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Posted by barefut , 26 February 2009 · 777 views

Been having some gastrointestinal and pulmonary issues that have been bothering me more in the head than in the lungs or gut. Makes me wonder what is going on in there. Of course I just had my 6 month check up and failed to mention the gut stuff. The shortness of breath which I did mention to my pulmonologist, didn't seem to phase him. It bothers me however, since I haven't had to deal with it for such a long time. Maybe it is just a flare? Maybe it is to do with my fall upon my ribs? The fact that it only occurs with exercise makes me worry about pulmonary hypertension.

My pulmonary doctor asked me to participate in a study. A right heart catheterization is involved. Sounds scary but folks I talked to here who have been through one assure me not to worry. I try not to worry but when I see that possible complications include death, I wonder if it is being irresponsible of me, as a single mom, to put myself at risk? Or is it irresponsible of me as a sclerodermian to not participate? I'll bet there's more of a risk of me getting killed by a bus while crossing the street than during a right heart cath. I do feel a responsibility to participate. And if I gotta go, I'd rather go in the name of research than in the name of a bus.

One purpose of the study is to evaluate the effectiveness of non-invasive screening methods for pulmonary hypertension and pulmonary arterial hypertension to see how well they can predict and confirm diagnosis in scleroderma patients. Right now, a right heart cath is the standard method of testing for PH/PAH and it is invasive and expensive. Since RHC is so invasive, it is only used to confirm diagnosis not to screen for it.

The other purpose of the study is to see how many scleroderma patients develop PH/PAH. The study will be performed in about 70 hospitals in 11 countries with hopefully 500 sclerodermians. Each patient will be followed for 3 years. Results should be concluded in the year 2013. So that's it. Pretty cool.

So, in light of my recurring shortness of breath and the anxiety it evokes in me, and since early detection of PH/PAH is important in treatment and prolonging life, I think this study couldn't have landed in my lap at a better time. It's probably no coincidence that my doctor got the "green light" less than an hour before my appointment, at which time he asked me.

I want to thank Shelley B) (smart smiley) for clearing my brain fog :huh: (confused smiley) in the identification of the thingy that clips onto your finger and measures your oxygen saturation level. OXIMETER!
I knew that once. :( Really. I did. ;) I gotta get me one of those.

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