Things are changing

[creditcrunchie]

I have just been for annual lung and heart check ups. PAH in its early stages is showing . I have obviously been reading up about it and I see an awful lot to worry about so any information which could help when I see my rheumatologist in August would be appreciated .

[lifeforce]

Hello, I am going through the same thing. I have had diffuse Scleroderma for 14 years and my lung doctor has sent me for a heart catherization this Friday. My internal heart pressure has risen since last year and she wants to know why. My rheumy could care less,he is a waste of space! Can't say I am looking forward to it,but one step at a time. Enough about my woes.I wish you good luck!!

[PaleIndian2]

Hi, it seems you are a little ahead of me. I have Limited Systemic Sclerosis and I go for more tests to the Royal Hallamshire including right heart cathertization in August. Good luck!!!! I think we will both need it.

[judyt in reply to PaleIndian2]

Hi to you both, I have Systemic Sclerosis and PBC and in the early days of my Scleroderma diagnosis it was discovered that I have Rheumatic Heart Disease. Apparently I had Rheumatic Fever as a child and I didn't know. Nor did my Mum I suspect because she never mentioned it to me and now of course she is not here to ask. Anyway, the RHD caused moderate Mitral Stenosis which was monitored along with my Scleroderma symptoms and eventually it caused Pulmonary Hypertension, which is not the same as PAH but is similar in its effect. The decision was made to repair the Mitral Stenosis by a procedure called Balloon Valvoplasty where a catheter is inserted into the groin and passed all the way up to your heart along the venous system. I was awake all the time, although given a mild sedative, and could watch the whole thing on a screen. Interesting and not a bit scary. While he was there, so to speak, the Cardiologist did a Right Heart Catheter test to make sure I didn't also have PAH. None of it caused any pain or concern to me. The only down side is that you can't eat of course so get very hungry and at the end you have to stay lying on your back with pressure on the site in your groin to make sure it doesn't bleed. I forget how long you have to wait with this gadget strapped to the top of your leg but I do remember a nurse spoon feeding me yoghurt!!!! because they know how hungry and dehydrated you are getting. Everyone was wonderful, caring and helpful and I would never worry about anything like this again. Of course for you there is still the unknown about the level of PAH you have but there are good medications available now and the people I know who have PAH seem to be happy enough.