Last week I traveled to Duke hospital to meet with the transplant team again. It went as it usually does...my pulmonary function test, chest x-ray and disease process all indicate it is time for transplant. However I look good, not like a person needing a new set of lungs so... I wait, they will have their team meeting to determine my fate.
More waiting. I hate waiting.
Here is a little diddy I wrote a while back-
Am I sick enough
for them to crack open my chest
fish out my gills
add replacement parts - new and improved
sew me up
pump me full of drugs
and wait to see if I'll live or die
No, not yet, wait until you're sicker
or
Yes... move ahead or drown.
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2 comments:
This is one thing I HATE about CF. Folks with CF can *look* so good. Same thing with Elizabeth. Sometimes I suspect folks think we aren't being truthful when we say she has a disease...because she *looks* so good.
What does *looking good* have to do with medical necessity? Good grief.
Didn't Ricardo Montalban say, "It is better to look good, than to feel good..." Whatever, he's dead...
Tina - I hope that, in the near future - maybe at that next team meeting - they too decide it's time... I hope that in the near future you no longer hate waiting because the waiting will be over and you'll get what you need... I know that it's a gray area as to when we're "sick enough" - I was sick enough when I pursued transplant... At my center, they worried that I had waited too long - but I got what I needed...
I hope your journey is as mind-blowinginly amazing as mine has been, Tina... In April, I will have had her lungs for nine years - and I think about it every single day... And I think about her every single day. I've been lucky enough to find out who my donor was, and I've met her family and friends... She gave me the most amazing gift in the world. I hope you receive an identical gift very soon...
On New Year's Day, I got to ride the Donate Life Float in the Rose Parade!!! In a few months, I will take her beautiful lungs 94 floors up the stairs in the Hustle up the Hancock -- and I'll have a half-dozen of her precious friends climbing by my side...
Tina -- after living so long with cystic fibrosis, breathing with real lungs is something I hadn't imagined would feel this good... I can't wait until you have your turn at bat...
I blog about organ donation at www.ReviveHope.com My last dozen posts were about my Rose Parade adventures... Some of my story, and some of my donor's story is at www.ClimbingForKari.org
It's an incredible journey, Tina... I truly do hope yours is more magnificent than mine...
Love,
Steve
Steve Ferkau
Chicago, IL
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