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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

    • Elaine
      Participant
      Post count: 1

      Hi Robin, 11797
      I also have Eisenmenger’s Syndrome. I lived in Arizona for four years back in the 80’s. You are right to be worried about Valley Fever. I got Valley Fever and I was flat on my back with a fever of 102 for 6 weeks and I also have scar tissue on my lungs from it. It is so HOT in Arizona. With the PH, I can not tolerate heat. I live in Seattle now and I love the cool air on my head. I even have an AC for the few days it actually gets hot here. I would suggest that you visit Arizona in the summer to see if you could tolerate the heat but the spore that causes Valley Fever is dormant in the winter and blows around in the summer. There is a Valley Fever Clinic out of the U of Arizona in Tucson and they have information online. But you should ask your ph doctor about your risk with the Eisenmenger’s. Hope this helps.
      Elaine

    • Perry
      Participant
      Post count: 2

      I live in Arizona. I grew up in Tucson and I have the calcified scarring in my lungs as does most everybody that grew up here. I was diagnosed with Yearly this year but don’t know how long it been there because I started getting heart stents in 2014 so with all the overlapping symptoms, not sure where im at with that. as far as the heat goes i live in Sierra Vista about an hour South East of Tucson and it averages about ten to fifteen degrees cooler. I have never really thought about the heat in relation to my PH. I guess I assumed that it was better for the condition. Just what you’re used to I suppose. Tucson is about 2000 thousand feet above sea level I believe, maybe a little less. Also, UofA has a really friendly PH department, My Nurse Navigator is Lorry Velasco,520-694-2369, she can also be reached at:
      Lourdes.Velasco@bannerhealth.com Good luck.

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