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  • Beverly
    Participant
    Post count: 5

    A COUPLE OTHER QUESTIONS:

    – Does anyone know if Donna Sparks from Indiana is still on this group? I read a PHA article about her story. Since I know that she is from Indiana I would love to connect with her in case she has a doctor recommendation within the state.

    I’m not very good at using this forum yet. I don’t know if there’s a way to search for members or such.

    – How risky is elective surgery or even sedation/anesthesia (i.e. left heart cath) for things unrelated to PH if a person would have undiagnosed/untreated PH?

    I FORGOT TO MENTION THESE FAMILY ISSUES:

    OXYGEN: My sister and I have also had issues with our oxygen being in the low to mid 90s off and on; and sometimes as low as 86-89 for me. Doesn’t necessarily stay there long but is dropping down to those numbers. For me, can be with activity or sometimes even at rest.

    OXYGEN DROP IN EXERCISE: My sister had a cardiopulmonary exercise test (CPET) this week to evaluate for any worsening of her heart failure. At rest her oxygen was 92; 93 and 94 as she started the bicycle part, and appears that it dropped to 76 at peak exercise. I don’t recall her oxygen dropping in previous CPETs but it’s been a few years since the others.

    I don’t know if it’s common for a person with heart failure to have oxygen to drop that much with exercise or not. I have read that this is common with PH. And I just read that it is common when a person has a congenital heart defect.

    CHD: My sister also has a SUSPECTED congenital heart defect via a bubble echo. In 2013 or so, my sister was also found to have a patent foramen ovale (which of course, would have been there since birth) and an interatrial septal aneurysm. This was found in her 50s and no repairs done.

    So, there’s a LOT going on, and I just wonder if PH is not the culprit.

    Thanks so much for any replies, comments, personal stories, advice. It means the world to me.

    Beverly

  • Jill
    Participant
    Post count: 1

    I have PAH, patent foramen and interatrial septal aneurysm as well. I de-sat as soon as I start moving around. I have been on full time oxygen for the past 4 yrs. Heat failure can be due to PH.

  • Robin
    Participant
    Post count: 1

    Hi all,I am new to the support group ,but not to PH. I am 54 years old ,I have Eisenmenger syndrome. I have been living a long time with PH.my question is. My husband and I are planning our retirement move.Right now ,we live in Indiana. Just 30 miles SE of Chicago. We want to retire to Arizona.BUT I am scared of a few things ,I hope someone out there can help with our decision. Does anyone here live in Arizona. Or know someone living in Arizona,with PH. I am worried about the extreme heat,and its effects on me,and of the fungal infection from the soil. Called valley fever. I am on Amiodorone,Revitio, Tracleer,Uptravi,lasix,and digoxin. Thank you for any help. It will be greatly appreciated.Robin Layman

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