Worried About Results

[icesktr189]

I got my records back today from my cardiologist for my disability case. It shows that I have mild pulmonary arterial hypertension and mild tricuspid regurgitation. Should I be worried about these??

sorry for not writing more I am exhausted right now.

[juliegee]

Hi Dani-

Sorry for finding out that way- similar to how I found out I was in diastolic dysfunction (heart failure.) Deep breath. Read all you can about PAH. Keep in mind that yours is mild & may NEVER progress. PAH, however, is VERY serious and you need to be working with a good cardiologist, (I don't have one either ) or pulmonologist, or both to address it now. As I recall, you are quite young. Chances are, you have a connective tissue disease (like many of us here) that had caused you to develop this very early.

There are steps you can take to keep your PAH at a mild stage, but you need to be working with very proactive doctors to tailor a treatment plan just for you. It definitely sounds like you may not have that team in place if you learned your DX accidentally .Unfortunatley, I can relate. I can't remember how well you are able to function now, Dani- but if you can- try to walk & exercise a little bit every day. One school of thought says that untreated hypertension causes PAH. For that reason (and because of my diastolic dysfunction) I've chosen to do a low salt diet now. Very tough with dysautonomia. My symptoms have gotten worse & I'm trying to find a balance. But, that's something you may want to consider.

http://www.pah-info.com/What_is_PAH

Have you had a right heart catherization or is your DX based on an echo alone? Do you also have diastolic dysfunction? I'm dealing with all of this now & just trying to sort it out myself.

This DX may not even be correct, nor does it have to progress. I am working to turn mine around by walking/running 15 miles a week and engaging in yogic breathing/practice.

From what I have read, the mild regurgitation of the tricispid valve is probably not worrisome. I have that for 3 valves, with the exception of the aorta.

I am sorry for all of the anguish this is causing you. It simply gives a name to all you've been feeling & will definitely help with your disability case.

Gentle Healing Hugs-

Julie

[icesktr189]

Thank you tons Julie for posting that, it means a lot. I just cant understand why my cardiologist never said anything to me. Its been a month since I had the echo done.

My symptoms started about 4 months after I gave birth. Right now I have chest pains, shortness of breathe and dizziness. Those are my main symptoms. I hope that the dx was wrong though :[ Is this disease always fatal? I am 21 right now so im hoping that I can find something that will help me. Sorry this is short, the drive to my doctors knocked me out. I will come back and post more after I take a nap :]

[Sallysblooms]

Your doctor should explain everything to you.

[juliegee]

Thank you tons Julie for posting that, it means a lot. I just cant understand why my cardiologist never said anything to me. Its been a month since I had the echo done.

My symptoms started about 4 months after I gave birth. Right now I have chest pains, shortness of breathe and dizziness. Those are my main symptoms. I hope that the dx was wrong though :[ Is this disease always fatal? I am 21 right now so im hoping that I can find something that will help me. Sorry this is short, the drive to my doctors knocked me out. I will come back and post more after I take a nap :]

Dani-

Keep in mind that you don't even know that you have PAH. With an echo alone- you can't be certain. Many other DXes (that are reversable) can mimic PAH. A right side heart catheterization is the gold standard for diagnosis. You need to see a pulmonologist, Dani.

Has any doctor ever told you that s/he suspects that you have a connective tissue disorder? I ask, because PAH is very rare in the general population, but relatively common among folks with CTD's.

I'm in the middle of the same thing. I just happened to notice I was in diastolic dysfunction/heart failure on my echocardiogram report as I was delivering it from my one doc to the next. (Just like your situation, doc #1 never even mentioned it.) My rheumatologist, upon seeing that info, did a 6 min walk test (a pulmonary function test) on me. I failed it My oxygen sat dropped to 85% after 6 mins of walking. I have always been told I have a CTD. I am still trying to figure out which one. My next step is to be evaluated by a pulmonologist too.

When you get your appt., Insist that the pulmonologist thoroughly evaluate you for PAH. Apparently, unless you have very overt symptoms; they are hesitant to test in young people. If you do have it, insist that s/he stage it so that you know exactly where you stand. There are things you can do very early to treat it so that it progresses as slowly as possible.

I know how scared you are. Me too. I'm sending prayers, good thoughts, and gentle healing hugs your way.

Julie

[icesktr189]

Thank you Julie, I am trying not to over worry until I get back into my doctor right now. Have you had additional testing done yet or are you still waiting for your results?

Im not really sure how to read my echo, but I want to find my pressure rating for my right side.

Thank you tons, I hope you find answers soon. Ill let you know how it goes monday

[firewatcher]

Dani,

I have a friend whose Mother had been treated for PAH for the past 20 years. She was just DE-diagnosed by two docs this past week. Even though she had been treated for it, she actually never had it! The previous docs were so sure, they never did a cath and mis-diagnosed her. It turns out that she has a hole in her heart that could and should have been found and fixed 20 years ago! Get a good doc, insist on the proper tests and don't worry! We all know how many things we have all been MIS-diagnosed with in the past. Try not to stress, learn all you can and stand up (OK, sit up) for yourself!

Let us know what you find out.