A message from Mike Devlin, CF patient and CFPals volunteer.

Let me share a true story I heard this past week. To honor patient confidentiality I will only use the first name.

Andy is a tall, too thin, 22 year old young man. He is a college graduate who earned his degree at USC. Andy spent time with me chatting about his school days, the tough times living with CF presented to him as he negotiated through school, the frequent hospitalizations he experienced for the first time away from home and his current life situation.

When I met Andy he was just returning from a visit to the CF Care Center at Stanford where he is being carefully watched for worrisome weight loss and a sinus infection. But Andy was all smiles because he was given a reprieve. "Wow, Mike", he said with a big smile, "I dodged a bullet! My Doctor ALMOST admitted me but said I can have another week to see how I am doing. It is the only thing I really hate about this disease; when I have to go to the hospital. It is so boring. My girl friend comes to visit me but after a while there is nothing to do and we just sit there sometimes watch TV but that isn't much help. I feel so bad that she is there so much and it is so boring."
"And I have this weird problem the Doctors can't explain. Every time I lie down I get blood in my lungs. I have to sleep sitting up and I am really wishing soon they can figure this out. I just want to get better sleep and lie down! Plus you know, it is kind of scary to get this blood in my lungs. I mean, I'm OK with it now because it usually goes away but there have been a few times when it doesn't. I mean even when I have a CT Scan and I lie down on the table I get blood in my lungs. You know at first the Doctors told me it was impossible that was happening to me. I told them; well it's my body and I KNOW it is happening. Why would I make that up? So finally when I was in the hospital for CT San and I had to lie down they saw it for themselves. Now they believe me! But they can't figure it out. Guess that will mean more time in the hospital for me. That's the worst part of it. It is pretty hard to keep up with your friends and stay in touch with the outside world. The food isn't very good, though they are trying to improve that now. Sometimes my buddies bring me pizza but then I feel bad cuz after we eat and spend a little time it is boring for everybody and I feel bad for them."

Andy went on to discuss how he really feels lucky over all, and has been able to get a degree in art. He hopes to get strong enough soon to open a studio. He shared with me that he has met plenty of kids over the years who are not as lucky as he feels. His family could send him to college and he had money for pizza when his friends came to visit. He said he really felt it for the first time when he was away at college and had to go to the hospital alone for the first time. So now, he says, whenever he is in the hospital he tries really hard not to use whatever few games might be available because he doesn't want to deprive someone else from using them. When he had to go to UCSD for treatment he noticed they had some electronic toys. He would not use them because he knew some kids never got the chance.

We discussed the problem from his CF perspective. Andy said he thought about sharing his lap top but was worried about infection. How do you sanitize a lap top? You really can't. And, like most 22 year old young adults his concern of losing touch with friends and being bored were of major importance to him.

I share Andy's story with you in thanks for your support and as a reminder of all the things we can and must do to support the thousands of CF and lung disease patients who struggle to live a meaningful life despite as Andy called it "the bother" of having to live with CF.

Thanks for being CFPals. Together we will make a difference, add a smile for today and hope for tomorrow!