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    • #11273
      Kathleen Sheffer
      Participant

      I’ve noticed a couple respiratory therapists (@olivia-palmer and @alexjoy) have joined our forums and I wanted to create a specific topic for discussion about how medical professionals and patients can work together. I am often a cranky patient and I am still working on how to manage my emotions and ask the right questions of my care team. Sometimes it feels like we are working in opposition, when really my health is a team effort. As medical professionals, how do you approach your patients so you can meet them where they are and work with them in an empathetic way? As patients, how do you treat your providers with respect while advocating for yourself?

    • #12002
      Cris Dingman
      Participant

      I may be in the wrong place, but I have a question about which medical professional does what… When I had the right heart cath, that cardiologist prescribed Letairis, and a couple other meds. The Pulmonologist I saw diagnosed me with ILD, COPD. Also, I have a rheumatologist working with the RA issue. From what I have been reading from others on here, the Pulmonologist is usually the point person for PH. Is my situation backwards from everyone else, and if so, why?

      • #12003
        Kathleen Sheffer
        Participant

        Great question, Cris! I’d say the point person for PH would be a PH specialist. I had a cardiologist and pulmonologist who both specialized in PH. They worked as a team for the most part, but because my pulmonologist had been treating patients longer, he was generally the lead in my care. I’d talk to each of your doctors about their perception of who takes the lead in your care (I did this with mine), and make sure at least one person knows they are your go-to doc.

    • #12018
      Brittany Foster
      Keymaster

      Good point Kathleen, and good question! I agree that it is strictly individualized with the amount of specialists that one has for their care. I am lucky enough to have a great primary care doctor who is the coordinator between all of the different specialists that I have. I see a PH team for the pulmonary hypertension, a sleep doctor for my central hypoventilation syndrome and central sleep apnea, electrophysiology for heart rhythm and pacemaker, cardiologist, vascular specialist, general pulmonary, GI , neuro. All of these conditions I have impact each other so it is always beneficial to make sure you get copies of visit summaries and have the doctors communicate this information to a general provider or the one that is in charge of coordinating care. I feel like they need a separate job title just to coordinate and update records and medical info to everyone ! Sometimes you really just need to print out the records and ask for a copy for yourself because usually you need to stay on top of doctors to communicate especially the specialists who are so busy!

      • #12037
        Judie
        Participant

        I always get copies of everything. Until now my most serious disease has been my mast cell disease. If it’s a no go for my mast cells it isn’t going to happen. It’s trial and error with medications. Once I get to the 5th day I am usually comfortable it’s a keeper. I am on so many mast cell stabilizers it’s insane. Gut, brain fog, respiratory and skin, they are the barriers that must past the tests. Anyway if you always have your copy you are safe and can offer it to others who need it.
        Judie

        • #12048
          Brittany Foster
          Keymaster

          Judie,
          thank you for that advice ! I always love to have copies of doctor files or important records with me. It helps ease the anxiety I feel when some doctors that don’t know my situation leave me feeling invalidated. It is good to have medical documentation as back up and a care plan just in case of emergency !

    • #12024
      Cris Dingman
      Participant

      Thanks Kathleen and Brittany, neither my cardiologist or Pulmonologist is on the certified PH list, and the nearest certified PH center is a couple hundred miles away. However, so far so good with my treatment. The cardiologist is apparently a bright light among heart doctors and has a very good reputation. The pulmonologist treating me is the same, so God willing, whatever they know and do seem to be working!!! but I am going to ask them both if they are specialists in PH. And I do make sure that all information is funneled to my primary go, just as a ” holder of all knowledge” about my issues. Thanks again, both of you.

      • #12025
        Kathleen Sheffer
        Participant

        To be honest, I think the PHA accreditation has more to do with those centers donating to PHA…so I wouldn’t be super worried about them not being on the list. But you should ask each of your doctors if they see other PH patients, how many, etc.

        • #12031
          Brittany Foster
          Keymaster

          I agree. There are some doctors that aren’t accredited but that do treat for PHA. One of my general pulmonologist (I do see a PH team too) but my general pulmonary doctor works well with them and gives me medications to help treat conditions that add to my symptoms. Even though he’s not PHA accredited, he still works well with the team. That’s so important!

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