• Jen Cueva, thank you very much, and thank you everyone for your help with this topic. I think it is helpful to have this thread here and I know I am finding it very helpful.

    I just had my first heart cath this week and suddenly I neither have PH nor an enlarged right ventricle. I am grateful those miraculously disappeared, and I still have…[Read more]

  • I have recently filed for disability due to my PH diagnosis, combined with bronchiectasis, and am wondering if anyone else has any experience with this – as in, was it approved the first time through or did you need an attorney?

    This would be so helpful for me.

  • Brittany, congratulations on your improvements!!!

    I am so impressed you get yourself to walk 10,000 steps. I have my fitbit set at 7,000 steps and do not even come close. I do not feel like I have enough energy to do much walking, even though I really want to do so. Maybe it is my malnourishment? I am praying they can have some good…[Read more]

    • I am hoping for the same for you! I really hope that this cath can give you the information that you need and they can lead to better treatment options and get you feeling better and more like yourself. That is great that you are able to do some walking though! A little bit is still better than nothing. I started this walking doing a really…

      [Read more]

  • Sheriden posted a new activity comment 2 months, 1 week ago

    Brittany, is this a private response from you? Is it possible for us to reply privately to posts in the forums?

    I am so glad you also know about KateFarms!

    • Kevin, were you diagnosed with PAH or PH?
      I am wondering if the drugs you mentioned were prescribed for PH vs. PAH.
      I want to start a list of drugs prescribed for PH (I was not diagnosed with PAH), so I can research them and be prepared after they do the heart cath.
      Blessings on your healing journey…
      Thank you!

    • Brittany, thank you! I am now informed on c-diff! Good to be aware!

    • Hey, Brittany. My pulmonologist has only referred me to an allergist. I have reported the coughing and flap flipping open and the couple of times it actually made me regurgitate to both my pulmonologist and her PA. Neither of them has mentioned an ENT or GI doc. They only keep asking if I experience heartburn, which I do not. You are giving…[Read more]

      • I would definitely ask the doctor to refer you to a GI doctor . Maybe they could do testing such as a barium swallow or an esophogram to check and see what could be happening to the function of your esophogus or the valves that are located through your GI tract. It would be worth digging into for sure!
      • Tricia, I am so sorry about your health challenges. Clearly there is a lot more going on in your body for the doctors to consider. Perhaps they consider the PH secondary to everything else and consider the echo to be sufficient given everything else. My prayers to you and your healing journey…..

      • Thank you, Brittany. Many blessings to you on your healing journey…

        I would very much like to know what they did in your open heart surgery, if you are willing to share.
        Could be privately, if you do not want it in this forum.

        Interestingly, my pulmonologist did not even refer me to a nutritionist. My primary did after I had already seen my…[Read more]

        • HI Sheriden.

          For me my surgery this past May was to repair a condition that I was born with that ended up just getting diagnosed later in life. I had something called a right aortic arch with a vascular ring. Basically the top part of my heart (the aorta) is candy cane shaped and was compressing and circling (the ring) around my esophogus…

          [Read more]

      • I forgot to mention, two days after a bad pain incident in November, I took myself to the Er for some fluids (after going to the PCP office where I was informed they will not administer fluids, then going to urgent care where I was also informed they will not administer fluids).

        They had no problem giving me some fluids.

        I checked in with a low…[Read more]

        • sometimes the extra fluid actually ends up making me feel worse and they have to run it through at a really slow rate. It is like my heart can’t pump out the extra fluid in the body and it all ends up just collecting there. Usually after I am given fluids, in the morning my hands are swollen and painful and so are my legs. But fluids can be…

          [Read more]

      • My symptoms of dehydration are picking up skin on the back of the hand and if it does not immediately spring back, that is dehydration for me. Also, my veins pop out, as someone else mentioned.

        I always have a dry throat this winter, so it will be interesting to see if that changes in the summer.

        To help with dehydration and malnutrition, I…[Read more]

        • @sheridend I am also on Kate Farms for their vegan blends and absolutely love that brand. It is the only one that hasn’t given me the shakes that bad after I use it and it has given me at least some energy to help sustain my activity levels. I have been increasing my intake in my tube feeds and my exercise tolerance actually increased from…

          [Read more]

          • Brittany, is this a private response from you? Is it possible for us to reply privately to posts in the forums?

            I am so glad you also know about KateFarms!

        • This is so helpful for me! I have had the most strange cough, in addition to my productive lung phlegm coughs.

          For two+ months, as soon as I sat up in bed I started coughing for anywhere from 15 minutes to an hour. My nose would start running after about the first 5 minutes. This had gotten better in the mornings, but I still have these…[Read more]

        • I am tired seemingly all the time since my “severe PH” diagnosis, and to a lesser extent for years earlier. My heart rate is in the fat burn zone for up to 23 hrs a day and I have very little appetite and my taste for food has greatly diminished. I have not had enough energy to cook and have been limited with my food choices due to food…[Read more]

        • Brittany, what is c-diff?

        • For the people for whom this worked, did you juice pineapple or buy juice from the store?
          If juice was purchased, was it refrigerated or from a shelf.

          I would like to try this (I have many, many cough episodes a day that are not cold or flu related) and want to get the version of juice others found to be beneficial.

          Thank you!

          • Sheridan,

            From my experience the actual pineapple and fresh pineapple juice was the best for me. Even eating pineapple seemed to be good but it had to be blended down in a blender. I have the ninja so it is able to process it all pretty small.

          • Sheriden posted a new activity comment 2 months, 1 week ago

            Hi, Colleen! Thank you so much for your welcome.

            Yes, my diagnosis is recent – early December 2019. I was diagnosed with bronchiectasis 5 yrs ago and something happened Oct/Nov 2019 and I was suddenly much, much worse and experiencing shortness of breath for the first time. I was an athlete many moons ago, so I think I pushed through…

            [Read more]

            • I can’t believe I made that mistake with your name when it drives me crazy when people spell my son’s name wrong even when it’s right in front of them. His name is Aidan and people always want to spell it Aiden.

              The heart cath is not only the next step but an important one. It is the best way to officially diagnosis PH and determine it’s…

              [Read more]

          • Sheriden posted a new activity comment 2 months, 1 week ago

            Hi, Brittany! Thank you so much for asking.

            Yes, my diagnosis is recent – early December 2019. I was diagnosed with bronchiectasis 5 yrs ago and something happened Oct/Nov 2019 and I was suddenly much, much worse and experiencing shortness of breath for the first time. I was an athlete many moons ago, so I think I pushed through early…

            [Read more]

          • Tricia stagner, I was recently diagnosed with Ph via echo and my pulmonologist explained to me last week that I now need to have a heart cath to find out if it is real (she explained echos can have false diagnoses), to measure the actual blood pressures in the area, and to look at the area for possible causes and/or visual clues as to whether the…[Read more]

          • Sheriden became a registered member 2 months, 1 week ago

            • Hi Sheridan,

              From what I am reading on your profile it seems like you are new to a diagnosis. What were your symptoms that led you to a PH diagnosis? How long do you think you were experiencing symptoms for? Thank you for joining our forums. Colleen Steele and I are the forum moderators so please reach out to us with any questions at all!

                • Hi, Brittany! Thank you so much for asking.

                  Yes, my diagnosis is recent – early December 2019. I was diagnosed with bronchiectasis 5 yrs ago and something happened Oct/Nov 2019 and I was suddenly much, much worse and experiencing shortness of breath for the first time. I was an athlete many moons ago, so I think I pushed through early…

                  [Read more]

              • Welcome Sheridan, to the PH Forums! I read that you are fairly new to PH. You must have lot’s of questions and concerns. I’m certain that you will receive lot’s of support and information here plus help others based on your own experience. Let me or our other Forum’s Moderator, Brittany Foster, know if you have any questions using the…

                [Read more]

                • Hi, Colleen! Thank you so much for your welcome.

                  Yes, my diagnosis is recent – early December 2019. I was diagnosed with bronchiectasis 5 yrs ago and something happened Oct/Nov 2019 and I was suddenly much, much worse and experiencing shortness of breath for the first time. I was an athlete many moons ago, so I think I pushed through…

                  [Read more]

                  • I can’t believe I made that mistake with your name when it drives me crazy when people spell my son’s name wrong even when it’s right in front of them. His name is Aidan and people always want to spell it Aiden.

                    The heart cath is not only the next step but an important one. It is the best way to officially diagnosis PH and determine it’s…

                    [Read more]

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