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Knowing What To Expect

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carolynhaysjones Find out more about carolynhaysjones
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  • Knowing What To Expect

    I'm new to HCMA, but I have already talked to Lisa, who is such a support and wealth of information. I will go to the Cleveland Clinic the last week of March for a myectomy, and I want to learn all that I can. How much pain is there after surgery? How long should I expect to be in the hospital? How difficult is it to fly home? Do the anesthesia nauseate you? How long did it take you to resume normal activity? Will I really feel better after surgery? I appreciate the advice.
    Carolyn Jones, Germantown, TN

  • #2
    Answers

    I haven't had a myectomy, so I can't answer your questions personally but I suggest using the search feature (middle of red links up top) to find all the myectomy posts. there is a wealth of info in the board, you just have to "ask."

    Comment


    • #3
      Hi Carolyn. I'm sure others will jump in soon, but I want to tell you that you are on the right track. You're going to one of the best facilities available for this procedure. Please check back in often and keep us posted on your progress.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

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      • #4
        Hi Carolyn,

        I can give you some answers from my experience but we are all different. The pain is real bad of course if your pain med regime gets interrupted for any reason so stay on top of it and watch the clock for time intervals. When you are initially in the TCICU the staff takes good control of this and you are pretty heavilly dosed. My issue was that I started vomiting and they stopped the meds for awhile to assess if it was the pain killer. They did not add a new one in as fast as I would have liked, so it got a little hairy for awhile. I still blame the fact that the Red Sox were in the playoff game to determine if they would be playing in the world series in 2003 , everyone at the nurses station was very intense that night. When you go to step down cardiac care you are able to tell them , I want the pills and watch the clock so they bring it when it is due. Discuss a plan as soon as you can. Ask all the questions that come to mind , a note pad at your bedside is important, I used my Kleenex box The pain backs off gradually and you are able to manage it . The anesthesia did not make me nauseas it was the pain meds , even the pills ( percocet) bothered me. They were able to help me by giving me an anti- nausea pill before the pain pills. I also alternated Tylenol extra strength in between and it helped decrease my need for the big pain killers.

        I was in the hospital for 7 days then one week later for 3 days then 7 weeks later for 2 days. Most people stay 5-7 . I had some complications that most do not encounter.

        I have read that most have no problem with the flight, manage your pain and hydration and you will probably sleep mostly. Of course you will have someone with you right?

        I think normal activity varies from person to person . I was willing in my mind just could not for awhile. At about 8 weeks I was doing somewhat normal for me minus lifting but I was feeling stronger every day leading up to the 8 week mark. At 12 weeks I went to the hospital and stayed with my sister and family for the day because her husband had a valve repair. I remember feeling like I was back to my normal albeit mostly limited routine. Prior to myectomy , I never would have tolerated a day like that.

        There are many here who have had great recovery time and some are women . I know they will give you their story. We need to hook you up with a non- complicated case.

        Yes you will feel better after surgery. Even though I have many issues there was a relief of some very severely impacting symptoms. Myectomy is not a cure but an intervention to help relieve some of the more debilitating symptoms that each person has with their particular HCM.

        Walking post surgery ASAP is important beyond words and breathing into your inspirometer 10 times an hour. It will hurt but you will improve and it will help prevent pneumonia.

        Any other questions ? Ask away. We are all here to help you.

        My best,

        Pam
        Dx @ 47 with HOCM & HF:11/00
        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
        Lead failure,replaced 12/06.
        SF lead recall:07,extracted leads and new device 2012
        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
        Genetic mutation 4/09, mother(d), brother, son, gene+
        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

        Comment


        • #5
          Carolyn,

          I had my myectomy and double bypass last March 18th at Cleveland Clinic. Nick Smidera was my surgeon. I didn't have that much pain. Sure it's not like getting a scratch on your chest, but it's not that bad, at least it wasn't that bad for me. Just remember to hold your pillow or folded blanket to your chest when you cough and don't be scared. The staff in CICU are great, they Will take very good care of you. I was in CCF for 30 day due to some complications, but the flight back to Baltimore wasn't bad at all. The airline will get you a wheel chair and take good care of you. I did have some nausea but that goes with the program.

          If you want to chat via the telephone, email me and I'll give you my telephone number.

          Ralph

          Comment


          • #6
            Hi Carolyn,

            As Sarah has stated, please search through the previous topics in this forum and you will find many many very specific posts concerning myectomy at the Cleveland Clinic... where to stay while having your pre-surgical tests, what to expect, things to take with you, even where the nurses hide the ice cream on the 8th floor.

            Like any surgery, some myectomies are a bit more challenging than others, but overall you will find that the vast majority of experiences at the Cleveland Clinic are extremely positive. The anesthesia didn't make me sick at all, in fact i was wanting to eat pizza pretty quickly after waking up. Then again, i'm kind of a pig and it would take a lot for me NOT to be hungry after any kind of surgery. I was able to get by with just tylenol as a painkiller for some time after surgery due to a problem with my prescriptions. Of course as soon as my local docs were able to get some percocet into my hands, i didn't turn it down either. LoL.

            Be sure to read everyone's accounts so you can get a balanced view of the myectomy process... the good experiences and the bad, but bear in mind that your own experience will most likely follow the norm and you will do quite well.

            P.S. They keep the ice cream treats in the nurses lounge refrigerator down the hall. Don't let them get stingy with you on the popsicles now.

            Jim
            "Some days you're the dog... some days you're the hydrant."

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