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Amanda Thorpe

Pulmonary hypertension or fibrosis

4 posts in this topic

Dear Amanda,

Sometimes you just wonder how much more you can take. I know you have the positive attitude that will carry you through. But still... :temper-tantrum:


I read that one symptom of Pulmonary Hypertension is shortness of breath when you lay in bed at night. Well, I have that. My last hearth catherization, Jan. 2010 showed PH but my most recent ECCO, Dec. 2010 did not. I get out of breath easily. My fibrosis has increased so but has my PFT. We sclerodermians are just mysteries. :emoticon-dont-know:



ISN Artist

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Hey ladies I forgot something...it could also be myocardial fibrosis causing my shortness of breath (SOB). I was diagnosed with myocardial fibrosis last year by which time it had become inactive and it is possible that it's become active again. Or maybe it's something to do with the my bi ventricular ICD although that may be unlikely bearing in mind it was working perfectly in February?


The SOB is currently only upon exertion but has come on rapidly, say within the last 6 weeks, and in that time has quickly worsened.


Well at least I don't have long to wait for an answer having the ECHO and rheumatology appointments next month, I have the ECHO one day and the rheumatology appointment the next so I won't be waiting long for the results either...:great:...I wonder what they'll be! :blink:


Take care

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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