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Thursday, March 10, 2011

69%- Unnatural Progression

One of my favorite songs is Unnatural Progression, by Dan Mangan. You can listen to it here.
It was played in the documentary 65 Red Roses about the life of Eva Markvoort.  It's poignant... it's about CF... it's about MY CF.

I was admitted to Hartford Hospital on 2/14/2011 with an FEV1 of 65% and an FEF25-75 of 50. On the 7th day, my FEV1 went to 77% and my FEF 25-75 went to 55. I was discharged on IV abx three days later.    Oh one detail.. I essentially don't have an immune system. I receive IVIG replacement therapy every three weeks to boost it... so I was feel better, getting on the treadmill, doing what I am supposed to do and went in today for a follow up.

FEV1 69% and FEF 25-75 50.   OK.. SO WTF?  Needless to say the doctor was concerned.  Sooo I am going to do Lidocaine nebs for a week 3x/day and see if the cough stops the reactive airway stuff but while running the risk of the staph of the sinuses to take up residence again in my little lungs... I go in 7 days for another PFT.. if no improvement back in.

Im frustrated... I want to feel energized and not like I want to sleep all the time.. I want to be able to not be terrified of public places, airplanes, other countries for the germs they hold.

I will leave you with the lyrics:

Was a soldier coming home
Was to bring my body back 
Wasn't sure about the darkness 
Heart was rambling on like any day 
Just like any day

If I was to write,
I don't mind, I don't mind
I might forget about it 
Though my day has come it's already gone 
Some would say it came too soon. 

Was a light bulb burning out. 
Waiting for my mother's touch. 
She wasn't there amid the thunder, 
I'll remember how it used to be. 
How it used to be. 

If I was to write, 
I don't mind, I might forget about it. 
Though my day has come it's already gone. 
I just need to get home. 

Was it something I said? 
Was it something I said, oh lord?


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