Thursday, February 5, 2009

Keep On Keeping On

So today was my first follow-up with the transplant team since the end of my evaluation in August 2008. I wasn't sure what to expect, but I followed their instructions to the letter: I invited a support person to come with me, arrived 30 minutes ahead of time to complete any paperwork, and wrote down all my questions so I would remember to ask. Amazing how much mental prep goes into these "routine" visits. Anyway, I was pretty on the ball, but even so I was definitely nervous. It's funny - I've been in and out of this hospital every month at least for a few years, but ever since I started visiting with the tx team it's just taken on a whole new meaning. I don't even really know what I mean by that. I guess just that this is now the place where I've cast my lot - I am choosing to make this hospital part of the biggest medical experience of my life. I didn't have to do that -- there were plenty of other places I could have gone -- but I chose Columbia Pres. and now that is truly, more than ever, "my hospital." I think I would feel very strange leaving it now. So yeah, walking in there today was both comforting and a little overwhelming.

The meeting itself was pretty much what I expected. I filled out a form to update the team on any changes or hospitalizations since my last visit. Then I went back and met with the tx coordinator. She and I discussed what tests had been done, what still needs to be done, and what the listing process will look like. At one point she had to leave the room to take a page and she handed me my eval sheet and told me I could look at it. So funny - it was a narrative of my complete medical history, including comments from doctors and other random facts. It talked about my gene mutations, my hospitalization history, my compliance with meds. Parts of it were funny (like the quote "she denies any pregnancies" - as though I might have hidden the truth), and parts of it were more sad ("she had a relatively healthy childhood with minimal CF-related infection until age 14, at which point she began progressive decline"). Parts were just interesting. As a whole, I was pretty fascinated both that the document existed and that they let me see it.

Moving on, the tx coordinator told me a few really good things. First, she told me that my case had been presented and accepted, meaning that if I complete the testing she would be authorized to list me tomorrow, if needed. That was awesome news, and something that just sort of took a weight off to hear. Something about the whole "acceptance" process seems weird to me - I'm glad to know I "passed" I guess. Anyway, she also said that I should start coming to the patient education group, and gave me a schedule for that. It's presentations by the social workers, nutritionists, surgeons, and other members of the team on pre- and post-tx living, as well as on the surgery itself. So I guess I should start making some time for that in my schedule, since I have SO much free time already (haha).

My tx pulmonologist came next, and he and I chatted about my recent infection history, which has to say the least. Basically he said that even though my PFTs are still in the high range for listing, it would be worth completing everything. He seemed generally nervous given how much I've been sick lately. I don't blame him - I'm nervous about that too. He is also unbelievably kind and wonderful to talk to. I am so blessed to have incredible doctors. But the plan as of now is to wait, but to keep a closer eye on things. I have to see him again in three months, and I get the feeling that if we can't say at that point that the recent infection blitz was just a one-time fluke, we may move forward. I dunno - speculation on my part there. But it was pretty much what I expected.

Finally I met with the tx surgeon, who gave me the whole rundown on what to expect from tx - the complications, the possible outcomes, the statistics, etc. It wasn't news to me for the most part, so I was able to stay pretty calm. I do think that there's a part of this whole process that is kind of in your face (for lack of a better term) on purpose - they tell you the worst possible outcomes b/c they want to weed out the patients who can't handle those possibilities. And maybe that makes sense, but of course it's always scary having people talk about tx and suddenly realizing that those are YOUR lungs they're talking about removing, YOUR chest that might sit open for 6-8 hours, YOUR life that will hang in the balance. It's oddly clinical in the moment, but sitting here processing it now I kind of get shivers. And frankly I think that's good, because I think it means that I'm feeling this as real and not just removing myself from the process. Or at least that's what I tell myself now.

I will say that the events of this week made this appt all the more surreal. Knowing that a few states away Jenn struggles to hold on to life, while down south Garran takes another breath with his new lungs - it was all very intense. They are both so brave, and such role models. Both of them have fought so hard to live, to get the new life they both deserve so much. And it saddens me to no end that one of them might never get that chance, but it also makes me all the more determined to pursue this process. I don't know when tx will come for me -- I hope it's not for a while yet even despite some of the signs -- but I do know I WANT it. I want it and I will fight for it. And I hope that if I'm lucky enough to get it, I will be wise enough to cherish it.

All good thoughts and positive energy to those who are fighting tonight. Your courage and strength is beyond this tired New Yorker's humble understanding.


  1. Wonderful news Piper, you got approved! That is great! It's such a surreal thing to hear the docs talk about all the possible complications, risks, etc. The medical record thing is funny about you deny any pregnancies. When I started going to school for medical transcription, I got such a kick out of the verbage. Docs always say that, "denies smoking" ..."denies drug use" etc. It's funny.

    The patient education/support group sounds great. I tried to do it often before and after tx and it was helpful. The docs can tell you stuff all day long, but when you hear it from other people going through a similar experience, it's just different. That is why I love the blog world!!

    Hang in there girl!! Great news!

  2. So glad to hear you were approved :) So funny saying that likes its a loan :)

    "denies pregnancy"...hahahaha


  3. I could have written this post myself. I go back on March 11th.

  4. Piper,

    I'm glad your appointment went well and that you like your doctors and hospital so much. I hope it is a long time until you have to go forward too!