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April 07, 2005

On Breathing

I've been meaning to do a lung update for ages. Since everyone keeps asking how things are going. For those of you just joining us, I have something called Idiopathic Pulmonary Fibrosis (IPF). The Pulmonary Fibrosis Foundation has a pretty decent web site on it if you want more details. But in general it means this:

Pulmonary Fibrosis involves scarring of the lung. Gradually, the air sacs of the lungs become replaced by fibrotic tissue. When the scar forms, the tissue becomes thicker causing an irreversible loss of the tissue’s ability to transfer oxygen into the bloodstream.

I'm not sure how I got it or even when exactly I started feeling the effects of it. In hindsight it was quite a bit before I saw a doctor about it. To put it bluntly, it sucks. I'm the kind of person who used to walk everywhere, go out dancing till the wee hours of the morning, and just be active all the time. These days I take things much more slowly.

I've tried various treatments and none of them seem to have done much, except maybe stabilize my condition. I haven't gotten any better or worse in a few years. So, the current step is waiting for a new lung. So, not much has changed. I'm definitely towards the 'top of the list', but that is all due to change when some new regulations go into effect that will make them order the list by 'need' in another month. Bah.

So I'm now opening this up for any questions you may have about it all. Ask away, I'll do my best to answer.

Posted by snooze at April 7, 2005 09:05 AM


I am so angry I don't even know where to begin. I can't even...who the hell decides who "needs" a lung, or a heart, or a kidney or any other organ more than anyone else. Who even has that right, or can even make that kind of decision fairly? Over ten years we've been friends. Ten years you've supported me, you've loved me, you've been there for me, even when I didn't think I needed it, or didn't appreciate it. Who the hell are they to sit around a table and blithely risk your life, risk taking away another ten years from me, thirty plus years for your parents, and all of those years from every other member of your circle of friends and family who know and love you.

You've been waiting for so long, how dare they make you wait even longer now. It's not right, and it's sure as hell never going to be fair.

Posted by: morecomplicated [TypeKey Profile Page] at April 10, 2005 04:22 AM

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