• VK

    Member
    July 20, 2018 at 8:07 pm

    Some days I fail to realize how lucky I am to not need PH meds to function in daily living. For now my lung meds are just bronchodilators and clonidine to let me actually exercise without collapisng on the floor in a heap of breathless chest pain.

    On the other hand, no need to worry that my liver is bored, because I’ve also got to take 5 other medications for other conditions ranging from premature osteoarthritis to depression. 🙂

  • Jan McCrory

    Member
    July 31, 2018 at 4:17 pm

    Is anyone on Opsumit 10 mg? I started it a few weeks ago, but now I am experiencing my feet and stomach to swell. Does anyone else have these symptoms?

    Thank you!

  • Terry D. Blissett

    Member
    August 2, 2018 at 6:40 pm

    Okay so I got the results or conclusion of my VQ Scan and Pulmonary angiogram. My lung specialist said that I DO NOT have CTEPH. And not only that, she said that I do not have pulmonary hypertension. I am both shocked and thankful. All the signs were certainly pointing towards PH.

    The specialist recommended I go see the pulmonologist and cardiologist again for treatment of my ongoing shortness of breath, fatigue, etc.

    I am also being treated for PTSD, anxiety and depression all resulting from the PE. I’ve been on lexapro since January. I’m getting off of it now. Hoping that will decrease my symptoms along with exercise.

    Will keep you posted on what the pulmonologist and cardiologist says.

    • Brittany Foster

      Member
      August 3, 2018 at 7:57 am

      Thank you for the update Terry. Always good to hear from you. I’m glad that the scans didn’t show signs of this and I think that it is good that they are planning on still monitoring you and sending you to a pulmonary and cardiologist. Wishing you nothing but the best ! 🙂

  • Michael Morale

    Member
    August 3, 2018 at 8:49 am

    Hey Terry, my father had shortness of breath for a while and his cardiologist put him on Lasix. His cardiologist told him that he had a small buildup of fluid around his heart and that was causing his shortness of breath. After taking Lasix for about three months, he changed his diet and began working out and that seemed to have corrected that problem. I’m not saying that this would be right for you, but you may want to ask your doctor. I hope this helps.

  • Kimberly van Soest

    Member
    August 30, 2018 at 12:57 pm

    @kathleen-sheffer

    Hii Kathleen, I just read your story about both taking adcirca and revatio and I was wondering how these meds worked out for you?

    I had to stop taking adcirca due to an allergic response and next week I have to start with revatio. Where there any side effects that you think are worth mentioning? And how did you feel about adcirca?
    Thank you

    -Kimberly

    • Kathleen Sheffer

      Member
      August 30, 2018 at 2:59 pm

      Hey @kimberlyvansoest! I switched to adcirca in college because taking it once a day worked better for my schedule. When my health began to decline, I switched back to revatio and felt better. Better meaning I could walk further without stopping. Unfortunately the medication comes with some serious side-effects. It’s difficult to pinpoint which symptoms were from revatio because I was on IV therapy as well as several other medications. I think I had some dizziness from it, but the most bothersome side effect was diarrhea. I was on a VERY high dose (100mg three time a day at the end) and had diarrhea every day. So much of my time was spent in a bathroom or in bed with stomach pain. Hopefully a lower dose will help you and you won’t have the same side effects I did. Revatio significantly reduced my pulmonary pressures and allowed me to postpone transplant a couple times – I call it my “miracle med.” Let me know how it goes. I hope you don’t have an allergic response to it – that sounds awful!

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