Tuesday, December 05, 2006

Update from the Inside

I seem to get very little done that I want to do... I get so homesick some days.



--Bess Truman





Today is Day 14 here at Camp Iwannagohome. My pulmonary function tests indicate that we've finally hit upon a winning combination of meds. I've been restarted on the Coly-mycin, but at a much lower dose than before. Pulmozyme is the latest and greatest edition to the lineup and that's working quite well. My FEV1 has climbed up to 2.14 litres. Plenty of room for improvement remains, but if things progress as well as they have in the last 4 days, I may be well enough to go home by Saturday.

Not much is going on around here. I'm starting to get "taste fatigue" from the few menu items that don't upset my system.

I'd like to rant for a moment about cepacia. I can handle a lot of the unpleasant and downright fecal aspects of cystic fibrosis, but the isolation from cepacia rips me to shreds at times. Cross infection control measures keep me in a world that can be very lonely at times. I cannot be around others with CF. I can't participate in events where other CFers might be present. I have to gown and glove up whenever I'm around medical equipment that others will use.

What bothers me the most is that I didn't engage in any risky behavior to acquire this nasty germ. There are people out there who willingly put themselves at risk every time they have unprotected sex. Why don't STDs have a social stigma anymore? Why is cross infection in the CF world so heavily regulated when the world at large is far more dangerous? What's next for cepacia patients? Do we need to seal ourselves into a Teflon body suit before venturing out into the hospital halls?

Yes, I'm frustrated. I've been here too long and now that I'm feeling better I'm also a bit feisty (and snarky!) I can't wait to be home where things are familiar and I'm no longer a specimen in a petri dish.


Comments:
Hey, your friends are here. I know well the loneliness of the hospital, not because of cepacia, but the fact that I spend many hours just sitting there. When you get older people forget that you still might like a visit or two. Also I don't go to the CF Clinic hospital, so there are no other CF patients when I am in the hospital. I kinda quarantine myself for fear of other bugs in the halls, etc.
I am sorry you are feeling lonely, I will pray for ya also.... BTW been gone from the virtual world for a bit, but I am back now. Good to see you're still kickin.
You'll be out soon I know it. I will pull some strings with the big guy upstairs. ;)
 
hey. i know completely how you feel. hopefully you're home now.
 
Leah,
When you get the chance would you please email me? My old computer died and I don't have your email addy anymore. I have a few questions for you.

{hugs} Give Levi a big smoochy kiss from me! I can't believe how big he's gotten.
 
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