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  • Beverly
    Participant
    Post count: 5

    Hello,

    These are more details of our family situation: Pulmonary hypertension was mentioned on a CT scan of my SISTER’S a few years ago. She never received any care for this. I started to have severe decline in health about a year and half ago: extreme exhaustion, shortness of breath first with activity and later even at times without activity, dizziness, worse irregular heartbeats, chest pain (I do have heart disease) and a host of other symptoms. My health is completely different – barely able to function.

    I learned about PH and wonder if this is not a possibility. I saw a “supposed” PH specialist who dismissed it as a possibility. The reasons I was given do not seem consistent with what I have read and videos from experts that I have watched. It was mostly dismissed because the echo pressure was NOT elevated. He said it couldn’t be PH if the echo pressure was not up and the pulmonary function test was normal. This PFT was normal, but I’ve had previous ones in the past with restrictive defect and reduced diffusing capacity. He said they must have been wrong.

    My 6-minute walk test showed severe functional impairment at 39% predicted. I was not offered a right heart cath. I had a previous test that indicated a possible cause of findings could be PAH. This test was ignored at the PH specialist. He even acted like the 39% on 6-minute walk test didn’t matter – but there is a chance that it would be due to another condition (autonomic nervous disorder). However, the symptoms of PH overlap at lot with the autonomic nervous disorder too.

    During learning about PH, I discovered that my MOTHER is having signs and symptoms consistent with PH too: mildly enlarged heart on x-ray, right bundle branch block and right axis deviation on EKG, right atrial and ventricle enlargement on echo. Just based on these details, they told me that it’s quite likely that my mother has PH – what they didn’t know is that her pressure on echo is even lower than mine.

    Currently my sister is having an increase in symptoms that she thought was worsened heart failure. Her doctors are saying it’s not. She’s having symptoms very similar to mine. Her echo pressure in 2013 was 33.4. I don’t believe it’s ever been checked since. But again, CT showed PH on sister about 6 months after that echo.

    We all 3 have heart disease and multiple conditions which can be related to PH. Me: lung scarring, previous lung nodules, heart disease, diastolic dysfunction, ejection fraction 50%, thyroid condition, suspected autoimmune connective tissue disorder. Sister: heart disease, diastolic heart failure, sleep apnea, asthma. Mother: heart disease, diastolic dysfunction, enlarged heart on x-ray, right bundle branch block (EKG), right ventricle enlargement on echo, asthma.

    We live in a small rural part of Indiana. Even my PCP said that no doctors around would likely recognize PH.

    Anyone know of a GOOD PH specialist in Indiana?

    Beverly

  • Heather Arena
    Participant
    Post count: 1

    Beverly, what part of Indiana do you reside? Northern, southern, etc?

  • Beverly
    Participant
    Post count: 5

    Dear Heather,

    Sorry it took me a while to respond. My sister’s health has been declining quite quickly, and I’ve been helping her with things related to finding a doctor.

    I’m in the Southern IN area, but at this point would consider ANY part of Indiana, or even neighboring states if my insurance would cover. It mostly only covers within the state, though. I have tried a very near area in a neighboring state and that was not pleasant, as I explained.

    Otherwise, if there are locations outside the state where they may offer financial assistance that I could qualify for may be an option. The problem is my husband’s income looks decent on paper when not taking all our expenses into account, so we don’t always qualify on income-based help.

    Is there any way to private chat on this group/forum or another PHA group? Or would it be possible for us to e-mail and discuss information further? Or even talk by phone if you’d be okay with that? I’m not the most comfortable with all information being completely public. I have a difficult family member that likes to cause problems.

    Are you in Indiana? Have you had any luck with an IN doc? Thanks for replying to the post. I look forward to hearing from you again.

    Beverly

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