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Cleveland Clinic in October

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Colorado213 Wife to husband diagnosed with "a severe case of HOCM" according to Dr. Salcedo at University Colorado Med Hospital HCM Center March to June 2014 I'm the main researcher and planner, so here I am! Mother to 3 young boys who will be tested in the coming months as soon as we get daddy situated. Find out more about Colorado213
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  • Cleveland Clinic in October

    Justin has his surgery date set for October 9th. He is doing the one stop shopping: tests, meeting, surgery, recovery, then home.

    Other than the juggle of organizing life at home while we are gone, he is looking forward to this. He is SO ready to feel better. To gain some health and activity level back. I do not look forward to seeing him in pain but I know in the long run he will be so much better. A Septum of 3.7cm is a real drag. Time to fix that!




    Sent from my iPhone using Tapatalk
    Megan, wife to Husband, Justin with HOCM
    Husband diagnosed at 37 when taken to ER due to CHF on vacation in San Diego at Pomerado Hospital, March 2014
    Seeing Dr. Salcedo in UC Med Hospital Denver upon diagnosis
    AICD/Pacemaker July 2014 @ UC Med Hospital, Denver with Dr. Nguyen
    Myectomy at Cleveland Clinic October 2014 with Dr. Smedira
    Parents to 3 boys, 11, 8, and 6 all currently clear from recent echos

  • #2
    Re: Cleveland Clinic in October

    Honestly - its been 6 years or so and I really don't remember pain that much. Sure, the time in the hospital was a narcotic blur, but a week later - at home it was tylenol mainly. Nothing too bad. It was more fatigue than anything else. I do remember having my back hurt for about a month - it was the strain from the rib cage opening in the front.
    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 . . .

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    • #3
      Re: Cleveland Clinic in October

      I'm so glad you have found family to come stay with the boys and you can focus on the adventure that lies before you. I come from a health care background....caring for others for decades...I was amazed at the concentration of skill and compassion and cutting edge medicine I experienced at my COE. Made the many hospitals I've worked in look like amateur hour!
      Though the sternal incision seems a bit gnarly ( Your boys will stare at it a lot when dad gets home)... It really is one of the less painful incisions that can be made because it is not done trough layers of muscle. People who have a sternotomy for by pass grafting on the heart complain much more about pain from the incision made in their leg to get the graft than they do about the sternotomy. Coughing and turning on your side are painful in the beginning but hugging the heart pillow they give you really helps.
      Keep us posted ...... There are many posts about myectomies on this site.....and Cynaburst, one of our moderators, along with her husband, wrote a daily blog about her myectomy experience 8 years ago. You could ask her for the link.
      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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      • #4
        Re: Cleveland Clinic in October

        Megan and Justin
        Congrads on the booking. What a big deal! Soon you'll get the big package from CCF and it will look like you just booked a cruise. You'll get a comprehensive schedule for a couple of days of tests, but at least Justin will not have to study for them.
        Be prepared for a lot of waiting. At least the WiFi is excellent throughout the J-building where all your appointments will be.

        We found that all of the appointments ran pretty much right on time, and everybody was courteous, professional and very encouraging. When they ask Justin what surgeon he is seeing, the will likely say something like "Jeez, you couldn't find anyone GOOD?". Dr Smedira is like a rock-star there.

        While the testing appointments run on time, you might wait a while for the doctors. Our case was extreme, waiting over six hours for Dr Smedira, but we cut him some slack because he was busy saving someone's life in emergency surgery.

        My only beef with CCF was that there were no patient lockers for clothes and personal items, so tell Justin to dress lightly since you will be schlepping his stuff in a pretty CCF shopping bag.

        Every one there just so reeked of expertise and confidence, that by the day of surgery, I was totally stoked and was high-fiving everybody in the hallway on the way to the O/R. Justin will never see the anesthesia coming- they are like Houdinis that way. I was joking around with the nurses setting me up on the table and the next thing I remember is my wife's voice, coaxing me to wake up in recovery. I had no sense of the passage of time (6 hours).

        So the whole thing will be easy on Justin but harder on you, since you are left with a pager to notify you of milestone events throughout the procedure. Smedira will come out to see you after his 35 minutes of sculpture work and tell you how great everything went.

        I was back to work in 10 days, although just on light duty for a few weeks. I was driving again in 4 weeks (none to soon for the wife.) Good luck with everything and let me know if you have any questions.
        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

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        • #5
          Re: Cleveland Clinic in October

          He'll be in great hands.

          For me, pain was not that important an issue. They know how to deal with immediate post-op pain, and it declined pretty quickly.

          Gordon
          Myectomy on Feb. 5, 2007.

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