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  • Lynanne
    Post count: 2

    Hi. I was here about 9 years ago when I was first diagnosed with PAH secondary to scleroderma. My RHC came back with a pressure of 27 but my wedge was 18. Now my cardiologist said my wedge could have been raised because I was super sensitive to the wire going in and I was VERY jumpy. My sob continued in the years following but I was told my echos were unchanged. It was left to my rheumatologist to keep an eye on it and refer back if needed. No treatment. Well the SOB has continued. My rheumy insisted almost mad at me like I was a hypochondriac that I did not have PH. Two years ago my family dr referred me back to my lung dr. Unfortunately I saw his intern or resident. I didn’t complete my 6mwt the first time last April with my oxygen levels dropping drastically. In aug after her giving me new puffers I did slightly better. She told me I needed to have gastric bypass and that I had severe exercise induced asthma. About 4 weeks ago I had an echo and finally saw my dr. My right pressure is now 84 and I have severe fluid. The diuretics aren’t working yet. They will schedule a RHC once they get my fluid levels down. My feelings are all over the place. 9 years ago I went through all the grieving of this disease. Then over the years I came to believe I didn’t have it even though I can barely walk across my house now without being SOB. I did everything I could to keep an eye on this disease so if I did have it it would be caught early and yet here I am again. I think part of me is in denial-if they were wrong before maybe they are wrong again. The other part of me is scared and angry. Keep in mind I have a couple of the best drs for PH and rheumatology in my area. Experts. How did I fall through the cracks

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