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    • #17474
      Colleen Steele
      Keymaster

      PH is a complicated disease. There is so much information to take in, procedure and test results to discuss, medications and dosing to remember, etc.. Despite how ever long you have been diagnosed, are there still certain aspects of the disease that you find confusing which often requires more detailed conversation and explaining from your doctor than other things do?

    • #17495
      Susan Dahl
      Participant

      I have way too many questions to list here. I have an appointment in Denver at the end of June and hope to get most of them answered there. I’m still at a stage where I’m not even sure this is what I have. The Doctor Who diagnosed me didn’t tell me anything about the disease, didn’t offer me any treatment and just sent me home to die. I’m pretty traumatized over this and that’s why I’m traveling 360 miles to get more answers. I’m sure I will have more answers after I return but will also have more questions.

      • #17508
        Brittany Foster
        Keymaster

        Hi Susan,
        I really hope that you can get the answers that you’re looking for. Is your next appointment with a PH specialist? How were you initially diagnosed with PH? Was it based off of your signs and symptoms or did they do further testing already like a right heart cath or echo? Glad you found our forums. This is a great group ! Hope we can be a source of help during this time.

      • #17515
        Jen Cueva
        Keymaster

        @susandahl46, I’m so sorry and can understand your frustration and confusion with all you’re going through. I hope you can get more information about what’s going on at your appt in Denver. @brittany-foster and @colleensteele have both offered information and asked the questions I had. I just wanted to wish you the best with your appointment and please know we are all here today if you need any support.

    • #17497
      Colleen Steele
      Keymaster

      @susandahl46 Susan, have you checked out the PHA website yet? https://phassociation.org/
      In addition to our PH News Forums you will find the PHA website to have a wealth of information.

      I don’t know if the doctor you are scheduled to see in Denver is a PH specialist but if not and you officially become diagnosed, then you want to consider seeing a specialist. Here is a link to the PHA website that can help you locate a specialist near you. https://phassociation.org/patients/doctorswhotreatph/

      You are not alone. There are people here that understand what you are going through and we are happy to help you however we can. Ask questions and vent as much as you need.

    • #17501
      DAVID PETERSON
      Participant

      I am in the same boat as Susan. After the surgery to replace my aortic valve , The nurse with the Doctor that determined that my valve was bad called and said I had pulmonary hypertension. Nothing explaining why.I am a pharmacist so I had a good idea what having PH was, but that left me with 30 questions. I wanted to have somebody tell me that having Lupus and PH was alright, but after reading I knew it wasn’t and the prognosis was bad. I wanted to be treated now! I copied a bunch of information on treatments and was going to show the Doctor what I thought he should do. At the appointment I gave him the information and he said he would look at it. About a month later my lupus through me in the hospital with multiple organ involvement most importantly pericarditis and endocarditis. It’s been in and out of the hospital since but they did put me with another doctor.

      • #17509
        Brittany Foster
        Keymaster

        David,
        I’m sorry you are going through so much too. How long ago was your aortic valve surgery? were you born with congenital heart disease or is this something that was brought on by the lupus? I know how difficult Lupus is and I can’t even imagine have that AND PH. I’m sure your brain tries to process so much during the day and it must be so hard to keep up with everything that is physically going on. I hope that you are seeing a doctor that you trust for your Lupus and that you can see a PH specialist too. PH specialists usually have a wide variety of patients and there’s such a long list of things that can cause PH or worsen it. These are the best doctors to see, especially if they work closely with your other doctors.

    • #17540
      DAVID PETERSON
      Participant

      Hi Brittany! They heard a slight murmur in my heart right after I had a 6 month ordeal with they thought was Mono. Thinking back the blood test never showed up the Wayne should in Mono. So that may have been my first flare. I was sick multiple times with what they thought was Mono, but it only lasted a few days. So it makes me wonder. I did have a bicuspid valve that haven’t ever caused anything until after I was diagnosed with Systemic Lupus Erythematosus. My rheumatologist actually listened to the murmur and told another doctor they should do an echo. They determined that the valve needed replacement. So it was both congenital and from lupus according to the surgeon. He sent it to Boston University to be studied. It wasn’t long after the surgery that the nurse for my doctor called me to tell me I have PH.

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