch after

Thursday: 10 minute arms and light weights

Friday: Treadmill session, restorative yoga.

Saturday: 10 minute arms and light weights.

Stretching and swims are added in as possible.

I want to add in more dedicated yoga classes, possibly on T or Th, and I also want to experiment with some other strength classes on the app.

I am much stronger and fitter than I was a year ago, an I can’t wait to see what gains I can accomplish in the next year!

Eighteen

This is a photo of me and my godson, Ryan. (He’s also my cousin.)

I was fifteen when he was born. When I received my transplant, he was seven years old.

I loved him insanely. I kept his photos in my locker, and my friend Amilia remembers that we used to call him “baby.” (I still love him insanely, don’t get me wrong. The insanity of love does’t wane.)

He’s 25 now. He works in Pittsburgh and has a degree in economics. He’s learning Japanese.

When I was on the list, when I thought I might not get to see him grow up, one of the things I wrote during that time was a letter to him—things I wanted him to know.

Fortunately he never received that letter, because I did get to see him grow up. I saw him lose teeth, make his first communion, heard his voice break and his body shoot up in height, and I went to his high school graduation party and I know him as an adult.

Patty is three years old. When I had my transplant, her mother (my cousin) wasn’t even married. Neither were my siblings.

My nieces—sweet Madeleine and Hailey—weren’t even possibilities at that point.

Melanie and Madeleine (aka, Maddie, Baby Bear, Sweetheart, Baby Maddie….)

Bryan and Hailey (aka, Hails, Hailey Bug, Baby Bear, Munchkin, Baby Girl…)

Cheering on her favorite baseball player with Mommy!

There are so many gifts. So many things I didn’t even think of when I was twenty-three.

So many things I would have missed.

For some reason, I didn’t miss them. I got to experience them.

“I am, among all men, most richly blessed.”

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Please consider becoming an organ donor, so that more families like mine can be blessed.

Also, my annual signed book sale is on! Get a signed copy of my book, a specially designed bookmark and prayer card, and free shipping, for $15! Email me with your address.

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! :)

If there's a reason I'm still alive when so many have died

Miss Madeleine at Easter

It’s Donate Life month, so I thought it would be a propos to talk about something that seems simple, but is often not—gratitude post-transplant.

I will celebrate my eighteenth transplant anniversary in July. To me, that is mind blowing. I am eternally grateful that my donor, Suzanne, decided to donate her organs. Otherwise, I would be dead. I would’ve died at age 23, eighteen years ago.

I would’ve missed so many things, not the least of which is seeing my siblings get married, seeing my godson grow up, getting a new goddaughter in Patty, and meeting my two precious nieces.

Miss Hailey

Now, that being said, that doesn’t mean I don’t have bad days. If you’ve read my book, you know this. There are days when I am sick of doctors, sick of meds, sick of spending time in hospital waiting rooms. That’s normal. Med side effects can be really terrible.

But the thing is, I’m alive. I never come out of an appointment going, I wish I hadn’t had my transplant.

Post transplant life isn’t a life with no health problems. It’s different health problems, but I’ll take it because I am alive. The meds cause problems—we’ve been over this here. Diabetes, early menopause, weight gain, messed up joints—it’s happened to me. I deal with it, some days more gracefully than others. But I never wish away my life.

My friend Sage never got the chance I got. I think about her so often, and when I see people saying that they aren’t grateful for their transplant, I get really angry because I miss her so much.

To me, that dishonors your donor. That dishonors the gift.

Seventeen people die daily waiting for an organ that will never come. Every nine minutes, someone else is added to the national list.

I don’t understand how I got so lucky. I don’t know why I’m alive when so many have died. (If you don’t get that reference, here you go:

To not realize how lucky you are, to not be grateful that you are still alive every single day post transplant, is….unconscionable. (And most of the recipients I know are so grateful. We are.)

I could’ve been one of the 6,000 people who die every year waiting. I wasn’t. I don’t know why. But as long as this ride lasts, I will be eternally grateful for it, even on the days when I want to SCREAM at the incompetence of medical professionals and the insanity that is parking at the New Resort.

Because I’m here, when I could very well not be.

Transplant Myth Busting #1: Only Rich People Get Transplants

Fall near my transplant center

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

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

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

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

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

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

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

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

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

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

I’ll tell you.

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

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

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

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

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

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

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

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

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

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

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

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

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.

Seventeen

Me and my first niece, the Maddie Bear!

There’s something about this transplant anniversary that just hits differently. Maybe it’s because it’s seventeen, which is getting up there in transplant years, and it feels more remarkable. I think it’s because some big things have happened in this transplant year.

My sister became pregnant, had Madeleine, and I got to meet the sweet little girl, who is my first niece! Then my brother and his wife announced they too are pregnant, with a girl, so I’ll have two nieces by the end of January 2023. Wow!

Something about nieces just hits differently. Maybe it’s because of the genetic connection. Maybe it’s seeing my siblings become parents. Maybe it’s both? It’s undefinable, I think. It’s just a special thing, to be an aunt. It’s different than being a godparent, which I also love!

How can you resist Patty? You can’t.

And I turned 40, which, to be honest, wasn’t something I was sure I’d see. But I did.

When I was twenty-three, my sister hadn’t met her husband. My brother had met his wife, but they weren’t dating. Diane, Patty’s mom, wasn’t married yet (although she was dating her husband) so her kids weren’t even thoughts. (Well maybe they were thoughts. haha.) My godson was seven years old.

So many things hadn’t happened yet.

Thanks to Suzanne (my organ donor) I was able to see all these things, and more.

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

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

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

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

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

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

Second is my insulin and other diabetes things.

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

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

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

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

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

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

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

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

Margin

Are you a person who needs permission to relax?

I am one of those people. Not to relax, per se, but to build in margin? To give yourself a break? That’s a problem I’ve always had. In some ways it’s good, because I can be counted on—I once did a performance of The Importance of Being Earnest in the midst of atrial fibrillation, because there wasn’t an understudy. I finished the show, went home, changed, and then went to the ER to get it fixed. (Seriously)

Sometimes it’s good that I don’t want to let people down. Other times, it’s not good.

But I think it’s especially important now, when everything is so busy, to remember that it’s OK to give ourselves margin.

For example: Before I had sinus surgery, I told the lector coordinator that I’d need two weeks off. I didn’t think I actually would be sick for two weeks but I thought, eh, you never know.

It turns out that yeah, I have needed that margin. This morning I thought I wasn’t going to make it to Mass. I didn’t fall asleep until almost 4 AM. But as the day went on (and as I’m writing this), I felt better. So I decided, yes, I could go. I had enough margin. I love Advent, so I knew it would feel good to go to Mass and I could wear one of my new dresses!

Said dress! :)

But, if I hadn’t felt good, then it would’ve been OK to miss Mass.

As I look back on my life, I see that there are times when I probably should have had margin, and didn’t. Like the high school semester that I had TB? I only missed four days of school, and two of those were for testing at the hospital. I should’ve missed a lot more. I was falling asleep in my Earth Science class! There was one day when my mom woke me up, and I was so tired I was crying. That day, I didn’t go to school; I just slept all day. We probably should have done that more. I should’ve said “I need this” more. But I didn’t.

The summer after I almost died? (TWENTY YEARS AGO, now!). I got a summer job. Probably shouldn’t have done that.

Post-transplant I knew that margin had to come into my life in a big way. I couldn’t push myself like I had before. I really did have to listen to my body. And I’ve done a better job of that, over the past 16 1/2 years. But it’s an ongoing process. I need to learn to cut myself some slack, because I can be hard on myself, and I’m guessing you can too.

It really is OK to step back. The world will not end if you take time off. It really, really won’t.

My tree isn’t decorated yet. My nativity isn’t up yet. Normally, both those things would be done. But they’re not. And I’m not pushing myself to do it, either. I’m letting myself feel out each day and see what’s happening in my body. I’m feeling, right now, like the nativity will happen tomorrow. But I don’t know for sure and that’s OK.

It is OK to need margin and space. It is OK to rest.

If you need permission, you have my permission.

REST. Give yourself slack. Create margin. It’s OK.

Seven Quick Takes with a Yarn Along!

-I-

Hi! OK first things first: I was on the radio this week!

I loved being on Al’s show! He was great to talk to, especially in working memento mori in with All Souls’ Day! It can be easy to pigeonhole my book as a “Lent book” (IT IS NOT) so I was glad to have an interview that wasn’t all Lenty!

(Although, I mean, it is applicable in Lent….;-)

Funny story about this: Since Al’s show (Kresta in the Afternoon) is broadcast nationally, Diane and her kids were able to listen to the show live, since this was aired during the pick up from school time in Houston. Di said that the kids were silent on the way home, listening to the interview!

So we have found the key to silent, calm rides home: Put on Emily talking about her book. :-p

Magic!

-2-

I haven’t done a yarn along here in awhile, so let’s catch up!

Right now I’m working on several Christmas gifts, including a blanket for Madeleine…(aka, my niece)

Here’s a look at the seed stitch pattern.

The yarn for this blanket is Rowan Cashsoft Merino in Turquoise, Rosy, Snowflake, and Lavender. It’s a modification of the Sully blanket—I’ve added a four stitch knit stitch border on both sides to keep it from curling in. I might also, the next time I make this, add the border all the way around.

There are also three scarves I’m working on for Christmas gifts, which I can’t show you here, haha.

For myself:

This is the garter graffiti shawl , using Spincycle’s Dream State in Starstruck and LolaBean Cool Beans Worsted in Teal Me In. I love how the Spincycle yarn works here!

I’m also working on my Ursina sweater:

Some of the set up rows.

This is knit in one of my favorite yarns—Quince and Co Lark—in the LE color way Blue Balloon.

And that is it for a yarn along! Whew!

-III-

In the Dominican third order (Lay Dominicans), you take a name when you enter, just like the friars and sisters/nuns do. WheN I entered, I chose Bl. Lucy of Narnia as my patron. Her feast day is coming up, and if you’ve never heard of her, here is a piece from the Dominican student brothers’ blog about her!

And here’s a piece I wrote about her, many moons ago!

Lucy Pevensie, as seen in The Lion, the Witch, and the Wardrobe.

-IV-

Even though Orchard House (my apartment) is not a house, it’s still good sized (it’s over 1000 sq ft), and I love looking at decorating ideas. Really my style is very British/English country cottage, but when it comes to style, I love to look anywhere!

This piece in Apartment Therapy definitely made me wish I could organize my yarn like she does! Jennifer is actually a teacher in this season of Knit Stars (an online knitting mater class with a ton of teachers—there are six seasons now!), and I’m really looking forward to her class.

I mean look at the yarn!

I also really want a dress form like the one on the right, but alas, they are expensive so I’ll have to save my pennies. But they’d be great for displaying big shawls and sweaters! I also need to get a “head model” like the one you see on the shelf there. I am going to finish a hat soon, I am I swear. Just have to learn one more thing!

-V-

Patty had a pretty great Halloween and has discovered the joys of Three Musketeers bars.

L-R: Fighter pilot, Alice being held by the Queen of Hearts, a fairy, and a fire fighter!

“MOAR CHOCOLATE, MAMA!”

-VI-

In other Patty news, she also KISSES THE PHONE NOW. It’s so cute. We also love to play peek-a-boo: she hides herself from the phone screen and then pops back in. She thinks it’s the most brilliant thing ever.

-VII-

I am just about done with my Christmas shopping and I am starting to write out my cards! I generally shop early for Christmas and I’m sure glad I did it this year because who knows when things will show up…I like to be an early bird when it comes to this sort of stuff.

Seven Quick Takes: Advent, History, Radio Show, and the Only Movie You Need!

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Heigh ho, heigh ho! Welcome back to Seven Quick Takes.

We’ll start this week with….Patty. :) Per usual!

She has recently really gotten into baby dolls (these are all her sister Bridget’s) and I love watching her play little mama with them.

Also, Patty turns 16 months old tomorrow! Here’s a flashback photo from a year ago.

-II-

Advent is coming! Advent is coming!

May I suggest that, if you are looking for an Advent devotional, that you take a look at Take Up & Read’s? It’s called The Holy Way and a lot of love and careful attention went into this book! We’d love to have you spend Advent with us. You can order your copy now.

-III-

I’m going to be on Al Kresta’s radio show on Tuesday to talk about my book and All Souls’ Day! I will post the link when it’s up, but if you have Catholic radio in your area, check to see if Al’s show is aired where you are!

-IV-

Continuing down the list, history!

Well not really history, civics.

Basically these days I use my Political Science degree to teach people civics on the internet. :-p

Today’s lesson is: how a bill becomes a law in the US Congress.

It’s introduced in either the House or the Senate. The house it’s introduced in has to pass it. After they pass it, it goes to the other house. If it’s not passed, it’s dead. If it is passed, the president can sign it or veto it. If he vetoes it, then Congress can try to override the veto. If they don’t override it, bill’s dead. Can be introduced next session.

Veto override requires a two-thirds majority of members present.

To just pass something, you need a majority. That’s it.

There’s a lot of talk about how “well you really need 60 in the senate these days.”

That is, to put not too fine a point on it, crap. Yes, the U.S.. Senate has the filibuster. Yes, it requires 60 votes to stop a filibuster. But that’s not to pass legislation.

Capisce? Do we get it? Please don’t say you need 60 votes to pass a bill in the Senate, because you don’t.

-V-

So, my dad and I, after many sojourns in ERs where we have to entertain ourselves, came up with the list of Essential Movies that Explain Life. What that means is, we draw on them heavily in regular life because they capture some truth or bon mot that applies to multiple situations.

They are:

1) The Wizard of Oz : “Some people without brains do an awful lot of talking!” "Well, being a Good Christian Woman I can’t say it!” “What a world, what a world!”

2) The 1995 Pride and Prejudice. The only version. If you know, you know. “You do not make allowances for differences of situation and temper.” “The more I see of the world, the more I am dissatisfied with it.” “You have delighted us long enough.” “What do we live for, but to make sport for our neighbors, and laugh at them in our turn?”

3) Mr. Mom. “I can’t believe it!” “I can’t believe it!” “You’re doing it wrong!” “No, lie to him. He likes it.” “Whatever it takes.” "

4) A Christmas Story: “It could be anything!” “Don’t you feel terrible? Don’t you feel remorse for what you have done?” “

Now, I’d add two other things to this—Christmas Vacation has gotten a lot of us during the pandemic, because “Whatever Russ, whatever.” And also Home Alone gives us this great gem:

via GIPHY

-VI-

Is there anywhere else int he world that does not trick or treat on Halloween? Or is this a uniquely central Ohio/Ohio thing? I as talking to Patty’s mom the other day and she said that she couldn’t believe we had trick or treat not on Halloween. I never really thought about it because that’s just how we do it here, but yes, it’s….weird.

-VII-

And I have begun writing out my Christmas cards. Yes, I begin Christmas prep early!

Seven Quick Takes: Women's Retreat, a New Book, and Yarn-A-Palooza!

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In the words of Dumbledore (adapted), “Welcome, welcome, to another week of Quick Takes!”

Post from earlier this week, which is proving really popular: Get In The Picture.

-2-

Last weekend, I attended my parish’s women’s retreat, and it was so lovely! I loved the items we received from Pio Prints, a fabulous local company.

Each table had a lovely bouquet of flowers.

I just joined this parish in January, so I hadn’t been to this retreat before, and I hadn’t had a chance to meet many women in the parish. Fellow Ave Author Emily Jaminet was the speaker, and she gave us three fabulous talks that were just what I needed to hear.

Emily’s authored and co-authored several books, and her talks were derived from those books. The first talk was about the Sacred Heart, which was a devotion I’d heard of but hadn’t really thought much about. Emily runs the local Sacred Heart Enthronement group, and it was beautiful to hear her talk about this special devotion! (Her book, Secrets of the Sacred Heart*, is well worth reading to learn more about this devotion).

Her second talk was about Christian friendship (based on her book The Friendship Project*, which is great), and the third focused on making time for prayer throughout our busy days! (Based on her book Prayfully)

My notebook is full of a lot of “thank you, Jesus!” for bringing me on this retreat, because initially, I wasn’t sure if I wanted to go. I am really glad I listened to Jesus’ prompting and went. And I told Him so when we had adoration after Mass.

It was also really great to talk to Emily about writing and being a writer, especially since we are published by the same publisher. She was also gracious enough to plug my book several times during the retreat!

There are so many lovely women at my parish who are truly seeking holiness, and it was great to meet them and have good Catholic women’s fellowship!

(Also, want a signed copy of my book for a Christmas gift? Keep reading. ;-)

-3-

Speaking of great Catholic women….my friend Kelly (who runs the Seven Quick Takes) has just published her first book!

I was deeply honored to endorse Better than OK*, which I think (and I wrote!) is vital for parents with kids who have chronic illnesses or other types of issues (I just say issues. I could say special needs, etc. but issues is the word that comes to mind for me!) It’s a beautiful, helpful book and I hope that it reaches the wide audience it deserves!

This sort of thing is something that the pro-life movement needs. We need parents to hear that it will be OK—BETTER than OK!—to raise these children, from parents in the same situations. We need to hear stories like mine that talk about how it’s possible to find job in a hard life. All these things come together to create a culture of life, with support that people need.

So go get this book! Get it! Now!

-4-

In Patty updates: this week, she has become a little girl.

I mean she always was one, duh. But she’s gone from baby/toddler to a little girl.

She has seemingly discovered her sister Bridget’s baby dolls this week, and…what a little mama! I just can’t believe how grown up she is, all of a sudden. Like I said—little girl, not a baby.

And what a fun stage—to hear her talk and to get to play dolls with her, like her sisters are doing—but it’s also sad to leave behind baby Patty.

Fortunately Baby Maddie (my niece, my sister Melanie and BIL Jason’s little girl) is on her way!!

-5-

Speaking of Maddie, I’ve started working on her blanket!

It’s a variation of the one I made Patty….

Which in and of itself is a variation on the Sully blanket pattern. (I don’t do the picked up border.)

or this one, I’m adding a small garter stitch boarder to keep the ends from curling up. You can’t really see it here (the bottom part, you can, imagine it doing that all the way around), but I don’t block blankets and with stockinette stitch (which this blanket is), I want there to be less curling. So basically every time I make this I modify it a little bit!

I’m using Rowan’s Baby Cashsoft Merino, which has cashmere in it, because, why not, and she is my first niece. :) (Well first niece or nephew, for that matter.) It’s so great to work with! I’m using the colors turquoise, rosy, snowflake, and lavender (in that order of striping) and I’m almost done with the first turquoise stripe. Because of the stockinette pattern you can’t see it really well, but I took a photo for you anyway (above)!

-6-

OK before we continue Yarn-A-Palooza, CHRISTMAS BOOKS.

If you would like a signed copy of Living Memento Mori for Christmas, then please email me. They are $20, and that includes shipping, a bookmark, and a prayer card. I can make it out to anyone you want! They are great gifts!

-7-

Back to yarn. :) I recently ordered these beauties, to make into a shawl:

And Christmas knitting has begun! I didn’t do too much of it last year, but this year, I’m making a few things for people. Do you make hand made gifts for anyone? I’m using some really soft yarn that will make up into great winter accessories!

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.

-1-

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.

-2-

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.

-3-

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.”

-4-

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!

-5-

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!"

-6-

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

-7-

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

An awesome clinic visit

The state of the Writing Wicket

Yearly Testing Wrap-Up!

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

Yay!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

via GIPHY

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

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

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

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

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

Sixteen

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

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

AND there was Patty!!!!!!

And getting to meet Patty!

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

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

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

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

And I am grateful and incredibly happy about that.

Seven Quick Takes--Second Friday of Lent

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

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

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

-2-

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

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

-3-

I got my first COVID vaccine!

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

-4-

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

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

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

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

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

We did this about four times.

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

It was insane.

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

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

-5-

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

Knitting in clinic!

Done the next day!

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

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

-7-

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

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. :)

Seven Quick Takes--Post Turkey

-1-

Happy Post-Thanksgiving! I hope you had a lovely Turkey Day!

Patty certainly had a good day.

-2-

We had Buca di Beppo. They had the normal menu (well, a smaller menu, as is usual these days) an then Thanksgiving meal which was very good. I really liked the stuffing, which had Italian sausage in it—WINNER. It was a little different than regular stuffing (or dressing, as some of you say), but I really liked it!

-3-

OK time for business!

OK first: my ebook, Catholic 101, is on sale for FOUR DOLLARS. If you are a blog subscriber, you get even MORE off with your special coupon code! So if you aren’t a subscriber, sign up now and get the code!

This book is based on my experiences as a first grade CCD—as I was teaching the kids things, I noticed that parents and other adults didn’t know the stuff I was teaching the kids! So I decided to write an ebook about it.

The ebook is gift-able—you can email it to people!—printable, and also readable on any screen.

The sale runs through next Friday (Dec. 4), at midnight. You don't need a code or anything. Just go buy it. :)

Second, Ave Maria Press’s Black Friday deal is on. Using the code BLACK20 to get 30% off and FREE SHIPPING PLUS an Advent booklet (while supplies last) for free! You can get Living Memento Mori here.

-4-

I got my first Christmas gift today from Tiff (aka Billy’s mom)—three books that I will probably spend the rest of the day devouring. That and also digging out in Orchard House—it’s a disaster. One of the biggest issues with not going out to shop is that I get so many BOXES AND BAGS delivered on a weekly basis. So they pile up fully quickly! So today I’ll be making several trips to the bulk trash and trash compactor.

-5-

Normally I put my tree up tomorrow during the OSU/ Michigan game. But….that game is now next week, so my schedule is all off. :) So I might not get the tree up until next week but it’s all good, right? I would like to get the nativity set out this weekend.

-6-

In what has become a Thanksgiving tradition, I watched Miracle on 34th Street (the original) last night while I worked on my Find Your Fade Shawl. It’s actually quite a lovely tradition, if I do say so myself.

-7-

And speaking of knitting, this weekend I will start picking up the stitches for the cardigan collar! Wish me luck. :)

Seven Quick Takes: Bioethics and Knitting!

-1-

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!

-II-

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.

-III-

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.)

-IV-

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.)

-V-

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

-VI-

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!

-VII-

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!