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I'm scheduled for my myectomy July 24 at Cleveland Clini

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Linda S Find out more about Linda S
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  • I'm scheduled for my myectomy July 24 at Cleveland Clini

    I'm now scheduled to have my myectomy at the Cleveland Clinic on July 24 or 25th by Dr. Lytle. When I met Dr. Lever at the meeting, he was going to be my cardiologist but he will be on vacation at that time and so they assigned Dr. Garcia. I'd like to hear about him from those who know him. I'm very nervous and am questioning myself now about whether I'm doing the right thing. I'm afraid of complications after the surgery and maybe feeling worse afterwards. Could that happen?I used to run and spin and do step classes and they became very uncomfortable so I have stopped. Also, walking has also been uncomfortable lately and I have to stop every block or two. Bending and steps and things like that are hard. This past winter time was really uncomfortable for me. Will I still be restricted after the myectomy or will I feel really great and able to exercise? Did anyone have a plastic surgeon come in so the scar wouldn't be so bad? Also, how far is the airport from the Clinic? Any words of comfort would be appreciated. I'm so consumed with this, it's all I can think of. Thanks so much
    Linda S.
    Linda S

  • #2
    Re: I'm scheduled for my myectomy July 24 at Cleveland Clini

    Dear Linda,

    Please use the search function on the board (top middle of page) to find all the myectomy posts. You will have a lot to read, but it will answer a lot of your questions.

    Here is my personal summary (I've read almost every single post on this board since its inception):

    Cleveland Clinic is fantastic. Anybody you get will be wonderful.
    You should be able to have a modified cardiac rehab to get you back into shape after surgery.
    Everyone feels horrible right after major surgery, but after you recover from that, you will feel great and your future will be brighter.
    No one has mentioned a plastic surgeon that I recall, but I think the scars are less horrible than they used to be.
    Check the Clinic's web site for travel info and others here have given practical info re: travel in their posts.

    No regrets have been lodged at this time.

    Take care and hang in there,

    S

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    • #3
      Re: I'm scheduled for my myectomy July 24 at Cleveland Clini

      Linda, You are in good hands with Cleveland so rest assured of that fact. Re your recovery---we are all a little different so nobody can tell you 100% what your experience will be like. You will likely have a few weeks of recovery time then begin to feel better. I know this is a hard choice...but I also know you are well educated and have done all your homework. Others on the board will help you through the procedure with their stories and tips...
      Go slow... read... learn..and get ready to feel better.
      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)

      Comment


      • #4
        Re: I'm scheduled for my myectomy July 24 at Cleveland Clini

        Linda,

        If you need to talk again let me know. There are always the risk of complications after major surgery. There is always some risk involved. But from your messages, I read that you are not living the life that you want and normal activities are difficult to do. I have not yet talked with anyone on this board who regretted having surgery and I do know that some of them had some complications. Just know that you are going to one of the best facilities in the country and have, IMHO, the best surgeon there.

        I will be in the Pottstown Pa area from Sunday night through Wed night. Are you close? Maybe we could get together?

        Bob
        Cleveland Myectomy Crew
        Member since November 2002

        \"Chance favors the prepared mind!\"

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        • #5
          Re: I'm scheduled for my myectomy July 24 at Cleveland Clini

          Dear Linda,

          I had a myectomy and mitral valve repair at CCF in July of 2001. Yes it is MAJOR surgery, but I have no regrets. I experienced a great improvement in quality of life post surgery. Yes, there are still some symptoms post surgery but not like before surgery when every moment was a struggle. I do remember the pre-surgery nerves. I used meditation to try to stay calm and to keep my mind focused on a positive, successful surgery. All the doctors and nurses at CCF were fantastic and rest assured that you will have the best of care both pre and post surgery. Feel free to contact me if you want to "chat". Good luck and keep a positive attitude!

          Elizabeth

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          • #6
            Re: I'm scheduled for my myectomy July 24 at Cleveland Clini

            Linda, you've had some great contact offers for reassurance, support, and info. I can certainly understand how overwelming this whole thing must be. Do your best to focus on the benefits to be gained and as Lisa said, learn all you can. If you have had a problem with scar formation in the past, let the surgeon know ahead of time. If it has not been a problem before, it probably won't be now either. There are products to reduce scarring now(creams, applications, etc.) We'll be praying for you. Keep us posted. LInda

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            • #7
              Re: I'm scheduled for my myectomy July 24 at Cleveland Clini

              Thank you all for your responses. It's nice to know that you all understand. I have another question. When I come home from the surgery, will I be able to be alone the first week, or will I need help? I live alone. My sister is going with me to Cleveland. She wants me to go to her house for a week when we get home because she thinks I'll need help and won't be able to do anything on my own. I just want to come to my own house with my things here. What do you think?
              Linda S

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              • #8
                Re: I'm scheduled for my myectomy July 24 at Cleveland Clini

                Linda - I haven't had a major heart surgery, but I have had brain surgery and an ICD implanted. I think you should have someone around for awhile. It's the simple things that you might need help with...getting dressed, taking a shower, etc.

                Good luck.
                Daughter of Father with HCM
                Diagnosed with HCM 1999.
                Full term pregnancy - Son born 11/01
                ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                Comment


                • #9
                  Re: I'm scheduled for my myectomy July 24 at Cleveland Clini

                  Linda, think seriously about staying with your sister. If things are going great early on, you can go home. It is better to be prepared and have everything there than to have to rely on someone to go find things for you if you aren't feeling like staying alone. There is a lot of adjusting to do, physically and mentally. Linda

                  Comment


                  • #10
                    Re: I'm scheduled for my myectomy July 24 at Cleveland Clini

                    I was able to everything for myself following myectomy, ie: showering, dressing, etc., but it sure was nice having someone around, just in case.
                    HOCM, Septal Myectomy 10/02 (Mayo Clinic), Medtronic ICD 10/07, TIA 10/07

                    Comment


                    • #11
                      Re: I'm scheduled for my myectomy July 24 at Cleveland Clini

                      Thanks so much for your replies and how quickly I get answers. It's so nice having you all around when I need someone.
                      Linda S.
                      Linda S

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                      • #12
                        Re: I'm scheduled for my myectomy July 24 at Cleveland Clini

                        Linda - I had a myectomy last December under Dr Lever and Dr. Lytle. The first few days Dr.Lytle and his staff will be taking care of you. Dr. Garcia regularly works with Dr. Lever and checked on me daily while I was in the hospital. He seemed to be a very likeable and competent physician and was responsive to all my questions. You will have a much better idea of your abilities after 4 or 5 days and you'll know how much help you'll need. Also please consider your emotional status and needs. You may not need help for physical daily needs but it may be important to have your sister around for emotional support. I was able to provide for all my personal daily needs but I would not want to be alone after such a major procedure. After 5 days of hospitalization and a week of laying around feeling bored I started treadmill walking and gradually increased activity over the next few weeks. You will be in very competent skillful hands. The myectomy made a dramatic improvement in the quality of my life. Earlier today I went on an 18 mile bicycle ride and came home to do some gardening this afternoon. Last summer I could do neither for more than 5 minutes before getting dizzy and fatigued. Good luck and keep us posted.

                        Comment


                        • #13
                          Re: I'm scheduled for my myectomy July 24 at Cleveland Clini

                          Dear Linda,

                          Sounds like you have a great sister! I understand wanting to be home in your own bed, but in the rare, rare, rare and unlikely event that recovery doesn't go very well, it would be better to have someone around the first few days.

                          take care and good luck!

                          S

                          Comment


                          • #14
                            Re: I'm scheduled for my myectomy July 24 at Cleveland Clini

                            Take your sister up on the offer... you will not want to do the little things..like get up and cook...if she is willing to help..LET her...also it is her way of taking some of the discomfort off of you and that will make her feel better. Remember although it is "US" having a procedure... those who love "us" feel a great deal of stress during these situations, helping "us" with the little things help them get through a tough time too!
                            Be well!
                            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)

                            Comment


                            • #15
                              Re: I'm scheduled for my myectomy July 24 at Cleveland Clini

                              Linda, I had a myectomy May 1 of this year. I agree with everyone that having somebody around. Even though I felt like I could have done ok by myseld, it was sure nice not to have to get up to cook, etc. My recovery so far has been far easier, better than I had expected. My surgery was on a Thursday and I was flying home the following Tuesday. The pain has been minimal. I was able to ween myself off the perscription pain medicaion after about a week. Tylenol extra strength for about a week after that. Yesterday was first day back to work and everything is going fine. I still have some burning around my incision, but I'm sure that will go away with time. A week and a half after my surgery I was able to walk a mile without any complication. I'm up and downstairs with ease. I can bend over or squat down and come back up with no lightheadedness whatsoever. It's great. I had the same questions, concerns you had. I have absolutely no regrets about my surgery decision. I hope this helps and that everything goes well for you. Oh, my scar isn't too bad. I did not get a plastic surgeon. It's a fairly thin line that runs about three inches from the bottom of my neck to just below my breasts. Hope this helps and good luck!!!

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