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.

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.

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: Bioethics and Knitting!

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

The Virgin Mary with St. Dominic and St. Hyacinth

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

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

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

Quick answer: Yes.

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

Answer: yes

This…is a point of contention for some Catholics.

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

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

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

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

What is brain death?

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

It is appropriate to use this criteria?

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

Can a Catholic receive an organ transplant?

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

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

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

-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….

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

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

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

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

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

A picture of the New Resort!

Behold, the NEW RESORT.

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

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

Here’s what I had done:

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

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

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

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

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

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

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

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

via GIPHY

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

via GIPHY

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

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

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

(here’s grandma)

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

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OK so lots of parties.

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

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

via GIPHY

So, yeah. Why.

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

ANYWAY.

Eventually I will adjust to these things.

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

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

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

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

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

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

Seven Quick Takes--Doctor Week

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

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MONDAY

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

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

Not fun.

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

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Time to visit my ENT!

While in the waiting room, I snapped this picture!

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

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

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

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

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

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

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

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

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

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

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Since it’s Corpus Christi this weekend….

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

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From the blog this week

Heart Note

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

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

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

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

whew!

-5-

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

-6-

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

-7-

Finally some book business!

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

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

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

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

Doing The Best You Can With What You Have

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

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

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

And the answer is, probably not.

So I thought I’d write about this.

*

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

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

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

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

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

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

Which saved my life.

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

*

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

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

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

But—what were my choices?

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

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

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

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

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

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

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

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

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

Trust, Courage, Faith, and Transplants

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

Do you see them, too?

Matthew 9:1-8

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

And here….

Matthew 9:18-26

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

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

Do you see it?

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

A lot of people tell me I am brave.

I am not brave.

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

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

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

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

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

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

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

life.

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

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

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

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

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

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

Day In the Life: Yearly Transplant Testing

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

6:30 am: Alarm goes off.

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

It’s not raining! Yay!

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

Excellent parking!

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

7:50: Heading to Crossroads Registration

dooooown the long hallways.

I passed this bunny on the way in:

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

Up we go!

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

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

It does, however, have a good vending machine.

Anyway!

8:00 Infusion

In the waiting room—Muppet Babies on TV.

Great view, huh?

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

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

My great nurse comes in and sets things up….

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

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

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

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

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

Hallway out to the waiting room.

Doooown we go.

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

(Bunnies ahead!)

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

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

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

8:40 AM: Chest X-ray

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

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

(Yes. There are two gift shops)

Sharkbait!

Past the coffee bar….

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

9:00 AM: Clinic

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

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

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

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

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

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

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

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

Finally, Pulmonary Function Tests, aka, PFTs.

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

You then get results that look like this:

swirly bit is blocked out personal info. :)

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

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

11:00 Finished clinic, back to radiology!

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

past the fish….

And back to radiology.

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

FINALLY, the LAST TEST!

11:45 am: Chest CT

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

And into the CT room:

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

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

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

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

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

Joy In the Morning (OR: How I get up every day and do life)

My siblings and I on my brother’s wedding day.

Warning: This might be a sort of rambly post. Settle in.

I was visiting my therapist last week. Yes, I see a therapist. I have since I was 17. A lot of people with CF do (not all, but a lot). I have no shame in telling you that.

So anyway, I was at an appointment with my therapist, and we were talking about how I was a bit maxed out on doctor visits. I mean, in almost thirty-seven years of life, I think my quota’s been hit, right?

And that doesn’t even count the other “stuff” we do—Mom accessing my port every month, the meds I take (which are vastly less than pre-transplant, btw), the blood glucose tests I’m doing twice a day now, etc. It’s a lot. It’s less than pre-transplant in some ways, and more in others. I have a colonoscopy every five years, which means one next year. I have a mammogram in April, because my mom had breast cancer and so my sister and I have to start our mammograms at age 37 (ten years before Mom was diagnosed). And then there’s dentists and eye doctors and the things normal people do.

So, yeah, it’s a lot.

This led to talking about compliance, which means, doing what the doctors tell you to do. And I told a story that I thought was illustrative.

When I was about seventeen, I was having a regular clinic visit, an I saw a sign on the wall of the exam room, saying that if you were 95% compliant with taking pulmozyme (one of the CF meds), you’d get a prize at your next clinic visit, see your nurse for a chart to win! Stuff like that.

Now, I never did these, because, generally, I was too old. This stuff was generally for the smaller kids, to get them in the habit. But what I thought was interesting was that the center wasn’t pushing perfect compliance.

Because that doesn’t exist.

Now, look, I’m not saying I was a slacker. Because I wasn’t. My mom, for one, wouldn’t let me be, even if I was disposed that way. I take my meds. I did my treatments. But yes, sometimes there were times where I put in a few minutes of precious sleep over a “perfect” Vest treatment, when I was in college. Sometimes I just went to bed. Not often, but sometimes. I wasn’t “perfect”, and I’m not perfect now. To be “perfect” now, I’d be a MESS. I’d be taking meds all day long, worrying about timings and if this was going to interact with that and how does this work and oh my gosh my brain is going to explode!

I take all my meds, and I take them twice a day. Is that perfect? Well, no. It’s not optimal. If can affect absorptions. *

But here’s the thing—I want a life. I don’t want to live in a glass bubble.

I went to school. I did activities. I rode bikes with my friends and went to the pool in the summer with them and then we went to the coffee shop and played board games. I had sleep overs, where I didn’t bring my equipment! I went on choir tour! (And yes, I brought the mini nebulizer!) I went to college.

Honestly, if my parents had tried to wrap me up in the bubble, I would’ve had a fit. I always wanted to be like everyone else, as much as possible. As Erin once said in a Home Town episode, I’m like a wild pony, and I need freedom!

(Not too much freedom. But enough freedom.)

So anyway, talking about all the things I had to do every day, my therapist then said, well, how do you do it? I mean, what gets you up in the morning?

And then I said, “well, that’s sort of what my book is about.” (Because it sort of is. Sort of. The book is sort of about a lot of things! )

But here’s what it comes down to:

Yes, there are a lot of things I have to do in my life. More than the average bear, that’s for sure, so when people say “well, you just have to suck it up and do X,” I want to roll my eyes, because that’s a big chunk of my day. (I’d wager it’s a large part of everyone’s day. As my grandfather used to say, “that’s why they call it work!”) But yeah, for me, and for other people like me, we have a lot of stuff on a daily basis that isn’t fun but must be done, and you just do it and don’t whine about it.

But what gets me up in the morning? Well, a lot of things. I’m very in touch with my inner child and I get excited about really little things. When I was working in the Senate, a lunch date with my Dad was enough to make me excited for the day. Today, it’s stuff like, a package is coming in the mail! It’s a hockey night in Pittsburgh! I get to write today! Oh, this book comes out! My book is in at the library! Chuy’s with Mary!

I’m very easily amused. And that helps me, I think, because it overrides a lot of other things that are not so fun. (Like making myself go to the gym. And poking my fingers. And doing doctor paperwork.)

But a big part of this, and this is what I’d say to anyone facing a chronic illness, is this:

Go live your life!

You really, really, really cannot hole up in your house and be all sheltered. You can’t. GO LIVE YOUR LIFE. Go outside! Do things! Be free! Have fun! Go to the park! Go swimming! Pet a dog! Whatever!

Yes, treatments are vital. YES, compliance is important—if I hadn’t been a compliant patient I NEVER would’ve been listed for transplant! But if you’re caught up in PERFECT, then…..you’re going to miss things and your life will be so small.

Seriously. Do what the sign says.

Live your life. Take your brain with you.

*: As far as absorptions: the only meds I take that NEED to be taken around the same time every day are my immunosuppressants (the prograf). That’s important. However, I am also far enough out that if I’m off by a few hours in a dose, the world will not end. When I traveled to LA, my nurses told me to just take the meds on LA time and not worry about being exact. I used to take my meds exactly at 8 AM and 8 PM (even rushing to the lobby of the Ohio Theater to take meds before a symphony concert started). Now, it’s generally around those times. I’m not quite as OCD.

The meds I’m talking about here are things like my nexium and magnesium supplements. You’re not, really, supposed to take them together. But if I didn’t, then I’d be carrying around meds all day and thinking about when to take them, as opposed to thinking about things more worthy of my brain space! It’s not a huge deal to take them together. But yes, some meds do have to be taken at certain times, and when I do those (like home IVs) then, yes, it’s on the dot as much as possible. You usually have about an hour leeway on either side of the dose time (for example, if the dose is due at 6 PM, you can do it at 5 or 7, but not 4 or 8.)

Thirteen

The annual transplant anniversary post tends to change, in form and shape, every year. This year, a lot has happened: 

Catholic 101 was published in November (buy it here--on sale until Friday!) 

My brother got married

(c) Erica Kay Photography , http://ericakayphotography.com/home

My sister got engaged

Melanie and Jason (her fiance) leaving Bryan and Sarah's wedding (c) Erica Kay Photography, http://ericakayphotography.com/home

I saw the Stanley Cup with my parents

I went back to Williamsburg and Duck 

I started writing and editing for Take Up & Read. 

I celebrated my grandma's 88th birthday with my family

I knit my first shawl. 

None of these things would've happened without my donor. 

It can be tempting to look at life in terms of productivity, what we do,  and I'm not trying to list my productivity. Look at what I've done! Rather, it's more like, these are things I never would've done, enjoyed, even conceived of, thirteen years ago. These are things that never would've happened. 

I would've missed my brother's wedding. 

I never would've met my new future brother-in-law and sister-in-law. 

13 birthdays, Christmases, holidays....all those things would've passed without me. 

In general, women post-transplant don't do as well as men. There isn't a lot of data, period, on women who have survived a transplant longer than 10 years. I'm in new territory here. 

I try not to think about that. 

Instead, these things I get to do are gifts, even when life is sort of sucky, because life is never totally perfect. I mean, things are overcome, yes--but just because something is overcome doesn't mean that everything is suddenly perfect. It doesn't work that way. 

Someone said, life is full of suffering, but it is also full of the overcoming of it. 

And that about sums it up. 

Thirteen years of overcoming is pretty good. 

With the cousins on my mom's side at my brother's wedding. This is not all of them, btw! 

To be an organ donor, go to donatelife.net/register

Save Lives--Be an Organ and Tissue Donor!

So, just about all of you here know that I am alive because of a double-lung transplant.  Obviously, organ transplantation is something I feel very strongly about. 

Today is National Blue and Green Day, a day within Donate Life Month (which April is) where we really focus on bringing awareness and attention to the need for organ donors. And there is great, great need. 

There are 115,000 people currently on the waiting list for an organ or tissue transplant. When I was listed in 2005, that number was in the high 90Ks. In 13 years, it has ballooned. To give you a visual: 

This is "The Shoe"--Ohio Stadium at OSU. It holds about 104,000 people. 

The national registry has about 10,000 more people on it than are seen in this photo. 

Imagine that for a second. 

That's more than the entire town of Burbank, CA; Cambridge, Mass.; or Charleston, SC. 

Now--of these people, twenty-two of them die every day, waiting for a donor that never comes. 

Imagine those people are your parents; your siblings; your cousins or aunts or uncles or grandparents. Your best friend. Your pastor or favorite teacher. 

And we can do something about that: by getting more people to be organ donors. 

Being a donor is totally free. It costs nothing to you or your family. It's very easy to sign up. 

You can do it here!

I'm alive because a woman named Suzanne decided to donate her organs. She helped me and at least two other people. She saved my life. 

Please register, so you can save someone else's life. 

Stop waiting around

Trivia night victors! 

Guys. Stop waiting to do things. 
I see this a lot with transplant people--or people with CF--but also with people who are just nice, normal people. 
"Oh, I'll wait until later to do that."
"Oh, someday...."
"Oh, it's just not right right now."
Guys. 
If you want to go to school, go. 
If you want to learn something, learn it.
If you want to bake cookies all day, do it at least once.
If you want to learn Spanish, sign up for Duolingo. 
STOP WAITING.
Stop saying, Oh, when this happens. 
Nuh uh. 
DO IT NOW.
Yeah, sometimes it's not plausible. I get that. Sometimes you have to save money. I get that too. 
But then DO IT. Save the money. Make it happen. Dedicate yourself to it. 
Don't wait. 
Don't use your body as an excuse not to do things. "Oh, I have crappy lung function, I can't go to school, I can't work, I can't do anything by lie here and watch Netflix."
I've been there. Before my transplant, I slept for 13 hours a day. Seriously. If not more. When I was "awake", I was sort of zombie-fied. And that's what happens when you're close to death. 
But EVEN THEN--I went to work. I went out. I saw my family and friends.
Yes, when life changes, more opportunities can open up. 
But you will lose your life waiting around for things to happen. 
So STOP IT. 
Learn the things. Do the things. LIVE YOUR LIFE. Even if you're almost dead, you can STILL LIVE YOUR LIFE while you have it.

I am not brave

Let's just get this out of the way. 

I am not brave. 

I am not courageous. 

I am definitely not a saint. 

Yet, people call me, and people like me, these things. 

This makes me really uncomfortable. 

Having CF, and having a transplant, do not make me brave. 

Are you brave when you get up, get dressed, have your breakfast, and go to work? When you do the dishes and get the mail and pay the bills? No. You're living your life and being responsible. 

When I did my treatments, took my enzymes, went to clinic, did IV meds...that was my life. When I take my meds in the morning, when I go to clinic now, that's my life. That's completely normal to me. It's not brave. It's not courageous. 

Deciding to have a transplant? It was just deciding to live my life, to do what I needed to do to extend it. I wasn't afraid of dying on the table, because I knew without the surgery, I'd die anyway. So, choosing transplant wasn't brave. It was pragmatic. 

Going to college? Getting my degree? Working? Again, no brave. Not courageous. Living my life. That's all.

When I see stories about how "Brave" people like me are, because we live with illness, I want to scream. It's not brave. It's just doing what you have to do with the hand you're dealt. What would you do? Curl up in a ball and refuse to leave your room? Refuse to do treatments? I guess. I knew CF people who did. 

Bravery and courage are not what I have. I hated selling Girl Scout cookies. I'm not brave. I won't sky dive or even do a high-ropes course. I'm NOT A SAINT. I just am. I live my life the way all the rest of you do. This morning, I took my pills with my coffee. I've been taking pills with my breakfast since I was about two years old. It's not out of the ordinary. It's not brave. I'm not brave when I "let" people stick me multiple times to get an IV in. That's not bravery. That's what I have to do. What's my other option? 

My parents are brave. They hold it together when everything is threatening to fly apart. I am not brave. I'm just doggedly stubborn. 

Brave people are the people who rushed into the World Trade Centers on 9/11 to save the people inside, knowing they would probably die.  Navy SEALs are brave people. Soldiers, firemen, nurses, first responders--they're brave. I don't put my life on the line. I don't do anything to save other people. 

So please don't call me brave. I'm not. 

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(Catholic 101 is now available! Pick up your copy here: https://gum.co/RMkqu) 

Twelve Years, and a Celebratory Pork Chop

Me as an intrepid toddler. 

Twelve years is a substantial amount of time, if you think about it. It's your entire education from first to twelfth grades. It's an entire pro sports career, if the player is lucky. Ad it's how long I've been alive with another person's lungs inside me. 

It's insanely lucky. It really is. When I consider the people who don't get listed, who don't get the call, and then who don't survive past five years (which more than half of female lung recipients don't)....it's amazing to be so gosh-darn lucky. It's miraculous, really. 

So I thought it would be appropriate to share a good bit of food with you. Before transplant, I hated food. I liked cooking and baking, but I really didn't like eating much of it. Post, I loved it. The entire world of food opened up to me. 

Just recently I've been working on tempering the two--eating what's good for me, in good portions, and not going overboard on the stuff that's delicious but not so healthy. I'm seeing results on a lot of levels, which is exciting, but I'm also learning how to embrace cooking really great food that's also not terrible for me. Thus, this pork chop recipe. 

You can eat it just as it is, or serve it with some buttered leeks. 

Here's to more celebratory pork chops. 

Celebratory Pork Chop

This is the best pork chop you will ever have. I guarantee it. 

Start with two thick pork chops, about an inch. Don't trim the fat off. Season with with kosher salt and fresh ground pepper. 

Preheat the oven to 375. Drag out your oven proof skillet (cast iron is great). Heat it over medium high heat, and add olive oil to it. When the pan is hot, add the chops. Cook for three minutes on each side, then throw the whole thing, pan and chops, into the preheated oven for 30 minutes. Remove the pan and put the chops on a plate to rest for four minutes. 

Make a pan sauce--in the hot pan, add 1/2 cup water or stock, let it reduce a bit. Add 2 teaspoons dijon mustard and a good knob of butter--about a tablespoon, but whatever odd pieces you have in the fridge. Whisk together. Serve the chop with the pan sauce. 

Enjoy deliciousness. 

(Also, are you an organ donor? Please be one. When I was first listed, 18 people died every day waiting. That number is now 22 people, and the national list stands at 118,000 people who are waiting for new organs.  Sign up here. ) 

Giveaway: A copy of "Cultivate"!

In honor of my twelve year transplant anniversary, which is tomorrow (holy cow, that sounds amazing to write--incredible to believe), I'm giving away a copy of Lara Casey's new book, Cultivate, which you've all heard me babble on about for months now. It's so good, folks. I'm so excited to share it with you! 

(You can read my review here, and my preview here)

What do you want to cultivate in your life? Share it in the comments! It can be anything, big or small! 

a Rafflecopter giveaway