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We're trying to find the right doctor and the right treatment.

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Rachel87 My name is Rachel. My husband's name is Trey. We are both 25. We've been married for 6 years. My husband was diagnosed with HCM at around 14 years old during a sports physical. Right now a cardiologist that we're trying out has him on Verapamil -which he's been on and off of for around 10 years- and he was just recently put on Carvedilol after he stopped wanted to take Metoprolol because he hated it. The doctor said he may eventually take him off the Verapamil. His next appointment is 6 weeks away to go most likely go over his medications and I'm not sure what else.. There's still a lot that I don't know about or understand. I'm trying to learn and take it all as it comes. I joined this site in hopes of sharing our story and to hear others' stories and hopefully gain some more information and support from others experiencing similar things. Find out more about Rachel87
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  • We're trying to find the right doctor and the right treatment.

    My husband, Trey, doesn't like his doctor. He's only been to him twice now but he really doesn't like him.

    An explanation as to why we're not happy with him:

    - When he told the doctor his reasons for not wanting to take Metoprolol anymore, the doctor acted as though he didn't believe his reasons.
    Trey felt like he was having more flutters and palpitations and that it was messing with his mood a lot.

    - This doctor's "bedside manner" is the worst. And when Trey spoke of the palpitations and fluttering, the doctor just kind of waved it off and said that he just wasn't feeling them before but it was happening prior to the medication.. and that's all he said about it.

    - A few moments later, when he could see that Trey was getting frustrated and just not happy with him, he told Trey: "I know that I'm no Dr. Donner, but I'll keep you alive."
    Dr. Donner was my husband's pediatric cardiologist. He's a good doctor and a warm guy and he's really good to his patients. This only further frustrated my husband. He took it to mean that his new doctor was basically saying "I know I'm cold but I can still help you."

    - He told us that exercise wouldn't really help Trey's heart or give any real health benefits that it would mostly just make him feel better about himself.
    o_O What? That was the first time I had ever heard that in my life...

    - Lastly, he said the only way to treat this condition was medication.. then he later added there were surgeries but they're rough and brutal. He didn't even mention ICDs.


    He's a much older man and his practices are really old school I guess. I read the same opinions on a couple review sites about him. The general consensus was that he wasn't up to date enough on his methods and one man even went as far as to say that he needs to retire. Harsh. But.. what if?
    But at the same time, his seniority says that he's seen/treated several cases like this and understands the condition.. maybe?

    I'm still really new at this and just learning as I go..

    But anyway, at our visit yesterday, he was explaining Trey's most recent echo, he said -without telling us specifics or what exactly the measurement was of- that in about 6 years, "the measurement" has gone from -my husband said he said- 32mm to 177mm. That's like a 5x jump. Huge, right? That is a really high number! Can that be right?
    I thought he said it was 37mm to 130something (still a really high number) but my husband tells me I didn't hear him right. It's possible. He was giving us a lot of information kind of quickly and it was a lot to take in and, like I said, I felt like he wasn't being very specific with us. He left me a little confused which is another reason why I'm very seriously considering a change in doctors.

    Can anyone help me understand what measurement he's talking about and what it means? I asked him twice and Trey asked once and I still wasn't totally understanding how he was explaining it.. I've tried looking up information and articles on the internet..
    I read that there can be different areas of thickness or obstruction.

    Help?
    Thank you.
    Last edited by Rachel87; 06-19-2013, 06:53 AM.



    - Rachel

    Not sure what to write down here..
    My husband was diagnosed with HCM at around 14 years old.
    We're both 25. We've been married for 6 years. We currently have no insurance.
    He's currently on Verapamil and Carvedilol.

  • #2
    Re: We're trying to find the right doctor and the right treatment.

    Rachel --

    Condensing all your posts I will just give you my opinions here...

    1. Cannot speak to the medications as I do not take them but can tell you that everyone's experience with drugs is different and it is a case of trial and error to find the right one or combination to fit your husband's needs;

    2. As far as doctors are concerned going to one that you are not happy with for any reason will lead to distrust and no faith in which will lead to non-compliance on the patient's part. If he has not already done so he should seek the services of someone who specializes in HCM (usually found at a CoE) and a local cardiologist who will work with the specialist -- I lucked out in that my specialist is close enough that he is the only cardiologist I use but for most that will not happen.

    I just noticed you say you have no insurance -- there are many posts on this forum on that subject, do a search and you will find them. I am also going to say something I never have before, call the HCMA office as they will or should be able to help you with finding ways to offset the costs.

    Best of luck to both of you.

    Comment


    • #3
      Re: We're trying to find the right doctor and the right treatment.

      Hi Rachel,
      Frosty said most of what I'd say. In particular, it might help your husband to talk with an HCM specialist. Call the HCMA officen ((973) 983-7429) and make an appointment to talk with Lisa. She can help you find a specialist, navigate through many of the payment issues, and (maybe most importantly) have a better understanding of what you've been told so far and of what questions you should be asking the doctors.

      Gordon
      Myectomy on Feb. 5, 2007.

      Comment


      • #4
        Re: We're trying to find the right doctor and the right treatment.

        Having a chronic condition means you have to see a doctor more often then usual. Therefore, you should have a good feeling for them (and the staff), trust them and be comfortable to ask questions - especially when its confusing. Here's a telling sign. Ask him if he'd be willing to be your local cardiac care doctor, but willing to work with and consult with a COE doctor. If he say no - Go elsewhere. He obviously doesn't have his patients best interest first.
        The Office can help you and offer suggestions on how to navigate this area. Don't worry, it'll all work out in the end.
        Marc
        Diagnosed @ 48
        Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
        Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
        AICD - Valentines Day '08, Spark Plug replaced 11/14
        After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
        Quietly going insane . . .

        Comment


        • #5
          Re: We're trying to find the right doctor and the right treatment.

          Thank you all very much for your comments! I'm still very much in the learning and understanding period.
          We're going to call the office and double check the results of the tests and request a printout.
          I've talked to my husband about calling the HCMA before but he didn't seem interested then. Maybe that's changed now due to all of this. If not.. I'll call them anyway.

          Also, my husband told me tonight that he's going to call the heart clinic tomorrow and request a different doctor for his next visit, which is next month. Being stressed out by your heart doctor is just no good.

          I wish we had the money/insurance to go to the Emory HCM Clinic here in GA right now. I've asked Trey, my husband, a few times about it. He says we have to save the money first, which is scary. Anything could happen while you're saving. But we really just don't have it right now.
          So they did the EKG and echo at our more local heart clinic a month or two ago. I don't know how it works, maybe we can just take the test results with us or have them sent to Emory since they're so recent and they won't need to do tests there..? That might help financially.
          I just really hope to go there soon so he can be seen by actual specialists.
          I'm not sure if there is a specialist closer to us than Emory. We're a couple hours away from there.
          Hopefully by calling the HCMA office I can get a lot of these questions answered and find a way for him to see a specialist asap.
          After that, our only concern would be getting there.



          - Rachel

          Not sure what to write down here..
          My husband was diagnosed with HCM at around 14 years old.
          We're both 25. We've been married for 6 years. We currently have no insurance.
          He's currently on Verapamil and Carvedilol.

          Comment


          • #6
            Re: We're trying to find the right doctor and the right treatment.

            If your husband goes to the medical records dept. at the clinic or hospital where the echo was performed, he should be able to get a printout of the test results as well as a recording of the echo itself. My hospital puts them on DVD. Then if you take it somewhere else they can interpret the results for themselves. Be advised however that wherever you go they will likely want to run their own tests. The specialty centers tend to do a more thorough echo than what you get done locally.
            "Some days you're the dog... some days you're the hydrant."

            Comment


            • #7
              Re: We're trying to find the right doctor and the right treatment.

              Rachel,
              I'd posted something here and everyone said "call the office." I wasn't really sure what I was supposed to talk about, and wondered what would somebody in some office have to say that was useful anyway. It turned out to be an easy conversation, but more importantly, it was extremely valuable to me. At the end, I understood more about what might be going on with me, I had a list of questions for the doctors (and I understood the list), I had a list of suggested specialists I could see, and I had advice as to how to get through to their offices quickly. By the next day I'd talked with the specialist (that I still see) on the phone, and had an appointment to see him for two weeks later. I don't promise that it always works this quickly, but I'm quite sure you'll find the people in the HCMA office just as helpful as I did. Give them a call!

              Gordon
              Myectomy on Feb. 5, 2007.

              Comment


              • #8
                Re: We're trying to find the right doctor and the right treatment.

                Hi Rachel,

                When my husband was first diagnosed a few years back, he wasn't at all interested in speaking with Lisa at the HCMA or even going to a COE to see a specialist. He had his diagnosis, thought the local dr was good enough, and was content to just go about his business. I, however, was not on board with that plan. So I called Lisa on my own and had a chat with her. She was straight to the point and I was impressed with what she knew and the advice she gave. I told my husband all about our conversation, and told him he had nothing to lose by taking 15 minutes to talk with her. I also told him if, after that conversation, he still felt like he was getting the care he needed here and that a COE wouldn't offer him anything different, then I'd drop it. (Of course, I really wouldn't, but you know, sometimes you say what you have to say to get something done!) There was a huge turnaround in my husband's attitude after talking with Lisa and the next month he was at Cleveland Clinic. So please, even if your husband won't talk to Lisa now, do call and talk with her yourself.

                I don't think anyone answered your question about measurement, but usually when they talk measurements from the echo, they are talking about the septum. I assume they do other measurements of different areas of the heart too, but it's my understanding the septum is the main measurement. Definitely get the records ASAP and see what the measurements really were. If you can get them before your talk with Lisa, she will be able to help you make sense of them and what the numbers really mean. It's important because the septal measurement is one of the things they will look at when assessing risk of sudden cardiac death and the need for an ICD.

                Even though you don't have insurance, I am sure Emory would have a way to do payments. I think any bill we've ever gotten from any doctor or hospital has had something on it that that says something like "If you need help paying this bill, please contact..." Again, Lisa can help you out with that. I know it's scary thinking about the bills that will creep up, but I can tell you that the care and expertise your husband will get at Emory (or any other COE for that matter) will be worth it in the long run. Be prepared to pay for the echo all over again - doctors tend to like their own techs doing them, and the ones my husband gets at Cleveland are much more thorough than what he got here. And definitely get a new local doctor. Even if he has seen several cases of this over the years, it does not sound like he knows anything about HCM.
                Last edited by NDFAN; 06-21-2013, 03:19 PM.

                Comment


                • #9
                  Re: We're trying to find the right doctor and the right treatment.

                  Rachel, welcome. Liking your Dr. and trusting him are 2 very important parts of being a patient. I do concur with the others call the HCMA office and they will get you on the right path and give you back some faith.
                  Midge

                  Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                  ICD&Pacemaker 1996
                  Heart transplant March 19, 2004 @ Mayo Rochester
                  Mom of Kaye.

                  Comment


                  • #10
                    Re: We're trying to find the right doctor and the right treatment.

                    Hello all, my name is Richard.

                    I have been aware of my HOCM for a few years and it is now time to make a decision on what to do about.

                    In my own research I have found this organization and a doctor or two that are familiar with ASA, which is currently the way I am leaning.

                    I know from reading here and on their own website that Winthop University Hospital on Long Island is a COE and Dr. Naidu is published on the matter. I am in touch with him and am seeking
                    to set up a consultation with him there. But I'm also wondering where other COE's might be. I live in central western New Jersey so NYC or Philadelphia are both options for me.

                    Any help appreciated.

                    Richard

                    Comment


                    • #11
                      Re: We're trying to find the right doctor and the right treatment.

                      Hi Richard and welcome to the message board. Where ever you go, you need to be evaluated first to see if you are a candidate. The ASA cannot be done on everyone, anatomy is the key. The other key is the Doc. Just like a myectomy, you want someone who does ALOT of ASA's and has good outcomes. I am not aware of a specialist who does ASA's in Philly. In the NYC or Long Island area, Dr. Naidu does his fair share. Go get your consultation and see what he says about you and your anatomy and if an ASA is right for you.
                      LindaSo
                      Onward and Upward !

                      Diagnosed 4/07 HCM with fixed & dynamic obstruction
                      Myectomy with resected cordonae tendonae 4/08 CCF
                      ICD 10/08

                      Comment


                      • #12
                        Re: We're trying to find the right doctor and the right treatment.

                        Richard - Welcome. Do go over to the "hello, my name is. . ." thread and tell us a little bit about you. The HCMA suggest that you have a complete evaluation at a COE, and in your case, one that does both Myectomy and ASA. When a center does both, the experts then present to you the best options for a successful outcome. I was thinking of going the ASA route then met with doctors at Mayo and learned that I'd have a much better result with a myectomy. They thought I was too young at 50 for ASA.

                        You can find Centers of Excellence here:
                        http://www.4hcm.org/hcm/finding-an-h...pecialist.html
                        Marc
                        Diagnosed @ 48
                        Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                        Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                        AICD - Valentines Day '08, Spark Plug replaced 11/14
                        After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                        Quietly going insane . . .

                        Comment


                        • #13
                          Re: We're trying to find the right doctor and the right treatment.

                          Richard --

                          Firsthand knowledge of Dr. Naidu and Winthrop -- he has become my one and only cardiologist after having had an ASA by him almost 3 years ago. As far as his ability and expertise in performing this procedure you may find someone equal but I think it would be very hard to find someone better (yes, I am totally prejudiced and no, I am not on his payroll). There is no way that he will do an ASA on someone without extensive testing to be sure they are the proper candidate. An evaluation by him would certainly be worth your time - you can always seek a second opinion which is something you should do under any circumstances. Another thing to keep in mind is that no 2 people are going to have the same outcome be it ASA or myectomy, so what is right for you all things being equal is a decision only you can make.

                          Whatever you choose to do I wish you only the very best and if there are any questions I can answer for you just ask it here or send me a PM (private message) and I will certainly do my best to answer you as honestly as I can.

                          Comment

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