• Posted by Colleen on December 1, 2020 at 5:51 pm

    @ripple76 asks a good question…

    What are the statistics of men who have PAH? How about the percentage of men with CTEPH that are contributors to pulmonary hypertension news? Where I live I only know of one woman with this disease but she has a different type of PAH than mine and is not on supplemental oxygen.

    My mental stability is helped by friends who take me out to eat, even in this time of Covid 19. I wonder if I am alone in being the only former fighter pilot who lives with this disease.

    Please comment if you are a man with PAH or CTEPH. Randolph would like to hear from you and if you are a former fighter pilot, even better!

    Colleen replied 3 years, 4 months ago 3 Members · 4 Replies
  • 4 Replies
  • Colleen

    Member
    December 1, 2020 at 5:54 pm

    @ripple76 I wish I had statistics to share but I don’t. I do know that PAH tends to strike females more than males and I’m not sure why. Does anyone have information on that?

    My son had PAH and ALL of his close PH friends were female. He is 21 now and post-transplant. If you ever have any specific questions you would like me to ask him I would be happy to.

  • Jimi Mcintosh

    Member
    December 3, 2020 at 6:29 pm

    Here are increasing numbers of men, children and babies that have been diagnosed with PH. Some have Lupus or other immune diseases. I often wondered if my exposure to numerous chemicals caused my daughters Lupus and my PH.

  • Peter G Pierce

    Member
    December 8, 2020 at 5:37 pm

    I was finally diagnosed with idiopathic PAH WHO type I in October 2016 after 18 months and three trips to National Jewish (who though I had left heart disease). The people at Integris in Oklahoma City gave me a rt heart cath with exercise to confirm PAH. Mine was late onset, age 65. Originally diagnosed as altitude sickness by ER in Pagosa Springs in March 2015. I was suspect about that since I’d been to Macchu Piccu and Tibet without any altitude effect. I was smoking cigars then, however.

    I’m receiving outstanding care and treatment in Oklahoma City at the Integris PH clinic. I graduated from Orenitram to sub c remodulin in July of this year. Getting along well. Outlived my first 5-year disabled car placard. Getting stir crazy. I’ve been isolated in my gilded cage since returning from Mardi Gras last March. I’m ready for my shots and a road trip this Spring.

    • Colleen

      Member
      December 8, 2020 at 7:18 pm

      @pete I’m sorry that you were eventually diagnosed with PAH but glad you and your medical team kept searching for a confirmed answer to you health issues. I know all too well how frustrating the journey from symptoms to diagnosis can be.

      It sounds like you are in good hands and congratulations on outliving the placard! Hopefully we will get past this pandemic and you can use your new placard during a future road trip!

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