Tuesday, August 19, 2008

Evaluation: Initial Consult and Testing Day 1

Okay, I've been promising this for a while, but I finally feel up to sharing about the eval process so here's goes. And before I start, let me just remind anyone reading that this is one person's experience at one center. It may be very different somewhere else...I just have nothing to compare it to so all I can do is recount what happened to me. And, to be honest, it wasn't NEARLY as scary or emotional as I thought it would be. It was long though - spanning three full days of medical tests - so I think it's easiest to break it down by day and go from there.

Also, just a reminder, I started considering eval in January. I then scheduled the initial consult, but with insurance approvals, work schedules, and whatnot I didn't make that happen until May 9th. So I had some time to process, which I think was helpful. Also, my mom and dad flew in from Denver and my sis lives in NYC, so they were all present for the initial meeting with the tx doctor. I can't even begin to tell you how helpful this was to have the support. Basically, we all met in an exam room with the tx doctor who will be taking over my pulmonary care from my CF doc (I will still see my CF doc for other aspects of CF). He was very nice and surprisingly able to handle my family's very sarcastic sense of humor. We asked him nearly every question in the book, from "how long is your wait once a patient gets listed" to "how long will I be on the vent after tx" to "what is your policy on communicating with the family during the surgery?" He was super helpful - even when he couldn't give a simple answer, he gave as honest of an opinion as he could. It was great, and really laid a foundation of trust. What was helpful to me was just having a list of questions to ask on hand. I literally walked in with three pages of questions and checked them off as we went. My sister "stole" some of my questions and I gave her crap not thinking up her own!

Then, July 31 (again, the delay was mostly scheduling snafus), I had my first "testing" day. We decided ahead of time to do all the tests except the right heart catherization - my doctor said there was no use doing this test since I didn't plan to be listed right away and we would have to redo it later. So no scary heart needle test for me. But everything else I had pretty much done before. They sent me a schedule ahead of time so I knew what was coming and, again, my mom came out to the city for the process. (Yes, I know, my parents are saints, but they also REQUIRE you to have some support person there - they are evaluating your support as well!) Day 1 was basically an echocardiogram (like an ultrasound of your heart, with a "bubble," which was weird), followed by tons of PFTs (the kind in the box), followed by an arterial blood gas test, and then outpatient blood draws and an EKG. Piece of cake.

For me, the biggest hurdle for day 1 was just hearing people say "lung transplant candidate" and having to hand over requisitions that all said "transplant evaluation" on them in big letters. Talk about a bit of a shock. I even had one nurse at the echocardiogram unit ask me when I was scheduled for surgery. Um....hopefully not for a LONG time. But still, it wasn't so bad. Mostly just tiring and annoying, because we all know that hospitals aren't the most efficient places ever. Also annoying was the fact that they all call me "Betty" at the hospital. I'm guessing this is because my last name is "Beatty" and they think "Piper" is way too weird to be a first name, but still...Betty? At least the doctors can get my name right!

I think the best thing about my experience was actually the lag in time between the initial conversation and the initial consult, and then between the consult and the actual testing. Yes, at the time it felt like it was just drawing out the already painful reality, but looking back it was such a lifesaver to have time to process and accept that I might need a tx before diving into the testing. Because honestly, you don't want to be any more stressed than you have to be for this process. It was also helpful that I felt pretty good at the time I was getting evaluated (although two weeks later I'm on IVs!) because I would NOT have handled it well had I been too sick. So I guess that's a good reason to get tested early...I cannot imagine doing the evaluation if you actually needed a tx right then. Too much to handle when you're already scared or really ill, in my opinion.

So that's day one. More fun with days 2 and 3 coming soon!


  1. Thank you for sharing this!!!!! It's a huge help for someone who is considering TX even though it hasn't been talked about yet with my DR.

    It sounds like you have an excellent support system!!!!

    Can't wait to hear about the other 2 days!!!


  2. SURE!! Link me up! I'll do the same! I would love to follow your story. My tx was before the time of blogs...wouldn't that have made life easier..lol! My transplant experience was relayed in e-mails which I typed out at the bottom of my blog.

  3. Piper, I also wanted to comment that I think you are very wise in doing this process slowly and in plenty of time. It is a life-changing event, and you really have to change your way of thinking. From the time I was origionally evaluated to the time of my tx was nearly 10 years. They required sinus surgery proior to tx, and as it turns out it was the best thing for me. I was pretty healthy all through high school (I was tx'd at 24). I had another sinus surgery early in college that allowed me to finish school and be re-listed upon graduation. It all worked perfect, but I also knew the whole time I could be re-listed in a heartbeat as CF is ever changing. I was lucky, but i'm glad the docs mentioned it early, because otherwise I would have been slammed with the idea of trasnplant when I got very sick. I think the eval is hard, they really put you through the ringer...but it sounds like you are being incredibly smart about it. The scary day is when the docs say "ok, time to list you"...then you panic! Hang in there

  4. You were so right when saying it's best to get the evaluation done before you get very ill. I also did mine at about the same lung function as yours, and the testing days wore me out- I'd go home and go right to bed, sleep till it was med time, then sleep for half the next day. It was exhausting.