• Posted by Colleen on July 9, 2019 at 2:02 pm

    I believe it is rare that a doctor recommends an open lung biopsy in PH patients but I have heard of it being done, especially in young children. My son has only had one post transplant because it is a way to check for rejection in the transplanted organ. What I have read is that a lung biopsy is sometimes done on PH patients to check for a possible secondary cause of the disease.

    Have you ever had a lung biopsy and if so, was this done when you were an adult or as a child? What were the reasons given for proceeding with this surgery? What information was gained from doing the lung biopsy?

    jen-cueva replied 1 hour, 11 minutes ago 6 Members · 14 Replies
  • 14 Replies
  • jen-cueva

    Member
    May 3, 2024 at 11:46 am

    Hi @Debbie Moore, here’s one topic about lung biopsy. I did see a few others and will tag you on those topics, too.

    How about our newer members? Have you or your loved ones had a lung biopsy? If so, please share your experiences with those like Debbie. She’s planning to have hers to hopefully find the reason behind her need for high oxygen levels.

  • Joanne Sperando

    Member
    May 8, 2024 at 2:25 pm

    I know of no PH patient that received a lung biopsy and I do remember hearing, many years ago, that a test like that could be very dangerous. That’s purely anecdotal, however.

    • Debbie Moore

      Member
      June 20, 2024 at 11:09 am

      I was told it was high risk. Makes it very difficult to decide if I should do it or not.

  • Terry

    Member
    May 26, 2024 at 1:50 am

    Do you ever get the feeling your being used as a test case for the learners. I did in the end when they were trying to find out why I could not breathe so to speak at a large teaching hospital with lots of overseas doctors doing research. One of the many scans showed a lump in one of the lower lungs and a biopsy and lung flush performed . Nothing there to worry about. I ended up overnight in hospital having a blood and iron transfusions. Crikey ! what did they do ha. For another condition I had prior to my breathing issue agreed to. Lovely Swiss Doctor who was there conducting research on my GCA. It was good they took blood every four hours for a day and I got free parking .breakfast, lunch and dinner. Never got results as she went back to Basle.

    • Colleen Steele

      Member
      May 28, 2024 at 1:22 pm

      @Terry did this happy before you were diagnosed with PH or after? Teaching hospitals are a necessary evil I suppose but it can be unnerving when they are using patients as “homework”. My son has been cared for at a teaching hospital and the protocol was the pre-med “student” would come in and look over Cullen, ask questions, make their diagnosis and plan, but a seasoned doctor always came in after to evaluate and give approval on decisions made. Did they do this for you?

  • Terry

    Member
    May 29, 2024 at 5:24 am

    Before Colleen. They were trying to discover why I said could not breathe. What had them tricked was that my lung capacity was above normal for my age but point me at a flight of stairs or slight incline and I was stuffed . Mind you despite me telling them my breathing issue was such they never tested me under stress . Oh well I know my cardiologist who had performed lung transplants there subsequently enlightened them .

    • jen-cueva

      Member
      May 29, 2024 at 2:05 pm

      Wow, @Terry, yeah, it sounds like you were the “guinea pig,” as some say. But as @Colleen mentioned, teaching hospitals are a bit like steroids, a necessary evil. Some of my best doctors have also been and still are at large teaching hospitals.

      Mate, you mention tricking the doctors. I thought you tricked everyone. You’re quite the jokester. 🤣

    • Debbie Moore

      Member
      June 20, 2024 at 11:04 am

      Did they ever find out about why you can’t breath? Or did they just say it was PH?

  • Terry

    Member
    July 3, 2024 at 3:52 am

    Sorry for late reply . My breathing issue was due to PAH which was identified by my cardiologist at a later date .

    • Debbie Moore

      Member
      July 4, 2024 at 1:27 pm

      The doctors are stumped. Whatever is causing my breathing problem, it is probably the reason I have PH. The biopsy is the last test to find out. I meet with the thoracic surgeon on the 25th. From there we set up the surgery. I’m not as nervous as I was before. I’ll let y’all know how it turns out!

      • Colleen Steele

        Member
        July 5, 2024 at 6:04 pm

        @Debbie Moore I’m confused by them saying whatever is causing your breathing problems is likely what has caused your PH. Are they certain your breathing challenges isn’t the PH itself? I will keep your surgery in my prayers. Please keep us updated when you feel up to doing so.

      • Debbie Moore

        Member
        July 12, 2024 at 12:28 pm

        @Colleen-Steele They know I have PH. No one knows what has caused me to have it, so idiopathic PH. My breathing problem was not caused from PH. They are just guessing that whatever is causing my breathing problem is the reason I have PH. We believe that breathing issues came before the PH. All I know is my breathing is getting worse. PH isn’t my main concern anymore. I’m at 8 liters now and it gets worse every year. I was able to use my Inogen to go out and about, and now that is becoming difficult. I can’t imagine being homebound. However there is no guarantee whatever they find will be treatable. I need to know I’ve turned over every stone. I appreciate the prayers, specifically that answers come from this biopsy.

      • Colleen Steele

        Member
        July 13, 2024 at 1:08 am

        @Debbie Moore I am so very sorry you are going through this! Being seriously ill is awful but I’m sure not knowing why makes it that much more horrible. I am praying for you!

      • jen-cueva

        Member
        July 16, 2024 at 2:41 pm

        Oh no, @Debbie Moore. Yes, it sounds like your breathing issues have worsened, and I’m so sorry you are going through this. Still, with no clear answers, it is so frustrating. Eight liters would be challenging to leave the house for long periods. Are you taking larger O2 tanks with you as you leave the house for appointments, etc.?

        I hope and pray the thoracic surgeon later this month will have some ideas, at least of the cause of your breathing issues and PH. My thoughts and prayers continue to be with you. Thanks for sharing the updates, and please update us after the 25th.

        🤗🙏

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