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  • Adele replied to the topic Brittany Update in the forum Upcoming Procedures 2 months ago

    Dear Brittany,
    Please know we are all with you. You are such a lovely person, reaching out to everyone
    We value and esteem you.

    Wishing you a complete recovery.

  • Adele posted an update 2 months ago

    I have indeed experienced significant hearing loss, however I do not know whether it is from PAH, or age, in a natural progression.
    I would love to find some answered on this based on reseRch.

    • I shared your question and comment under the topic question to make sure all of our members see it. I’m not familiar with the research but I will share if I find any.
    • Hi Britany,
      It does sound to me that we have similar medical issues. In my case, I don’t exactly know the earliest facts….as a small child, but I remember fainting, and my parents were told I had a “heart murmur “. In Those days very little was done, and “heart disease in women was not really understood, and PH not recognized. But it seems t…[Read more]

    • Yes, I’ve had image study of my legs.
      Since my disease is congenital, prior to a full Catherization diagnosing of this disease in the 1970’s, I had several (three) episodes of thrombophlebitis as a young woman and in my twenties…each time in the hospital with heparin.
      Things were very different years ago, than they are now, and we must be…[Read more]

    • Adele posted an update 3 months, 1 week ago

      At this point in time, I am staying home and have been for about a month. In doing that, we are contributing to the fight against this disease, by making sensible decisions, not infecting myself or another.
      I live alone, and this can be challenging, however I connect with others through social media and phone calls to loved ones.
      Emotionally…[Read more]

    • Yes, my Pulmonologist at that time, Dr.mRichard Channing, an excellent doctor did prescribe Predisone for inflammation. I have used it when needed it it always helped the symptoms.

      Perhaps we need more discussion on this medication. Doctor responses vary on its use, but from my experience as a patient with a PH, and DHF….congenital, I have…[Read more]

    • I appreciate all the letters in this Forum. Thank you.
      After many long years with a PAH, and with good understanding how to take care of myself, I realize now, and my body tells me that I will come to the end of this long,journey.
      I have processed this knowledge and made peace with that, however I have not,given up on myself, neither medically…[Read more]

    • Adele became a registered member 1 year, 11 months ago

      • Adele, thank you for joining the PH News Forums! I hope you will find our discussion topics useful and engaging. Let me know if you have any questions!

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