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.

4 comments:

  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.

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  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.

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  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.

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  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!

    <3

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