Pulmonary Hypertension News Forums Forums Support Groups PH and Co-Existing Conditions Are You In Left or Right Side Heart Failure?

  • Are You In Left or Right Side Heart Failure?

    Posted by Colleen on March 25, 2022 at 4:28 pm

    I’ve heard a number of new PH patients still in the process of coming to terms with their diagnosis then shocked again to find out their in heart failure. PH really isn’t just a lung disease because it can eventually have a great effect on the heart.

    If you have PH due to left heart failure or have developed right heart failure triggered by PH, let us know how you are doing. What has helped you? Let’s offer information, understanding and hope to current or future members who just found out they have PH and are in heart failure.

    I discussed this in my column this week.

    Here is the link: There is Still Hope for a Failing Heart

     

    jen-cueva replied 1 year, 10 months ago 5 Members · 11 Replies
  • 11 Replies
  • jill-upshaw

    Member
    March 30, 2022 at 6:38 pm

    Well, mine was so bad when I was diagnosed, that my doctors verified everything quickly and said it was so severe that I was already in right-sided heart failure. Then we moved on from there to say I had problems with 3 valves and then smiled and said that my aorta was fine……and the list went on and on……

    BUT, the Adempas and 5 liters of oxygen have definitely improved my pressure and my heart function. I am very happy to hold my own.

    • Colleen

      Member
      March 31, 2022 at 7:22 am

      @upshtcx my son’s heart was in bad condition too by the time he was diagnosed. He was fortunate to respond well to Flolan and oral PH treatments. Hearing that you also have improved with treatment and oxygen might offer others hope. May you continue to hold your own for a very long time!

    • jen-cueva

      Member
      March 31, 2022 at 12:57 pm

      Hi @upshtcx, I’m happy to hear that you too, have noticed an improvement in your heart function with the Adempas and oxygen. When we share success stories like yours, this shows others that they too can hang on for hope. I hope and pray that this continues to help you, my PHriend. Thanks for sharing your experiences.

  • jen-cueva

    Member
    March 31, 2022 at 12:54 pm

    Such an informative and inspiring column, @colleensteele. My heart broke as I read about my buddy, young Cullen. I still can’t imagine how you and your family struggled as he was so young at eight years old. I’m grateful that he had the transplant, and I am learning more about him through your educational and vulnerable pieces.

    I was already in right heart failure at the time of my diagnosis. Thankfully this has improved with PH treatments and multiple diuretics through the years. I continue to have to try and balance a fluid restriction along with chronic kidney disease(CKD) as we work to keep my heart function from worsening again.

    Thanks for your lovely column and such insights.

    • Colleen

      Member
      April 4, 2022 at 2:19 pm

      Thank you @jenc. Cullen was also in RHF when diagnosed but treatments helped so much I really didn’t think about it until it started progressing.

      • jen-cueva

        Member
        April 5, 2022 at 11:12 am

        Yes, I think we tend to put some of our diagnoses on the “back burner” perse if they are well managed when others take precedence.  It sounds like this is what you described when you mentioned Cullen’s RHF was helped with treatments for some time before it progressed. Because of this, do you feel it was a surprise when it progressed?

  • Carol alexander

    Member
    April 2, 2022 at 3:24 pm

    Iam in right side heart failure

    • jen-cueva

      Member
      April 4, 2022 at 2:11 pm

      Hi @carol-alexander, how are you doing? It’s great to see you pop into the forums. I smiled when I saw your name. Are you taking multiple diuretics to help your RHF or other medications?

    • Colleen

      Member
      April 4, 2022 at 2:26 pm

      @carol-alexander you have been on my mind. How are you doing? We are here for emotional support anytime you need it.

  • dawnt

    Member
    April 3, 2022 at 4:53 pm

    I’m in right side heart failure, although a recent echo showed a good improvement in heart function.  Considering it took between 3-4 years to get a diagnosis of ph after symptoms started, and they also found limited scleroderma, I’m not sure exactly what caused the heart failure. I’m classified as morbidly obese as well, so it could be any of the medical issues or a combination of them.  I think what has contributed to the improvement is my ph medications, ambrisentan & tadalafil, and my use of oxygen.  When I first was diagnosed with ph, my ph dr said it usually takes 3-4 months or so to see a difference with the medication. It took me closer to 10/11 months to feel a positive change in how I was feeling.  I’m also on diuretics, have been for long before the ph/scleroderma diagnosis, and show kidney failure on tests.

    • jen-cueva

      Member
      April 4, 2022 at 2:15 pm

      Hi @dawnt, I was in RHF when diagnosed but with my PH treatments, oxygen, and diuretics, I’m managing. I also have kidney disease, but mine has been linked to my diuretics for ten-plus years. I can only imagine how difficult scleroderma makes this all. @cdvol3gmail-com has had challenges with her scleroderma, which seems to be her most challenging thing to manage with PH.

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