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To complain or not to complain....that is the question!

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  • To complain or not to complain....that is the question!

    I begin by expressing my appreciation for this forum – I have benefited enormously from all that I have read here (and I have read a LOT!) – and to have the opportunity to share my concerns with some very supportive and compassionate fellow travelers on the HCM road.

    My cardiologist has suggested that I may have reached the time to consider a myectomy.

    I am currently seeing Dr. Naidu in Long Island and I have a follow up consult with Dr. Sherrid who originally diagnosed me some 8 years ago. After some aggressive medical treatment that explored various dosages of metoprolol and norpace, and after reviewing my last echo, Dr. Naidu declared that he was not really seeing any benefit to this route and wanted me to talk to Dr. Dearani at Mayo. (I believe that something about the mid-ventricular location of my obstruction makes the question of surgery a bit of a challenge – not exactly sure why –doesn’t it always seem to go that you remember the important questions AFTER the doctor appointment – I’ll have a chance to pursue this with Sherrid…)

    It is possible that things will be much clearer once the others weigh in – but for now I am wrestling with several aspects of this decision.

    One is the subjective nature of the decision. Is the decision to have surgery or not based on objective criteria – on the numbers? Or is it based on my complaints about how much my condition is impacting my lifestyle?

    Based on the numbers – I believe my echo shows a dramatic and significant obstruction - 2.4 cm. (“severe mid-ventricular obstruction, with ejection into apex as well as outflow tract…severely hypokinetic/akinetic”).
    I read a lot of discussion about gradient. How is gradient measured – is that only after an angiogram? At one point I thought he threw out the number 36-40mmHG from an echo – is that my gradient? Not sure how that figures in. I have an ICD and it shows frequent SVT’s and an occasional VT but none of any significant duration. I have no problem with my lungs or mitral valve. He does seem to be concerned about the pooling of blood and the potential for a clot or aneurism but so far close attention has not seen evidence of either.

    My understanding is that this is pretty borderline problematic by the numbers.

    And then they ask abut my complaints - - and I find this frustrating!

    I am not sure whether to complain or not – is the glass half full or half empty?

    If you want me to complain – I can say that the slightest exertion causes me to be short of breath. A flight of stairs, a brisk walk and I am noticeably puffing. I worked with a trainer the other day – and it was very frustrating. Recently my grandson was crying in his crib - -I ran upstairs – by the time I got there and lifted him out – I had to sit down – he wanted to be held standing up and it took me a few moments to recover. I had a strange episode recently on a flight to LA where I felt my breathing was a bit less than effective – has anyone felt this at 30,000 ft in a plane? I’ve had a few occasions of light-headedness – but never where I had to sit down.
    But as symptoms go – these are fairly mild no?
    I have no chest pains - -in fact I never feel anything – when the ICD tech speeds up my heart he asks “You don’t feel that?” When they review the number of SVT’s I have they ask – “You never feel anything?” And the answer is No!

    And if you don’t want me to complain I could say – I am 63 years old! A lot of people 63 years old huff and puff going up the stairs. So I used to ski and play tennis and bike – I used to do a lot of things I no longer do. I am a busy professional with a long day and I am keeping up with a very busy schedule.

    And the fact that I am on 4- 500 mg of Norpace and 150 mg of metoprolol – each day – doesn’t that account for some of my limitations?

    So depending on my mood – things are either not so bad or could be a lot better – but is that how you determine surgery?

    Is how I present my case determinative of whether I go the surgery route - -or is my narrative secondary to the objective condition the trained eyes of the doctor will see?

    And then there is the question of now or later.

    Given the fact that I have obstructive HCM and medication is not being helpful – is surgery inevitable and now it is merely a question of now or later? Is my condition - -always one that deteriorates?

    The “put off surgery as long as possible” philosophy argues that each week sees new techniques and new developments and later is always better than earlier.
    The “get it done and behind you” philosophy says – you are never younger and healthier than you are right now – take advantage of that and have the surgery and get on with your life.

    And finally (I hope this has not been too rambling – thank you for your indulgence if you are still reading this…) I am also wrestling with what Dr. Naidu’s caution when he said – that his concern is not with the danger of the surgery – it carries only a 1% risk of death. His concern is the risk that I will go through all of this and not see much benefit – the risk of it not working is much more significant.

    I watched the video of Dr. Swistel doing a myectomy on the St. Luke’s web site – it is pretty sobering. This is a big deal – even those who have had minimal complications have given voice to that fact on this forum – and let’s not even discuss the testimony of those of you who have had less than optimal experiences.

    So I am not at all sure what to wish for when I hear from Sherrid and Dearani.

    I guess I am on a path that has a life of its own – and things will clarify over the next few weeks. Thanks for listening and I welcome any and all advice.

  • #2
    Re: To complain or not to complain....that is the question!

    Alanbl.....
    First and foremost, the thought processes you are going through are quite common....I went through everyone of them myself.
    Second, let's not call them complaints.....or opinions, they are observations of the limitations your HCM is placing on your life. You have significant limitations and symptoms......You do not have to be bed or chair ridden for your symptoms to be considered significant. Outflow tract pressures of 50 or more plus symptoms plus location of obstruction = considerations for surgery.
    Third, timing, the amount of time your heart spends pumping against the " boulder" of your septum blocking blood flow contributes significantly to the time when it may wear out and be unable to pump past the boulder and become a failing heart.
    Fourth, Dearani is the one to answer ALL your questions He is one of the best in the country who can address mid ventricular problems.... They are trickier than the usual myectomy.
    Facts are in, Dearani showed the slides at the last HCMA meetings. HCM patients with significant obstruction who have a properly done myectomy, live longer than those who don't , in fact they live the same lifespan as non- HCM patients.
    I could not run up the stairs, dance with my granddaughter or eat a meal without chest pain and sob before my myectomy by Dr. Dearani.......Now I can.
    Go get all your information....make the consult trip to Mayo.... Bring a list of questions and, like I did if you forget some call back .... He or his associates want you to have all the answers you need. Dr. Naidu is very well respected in the field of HCM, he would not make such a recommendation to see Dr. Dearani lightly.
    We all tend to gradually accept our limitations over time and accept them with a positive attitude as best we can to make life doable....We are so good at it we don't even remember what "normal" is until the possibility of something better comes along. Don't be afraid of myectomy...But be smart , well informed and make the best decision you can .
    Keep us posted!
    Last edited by JillC; 04-13-2015, 01:19 PM.
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

    Comment


    • #3
      Re: To complain or not to complain....that is the question!

      Hi
      I was diagnosed by Sherrid in 2005. He started me on Norpace and told me that it might give me about 7 years on average (everybody being different of course). Right after my diagnosis we made the decision to move south to rural SE Georgia, where I knew that I would have to travel somewhere else for sub-specialty and myectomy, should it be needed. After looking at road atlases, airline connections and the flip of a coin, I chose Cleveland.

      Sherrid was right- about 8 years later, after being maxed out on Norpace and Atenolol, I told my local cardio guy that if we did not do something further, that he was just weeks away from him writing me a note for handicapped license plates. I didn't care about numbers or fractions or ejections; I just felt like crap and put my foot down. He took note, made some phone calls and soon had me scheduled for a Cardiac MRI at Cleveland Clinic in Florida (knowing that I had established a relationship at Cleveland). Scarring was seen on the MRI, and after all my records were sent to Cleveland, I got the invitation.

      Yes, the video of Dr Swistel doing the mycectomy is sobering, (I watched it AFTER my myectomy), but remember, the patient is asleep! In the 15 months since my surgery, I have had a bad winter cold, a herniated disk, and a bout of gastritis and each of those were much more uncomfortable than recovering from the myectomy and cracked chest!! Oh and no more symptoms; I have no more excuses and have to work now.

      Good luck and don't be afraid to take charge!
      Angus Campbell
      Golden Isles Region, Southeast Georgia, USA

      Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
      Myectomy Jan 9th 2014 at Cleveland Clinic
      Drs Lever and Smedira

      Comment


      • #4
        Re: To complain or not to complain....that is the question!

        Alanbl: By now I’m sure you’ve done all your research on this site (and others) and you should have noticed that there isn’t a magic number that states when to have surgery. Its usually symptom driven as two people can have the same “numbers” yet react to meds or surgery completely different.
        I too didn’t have high numbers (septal thickness or gradient) but I had exhausted most medication limits without relief. It’s not uncommon to have to switch up the meds from time to time, and for the most part – its trial and error as we all react differently. So when the problem is identified (obstruction) and it can be alleviated by surgery when medication does not bring relief, they think its time for surgery. Believe me, it’s the last possible scenario they like to pursue.
        As to your Doctor's comment - Surgery is a risk, HCM is fickle, there are no guarantees that you will feel better. But we go to experts to get their educated guess. They are the ones best at giving you odds of a successful outcome. Yeah, surgery is no picnic, but you’ll be amazed how quickly you recover from the surgery and how fast you make improvements. Before long you’ll question “why did I wait so long?” but also, prolong pressure on the valve (gradient), and excessive pressure on the heart muscle (its now stiffer due to HCM) causes other issues and they tend to promote surgery in younger folks a wee bit faster to avoid this. In your case, you’ve had HCM a long time and are just now being affected (symptom-wise). There is no urgency that I know of, that’s for your doctor to determine, but you should schedule this to work around your needs and when you are ready (help at home/work, getting to rehab, etc.). I will say something about learning about surgery & recovery here on this site – I feel if you know what is happening and what to expect, you are a lot less scared and more relaxed about the whole process.
        And BTW, the whole Mayo experience is not to be missed. As a veteran of over 20 surgeries, I’ve never had a more awesome time. They have spoiled healthcare for me. You always welcome to vent here - we all do!
        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: To complain or not to complain....that is the question!

          With the standard caveat that everyone is different.....I have no problem saying that I had SUBSTANTIALLY MORE pain from having a Herbert Screw put in my wrist and a couple of bone grafts than I did from a myectomy. I was released from the hospital five days post procedure..and was back to work FULL TIME three days after that, and at the gym on the bike the day after that....once again following directions....but the difference was absolutely amazing....it wouldn't phase me in the least if they told me that they were going to have to do it again......

          Comment


          • #6
            Re: To complain or not to complain....that is the question!

            My myectomy wasn't easy for me; I had a lot of complications. But I got through all of them, and I felt (and still feel) vastly better. I'd do it again if I needed to.

            Obviously that doesn't mean that you should have a myectomy; my point is that we do get through this process and (if you have an experienced surgeon, like Dearani) overwhelmingly people do better as a result.

            I'll add that I wasn't necessarily the best judge of how much difficulty I was having pre-myectomy. I devoted a fair effort (and many people do this) adapting to my limitations. When I first talked with my HCM specialist, I told him about various symptoms; my wife added a large list of things that she'd seen that suggested to her that I was having trouble. I don't know whether you're doing the same thing, but consider the possibility.


            Gordon
            Myectomy on Feb. 5, 2007.

            Comment


            • #7
              Re: To complain or not to complain....that is the question!

              Sorry to hear you are having the issues you are experiencing. I had them too. Had the myectomy and am quite glad I did. It was well worth the scar I now proudly wear.........as I do things I couldn't do before. I had no idea how "sick" I was until I was "better". Dr. Dearani is your man to go to as indicated by Dr. Naidu.
              Onward and Upward !

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

              Comment


              • #8
                Re: To complain or not to complain....that is the question!

                Thanks to everyone who responded - each in your own way added something that gave me better insight or at the very least made me feel better about the course I am on.

                One of the things I found interesting that several of you raised - was the notion that this was not just about improving quality of life or getting rid of annoying symptoms - but may have significant implications for the health of my heart and longevity -- this is certainly something I intend on discussing with Sherrid and Dearani if I get that far.

                Yesterday I sent off my packet of tests and reports to Dr. Dearani - -tomorrow I have a consult with Dr. Sherrid. After we hear from them - -I will huddle with Dr. Naidu and come up with a plan.
                I'll probably update when I know more.

                Thanks again for all your support and encouragement

                Alan

                Comment


                • #9
                  Re: To complain or not to complain....that is the question!

                  Hi Alan,

                  I'm in the process of making a decision regarding myectomy as well and I also share some of your feelings... For me, all the numbers point toward surgery (3.1 cm septum thickness, >160 mmHg resting gradient, enlargement of left atrium, etc) but subjectively, I don't have any significant symptoms. I do get shortness of breath here and there but that's pretty much the only thing that bothers me. I can climb up 4-5 flights of stair with minimal SOB and it disappears a few minutes after I stop. That's not much different from the way a normal person response to physical exertion.

                  I've been told (and accepted) that I will need the surgery at some point in my life and the question is just "when." My cardiologists always tell me that I'm the primary driver in this process. I say when and they'll get it done. I'm leaning toward getting surgery soon because: (A) there is severe obstruction and it's not good to constantly put the heart under pressure; (B) there are signs that my heart is undergoing remodeling and I don't want to burn it out; and (C), probably the most important, I just want to get done with it and continue with my life.

                  I know it's a lot about me, but I hope it shares some perspectives and helps you make a decision.

                  Comment


                  • #10
                    Re: To complain or not to complain....that is the question!

                    Just a comment. If I had known it was an option, I should have had my myectomy sooner. I had it last year at Mayo with Dr Schaff. By the time I was advised of the option, my obstruction had resulted in prolonged back pressure to my atrium which caused it to enlarge. This, in turn, messed up my electrical pathways resulting in atrial fibrillation, which has been resistant to several different therapies, but at the moment is under control. My atrium may or may not start to return to its normal size now that the obstruction is gone. Also, I felt fine until about two months before my myectomy, then experienced a fairly significant decline in performance. After the myectomy, my heart recovered quickly, except that I had bouts of premature ventricular contractions (PVC) that took a while to figure out. Because I had Afib when I had the myectomy, Dr Schaff did a Maze as well. The result of all this is that I have developed left branch bundle block (LBBB) and that was the trigger point for having an ICD implanted a couple of weeks ago. Having said all that. I took my first bike ride in 10 months yesterday and felt great.


                    Sent from my iPad using Tapatalk
                    Joel

                    Born 1955 in USA, DX'd w/HCM 1996, in United Kingdom
                    2011, 2013, 2014 ablations for Afib and flutter in UK, INOVA Fairfax, VA, and Johns Hopkins
                    June 2014 DX HOCM at Johns Hopkins
                    October 2014 Myectomy and Cryomaze at Mayo Clinic

                    Comment


                    • #11
                      Re: To complain or not to complain....that is the question!

                      Joel - Glad your back on the bike! Continued success!
                      And to add on timing, When I finally DX, I wasn't particularly symptomatic. I too knew that at some time I'd require surgery and used this time to do my research into COE's and doctors. Not sure if it was starting on the meds or what, but once I did and had an ICD installed, it became apparent that I'd need more surgery sooner than later. Glad I had done my research and felt so much better in my surgical decision. We tend to accept how we feel as the norm, and its only when we fully recover from the surgery that we can look back and see how HCM affected us - and how some of us have lived decades not living up to our full potential.
                      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

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