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I'm going to have a Myectomy, I live in Phila.

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Linda S Find out more about Linda S
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  • I'm going to have a Myectomy, I live in Phila.

    I'm 52 years old and have HCM for the past 6 years. I live in Philadelphia, PA. I love to exercise and was a runner, since I was 25. I was feeling a diminished exercise capacity and was then diagnosed with HCM. I went on medication and was feeling okay. For the past year, I have been feeling symptoms of shortness of breath and am having trouble exercising. My doctor has recommended a myectomy. First he suggested the Mayo Clinic, but since it is so far from Phila., he asked around and was told about the Cleveland Clinic. He wants me to go to a place where they are done often and he doesn't think they are done often in Phila. Does anyone know anywhere in Phila. to recommend? I am so scared and nervous and have so many questions. Is Mayo or Cleveland better? How long is the recovery? How will I feel after the myectomy? I would love to talk to people who have had a myectomy.[/code]
    Linda S

  • #2
    Re: I'm going to have a Myectomy, I live in Phila.

    Dear Linda,

    I'm glad you found us. The Mayo and Cleveland are both excellent. There are Mayo and Cleveland patients who read the board, so if you use the search function for the message board, you can find all the posts about myectomies. There are also several people who've had them who will be happy to talk to you at length privately, too.

    Recovery is in stages. You'll be in the hospital for a few days after and then you will be at home a week or two, and gradually work your way back up to "better than before." There is also so cardiac re-hab to get you back in the swim of things, too, and that usually lasts a few months.

    Everyone I've seen post here has been very happy with their myectomy and felt much, much better once they've recovered.

    Your doctor is right about going to a clinic that does them all the time. This is your only heart ---you don't want someone "practising" his technique on you; you want someone who could do the procedure in his sleep.

    There are links to Mayo and Cleveland web sites, as well as a couple other HCM clinics, on our links page (go to the home page, then the links page). I highly recommend checking out the sites--they have a lot of helpful info there.

    take care and keep us posted,

    Sarah

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    • #3
      Re: I'm going to have a Myectomy, I live in Phila.

      For this one I can honestly say your in great hands with Cleveland and Mayo... it is your choice - I would not recommend doing this in Philly. There are many wonderful doctors - but only a select few who have ample expereince with this procedure - take the plane ride to either center it will be the best thing you have ever done for yourself.

      Lisa
      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)

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      • #4
        Re: I'm going to have a Myectomy, I live in Phila.

        Amen Lisa
        Cleveland Myectomy Crew
        Member since November 2002

        \"Chance favors the prepared mind!\"

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        • #5
          Re: I'm going to have a Myectomy, I live in Phila.

          Hi, Linda--

          I'm not far from you, about 20 miles outside of Philadelphia. I had a myectomy at the Mayo Clinic about a year ago. I have had some very good doctors in Philadelphia, but would not have trusted any of them to do the myectomy. As Lisa mentioned, you would be in great hands at Mayo or Cleveland. It made of world of difference for me to see an HCM specialist.

          Having the surgery has made a huge difference in my life. My need for medication has been reduced dramatically, and I feel great. After the myectomy, I was in the hospital for about five days. I stayed in a hotel another two days before I flew home.

          I was out of work for about eight weeks. I probably could have gone back sooner, but I wanted to be sure I was ready to be back full time.

          I'd be happy to talk to you more about the surgery. If you are interested, please e-mail me or send me a personal message.

          Best wishes,
          Ada

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          • #6
            Re: I'm going to have a Myectomy, I live in Phila.

            Thank you for all your comments and support. It really helps to hear people who have experienced what I am going through and what is ahead of me. I would love to talk to some of you on the telephone personally. Tell me how I can get your phone number or I'll give you mine. I have so many questions. Also, can anyone tell me where the closest hotel or place is where my sister should stay while I am in the hospital at the Cleveland Clinic?
            Linda S

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            • #7
              Re: I'm going to have a Myectomy, I live in Phila.

              Linda,

              I had a myectomy in 1999 at the Cleveland Clinic. I was 33 when I had it done and very nervous about it also. I was very happy with my care and thrilled to finally have a doctor that really knew what I was talking about with my hcm. You can read about my experiences under 'my introdution'. Feel free to email my home address and we can exchange phone numbers if you would rather talk. You are doing the right thing by gathering all the information you can.

              By the way, Cleveland Clinic does have what they call the 'guest house'. I think rooms there start around $100/night. Other hotels are around, but the clinic is not in a great neighborhood (older, ran-down, urban). We stay outside of downtown at a Red Roof Inn, but we have also stayed at the guesthouse when the weather was a factor.

              Best wishes!!

              Judy

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              • #8
                Re: I'm going to have a Myectomy, I live in Phila.

                Linda, the Guest House was very convenient for us and there is a Rite Aid just next to it that is a pretty good grocery store also(close to adequate ). It is an easy walk to the hospital and fairly well lighted. It also has parking and laundry facilities. So it depends on your preference, transportation and cost of other motel/hotel. The hospital parking garage seemed the same distance to walk as the Guest House. I'm sure others have been there more recently than we were (1999) and can offer tips also. Best wishes, Linda

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                • #9
                  Re: I'm going to have a Myectomy, I live in Phila.

                  hi, linda, i had a myectomy at ccf july 15 02. my dr. in pgh pa at first recommended mayo but after researching options i chose ccf only a few hours from me by car. ccf was great in preparing to go there and for the surgery and six days after. i also had two by=passes. i saw dr. asher and surgery by dr. smedira. he has done many surgeries. i was amazed the big hospitals in pgh pa did not do this regularly. the guesthouse was great. family stayed theeand some stayed at best hotel a few miles away. it had a ccf rate. i hope all goes well. john

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