Tuesday, August 19, 2008

CF = Completely Fake?

I wasn't going to post anything about this at all because I didn't want to add attention to a nasty situation, but now I can't sleep and I figure I may as well just get it off my chest.

Quick update on me: I'm back on IVs because things were just getting a little too junky. It's annoying because my PFTs were basically at baseline during my tx eval (which I promise to write about soon!), but I was feeling like crap every night and more or less couldn't breathe right before treatment times. Too much nasty gunk. So the abx are helping and I finally feel clear again. Yay! And if it weren't for the itching, which I think is a reaction to the Zosyn, I'd probably be asleep right now.

But I'm not, and besides the itching thing I think part of what is making me lose sleep right now is actually the internet. Um, no, not because I'm so in love with this blog that I just had to post before I could sleep, more because some things have taken place on the internet lately that have really disturbed me. If you're aware of the whole "Gina" issue than great; if not, long story very short is that a well-known website dedicated to a young woman with CF who was apparently trying to survive a transplant despite unbelievable setbacks, was just recently exposed as a fraud. Only when I say this woman's problems were "unbelievable" I should probably add that we all believed her. Thousands of people, most of whom likely had some knowledge of CF, were completely fooled by this woman. And I was definitely one of them.

The whole thing is really upsetting to me, for I think pretty obvious reasons. I did not ever claim to "know" Gina, although I checked her blog frequently - I did so out of sympathy and curiousity, rather than friendship. I wasn't burned nearly as badly as some of the others in the CF community. But I was reading this site as I was going through the tx eval process, I was filing away Gina's "experiences" as realisitic possibilities. In short, her story both gave me hope (that someone near death and on ECMO could receive a very last minute tx despite massive infection) and scared the sh*t out of me (that such horrible results could come as a result of tx). I know parts of her story really could happen; they just didn't happen to her. But I am left trying to reconcile the fact that I know her story was fake with the fact that I have been incorporating her experiences into the formation of my own view of tx. It's hard to just discard all that info now - I honestly don't know whether some of my feelings are related to Gina or not. I have to assume her "story" colored my viewpoints on the subject, but I wouldn't know where or how to begin subtracting that color from the picture I have painted now.

The online CF community has lost of lot of trust in the past few days. The sad thing is that online support is pretty much the only way groups of Cfers can "meet" without risking serious cross-infection. I have been debating pulling out of the forums and groups for the past couple of days...I just don't want to risk more breaches of trust and serious misinformation. On the other hand, the forums are so helpful (example: tonight I returned for the first time since the whole mess started to ask for advice on this stupid itching). There are some genuinely wonderful people there. But they are people whose trust was violated, and who are in turn capable (sad as this is to admit) of violating the trust of others.

I guess we found yet another potential side-effect of living with this disease: Cystic Fibrosis Related DRAMA.


  1. I am flabergasted as well. Like you, I filed away her experiences into my memory to store for when the time comes for me to seriously think of TX. I like what you said "I wouldn't know where or how to begin subtracting that color from the picture I have painted now". I second that! It's so hard to just let something go that was a huge part of your thinking for so very long.

    Glad the IVs are working!!!!! And I can't wait to hear about the eval! :)

    P.S. glad you decided not to leave completely!!!! <3

  2. I am a CF'er...7+ years post tx. I wanted to be able to be here if you have any questions about TX. I know with the whole "Gina" episode, may Cf'ers have been reconsidering transplant. I have been through it, and would be happy to talk about my experience. I don't want any CF'ers to shy away from the TX experience.

  3. Pipes, if it's any consolation, she fooled people who had gotten complicated transplants, including me. In my "confession" on the board, I wrote about the incredible importance of trust in this community -- where we rarely get to see each other. I realize G dealt that sacred value a huge blow.

    But I hope you don't trade blind faith for blind doubt. I'm not abandoning trust over this -- though I admit some wounds might have to heal before I throw myself into the fray again. There might have to be an FOP support group!

    You know, I really though G's story had become a good resource for people in your position. That gratified me. I didn't get to write much about my own ordeal, cuz I was too screwed up. Well, it's no resource. But if you have any questions about the real process, you can always PM me.