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Recommendation for myectomy 1-year followup

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CatCyclist33 Find out more about CatCyclist33
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  • Recommendation for myectomy 1-year followup

    Hello,

    I've posted previously about my myectomy last October at the Cleveland Clinic.

    Since then, my recovery has been uneventful, with no complications. I've seen a local cardiologist (non-COE) who seems to know quite a bit about HCM.
    My most recent doctor visit was in Feb, and included a physical exam and ECG, but no echo. We decided to wait a while to do an echo. I've also been exercising regularly (almost daily), possibly a little too hard! I've seen a slight improvement in my capabilities, and have no real symptoms, apart from dizziness upon standing, but quite frankly have not improved as much as I had hoped, in light of some of the "miracle" recoveries you see posted in this forum.

    My question to the panelists here is in a similar situation, what would you do--schedule a followup appt. at a COE, or continue with the local cardiologist?
    Obviously, the former would require plane travel and days off from work. Also, what would a one-year followup generally include? Would a stress test or stress echo be appropriate? My last one was over a year ago.

    Thanks for your perspectives.

  • #2
    Hello Cat....I think what is important is to sit down and decide what exactly is making you feel "not improved as much as you had hoped" Don't compRe your self to other stories....just compare your self to before myectomy and after myectomy.
    chest pain, SOB, exercise tolerance, Blood Pressure arrhythmias etc. This will help you be clearer about what your issues are AND will help your cardiologist, local or at the COE. You may want to contact your COE Cardiologist by email and get his opinion about a 1 year follow up.
    Personally, I was having a lot of unresolved fatigue issues which were not improving.....Going for a 1 year follow up at my COE, Mayo Rochester, gave me a lot of comfort and a couple of suggestions for my local Cardiologists that did help my fatigue partially. I have found that post surgery my cardiac meds could be reduced which helped.... but we also have to remember that you still have HCM even though the obstruction is removed. And recovery is different for everyone.
    I am 4 years post -op and going back to cardiac rehab because I never got myself back up to the activity level I would like to be..... I am 69 and diabetes has played a part in my fatigue also......Chest pain improved, sob improved arrhythmias improved... All immediately after surgery.....But the years I was not functioning well before surgery took a toll on my muscle mass and fitness and it hasn't been easy for me getting it back.....So the surgery has done its job, you definitely need a yearly echo to check on that... but the rest is fine tuning to get you to the best you can be. Going for a 1 year follow up and specifically letting them know your issues is very reasonable.....I did have an exercise VO2 study at my follow up to help determine whether my fatigue was cardiac in origin or something else.
    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
      Hi Jill,

      Thanks for your thoughts. As always, you really help put things in perspective.
      I'll keep you updated on my findings.

      And best wishes on your progress as well!

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      • #4
        I didn't go for a follow-up until it felt like I needed it. In my case it was several years after my myectomy, but there's no reason not to go now if you feel there are issues that need to be addressed. I think Jill covered everything else I'd say.

        Gordon
        Myectomy on Feb. 5, 2007.

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