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What meds are you on post myectomy?

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Cynaburst Find out more about Cynaburst
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  • #31
    Re: What meds are you on post myectomy?

    Thank you, everyone, for your very informative responses. I was beginning to question if surgery was the right thing to do, and you all confirmed that it is. So my mind is at rest with that, thanks.

    Actually, Tom was scheduled to have the surgery a year ago, it had to be cancelled twice due to him having recurring prostate infections. It's been a long year of about 5 hospital stays, each time he'd get a fever they were very concerned about the infection going to the heart, icd, etc. He was finally cleared for surgery last week by the infectious disease doc, his intern/cardiologist, and his hcm cardiologist. They are keeping him on high dose of antibiotics indefinitely to keep the prostatitis under control. (This is not an uncommon protocol, I learned from my research from Mayo and Johns Hopkins.)

    So now we're just waiting to hear back about getting scheduled. Hopefully we can get in at the beginning of the week, so he's not recovering at the hospital over the weekend. Does anybody have thoughts on the best time of the week to have surgery?

    They will be doing an angiogram the day before, just to check if the pipes need work too. I assume this is standard protocol?

    Thanks again,
    Ellen

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    • #32
      Re: What meds are you on post myectomy?

      Yes, an angiogram is often done before the surgery so that if any bypasses are needed, they can be done at the same time. They like to only open you up once if they can help it.

      I agree with you that earlier in the week is better if that is possible. Usually less happens at hospitals on the weekends, and less staff/doctors are around.

      That being said, my surgery at Mayo was on a Friday, I was fine and had excellent care through the weekend, and my surgeon came to see me both Saturday and Sunday although the cardiologist didn't come until Monday.
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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      • #33
        Re: What meds are you on post myectomy?

        By the way, the reason I started this thread was because I wanted to see what drugs had worked best for everyone else who had been through a myectomy as I was still having symptoms and needed to try something different.

        Today I had an appt. and echo with my local cardiologist. I am now taking 150 mg. of Toprol XL instead of the 50 - 75 mg. atenolol I was on before, and I am happy to say that my echo today was significantly better than the last one I had in the end of January. Today I my gradient was 8, I had no SAM and only trivial MR.

        I have also been feeling really good since I started the Toprol (I started my switch with generic Lopressor,which was better than atenolol, but not as good as Toprol). Much more exercise capacity and energy than I had even two months ago. I swam laps in an Olympic size pool on Friday for the first time in at least 7 or 8 years without a problem. I can walk up hills now fast, and I pass up people walking all the time. I can even jog a little bit, although I haven't wanted to push it too hard. Anyway, the beta blocker switch for whatever reason has made a huge difference. It just goes to show you that all drugs work differently on different people. I feel almost as good as Scottonbike -- I am not sure that I am ready to go to spinning class yet, but I am a darn spot closer than I was 2 months ago.

        So, I hope I haven't jinxed myself by making this post, because I am certainly aware that things can turn on a dime, but for the most part, I think I may have found the right meds - at least for now. And I know that none of this would have been possible without my myectomy. Before the med switch I felt probably 80% better than before the surgery. I think that now I can move that up to 90% or maybe even 92%.

        So - to those folks considering the surgery, its well worth it, but do know that you may well still need to experiment with different meds afterwards - the surgery is not a cure, but it will definitely improve things.
        Daughter of Father with HCM
        Diagnosed with HCM 1999.
        Full term pregnancy - Son born 11/01
        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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        • #34
          Re: What meds are you on post myectomy?

          Cynthia, glad to hear the adjustments are helping. I haven't been on in awhile and wanted to post about my meds, if it would be of any benefit.

          I am on Atenolol, 12.5mg, one dose at night. That's it. Before myectomy, I was on Atenolol 50mg BID at the high point. This seems lower than many, but will say, that weight plays a factor in dosage for most people.

          For whatever reason, Dr. Lever put me on Lopressor post surgery vs atenolol (which I had been on for 15 years). I had poor tolerance to the lopressor, high HR, dizzyness, etc. Since switching back, my HR returned to it's norm. I am lucky to have no nightmares. I do have low BP (as it would be normal without meds), generally 90/50.

          I have decent exercise tolerance, can walk quickly and well, can swim laps, etc. I skated and cross country skiied in the winter. I do wish I had better cardiac endurance, like athletes (or at least semi-athletes), but remind myself that I am over 40 and do have HCM. But, my 4 year old asks me to run sometimes and I just don't feel like it, but I'll jog a bit with him. I do pilates, yoga etc with ease.

          But, really I have no complaints, but wonder if Toprol would give me the zip I desire???

          All in all, surgery has been great and I am doing wonderfully. I feel symptom free and know I am lucky in this.

          Blessings, Laura
          Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

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