Monday, September 1, 2008

Evaluation: Day 3

I have a couple of minutes during the long weekend and thought I would finally wrap up the evaluation saga on this blog. So here's the scoop on Day 3, which was pretty much all about exercise. (Random sidenote, listen to your schedule when it warns you to "wear comfy shoes." I don't know if stilettos are ever considered the gold standard in tx eval fashion statements, but at least for your exercise day make sure you have some sneakers handy. Trust me, you'll be very sorry otherwise.)

Okay, so I got to the hospital early to do a complete upper GI x-ray series with barium. Gag. I hadn't eaten since midnight the night before and I was a little cranky, but mostly I was just worried about vomiting that lovely "milkshake" of theirs all over the exam room floor. Not pleasant. Only I didn't really need to worry, because the first thing they did was sit me down and ask all sorts of personal questions. Turns out it would be somewhat helpful if the transplant team gave patients at least some input into the scheduling of their evaluations, or at the very least consulted with those patients who happen to have a uterus at some point in the process. So Day 3 didn't end up starting with a barium test because the hospital was worried about performing an abdominal x-ray on that particular day. I kinda felt like I dodged a bullet there, actually, even though it means I'll have to go back and do the GI thing later. And yes, next time they said I could schedule it myself, which should be helpful if they're going to be so picky about the timing.

After the no-go x-ray test I went on to the cardio-pulmonary stress test, which I had never done before but had heard a lot about. Mine was done on a bike, but word on the street is that this can also be done on a treadmill. Basically they strapped me into about a million little machines, including a pulse-ox and an EKG machine, and then had me breathe into something that resembled a PFT mouthpiece (noseplugs included). All of this was to measure my respiration and my heartbeat, as well as O2 sats. They had me start pedaling the bike and then they started increasing the resistance. Every so often the tech would come over to me and show me this piece of paper with a 0-5 scale written on it, and I was to point to numbers depending on how tired I was and how hard it was for me to breathe. It didn't last too long - maybe 10 minutes or so - but it was definitely tough, and I exercise very regularly. The good news is that my entire test was normal, except for my respiration. Big surprise there. The tech explained to me that when I start working hard, I can't breathe deeper because I don't have the lung capacity, so instead I just start breathing faster. My O2 level stayed okay throughout the test, dipping down to 90 but not below that, so I was really excited because the tech told me I don't need to be using O2 to exercise. She did say that I probably should aim to keep my heartrate no higher than around 140 while working out, and that it was incorrect to assume exercise isn't helpful if you don't get your heartrate over 150. So that was useful to learn.

I went straight from that to the 6-minute walk test, with about 15 minutes in between to grab some lunch. Probably bad planning on the part of the tx team, frankly, but again, I had no control over the schedule. So I got to the tx center for the walk test still a little tired. This was my first 6-min walk test ever, but I had heard about them as well. The RT administering the test took me into a hallway and I was instructed to walk back and forth down the hall as many times as I could in 6 minutes. Aside from feeling ridiculous speed walking in a hallway, it was super easy. I made it well well over 2000 feet, which apparently put me in the very upper tier of walk-testers. I actually set a new record for my doctor, even after the stress test. It all left me feeling very in-shape to be honest. Who would have thought a tx evaluation could leave you feeling healthy?

Finally, I met with the tx team again - my doc and the financial planner. The finance thing was scary, because who isn't concerned about all the costs associated with tx, but I'm also lucky in that department and have really good insurance, etc, so that wasn't as bad for me as it could have been. I'm sure for many the finance portion of the eval is incredibly daunting. This is another situation where it's good to ask any questions you can think of and get the coordinator's office number so you can call later if more questions come up. I think everyone knows this, but tx is costly. I do think state-sponsored insurance plans will cover the procedure for people on SSDI/SSI, but I'm not sure to what extent they cover things and how exactly that works. Sorry I can't offer more there.

Finally, I met with doctor from the tx team. He told me more or less what I already knew: that it would be a little while before they would list me but that it was good I was done with the evaluation because I have a history of rather unexpected decline. He also told me I could continue to work until I and my CF doc decide it's no longer a good idea - but he mentioned that he had one patient who continued to work (on O2 and everything) right up until he actually got the call. This was great to hear, frankly, because I really really want to continue to work for as long as possible before the tx. I'm not sure I'm harcore enough to go right up until I actually get the call, but I'd like to think that I would if it's not endangering my health in other ways. One thing I have more or less decided is that when I need O2 I am going to be as open with it as possible at work. I already infuse IVs there when I need to for my afternoon dose and so far people have been really cool with it. This disease is frustrating enough without worrying about how other people will react to some O2 tubing, anyway.

Happy labor day everyone!

1 comment:

  1. I'm FLOORED you have never had a 6 minute walk test before?!?!?!?!!? I thought they were super standard? I get them any time I feel crappy...and I always fail haha!!!

    I am very glad you shared your experience with us. I am considering talking to my DR about possibly getting evaluated now but I am nervous since I don't consider myself in dire need of a tx yet. But we are very similar in our CF so it makes me feel better :)

    Can't wait to meet you in a few weeks!!!!!!!!!!!!