Thursday, January 14, 2010

CF and Transplant Update

So I saw my CF doctor today, and my transplant doctor, who thankfully practices in the same building just a few floors up. It was 12:10 when I walked in the building, and 3:00 when I walked out. Not too shabby, considering I did PFTs, vitals, and saw 2 doctors, my CF nurse, and a transplant coordinator in that period. Like a fool I went in without having eaten much though, so by the end of it I was basically ready to rob a McDonalds for some of their salt packets. Needless to say that didn't happen, and we went out for Mexican food* instead.

*There are restaurants in New York City that sell food they claim is "Mexican." In rare cases, they're right, and the food is authentically what one might find in Mexico. These restaurants tend to be small, dirty, and really, really good -- they are also most often found above 100th St. The vast majority of "Mexican" restaurants in this city, however, are some bizarre form of New York cuisine meets sub-par Tex-Mex, but I use that latter term loosely. These restaurants tend to be larger and overpriced, and run the gamut from really fancy to really ridiculous. No one from Colorado, or Texas, or any state West of the Mississippi, would consider these places "Mexican" restaurants, and it's taken me close to 6 years to stop being personally offended by their claims. I mean really, people, I know what a good taco tastes like, and it definitely doesn't involve ground up bagel and hot dog meat in a corn shell, or whatever it is these places are serving. And to any NY readers, I'm very sorry to be the one to tell you this, but you've been totally duped.

Okay, so anyway, before the "Mexican" food, I had the appointments, both of which were generally positive. I saw my CF doctor and blew PFTs without any big surprises, aside from the fact that she asked about this blog, which kind of threw me for a loop. I'm still coughing so we'll see what comes next on the IV front, but everyone's pretty much in agreement that I need a break for a little while. There is some talk of a "2 weeks on, 2 weeks off" sort of regimen from here on out, so I think we're going to play it by ear and just do what we have to do.

She called my port beautiful, and I have to say I'm becoming pretty attached to the little thing myself. It's different from the arm port, which I treated for all intents and purposes like a PICC when it came to showering when accessed, etc, but I'm getting used to it. And it's a whole lot easier than those ridiculous peripherals, no question. I frankly think my veins were plotting a complete mutiny in the not-so-distant future if I didn't shape up and start paying attention to their needs, so I'm definitely not complaining about the new port. I was running out of creative names for all my port/PICC/peripheral drama anyway.

On a very random sidenote, I asked my CF doctor if I would be able to see my lungs (a la the lucky folks at Stanford) because, believe it or not, the topic actually came up. She wasn't sure, but she said at the very least that she would take a picture of them for me. I don't know why this excites me so much, but I have to admit that it does. I guess it's just that they've been in my body for 28 years, and I've kind of put them through hell in all honesty (then again, fair's fair -- they weren't always so nice to me either), so I'd at least like to say goodbye somehow. Even if it's just a picture . . . I feel like I just owe it to myself to see what they (and I) went through with this disease.

Then came the transplant appointment, which was anti-climactic unless you count seeing a slide-by-slide CT scan of your lungs as a good time. I did learn some interesting facts about my upper-left lobe and why I might have such constant, recurring infections, though. I actually feel better when I hear all that sort of information, believe it or not, because 1) it just generally makes me feel more comfortable with the steps I have to take to correct the problem, and 2) it keeps me from beating up on myself for being unable to stay healthy. It's weird -- when I hear about other CFers who are struggling with infections, I never think "oh, they must be doing something wrong," but when it's my lungs I tend to be a little harsher. I guess my mind is trained to find out the cause behind results and to look for logical answers, so when I can't find them I just automatically assume I must be doing something "wrong" (or at least not doing enough things right, if that makes any sense). But apparently I'm not, at least in this case, and there actually are pretty good answers for why things aren't getting any better. So I guess maybe I can cross "solve CF infection mystery" off my to-do list now? Crazy.

I asked my tx doctor about inhaled antibiotics after transplant, because I've been wondering if maybe I'll be able to use colistin once I get new lungs if I get an infection. Nope. Turns out you still have enough of your own airways that things like bronchospasms are still a problem if you had them before, so colistin will still be a no go. The highlight of this conversation? He asked me whether I'd ever tried colistin long-term, and I said that yes, I used to just "suck it up and deal," which then made me laugh and I said something like "no pun intended." He looked at me like he thought I was crazy (or maybe just like he couldn't believe that I could really make that bad of a joke without dying of embarrassment) and we moved on -- really quickly. Good times.

The rest of the visit was so routine that it hardly seems worth recounting to a bunch of CF friends/family/patients with lots of medical experience -- think bloodwork, vitals, long talks about possible IV drug reactions, and waiting rooms with Judge Judy in the background. I'm not entirely sure why Judge Judy seems to be the daytime TV show of choice at my particular hospital, but I guess it could be worse (like, for example, Judge Joe Brown). There is actually one area of the hospital that has two separate waiting areas -- one for in-patients needing transport and one for out-patients and, I guess, guests -- and it tends to play Fox News in one area and CNN in the other. This is the only place in the hospital where I'm ever grateful to be in-patient, and I'll just leave it at that.

So everything went well, and I'm back home with the monster (who is currently chewing on a bone while lying on top of my boots, which would be fine aside from the mini heart attacks I keep having when I glance up and think for a second that he might actually be chewing on the boots -- clearly I either need to train my dog better or start putting away my shoes), and enjoying some downtime before the start of a busy weekend. Luckily I get to kick off tomorrow with a session of gyrotonics (aka my favorite exercise ever), and my mom and I actually just discovered that the large space next to the Whole Foods in my building is opening this weekend as a spinning studio.

Okay, is it just me or does pedaling really hard without really getting anywhere (but with unseen benefits for your body) seem like a really ironic form of exercise for someone on the transplant waiting list?

So of course I plan to try it.

Stay healthy, everyone!


  1. I wanna see my lungs too!!! Then I can be amazed that I waqs able to actually "breathe" with them haha! I hope you get a picure of them and decide to post it lol

  2. I don't want to see mine, no way. Going to leave them far behind as quick as I can. My wife Denise said she wants to see them though. To me I'm going to turn the page from the moment I get the new windbags, no looking back at them.

  3. my upper left airway is what has been my problem for years!

  4. I really regret not having someone take a pic of my old lungs. Glad you are thinking ahead!!!

    I would love to take a spinning class!!!

  5. Piper,
    It was a pleasure meeting you this weekend at the CFF National Volunteer Leadership Conference - and congrats on the Alex Award!!! I'm forwarding your blog to a friend of mine that just had a double lung transplant at Emory.
    Linda (CFF Georgia Chapter)