PJ goes to Cleveland Clinic

June 11, 2009

I went to CCF today. Parked in the wrong garage, there for four hours, cost $10.

Seen Chapman M.D. He seems to think this might be caused by Sjogren's

and possibly gastric reflux with aspiration causing my problem. He looked at my

CT, CXR, PFT, and has decided to increase Advair to 500/50 twice a day, and

start me on Flovent puffer 220 twice a day to treat inflammation in my lungs. He

wants to treat the lungs directly with steroids at this point instead of giving

me a pill that would increase the possibility of systemic side effects.

He has ordered a gastric emptying time and high resolution esophageal manometry.

If positive result he said he will order Reglan. Also, raise the head of the bed

four inches and stop eating four hours before going to bed.

He says if condition worsens despite changes he will consider FB looking for

lymphocytic alveolitis to treat systemic immunosuppression.

He suspects I have components of follicular bronchiolitis manifest as obstuctive

impairment and chronic aspiration. Possibly lymphocytic alveolitis, but not

hypersensitivity pneumonitis.

He says to follow up in three months.

I still have to study all the info he gave me. Thank god it is all wrote out for

me. I have a lot to learn. Plus, trying to keep up with all these doctor

appointments and drugs. I really can't believe how much my life has changed in

the last three months. I read the posts and as much as I can find out about this

disease. It just seems like I'm getting deeper in the muck!

I sorta feel numb too. I can't really call it depression. And isolated too. My

family and friends have been supportive and I'm thankful, but nobody really

knows how I feel.

Anyways, thanks for all your input. You all are in my prayers!

PJ

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