This topic contains 7 replies, has 5 voices, and was last updated by  Brittany Foster 3 months, 3 weeks ago.

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  • #15872
     Libby 
    Participant

    I’ve been married four years and my husband has know about my CHD all along but my PH diagnosis and realizing we can’t have kids only just came about recently in the last two years. He’s already been through so much with me so he says he’s unphased and this point but I don’t buy it. I’ve even asked him flat out if he worries about me dying young and he just says “I prefer not to think about that…” How about you and your spouse?

  • #15877
     Brittany Foster 
    Keymaster

    Hi Libby,
    It sounds like you both are dealing with all of this TOGETHER and that is always so helpful in any relationship to know that you are supported and loved no matter what. My boyfriend doesn’t as a lot of questions but he does his own research on his own time. It can be hard even for the patient to sit in an office and ask questions on the spot. I would say to keep doing what you’re doing and let him know your fears. I made the mistake of keeeping a lot in at the beginning of our relationship because I was afraid that I would lose him. But the more honest I became, the better it was for both of us and allowed both of us to share our fears and worries so it didn’t come out in a negative way down the line or get displaced as anger. I am very guilty of doing this.

  • #15896
     Judie 
    Participant

    Hi Libby,
    My spouse is supportive but doesn’t want to worry about what’s ahead as we will deal with it as needed. I am diagnosed with mild PAH and have more or less the same outlook. I am 62 now at age 24 I was diagnosed with lymphoma which I have been cured of for 36 years. I learned to not get ahead of myself emotionally and deal with facts as those are the only important things. I know that is easier said then done.
    I am an RN so medically I am not quite sure of what your physician is stating. The Pulmonary Artery which becomes narrowed leads to the lungs and and can cause lung and righ5 heart issues in general.
    Do you have the type where blood clots occur?
    I agree with Brittany’s comment on asking for the test she mentioned as it shows the air exchange within the lung.
    The burning feeling you get I also got initially it was what I thought was GERD which I do have which is basically acid coming into the esophagus causing the burn. In fact I still get it now during exercise when my pulse ox states my o2 saturation is 95 which is good for me with exercise. Until you determine the cause of the burning for you I would listen to your body and not push things as it could be doing harm. I walk on the treadmill, I live in Florida so I can’t exercise in the summer heat and humidity. I always have my treadmill which was an excellent investment as I can control my indoor environment. I also weight train and do Les Mills Body Pump which is a program using a bar bell and I have found to be the most effective controlled exercise for me. I believe they have live classes still on beachbody.com. I have exercised regularly since about age 16 and I always feel better for doing it.
    If you search on U Tube there is a young woman who talks about her journey with PAH. I found her inspirational.
    I am told it is best for me to continue daily exercise I try to log 5 miles daily. My PAH was found during a yearly echocardiogram I get due to a genetic disorder. I have an upcoming appointment for my first follow up echo I am anxious to see what it says. I do not have heart disease although I have had mild leakage in my valves which are unchanged in 10 years.
    Judie

    • #15911
       Brittany Foster 
      Keymaster

      Hi Judie,
      You have been through so much with lymphoma and now PH. Do the doctors think that the PH is related to any of the cancer therapies or are they not able to say exactly what it is being caused by? GERD is absolutely horrible to deal with and I actually have esophageal dysmotility from it and now have PEG tube placed because of malnourishment and vomiting with eating. I am seeing a surgeon next week to discuss surgical options because I was born with an aortic arch anomoly where it is pressing on my esophagus and causing a lot of these issues. I understand the burning feeling all too well and my hope is that I can get back to exercise and get my fitness routine back. Working out gave me so much confidence and really helped my mindset in managing all of this. It gave me that feeling of control that feels missing with chronic illness. 🙂 Thank you for sharing your story with us!

  • #15900
     Carolyn 
    Participant

    What is considered mild PAH? What was the pulmonary artery pressure on your echo? Do you take medication or any treatment for mild PAH? I had the burning in my chest and always thought it was related to GERDS or my sluggish GB, but listening to the people on the forum maybe it’s not!

    Carolyn

    • #15912
       Brittany Foster 
      Keymaster

      Hi Carolyn,
      personally, my PH is considered “mild” because the pressure went to 30 on a heart cath during a minute of exercise. However, the test was stopped due to pain and my oxygen levels dropping to the low 80s. My condition that is causing the “mild” PH isn’t a mild condition. It is part of a genetic condition I have that effected my breathing. I guess the “mild” diagnosis for many and their treatment would depend on their underlying condition and what is causing the pressures to increase. I am treated with oxygen therapy as needed (usually with exertion) and BIPAP therapy at night and during the day as needed to help regulate the breathing and stop my body from having dramatic pauses in respiration. So the doctors aren’t exactly treating the PH for me, they are treating the breathing disorder that is causing the decrease in oxygen levels.

  • #15943
     Julia Tom 
    Participant

    aww! such a loving husband! <3

    • #15954
       Brittany Foster 
      Keymaster

      Thanks for the love, Julia ! Are you married/ in a relationship ? It’s so important to have the support and comfort through all of this.

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