Opinion needed! Confused 2017-11-01T16:57:19+00:00

Home Forums General Discussion (Public Forum) Opinion needed! Confused

  • Author
    Posts
  • Lisa
    Participant
    Post count: 10
    #7248 |

    I was just recently diagnosed (last month) with PAH due to poor left atrial compliance at least that’s what my dr says. I have a stiff left atrium. but I have PAH or at least that’s what the cath report, echo and CT scans show. My question is this–currently my cardiologist will NOT give me a referral to a PH specialist which is required to see a PH specialist in my area. (my ins. does not require it but the PH specialists do) Dr says I don’t need a referral because the PAH is due to the heart condition and if we work to control that, the PAH will go away. This is where i’m confused because what I’m reading about PAH is yes it can be related but there’s still a problem in the lungs because of the pressures and cell lining formations? ?? and I’m also reading that the PAH will never go away?? so I’m getting conflicting information. How do I get a referral when my dr won’t give me one?? I know I have a right to a second opinion but if you can’t get the referral to get it how can you?? I trust my cardiologist I’m not saying I don’t and so far the new med they gave me (metoprolol seems to be helping the breathing at least slightly –it’s lowering my heart rate) but am I wrong in wanting to make sure that there’s nothing else??

  • Patricia
    Participant
    Post count: 23

    This just burns me up!!!! The first thing I would do is call my insurance company and tell them what was going on. Second, I would call my primary care and tell him to give you a referral. I was diagnosed in 1999 and I had to fight for 2 years to finally get referred to the right doctor, so please, please do all I say. It sounds like your cardiologist problem is EGO! If he causes you more damage or your life, tell you family to sue his ass for medical malpractice. You would not believe how much I had to threaten to get heard. You as a patient has rights and you can fire a doctor any time you see fit. Keep records even if they are your own written (journaled) records. Right now I am so livid over your problem I can’t think of everything. So, please text me again at mizkytee@att.net.

  • Lisa
    Participant
    Post count: 10

    Patricia– I didn’t post to get you mad, I’m so sorry this upset you so much. I am so new to this that I don’t even know where to begin. I will try to get a referral from the cardio. He’s actually the first one that really listened to me and realized what i’d been going thru all this time. When all the other docs I think were beginning to think that this was all in my head–(hey I was too at that point) he’s the one who listened and believed me and for that i’m grateful. he’s also the one who dxed me with the PAH as well as the stiff left atrium. I will try to contact the office and see if they can possibly give me a referral even though he said I didn’t need one–because treating the underlying problem will resolve the PAH or so he says. He may be totally right?? i’m not saying he’s not, i’m just trying to put the Bigger puzzle together and make sure we’re on the right track because he said the other docs I had literally bbqed my heart (when they did the ablation and cox maze) which i’m not so sure about.

  • Patricia
    Participant
    Post count: 23

    Oh, ok. I didn’t realize you had an underlying condition and I have never heard of a stiff left atrium. But I do know that yes, in some instances, if there is an underlying condition and that condition is taken care of the PAH can be reversed. But I also that if the heart is enlarged, the enlarged heart can damage the lungs. It’s pretty complicated. Really educate yourself about this illness, but it does sound like your doctor knows what is going on, after all he is telling you the underlying condition needs to be treated. For now I would follow his advice (because, as I said, I did not know you had an underlying condition) and give him a chance to help you. I gave you my email so whenever you need help, advice, an ear — whatever–email me. Take care.

  • Lisa
    Participant
    Post count: 10

    UPDATE–I was finally able to get an appointment with a PH specialist without the referral–it’s not until January but I am on a waiting list if something comes up sooner. It’s up at the University of Utah so I’m real happy about that.

  • Michelle
    Participant
    Post count: 3

    Recently diagnosed. After right heart cath, dr told be I had “stiff heart”. When I went back to my heart specialist for results I told him what the dr said and he said that wasn’t true. My pulmonary dr sent me back to him due to racing heart and he said I’ll put a monitor on you, but you’re already on xeralto so there’s not really anything else I can do for you.
    I was diagnosed in may 2017 via echo test. I was seeing a different heart specialist in 2016. He also did an echo but didn’t tell me I was in the severe range then. I’m having a tough time trusting doctors, period!!

  • Patricia
    Participant
    Post count: 23

    Hi. I know you have posted before and I have shared info with you. All I can tell you is that you need to find a Pulmonary Arterial Hypertension specialist. A cardiologist won’t do and neither will a pulmonary specialist. With our illness we need to see a doctor who SPECIALIZES in Pulmonary Arterial Hypertension. Believe it or not, there is a HUGE difference. Go on phassociation.org and you can find the closest specialist to you. You really need to quit listening to doctors who don’t really know about PAH.

    • Holly
      Participant
      Post count: 7

      Hello, I realize that my post has nothing to do with the original post posted by Lisa, but I do have a question to all….I was recently diagnosed with PH and looking back on everything that has happen over the past year, everything makes sense now.
      I was at the ER this morning because of exhaustion and my arms keep going to sleep, I can not get sleep due to I wake up due to my arms and hands falling asleep, I’m exhausted, I feel awful, and I don’t have a clue if this has anything to do with PH but I went to the ER and the Doctor told me that #1 pulmonary Hypertention was not a diease #2 go home a take 2 alieve that I would be fine, #3 he does not believe I even have PH because my lungs sound clear and my heart sounded good, and he thinks my doctor is over reacting…….Please tell me this doctor does not know what he is talking about
      I was diagnosed on Nov.17,2017 and no I do not know anything about this, but I don’t think my Cardiologist is lying to me or over reacting
      Thanks,
      H.Allen

  • Patricia
    Participant
    Post count: 23

    Holly, clearly the ER doctor is an idiot. The last test PH specialists do to confirm that a patient has pulmonary hypertension is a right heart catheterization. Did your doctors perform that test on you? If not, that is what they have to do to confirm you have PH. Have you been put on any medications? If so, your arms falling asleep might be a side effect. I would suggest you try to find a PH specialist near you. If there isn’t one, you may have to travel to a specialist. I used to have to travel from Texas to UCLA to see a specialist. It is really important to see a PH specialist.

    • Holly
      Participant
      Post count: 7

      So a referral to the Pulmonologist wont be able to diagnosed me correctly or put me on the right meds?

  • Patricia
    Participant
    Post count: 23

    Holly, I DON’T UNDERSTAND your last post… Of course a Pulmonary Hypertension specialist will be able to help you. You need to give more details…did they do the right heart cath? That is really important.

  • Patricia
    Participant
    Post count: 23

    Also, I was diagnosed in 1999 and to this day my lungs are always clear and my heart sounds normal, so you can’t go by that.

  • Patricia
    Participant
    Post count: 23

    Just reread your post and I think I understand it. No doctors really understand pulmonary hypertension unless they specialize in it. Where do you live?

    • Holly
      Participant
      Post count: 7

      lol ok well what I meant was I need to see a SPECIALIST not just a pulmonary Doctor, I need to see a doctor who specialiszes in PULMONARY HYPERTENTION????
      Not any doctor who is a Pulmonary doctor will do??? That is my question,
      I live in Marion, Illinois –

  • Patricia
    Participant
    Post count: 23

    YOU NEED TO FIND A PULMONARY ARTERIAL HYPERTENSION SPECIALISTS. GO ON PHASSOCIATION.ORG WEBSITE TO LOOK FOR ONE. IF YOU CAN’T FIND ONE ON YOUR OWN, CALL PHASSOCIATION.ORG

    • Holly
      Participant
      Post count: 7

      WOW OK THANK YOU… NOW I FEEL LIKE MY MOTHER IS YELLING AT ME….but thank you for the advice

  • Patricia
    Participant
    Post count: 23

    Look into the Mayo Clinic in Minnesota.

  • Patricia
    Participant
    Post count: 23

    Not yelling at you, just get tired of shifting and punctuation.

    • Holly
      Participant
      Post count: 7

      Lolol its ok I know the feeling, and thank you I will look into the Mayo clinic, I did find a Center in Chicago

    • Terri
      Participant
      Post count: 1

      I am in Florida but I am originally from your area. I think there is a very well respected PH specialist at Barnes in St Louis. I will try to get back ASAP with a name but the others are right that you must go to a specialist. Best wishes.

    • Holly
      Participant
      Post count: 7

      Terri, thank you I truly appreciate that….I am currently in Savannah and was diagnosed here but we are relocating to Marion the 1st of the year. I have an appointment Monday with a pulmonary doctor, but as far as I know he is not a specialist.

  • Patricia
    Participant
    Post count: 23

    But seriously, look into Mayo Clinic. That is close to you.

  • Patricia
    Participant
    Post count: 23

    Best wishes to you. Ths is not an illness you can play with; it is a very serious illness and time is important. I know because it took doctors two years to diagnose me and other doctors told me I they had caught it early enough my condition wouldn’t be so serious

    • Holly
      Participant
      Post count: 7

      Thank you, and best wishes to you as well…..I know how serious this illness is and I know time is important…..I’ve been trying since I found out to get answers, but even on this website I cant find what I’m looking for….but I will……I’m not a quitter and I’m not going to just give up I have a gbaby that I will see grow up…so I am not worried.
      I hope everyone has a fabulous Christmas…
      Repectfully,
      Holly

  • Patricia
    Participant
    Post count: 23

    Merry Christmas to all of us, and God bless this whole world. And yes, you must see a PH specialist. Take care.

You must be logged in to reply to this topic.