Re: PAH article encouraging

[Guest guest]

I found this article today relating to PAH. Sorry I attached to the "rash" links.

Your friend Cole thought that you would be interested in this article from iVillage Total Healthhttp://yourtotalhealth.ivillage.com/drug-effective-against-heart-lung-disorder.html

Subject: Sher---My hand rashTo: Breathe-Support Date: Saturday, June 21, 2008, 12:03 PM

Sher,

I have what Dr on at Duke has called a "mechanics hand" rash. It's a symptom of a collegen vascular disease though we have yet to pinpoint which one I have. He has said that when it "flares" next we will probably biopsy it and that will give us more information.

In the meantime, it comes and goes but it's more of an annoyance than anything else at the present time. I get peeling, callousing and itching that drives me mad. More on my right hand than my left but it's on both. As I'm looking at my hands right now, my left hand is pretty clear, my right has some peeling on my palm, and all of my fingers, there are callouses in between my fingers on the sides. It is mildly itchy as I'm sitting here.

I first noticed this rash in November of 2004. I had the rash before I had any significant symptoms of my lung disease but I never connected it until I saw Dr. on at Duke. It vanished the entire time I was on prednisone and stayed gone for 6 months after I was off it. It only returned late last year. I might not have even mentioned it to Dr. on except that he was so incredibly thorough in his examination and his questioning. I'm glad I did because it may eventually lead to an answer of how I ended up with this blasted lung disease.

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

I'm Back!

Hi to all! I have been in Atlanta yesterday & today was my 6 week study appointment. at Emory. Time has just flown by since I started the Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook of them actually) and saw Dr. & Tamra. Dr. tells me the rash on my right hand is NOT eczema. He said it was vascular in nature and I might have touched something. I will have to give them updates on it through email. The highlight of the day for me today was: The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I was on room air the entire walk, I did not have to stop, I did not get dizzy, etc. The lowest sat rate was 82% but mostly it was around 85% or higher. In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I was still on

room air and I was standing up!! I had all the PFTs before the 6MW and all of those tests are stable and maybe a few points higher. Today's DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range between 34% and 43%. I learned today that there are different standards of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so difficult for me is: FVC. I attempted that one many times. Maybe I will eventually learn to do that one. My FVC numbers were stable from February to June. I am going to ask Max to give me some lessons on panting. Maybe by August 1st, I will be ready to pant!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl