In the meantime, I promised I would answer my own questions, so here goes:
Group 2: Pre-Tx CFers/Patients
1) Age?
26
2) What stage are you at in the tx process (i.e., evaluated, listed, etc)?
Evaluated but not listed - my chest is still 100% natural, baby.
3) Why did you decide to have a tx?
Lack of a better option I guess. I'm totally freaked out by the prospect, but also willing to do whatever it takes to stick around here as long as I can. And I'm excited about getting some lung capacity back, but I'm not so naive as to think it will solve all my CF problems.
4) What are you most excited about for post-tx life? Most scared of?
I'm from CO and I used to love to hike in the mountains. I can still exercise pretty well, but not so much at high altitudes. Stories I've heard from post-tx CFers make me super excited that I'll be able to breathe again on top of Pikes Peak someday! As for being scared, I'm kinda freaked out by surgery in general. Been lucky for a CFer, never having any sinus surgeries or anything besides a random appendectomy earlier this year. So such a big surgery looming in my future is a big deal to me.
5) What is one question you would like to have answered about tx?
Well, considering I made up all these questions, a lot of them have already been answered. But I would be curious to know what the process of "reinflating" or expanding the lungs was like for people. I hear about this a lot, but I don't really get what it means.
Finally, I've debated a lot about this next thing because I REALLY don't do the "sick pictures" thing, but I know given some recent sh*t that's gone down a lot of people are understandably skeptical about internet blogs in the CF community. I for one have been super impressed with how well most of us have kept up faith in others throughout all the madness, but since I know this blog deals with some really sensitive issues, and because I want people to feel totally comfortable sharing and taking advice in this space, I've decided to post a couple of quick pictures of myself and my gorgeous IV line I have in right now. And even better, this will give some of you probably your first glimpse of the rare and ellusive "arm port" - in which I am a HUGE believer.
(Ignore the fact that I'm laughing. Do you have any idea how hard it is to take pictures of yourself with bothyour face and your entire upper arm showing?)
Shout out to Apple, bc these pics were also taken with my brand new iphone. I'm SUCH a fan.
LOL good thing you shaved your armpits hahahaha!!!!
ReplyDeleteSo that is what an arm-port looks like? Does it feel weird? I am trying to decide when I need a port where I want it...if given the option of course.
Are you SURE this is you haha!!!!! J/K!!
<3
Is that a true port-a-cath in your arm?? Never heard of it. Had 2 chest ports, but COOLNESS!!
ReplyDeleteYes, that is an honest to goodness arm port. I got my port at (almost) 18 and there was NO WAY I was letting those docs near my chest. Typical teen. Anyway, I pushed hard for an arm port and have loved it ever since!
ReplyDeleteAmy, some docs will tell you they don't do arm ports or that arm ports don't last as long. BS. My port has been in 9 years and has never so much as missed a blood return, never had an infection, and is still infusing as fast as it did on day 1. The only downside I see is that I can't access it myself because it moves and I would have to do it one-handed. But it's barely visable even in strapless dresses and when it's accessed I can wear even tight shirts as long as they have sleeves or I just throw on an ace bandage. Wonderful.
nice!!! I would have loved that in the 8th grade vs. the other port under my boob
ReplyDelete