Tuesday, August 26, 2008

Evaluation: Day 2

Okay, so back to the eval...

Day 2 could have been renamed "x-ray day" b/c that's pretty much it. Started off with a regular chest x-ray, the highlight of which was when the probably 18 year old x-ray tech, after confirming that I had CF, asked me if I had ever had a chest x-ray done. Hmmm...guess they don't mention CF much in x-ray tech school. I came very close to responding that I was probably doing chest x-rays before he was even born, but he was kinda cute and I wasn't wearing a shirt (hospital gowns don't count!) so I decided it probably wasn't the time to get too snarky. Next came the CT scan. Again, total yawn. A transplant evaluation can seem a lot like a typical day to a CFer.

The next text was called, I believe, a "lung perfusion scan." The doctor administering this caught my attention when he pulled me aside and asked me whether I had any contact with pregnant women or infants on a regular basis. Um, no, but what does this have to do with a lung transplant? Turns out that this particular test involves, wait for it...inhaling radioactive gas. Wow. So there I was, in my hospital gown, hanging out in the waiting room in an NYC hospital and clutching a piece of paper that explained to anyone willing to listen that I was, in fact, radioactive. Apparently the paper is useful if you happen to try to go through airport security within a couple of days of the testing. Anyway, this scan was not pleasant. First, the breathing of the gas was done through something resembling a bi-pap mask, designed so no room air could get in. It felt a little suffocating, honestly. Second, I had to lie on my back and try not to cough for about 5 mins. Did I mention I have CF? Not gonna happen, lady. Third (and this is the wimpy part), the x-ray machine looked like a gigantic heavy cube, which they then lowered by mechanical arm down over my chest until it was about 2 inches from my face. I thought I was going to be crushed. So on Day 2 we learned that claustrophobia + suffocation + lying flat on your back = super p*ssed off cystic. Valuable lesson. We also learned something about my lungs, I think, but I was a little sketchy on those details.

The second half of Day 2 was all about the social aspects of tx. I met with the social worker, nutritionist, and psychiatrist for the tx team. The first two actually overlap with the CF center at Columbia Pres, so I knew them just fine. I was stunned to learn that they recommend a low salt diet post-tx. Are you kidding me? I think if they make me do that I will end up licking my arm just to flavor my food! I seriously live on salt. But yeah, that was (sad) news to me. And then the psychiatrist basically told me about pre- and post-tx depression, which made a lot of sense. Right now I'm lucky enough not to suffer from depression (knock on wood), but I totally understand how chronic illness or major life change could bring it on, so we're going to keep an eye on that in general.

I finished Day 2 by going to Wendys and adding extra salt to my fries. Because apparently I need to get it while I can.

On a totally separate note (kinda), I finished my IVs today after only 2 weeks! And to top that, my FEV1 was at 43%! I almost cried, I was so happy. Honestly, it made up for all the lung perfusion scans in the world!

Stay tuned for Day 3 aka "The Day of 1,000 Exercise Tests" ....Okay fine, so it was more like 2, but whatever.


  1. Yuck.. I remember the lung perfusion scan and the feeling of "suffocation". How awful! I'm so glad you are past that!! Good luck with the rest of the evaluation.

  2. Thanks for posting about your evaluation testing. I go for a 3 day hospital stay on Sept. 29th to do mine. Because of you, I will know what to expect.
    Thanks again.

  3. ohhh I hated that radioactive test. I almost wigged out! I was thrilled to hear that your FEV1 is 43% that is awesome!! You can look forward to something about double that after tx! I have never been at 100%, and never will. I don't know if any post-tx'er is at 100% after. Mine is usually around 80? I'd have to check my numbers. They fluctuate a little, but not much.

  4. LMAO!!!! you crack me up!!!!

    Thank you for posting about this. I am really getting an idea about what to expect if I make the tx choice :)

    Awesome news about your FEV1!!!! You go giril!