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Lisa Salberg Find out more about Lisa Salberg
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  • specialist... does quality of live improve?

    Have you been seen by an HCM specialist and if so do you feel that the care you received has improved the quality of your life as well as your understanding of HCM?
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    Yes
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    Unsure
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    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

  • #2
    Specialist

    I think the specialist may have saved my life by suggesting an AICD. However, the medications I am on, supposedly to save my heart, haven't improved the quality of my life. Before, I was fainty. Now I am breathless. Guess that's just HOCM but neither is great quality of life. I'm sure there is a next step but I'm not ready to take it yet.

    Sue

    Comment


    • #3
      specialist- does quality of life improve?

      I put off seeing a specialist for a couple of years. Finally went to a specialist in December at a loss for what to do next. I was on max of 3 different drugs, already had a pacer/defib. Still very symptomatic-mainly SOB and dizzy. The specialist .could not find the obstruction which blatantly showed up here- both before and after my visit to Cleveland. He disagreed with the treatment I had had so far but offered no recommendations for iimproving my quality of life. He did make an adjustment to the PR interval on the pacemaker which immediately made me less SOB but also made my chest pain come back.My cardiologist here had tried the same thing with the very same results. So ....... I was very hopeful going in to the specialist, but left there feeling hopeless and certainly my quality of life has not improved. The way I look at it is this- my symptoms are just as bad but my options are less.

      Comment


      • #4
        Vickie...dont give up, please talk to your doctors and see what other alterations can be made to your meds.
        Are you Obstructed?
        Lisa
        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)

        Comment


        • #5
          My resting gradient is in the 20's (down from the 60's pre-meds), but my provocable gradient with Dobutamine is in the 150 range (with very minimal Dobutamine).When I was at the specialist's, they used amyl nitrate without a significant rise in gradient. I understand that it is doctors preference as to which agent they use to provoke and I don't know why I have such a huge difference between the two but all I know is the Dobutamine makes me feel like I do when I have the chest pain. Very little exerting will trigger my pain. My septum is only 1.6- 1.8. I am on Norpace, Atenolol, and Cardizem. At the specialist, he said "I don't have all the answers". I had put alot of hope into that visit and now feel that this is as good as its gonna get and believe me, I am not a whimp and I am very restricted in what I can do.

          Comment


          • #6
            Vickie,

            My resting gradient is 15 to 16 and my gradient with exertion is 70 to 80. My septal measurement is 1.6. Dr. Shah told me that if medications are not effective in relieving my symptoms I am a candidate for alcohol septal ablation or myectomy. He told me that either can be done with a septal measurement as low as 1.8.

            As I understand the physiology, obstruction & gradient are directly related. So if you have a provocable gradient of 150, then you must have an obstruction. It seems to me you should contact the specialists again and talk about what's happening in your heart, your symptoms, and your options. It seems likely to me that you'd feel a whole lot better if that gradient were reduced through ablation or myectomy.

            And I'm well aware I don't know your whole story, so do call the doctors and talk with them!!!

            As for me, seeing the specialist helped me a whole lot! I'm on a lower dose of beta-blocker so I have less dizziness and it's a different drug which also has stopped most of my chest pain. Yep, I'm still short-of-breath--that's the obstruction, I'm sure. And I have a much better understanding of what's happening in my heart and my current and future options.

            Pat

            Comment


            • #7
              Seeing a specialist make a HUGE difference in my life and it took a little over 2 months from first visit to a new me! I had previously been seeing my local cardio who was being very cautious and looking to me to make decisions. The one that took the longest time was to see a specialist. My only regret was that I did not know about HCMA earlier.

              Bob
              Cleveland Myectomy Crew
              Member since November 2002

              \"Chance favors the prepared mind!\"

              Comment


              • #8
                Re: specialist- does quality of life improve?

                Originally posted by vickie
                I put off seeing a specialist for a couple of years. Finally went to a specialist in December at a loss for what to do next. I was on max of 3 different drugs, already had a pacer/defib. Still very symptomatic-mainly SOB and dizzy. The specialist .could not find the obstruction which blatantly showed up here- both before and after my visit to Cleveland. He disagreed with the treatment I had had so far but offered no recommendations for iimproving my quality of life. He did make an adjustment to the PR interval on the pacemaker which immediately made me less SOB but also made my chest pain come back.My cardiologist here had tried the same thing with the very same results. So ....... I was very hopeful going in to the specialist, but left there feeling hopeless and certainly my quality of life has not improved. The way I look at it is this- my symptoms are just as bad but my options are less.
                I would like to give you my experience on this subject. I went to see Dr. Lever in March. I have a lot of the same feelings that you do. I am not obstuctive, but very symptomatic. Dr. Lever did change my medication from Cardizem to Norpace. He also had me wear a monitor for 48 hrs. and found some very fast heart beats (don't remember what he called them) so he had me get a difibulator/pacer which I had put in 3 weeks ago.
                My feelings on Dr. Lever is that he specilizes in HOCM and is not the greatest in dealing with people with symptomatic HCM. I was really disappointed after I seen him. It cost so much to go to Ohio, plus the cost of everything. I spend money I don't have, and like you stated "my symptoms are just as bad, but my options are less". Lisa and Sarah correct me if I am wrong, but I feel like I went to the wrong doctor, that I probably should of gone to Dr. Maron in Boston or a doctor that does more of his work for no-obstructive HCM. The problem is does the doctor takes your insurance and the reason I went all the way to Cleveland is they are the only ones that took my insurance.
                After I got home from Cleveland I made an appointment to see a doctor about getting the Gastric Bypass surgery, as every time I gain 5 lbs. I have worse symptoms and I have been steadly gaining weigh, I am up to 279 lbs. I can hardly do anything anymore and have to do something to get this weight off. The doctor said he couldn't do the Gastric Bypass but they are now doing a different procedure called a Lap Band which they don't have to cut your stomach or bowels, instead they put a plastic donut with a balloon in it around your stomach and close your upper stomach off some so you don't get so hungary,he said he could do that. I have to go to a lot of different doctors and get the ok to have this done. My cardioligist was the main one and she told me as soon as I am healed from the difibulator/pacer she would give me the ok.
                We are expecting our first grandchild (boy) in September and I want to be able to help take care of him. Somehow life has to get better. I feel like I am batting emptys so much lately I sure hope this helps.

                Comment


                • #9
                  Re: specialist... does quality of live improve?

                  Hello from Washigton DC. Just a quick response since I am doing this from a cell phone. Regarding your comments on Dr. Lever....
                  I would have to disagree that Dr. Lever only specializes in "HOCM".
                  It is true that those without obstruction have fewer treatment options and there by our treatment options are limited. I strongly recommend a phone call to Dr. Lever's office to discuss a possible adjustment in your meds that may improve your symptoms. I will write more later totally lost in DC looking for my hotel.

                  Be Well, Lisa
                  Knowledge is power ... Stay informed!
                  YOU can make a difference - all you have to do is try!

                  Dx age 12 current age 46 and counting!
                  lost: 5 family members to HCM (SCD, Stroke, CHF)
                  Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                  Therapy - ICD (implanted 97, 01, 04 and 11, medication
                  Currently not obstructed
                  Complications - unnecessary pacemaker and stroke (unrelated to each other)

                  Comment


                  • #10
                    Re: specialist... does quality of live improve?

                    Dear Vickie,

                    I was on Norpace, a beta-blocker and a calcium-channel blocker all at the same time once and I felt terrible. Unless there is some special reason why you are on a calcium-channel blocker AND a beta-blocker, I would seriously consider (with doctor's approval) dropping one of them. For me, it was the CCB that was so horrible, but everyone is different. Whatever you do, don't go cold turkey on your BB as it can make you feel worse by stopping suddenly.

                    While it is very important to see a specialist when you have HCM, there are often no easy answers. We don't even know why certain meds work on certain people and not others. Finding the right medication combo can take years.

                    For us non-obstructed people, there is only medication and nothing is every really going to make every symptom go away. And sometimes the side effects are just as bad as the meds and you start all over again with something else.

                    When my last medication stopped working, I went to my local cardiologist and said, "So my options are X, Y, and Z." He said yes. We discussed my options, with both of us agreeing at every point. We decided on X, which was to do NOTHING. He said, "So when am I going to see you again?" I said "three months?" He said, "Ok." I said, "I'm taking this much coumadin." He said, "You know it better than I do." I then had the same conversation with my uber specialist at the uber heart center over the phone. Ditto.

                    That being said, the next time I need ANY medical procedure whatsoever, I'm going to my heart clinic and avoid my local hospital like the plague. They've almost killed me and my mom several times a piece.

                    I'm sorry you didn't find a magic bullet in Cleveland, but there may not be one anywhere.

                    Take care,

                    Sarah

                    Comment


                    • #11
                      Re: specialist... does quality of live improve?

                      Do it do it do it. Even if you don't feel better physically, there is an incredible emotional and mental relief to know that you've talked to the people who have the right information. Information is power!
                      "We come into the world and take our chances, fate is just the weight of circumstances - that's the way the lady luck dances...roll the bones." - Rush

                      Comment


                      • #12
                        Re: specialist... does quality of live improve?

                        I recently made the trip out to Minneapolis, to see Dr. Maron. I thought the trip was very worthwhile. I had seen 12 other cardiologists locally.

                        Comment


                        • #13
                          Re: specialist... does quality of live improve?

                          HCM was diagnosed at my first visit, in March of 1996, to the cardiologist that I was referred to by my primary care doctors after an echocardiogram. After it was determined that the surgery could not be done in Philadelphia, I was scheduled to be seen at NIH in late July. There was a backup in scheduling because of all the ice during the winter of 1996. My specialist thought the waiting time was unacceptible. He searched on line and found Drs. Nishimura and Danielson at Mayo. I met them on a Monday and had the surgery on Tuesday. Since then, I've been fine. I never realized the problems that are associated with HCM and how fortunate I am, until I read the postings from the different contributers.
                          Elizabeth Ann

                          Comment


                          • #14
                            Re: specialist... does quality of live improve?

                            From our experience, the specialists we dealt with at a university center in Boston were no better than our local cardiologist. Due to the fact that they supposedly only see their HCM cases on Tuesdays, our last visit was long, hectic, and worst of all it was obvious that the "experts" had had enough by 4:30 that afternoon. We were rudely dismissed by one of them who told my son after his fourth echo, 3rd stress test and a cardiac MRI not all in the same day obviously) that he didn't have HCM but that they would call us.

                            We have since dealt with our local cardiologist who has shown a lot more compassion and has explained in detail my son's condition to him. We were amazed and delighted to find out that knowledge and expertise with regards to HCM is not privied to referral centers only. He's aware of the threesome in Boston, and did say that they're very good at dealing with patients who have symptoms and conditions that have already been identified and therefore can be dealt with. In terms of diagnosing and following up with an asymptomatic 15 year old athlete, they showed no interest, especially with his emotional well being.

                            Again this is only our personal experience and feelings. By no means should anyone question your specialist if they improve your condition. We felt that our son became just another statistic in their database that can be later used for publishing purposes, which I feel is how a lot of them like to build up their large following.

                            Our son's quality of life has not changed physically because he hasn't experienced any symptoms yet. Nevertheless, his emotional status has improved greatly because we think we have found someone who understands how important it is for him to remain active and is monitoring his activities very closely, the other part of the quality of life that deals with the head more than anything else.

                            "Risk is something we live with, fear is something we overcome".

                            Be well,

                            Bert

                            Comment


                            • #15
                              Re: specialist... does quality of live improve?

                              Bert,
                              I think your points are excellent!

                              Sometimes you can go to the "best" centers with the "most" expereince...however sometimes it is just not a good match for one of 1000 reasons.

                              The important thing is for anyone...to find a doctor who will listen, work with you and do his/her best in giving you the care you need.

                              Be well,
                              Lisa
                              Knowledge is power ... Stay informed!
                              YOU can make a difference - all you have to do is try!

                              Dx age 12 current age 46 and counting!
                              lost: 5 family members to HCM (SCD, Stroke, CHF)
                              Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                              Therapy - ICD (implanted 97, 01, 04 and 11, medication
                              Currently not obstructed
                              Complications - unnecessary pacemaker and stroke (unrelated to each other)

                              Comment

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