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Looking for Woman who has undergone myectomy


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carolynhaysjones Find out more about carolynhaysjones
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  • Looking for Woman who has undergone myectomy

    Every one with HCMA has been so helpful and encouraging, and I can never tell Patrick and Lisa how much I appreciate their help. I am wondering if anyone knows of a woman in her mid-50s who have undergone a myectomy. I would love to know how she did. Thanks.

    Carolyn Jones
    Carolyn Jones, Germantown, TN

  • #2
    Carolyn, Pam Alexson and Shirley Mahoney have gone through myectomy at roughly that age. I'm sure they can give their experience. We also have Bettie who just had a myectomy at age 66. And one other person, Midge Rollins, had a heart transplant at roughly the same age. I hope that you can get a lot of information from these ladies.


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


    • #3
      Lynn S - although a bit younger can give you a womans view at myectomy.

      I am glad that we have been able to help you so far and I hope you know we are here for you as the process move forward.

      Best wishes,
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)


      • #4
        Hi, Carolyn. Welcome! I had a septal myectomy at The Cleveland Clinic in August of 2000. At that time, I was 54 yrs. Seems like a lifetime ago; but continue to do well, thanks to the myectomy. Would like to help in any way possible.

        Diagnosed 1996, Myectomy Aug. 2000, 3 Radio-frequency ablations for a-fibs 2003-2005.


        • #5
          I'm 48 and had mine a year ago i PM'd you yesterday, if you need anything please let me know

          Diagnosed 2003
          Myectomy 2-23-2004
          Husband: Ken
          Son: John diagnosed 2004
          Daughter: Janet (free of HCM)

          Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


          • #6
            Hi Carolyn,

            I am 51 and had mine at age 50 . If you need more specifics or anything in particular ,please feel free to PM me. I will wait as I see that you have heard from Shirley and I do not want to duplicate info. You can also find a lot of info out by using the search button and reading all the posts regarding myectomies. I had mine Oct. 2003.

            Let me know how I can assist you.

            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


            • #7
              Hi Carolyn-

              I had a Myectomy @ Mayo when I was 55, had a Double Bypass 9 months later & 2 Stents implated @ Cleveland 8 months after that.
              So you can do this !!
              I'm currently 57 & 3 months past stenting.
              Feel free to PM/call me with any questions, thoughts you are having.
              GOOD LUCK


              • #8
                Hi! I am a new member to this site, but an old war horse with HCM. I had a Myomectomy at age 35, and then again at age 47. I was one of the unlucky few where the membrane/muscle grew back. What would you like to know? I would be happy to share my experience with you. Don't be afraid. Don't think about the procedure too much, and just concentrate on how good you will feel when it is over. I was operated on at Mt. Sinai Medical Center in Manhattan. Feel free to contact me if you have any specific questions.
                I am 47 yr old female, mother of two. I have had two myomectomies and an aortic valve replacement.


                • #9
                  Underwent septal myectomy at age 66

                  Hi Carolyn,
                  I'm 66 and just had a myectomy at the Cleveland Clinic on Jan. 27, 2005. The surgery went well and I only spent 4 nights in the hospital and then was dismissed the next day in the afternoon on Jan. 31st. My sister was wondering how she was going to get me from the hospital to the Cleveland Clinic Guesthouse after being dismissed. The nurse said that it would be possible for me to ride the shuttle bus back to the Guesthouse. They took me by wheelchair to the door and I was able to walk out and get on the bus and ride back to the Guesthouse although I was weak in the knees. Later that evening after resting my sister and I took the elevator downstairs and went to the restaurant and I had a little to eat. It did take a long time for my appetite to come back. I am at 8 weeks post myectomy and I'm now eating almost as much as I used to eat. My sister and I stayed at the Guesthouse an extra night to make sure that I was still all right before starting home.
                  I was in fairly good shape before the myectomy. I wasn't having too many symptoms but fatique was on the top of my list. I was surprised when it was suggested that I had a myectomy. The last time I visited Dr. Lever my resting gradient was 200 and he thought that I should have it done.
                  Before the myectomy I was going to water aerobics twice a week for an hour each session and I also took part in Curves 3 times a week and each session is around one half hour. Also on my first visit to Dr. Lever I had a stress test and did very well on it with no arrythmic disturbances. I'm not overweight and I did lose a few more pounds over the weeks that my appetite hadn't returned and hope to regain a few of those pounds.
                  I didn't have the problem with pain that some on this website have talked about. I only took Tylenol when I was in the hospital. I've also never felt the grinding or popping of the ribcage bones that some talk about. It didn't bother me to be jarred when riding on the shuttle bus or in the car on the way home.
                  However, I started having problems after I was home a few days after surgery. It was finally discovered that I had water around the lungs like president Clinton. I was very sick and nauseous until that got straightened out and I spent several days in a hospital in Indiana until my medicines had been adjusted. Since that has been drained I have been feeling much better and I'm walking each day. This morning I walked for around 1/2 hour. So far arthritis doesn't seem to be bothering my hips or knees and I'm free to walk without pain.
                  I'm wondering if it isn't so much how old you are when you have this proceedure done, but what kind of physical shape you are in.

                  septal myectomy on Jan. 27, 2005


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