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    • #25271
      Colleen Steele

      Have you ever started a new treatment or underwent a procedure that had a rough beginning but as time passed, it ended up really helping you? What were the challenges that you faced? How long did it take for you to feel a significant improvement in your health? Did you come close to giving-up before you reached that point?

      I can think of several cases when my son struggled with titrations or had a procedure that didn’t seem to help as quickly as he expected, but after several weeks, sometimes even a month later, he began to feel an improvement. You don’t want to go long periods of time in agony but if you feel strong enough to push through the rough patch, it can sometimes be worth it. It’s important to tell your doctor every symptom and struggle so they can help determine how much longer you should proceed with a treatment.

      Share your experiences with us.

    • #25293
      Jimi Mcintosh

      It seems that each change in our treatment regimen is hard, I guess because after so many failures and disappointments, you no longer set high expectations. Everybody is praying and wishing for a miracle, but willing to accept a day whereas this disease is not the dominant fracture. I volunteer for research programs, hoping for my own cure, if not then for someone else walking on the same path.

      Your son will be just fine, he just needs to learn how to trust again. He is young, his provider and protector is great. All of the meds have side effects and some take longer to work, some have small effects. Give them time , believe that they will work, but if the side effects are to great, notify them doctor and the manufacturer and FDA. I took stomach injections and they came out with a pill.

    • #25306
      Colleen Steele

      Thank you @jimi. He no longer has PH since transplant but in many ways it was basically exchanging one disease for another. Transplant takes a lot of self-care and even more medications than when he had PH. He has the patience with it all now but he’s also older. It was much harder on him when he was a child and dealing with severe side-effects.

      Agh, stomach injections? He never had to do that but has a friend who did due to a blood clot. That sounds hard but I’m guessing like everything else…you got use to it? My son volunteers for research as well. I think it’s important for each generation to make an effort to try and help the next.

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