To Boldly Go

….where few medical peeps have gone before… 🙂

Sorry, we need some Jean Luc here.

Sorry, we need some Jean Luc here.

(Sorry, my dad’s a Trekkie. The trekiness emerges from me unbidden sometimes.)

So, as I sort of hinted at the end of Seven Quick Takes, my lungs are showing some signs of chronic rejection. What this means is that there’s some areas of scarring, which leads to loss of function in those areas. While my areas are small, if it spreads, it can lead to lots of other issues, up to and including needing another transplant. We’re not there. Thankfully.

We don’t know a whole lot about rejection, as a whole. We sort of understand what causes it–the lungs aren’t the same genetic material as the rest of my body, so my immune system sees them as foreign objects which must be attacked. That’s why we’re on so many immunosuppression drugs, to trick our bodies into liking the organs they need to survive. However, we haven’t solved the rejection issue.

There are two types of rejection: acute and chronic. Acute must be dealt with quickly–usually with increased meds. Chronic is a slower-moving type, and is harder to detect. There’s really no “gold standard” for finding it. We aren’t always sure what causes it. We know that several episodes of acute rejection, antibodies in the blood, non-compliance, several acute rejection episodes and reflux are things that can cause it, and the only one of those I have is the last one, and that’s pretty well controlled. (That’s what all the GI testing was for this week–to see if it’s not controlled).

Lung transplants are tricky, because lungs are the only organs that come in contact with “the outside world” on a regular basis. So there is a much higher potential for problems with the organs. We’re still learning a lot about transplant and rejection as a whole.

So–as I hinted, again, in quick takes, this means I just have to be very, very aware of what my body is telling me, always. I have to treat it nicely. I have to listen to it, even when I may not want to.

We’re not in “Danger, Will Robinson!” stage yet, so no panic. But–prudence.


The Eiffel Tower is outside my window

Well, OK, not the real one. (Sorry.) The EPCOT one.

I’m writing in the middle of my Disney vacation, from the Beach Club Resort, which is our home base, and also really close to EPCOT. From our window you can see Spaceship Earth to the left, and the Eiffel Tower to the right. It’s a pretty great view, I have to say.

We are having a great time here in Disney World. We got here on Sunday afternoon after driving through Ohio, Kentucky, Tennessee and Georgia, and I just fell in love. The entire first floor smells like orchids, due to the gorgeous fresh flower arrangements that are everywhere. Our housekeeper is a cross between Ethel and Tinkerbell–she’s as fastidious as any Downton maid, but also does magical things, like make towel sculptures and arrange my Disney bear, Duffy, in a different place each morning. 🙂 The cast members (you are not a Disney employee. You are a Disney CAST MEMBER!) who work in the lobby are unfailingly helpful and cheerful.

The pool complex is amazing. So far I’ve spent every morning there, exploring the different pools (There are at least four) and their features, from a sandy bottom, to whirpools (yes, a real whirpool) and fountains. It really is magical.

And, of course, beaches and cream. Oh my gosh, Beaches and Cream.  I have had thus far: two hot dogs, two cheeseburgers, and the Milky way Sundae (no, not all at the same time! Four different meals. It’s great for lunch and we had dinner here on Monday.) Dad and I sat at the counter on Monday and watched the servers make the Kitchen Sink sundae, which is unreal. It’s every flavor of ice cream they have, plus all the toppings they have. When it’s served ambulance-like flashing lights come on and people applaud. Seeing kids’ faces when it’s placed in front of them is so much fun. They cannot believe the amount of sugar that is being laid before them.

Yesterday we did the Magic Kingdom, and tonight is Epcot. I will post pictures once I’m home, and attendant stories, but here are two for you:

    • When I was in Bonjour! gifts in the new Fantasyland, the cast member who was checking me out noticed my celebration button. Disney provides free buttons at the park entrances for people to wear for special occassions: birthdays, anniversaries, honeymoons, family reunions, first visits, and a general “I’m celebrating” button. Since this trip is also celebrating my eight year transplant anniversary, I grabbed the general “I’m celebrating” button. So the cast member asked me what I was celebrating. I said that it was my eight year lung transplant anniversary. Unbelieveably: this guy had just had his own transplant, eight months ago, also double lung! I was amazed. We were talking about that whilehe wrapped my items. He’s from Michigan so not far from my home turf. He also gave me eight Beauty and the Beast stickers. 🙂
    • Also, due to the “I’m celebrating” button: I had the grey stuff at Be Our Guest. If you don’t know what that is:

Doc visit

So today was my every-three-month bonding experience with my doctors and nurses and c. 🙂 The big news today was that I lost five pounds, which I totally wasn’t planning on. I mean, yeah, I thought I’d lost something, but five pounds was really exciting! WE also have decided on a “goal” weight for me, which is nice: 150 lbs. That’s in their “healthy” range and still gives me some extra that I could lose if I ever got sick for a bit (after my pre-transplant experience of not having that cushion, I told the dietician today I definitely wanted one, when we were figuring. She agreed.). So that made everyone happy.

PFTs (Pulmonary Function Tests) were the basics today (usually I do three different kinds of tests. This was the most “basic” one), and I’m stable there. The chest x-ray actually looks a bit clearer, so another bonus (guess the exercise is working, bwahahahaha). Everyone is quite pleased. My doc wanted to know what I’ve been doing so he could “bottle it”, but it hasn’t been anything drastic.

So the goal is to lose 5-6 lbs. every three months–totally doable–until I reach the goal. I’ve been doing Jillian Michaels’ circuit training workouts and yoga, and I added dance back last week, so that helps, for sure. And we also talked about numbers on the scale can be subjective, of course (because muscle weighs more than fat, etc) but things like going down clothing sizes isn’t so subjective.

Food wise, I’ve definitely been incorporating more fruits and veggies and I’ve almost totally eliminated soda in any form (go me) except when I’m at restaurants. (I don’t have to cut it out completely, but cutting it out at home is a good way to start.) And since it’s (supposedly) spring (I can’t tell there’s snow on my lawn) in parts of the nation, more fruits and veggies and yummy things are going to be happening soon. 🙂 And of course Disney World, with all the walking that entails.

So, it was a super good clinic today. Very excited.

Body adventures

so, it’s fall, and that means the body would like to cause trouble.

Not major trouble, but when you’re post transplant, you tend to be really careful. Also, I’m not fifteen anymore, so it does take longer to get back from things (not much, but a little), and drugs affect me differently than they used to. So it’s good to go get checked out…

I’d been having some back/chest pain, which is enough to merit some testing. EKG was good, X-ray looks good, lung function is baseline. We had to get a CT scan with contrast, which is never fun because I have crappy, little, wiggly veins, and they don’t like the bigger gauge IV that’s required to get the contrast through. And we can’t put contrast in the port, because the port will swell up and not work right (Next time, I’m getting a power port that can take contrast. Gonna upgrade, baby!). I also saw my doc and nurse A, who prescribed a week’s worth of high-dose steroids (60 mg once a day, orally) and some oral pain meds. I’ve never done high-dose steroids orally before, so I’m not sure how this will work. The pain meds work, but they also have the side effect of causing me to wake up at 5:30 in the morning and not be able to go back to bed. However, I do get some awesome ideas when it happens….I guess it’s a trade off?

So I’m playing it very, very carefully here, because I am going to be busy with work and other holiday things very shortly, and I can’t have the body being all, “Oh, we want to cause trouble! Let’s screw with you!” Um, no. So if I’m nice (REALLY nice) to it now, I’m hoping it will be nice to me!

And I really don’t mind going to NCH (my hospital), because I do love 98% of the people there. I’ve known some of them for almost twenty years! (whoa. Yikes.) It’s so nice to be with people who understand my crazy medical history, my body, the way it works, etc.



One thing I want to work on during this Year of 30 is balance. When your life’s biggest concern is staying alive, that essentially removes any other concerns from life. Sure, I wanted to get good grades and get that new CD and read all of Jane Austen, but they were secondary goals. As a character in one of my favorite movies says,”And don’t die.”

After transplant, it was almost an awakening to realize I don’t have to work quite so hard at staying alive. Sure, transplant isn’t exactly a free ride. I still have to take meds and go to doctors’ offices more than most human beings, and I can’t swim in lakes, or own a cat, or probably SCUBA dive. Or climb Everest. But there are a lot of things I can do, and which are a lot easier, one of them being travel. Since transplant, I’ve made it my goal to go somewhere every year. No more no vacations! Since transplant, I’ve been to:

  • Chicago
  • Duck, NC, in the Outer Banks (twice), where I discovered the most Perfect Bookstore Known To Man. 
  • Houston and Galveston, TX
  • Williamsburg, VA
  • New York City (I’d been there pre-transplant, too, though)
  • Rochester, NY (for a wedding)
  • Summit, NJ

I’ve also been in a LOT more airports: Newark, LaGuardia, Bush International. I actually sort of love flying. Even though I generally wear a mask and spread the Purell all over the plane and my hands like it’s my job, flying is a lot of fun for me.

So, I’m traveling more. I moved out of my parents’ house and now I have a townhouse. I’ve done so much more theater, post-transplant, and I love it. (Go here for more on that.)

But now the time has come for balancing all the demands that normal people have in their lives–jobs, household tasks, bill paying, exercising, seeing friends and family. The easiest way to illustrate this is with the examples of food and exercise.

Before transplant, I didn’t really like food. Sure, I liked certain things: chocolate, Rice Krispy Treats Cereal, pasta, some fruits. But food was sort of irritating. My stomach didn’t like it, I wasn’t often hungry, and eating was a battle. “Eat a litttttle bit more” was a common dinner refrain.

Post transplant: TOTAL change. LOVE food. Eat all the time! Eat food! Food is great! Good food! I LOVE FOOD!

This worked for, approximately, six months.

Then it was time for eating ilke the rest of the world. This was radical.

CF kids are malnourished. Our pancreases (is that a word?) don’t work. So we take enzymes to help our bodies digest our food, but really, food’s not our thing. We’re supposed to eat lots of calories, lots of fat. Basically,e everything that’s supposedly awful for you, we could eat. We were encouraged to eat lots of bacon, oreos, cookies, whatever we wanted, whenever we wanted it. Except I didn’t want it.

Oh, how I pine for it now! (Well, OK, minus the concentration camp escapee look. Not good.)

Some of the changes were immediate. I didn’t like the taste of regular soda anymore. I drank 2% or 1% milk (I LOVE a fat-free milk from a local dairy in Athens, OH. It’s the best milk I’ve ever had in my life.). But I was ALWAYS hungry. Part of this was steroids. Part of it was food just tasted darn good!

It’s only taken almost seven years, but now my stomach is starting to find equilibrium, and so is my mind. Just because I can eat doesn’t mean I should eat. Last night, I had a Chipotle burrito bol before rehearsal. I try to eat things like this before a show or rehearsal so I’m not starving halfway through. I had it sans meat, with just sour cream, cheese, rice, veggies, and mild salsa, so it wasn’t bad, on the food scale of things. But I goofed and also got chips and guacamole. Normally, I”d be all over that. This time? I had about four before my stomach went, “Um, excuse me, we no like this.” So  much for my plan to take them to rehearsal with me. They met their end in the trash bin. I did eat most of the bol, but it felt a bit…unsettled. Like I’d eaten too much, or too fast.

That doesn’t mean that  I still don’t have crazy moments of food gluttony, but they are much fewer and far between than they used to be. Candy bars? Almost never eat them. (There are times when the blood sugar demands them, and they are the only options, as opposed to peanut butter and crackers.) Ice cream hardly ever happens, unless it’s a rare treat. I know if I keep it in the house, I’ll eat it all in one sitting. I can eat chips and salsa and some cookies with moderation (as in, the suggested portion size). I still love cheese–especially good cheese–and that’s helping my bones. I’ve actually gained some bone density since transplant, which is, apparently, really rare. I’ve always loved dairy products. Milk, cheese, yogurt–bring it. So I’m working on my stomach.

I’m also working on working out. Before transplant, I weight 85 pounds. This is a problem. Of course, it wasn’t due to too much working out. At that point we were just trying to keep weight on my body. It was hard. (trust me. VERY difficult.) Now, I have to exercise like everyone else. Bawhwhha?!

For awhile, my body was very uncooperative, probably because of the statins I was on to help lower my cholesterol. The immunosuppression regiment has a side effect of messing with blood sugar, and also messing with cholesterol. But statins are not really body-friendly. They make my bones hurt, they make my joints hurt, they make me dead-tired, and, oh, they ALSO mess with blood sugar! So, finally, I asked my docs to take me off it. And wooo–no more body pain! Energy! Sleeping better! Blood sugar is happier!  Whee!

I did a pulmonary rehab program at my hospital during March. Basically it’s cardio exercise, with monitoring and PTs running the show, making sure that all is well with the body. It’s teaching you how to exercise safely and correctly. I’ve done this a few times, but this is the first time it’s really stuck. I want my body to be awesome. After years of “oh we can’t do stairs” (before transplant, a friend of mine actually had to carry up the steps of the Empire State Building. Long story, but thankfully I weighed about 89 lbs at that point). Just brushing my teeth was the equivalent of running a marathon for me.

So now I’m trying to hit the treadmill at least 3 times a week. With the intense last week of rehearsal happening right now, that’s not really happening, but the show itself involves a fair amount of movement. Plus, some of us do yoga on the stage pre-rehearsal. 🙂 (always fun.) My body gets cranky if I don’t make it work. And I love seeing the scale drop and noticing that shorts I just bought are already a bit too big. I want my body to work well.

Some people talk about “work-life” balance. I’ve never been one of those workaholic people. I like my job, but life is for living. Get out of the cubicle and live, dang it! But now it’s a “too much of a good thing” balance–more like “everything in moderation.”

It’s taken awhile to get here, mentally, but now that I’m here, I want to make my life balanced. I want to stick around for awhile. Working on food and exercise is going to help there.

However, that still means room for treats….