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Struggling With Making Decision

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Mark Jones Find out more about Mark Jones
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  • Struggling With Making Decision

    Hi, this is my first post - I've lurked for a while and have found the forum extremely valuable in learning about COE's, how to cope with HCM, and lots of other things. I'm going tell my rather long story in the hopes that some of you might help me sort through my decision. The last month has been a whirlwind of information. Thanks in advance to those of you who can get through it!

    I'm a 54 year old male in the Dallas area, diagnosed 10 years ago by a cardiologist that I've continued to see ~yearly. My case has been described as mild but has progressed in the last year to the point that 480mg of Verapamil (allergic to beta blockers) still did not allow me to participate in tennis anymore, was causing me to avoid activities such as snow skiing or even taking walks, and was becoming a real drain (easily out of breath and chest pain). A month ago, my brother (a physician) showed my echo results from a year ago to a cardiologist friend who was alarmed at my gradient and said I needed surgery SOON. At the same time, I had visited with my cardiologist and told him I thought a procedure was in order because I had to quit playing tennis. He agreed but said I should try disopyramide in the meantime to help my symptoms while I pursue a procedure. I knew I wanted to work with a COE on this.

    Two weeks later I had an appointment at Mayo (Rochester) with a full slate of testing and a consultation with Dr. Jeffrey Geske, who was great. In that two week period I had noticed the dramatic improvement in symptoms after taking disopyramide (2X 150mg daily). Sure enough, my results showed a much decreased gradient although definitely still obstructed with SAM. Dr. Geske surprised me with the news that a myectomy would make me feel a lot better but that it should be considered solely on the improvement of symptoms, not on reduced risk of SCD or prolonged life span. I'm not considered high risk but I still have a hard time wrapping my mind around that statement entirely. (If my symptoms are worse, aren't I at a higher risk?). But I accept that statement and so I am evaluating my symptoms on disopyramide. He was, by the way, a little surprised that I had not been monitored in a hospital during my introduction to disopyramide. I asked him if my dosage was correct and he said "If 480mg of Verapamil and 300mg of dispyramide isn't enough, you really are at the point of needing surgery."

    Another wrinkle is that because I have a right bundle branch block, Dr. Geske explained that myectomy often affects the left bundle branch and I should consider a 70% chance that a myectomy would require a pacemaker permanently. Well, that's something to process.

    Enter cardiologist #4, a high school classmate that saw my posts on Facebook from Mayo. He practices in New Mexico and I had no idea he was a cardiologist. He's been fantastic to dialogue with me on Messenger and told me he has many HCM patients who have avoided surgery with disopyramide. He thought maximizing my dosage of it, while reducing my dosage of Verapamil might be a good direction...of course he also would recommend that I be monitored to arrive at the correct dosage. I went to 3 x 150mg of disopyramide and 360mg Verapamil. I know this self experimentation may sound crazy but I'm really eager to get the medicine somewhat optimized before I decide whether to have surgery. I had noticed the side effects of disopyramide (dry mouth, dry skin, difficulty urinating, constipation) and he said he prescribes Physostigmine to help with that. I also noticed a little light-headedness upon sudden exertion and my legs tired quickly if I tried to jog.

    And why not hear from a 5th cardiologist....my college age kids needed to be screened and I set them up with Dr. Turer at UT Southwestern who is part of their HCM group because I really don't think my local cardiologist has a lot of experience with HCM. I went to their appointments so that he could see my kids' potential "HCM source" firsthand. He was very interested in my case and said, "well, a myectomy would make you feel a LOT better....and maybe you could get off all this medicine." Wow, he sounded just like Dr. Geske at Mayo. He also said his experience is that the effectiveness of disopyramide is not maintained for very long.

    In the last week I decided to take a quick ski trip to Colorado with my son to see if the disopyramide would allow me to handle the high altitude and exertion that I had previously avoided. I did work remotely during one of the days and on workdays I take Vyvanse (ADD medication to help my focus) which also causes dry mouth. Wow, my mouth was a desert and my voice was reduced to a hoarse croak and it was highly unpleasant. I definitely would need to look into the Physostigmine. And I'm finding taking something 3 times per day is very challenging for me (did I mention I'm ADD?). The high altitude experiment was mostly positive -- my breathing was better than it had been in many years, although my body is not in good shape and my burning legs were a bit depressing. I also might be a little overmedicated and Dr. #4 felt that I might need to back off the verapamil a little more to increase circulation.

    So here I am trying to decide if life with verapamil + 3 times/day disopyramide + physostigmine and constantly trying to get the right dosage (which probably changes based on my circumstances) constitutes a suitable alternative to open heart surgery that will apparently make me feel a lot better, though not any safer, and get off the medicine, but, oh, there's a 70% chance that I would need a pacemaker. My instincts are that if a myectomy is ultimately unavoidable, I might as well get on with it and enjoy life the best way possible. My physician brother's instincts are that I should avoid surgery if possible. I respect and trust the input of "all my doctors" but I can't make it converge. Hoping some of you have been through this process and have some wisdom about how to weigh my alternatives.

    Thanks!
    Mark
    Last edited by Mark Jones; 01-09-2018, 10:03 PM.

  • #2
    Hi Mark,
    Im from Denver.... glad you were able to enjoy your ski trip here..... That takes a lot of stamina. In general HCM specialists/ COEs use a set of guidelines for recommending treatment, based on the ACCF/AHA guidelines of 2011. In these guidelines every point of treatment was researched and the scientific results applied to rate risk benefit ratios for each of the various testing and treatment options that are part of HCM Care. In general, these guidelines recommend pursuing all medical avenues before proceeding to surgical intervention.
    That being said they are guidelines not laws..... and every cardiologist will have various experiences and intuitions about each individual case. So none of the 5 cardiologists you talked to are necessarily wrong.....However, I would recommend listening to and questioning the Cardiologist with the MOST clinical experience with HCM.If you don't quite understand the recommendation made by your Mayo cardiologist,..ask him to explain in more detail. If a cardiologist is evaluating someone who is able to ski, walk, play tennis etc on a medical regime.....they would most likely not have any reason to recommend open heart surgery.
    My personal experience with Disopyramide was that it felt like a miracle.....but the miracle only lasted 4 weeks......I have known others that stayed on Disopyramide for 7-8 years before needing myectomy.
    The unanswered question being entertained by many cardiologists now is...if Myectomy is fairly inevitable, would it perhaps be better to do it earlier rather than later? and this may be the crux of your question.....How long does Disopyramide work for you? How long can you tolerate the side effects? Do you have a good quality of life? These will be considered above certain numbers from an echo because in HCM LV outflow track pressures and SAM can very hour to hour.and day to day.
    As a Mayo Clinic patient you have access through their app to ask your HCM Cardiologist questions.....Mayo also has a closed Facebook group for HCM patients........Other resources HCMbeat.com .... HCM Care app or website .... and phone consults with HCMA.
    Keep us posted.
    Last edited by JillC; 01-10-2018, 11:11 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

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    • #3
      Jill,
      Thanks very much for your response. It's very gratifying to see that someone else "gets" my dilemma....your comments are exceptionally insightful and help me understand the medical advice I've received.

      I've just sent a message using the Mayo app as you suggested. Part of that message was to seek a perhaps better "cocktail"... make the disopyramide the extended release version, increase its dosage, reduce Verapamil, add physostigmine. I expect that he will wants me to do that in Dallas. Does anyone know of cardiologist in Dallas who would be experienced with optimizing my medicines?

      Honestly, I feel like a racehorse inside the gates ready to run to the myectomy and be done with all this medicine. But logic (and my family!) Insist that I give the medicine a chance. But also I am a little freaked out at the prospect of having a permanent pacemaker...not because I have any knowledge of it except that from what I've read it is one of the metrics used to evaluate the success of surgical procedures. That negative connotation is bearing heavily on me. Are there comments or resources to help me with a more educated and objective understanding of what life with a pacemaker would really mean?

      Thanks again,
      Mark

      ​​​​

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      • #4
        I think Jill has given you good advice. I'll only add that the HCMA Facebook group is an extremely good resource.
        Gordon
        Myectomy on Feb. 5, 2007.

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        • #5
          How far away is San Antonio? University of Texas Health Sciences Center is an HCM Specialty Center.... I guess it is about 4.5 hrs away.... but you might call and ask if they have any recommendations for the Dallas area. Or ask on HCMA Facebook page for recommendations in Dallas. Your Mayo Cardiologist can work with your local cardiologist to carry out a medication plan.
          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


          • #6
            Hello! I am also a patient of Dr. Turer, and can not believe my good fortune and blessing that he is here in my area. My life and my view of living with this condition has drastically changed thanks to his practice. I Had a hard time finding a decent cardiologist that knew much about handling this... And for me, every time I left one of their offices, I felt like I had a death sentence over my head. I NEVER feel that after leaving Dr. Turer. I will be receiving my myectomy on Monday from Dr. Bajona. Scared, anxious, excited to have it behind me. It is a very personal decision and very tough one to make. I am 46, have 4 children between the ages of 9 and 19, and there's a lot at stake no matter which path I chose.
            As far as UT southwestern, they ARE a certified center of excellence - and they are excellent! And if you have not met with or learned about their surgeon, Dr. Bajona (by-owna) yet, you might want to set up a consultation with him. he is also a truly incredible gift to those of us living in this region with HOCM. He spent a lot of time at mayo in Rochester. He is very well versed and well practiced in successful myectomies.
            It took me two years to make this decision, but I finally realized, life is becoming a spectator sport for me more and more.... And I would rather participate. I already have an ICD, and hopefully will not become pacemaker dependent as I know that's always a risk...
            Last edited by Heidi Larson Beeler; 06-11-2018, 01:52 PM.

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