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Question/Myectomy Recovery

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  • Question/Myectomy Recovery

    [Question/Myectomy Recovery]

    Author: Lynn S. (---.dsl.dytnoh.ameritech.net)

    Date: 07-02-02 09:14

    Hello everyone,

    I'm 31 years old, was diagnosed with HOCM in April 2002 and just returned from the Cleveland Clinic and seeing Dr. Harry Lever. He told me that my HOCM was not the worst case he's seen (septal thickness 20mm and pressure gradient 50ml) but he notes that I'm quite symptomatic (short of breath easily, field of vision blacks out upon standing up after being bent over, etc). Dr. Lever has increased my Toprol intake from 100mg daily to 200mg daily and asks that if in a month I find I am still not living as I feel I should, that I am to call to schedule a myectomy. I will be giving the meds ample time to make a difference but I'm interested in hearing from those of you who have recovered from a myectomy. Should I require surgery I'm wondering what to expect in terms of recovery both from the 'big picture' viewpoint as well as the practical tips i.e how long will I need someone around the house with me. (My husband will be taking off of work to be with me during the surgery/hospital stay and subsequently to be at home for a while with my 2 year old daughter and I.)

    Thanks,

    Lynn

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    [Re: Question/Myectomy Recovery]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 07-02-02 10:21

    Dear Lynn

    Everyone is a little different, but it is major surgery. I'm sure that some of the myectomy people will post here, but you should also ask Dr. Lever what kind of recovery times you should expect to see as well.

    good luck with everything,

    Sarah

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    [Re: Question/Myectomy Recovery]

    Author: Tim S (---.lexis-nexis.com)

    Date: 07-02-02 14:17

    Lynn and I were both immensely impressed with Dr. Lever: very thorough, easy to talk with, he took as much time with us as we needed and was not in a hurry, explained things and was very encouraging. Once you talk with him, it is quite evident why he is considered to be one of the top doctors in the country regarding HCM. Additionally, the staff at Cleveland Clinic is wonderful and of course the technology is the latest and greatest. While it was a long day at the hospital of testing and evaluation, 8 hours to be precise, it was well worth the 2 month wait for the appointment.

    Interestingly, Dr. Lever does not recommend the alcohol ablation procedure for Lynn because of her age; being a fairly new procedure they do not know the longevity of benefits, etc. They haven't yet been able to follow someone say, 50 years following the procedure. Instead, Dr. Lever would like to do a septal myectomy to relieve Lynn of her symptoms. He was intent on making sure that she be able to enjoy life like any other 31 year should. When asked about the recovery, he did indicate that the procedure would include a week hospital stay and 6 week recovery at home. However, we are still curious at what point during that 6 week recovery one could expect to feel reasonably 'independent'. I am specifically interested in knowing how much time off from work I will need to be with her during her recovery.

    Thanks, Tim

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    [Re: Question/Myectomy Recovery]

    Author: Lisa Salberg (208.47.172.---)

    Date: 07-02-02 16:31

    Tim and Lynn,

    Well there is not a specific time frame I can offer regarding recovery time as everyone is different...However I can tell you that many people spend between 4 and 7 days in the hospital and then are home(out of work) about 4-6 weeks. I do know some who have gotten back to "normal" function within 2-3 weeks and some who have taken 8 weeks. We each heal at our own pace. I would say that Lynn should have someone home to help her for at least the 1st week, then she should be ok to stay around the house alone (and most likely enjoy the peace and quite!)

    Driving is an issue because of the healing, you do not want to be caught behind the wheel and unable to react to an urgent situation... waiting a good 4 weeks is well advised - sometimes as much as 6 weeks. However you can easily have someone drive you to where you need to be for a few weeks.

    I am sure many who have had surgury will respond with there stories of recovery, and I am sure you will learn a great deal from them.

    Best wishes,

    Lisa Salberg

    HCMA

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    [Re: Question/Myectomy Recovery]

    Author: Kay Ruth (---.as0.wlby.oh.voyager.net)

    Date: 07-02-02 17:45

    Hi Lynn,

    My husband Jim is just now recovering from having his myectomy done at the cleveland clinic. It has not been easy,. he has been readmitted three times since the surgery ,one of the times four days in ICU with fluid on the lungs and pericardium ,which had to be tapped.Dr Lever is great but is also very cautious, which is a good thing .As far as recovery goes you are younger than Jim so will probably heal faster but you have a two year old you won't be able to pick up for at least six weeks , that is something you need to think about and you are not going to be up to doing much of anything for a good month.Good luck to you whatever you decide. Don't let my story stop you form doing the right thing for you but just want you to realize it is not always without problems. Kay Ruth.

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    [Re: Question/Myectomy Recovery]

    Author: john jordan (---.public.svc.webtv.net)

    Date: 07-02-02 19:25

    hi kay, im glad to hear that jim is doing better. i have myectomy, valve, bypass on 7/16. many blessings for u both, john

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    [Re: Question/Myectomy Recovery]

    Author: Kay Ruth (---.as0.wlby.oh.voyager.net)

    Date: 07-02-02 21:54

    Hi John ,

    Have been thinking about your upcoming surgery, hope it goes better than Jims did .The operation went OK it was the heart after would not go into normal sinus rythym.It caused all kinds of problems,However it is much better now, six weeks tomorrow. He still is in a-fib all the time but below 90 beats per min.Jim has an appt. the week you are there,maybe I'll stop in and see you if you are still there. If I remember correctly you are having Dr. Smedira as your surgeon,He is considered to be THE best ,as one of the nurses put it, "The golden boy ". You will be in good hands,best wishes go with you for a speedy recovery.Kay

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Question/Myectomy Recovery]

    Author: Elizabeth (---.fuse.net)

    Date: 07-04-02 19:26

    Dear Lynn and Tim,

    Hi! I had my myectomy and mitral valve repair July 25 of last year so I am coming up on my one year anniversary. Dr. Lever and Dr. Smedira are my doctors at the Cleveland Clinic. I would do it all over again without question! Facts: I was 33 at the time, no children. My septal wall measured 2.5 cm and I have concentric HCM (the whole left ventrical is thickened.) My gradiant was 110 resting and the mitral valve was leaking. I could not believe how much relief I felt from the near constant dizzyness, shortness of breath, and near fainting symptoms within one day of surgery! I was in the hospital for five days, and they had me up and walking the halls on the second day. My husband was there for those five days and drove me home. (We live in Kentucky, about four hours south of Cleveland.) Hubby stayed home with me the first week but after that I was fine at home alone. Having a two-year old and being unable to lift anything over 8 pounds (a gallon of milk) would complicate things. You would need help with her. It really took four weeks before I could lift a laundry basket and six weeks before I could drive a car. (Steering requires more upper body strength than I realized.) I was working again after six weeks, but not full time. If you want to know anything else about my experience, please e-mail me. Good luck to everyone considering or preparing for this surgery. I wish everyone to have as good of an experience as I did!

    Elizabeth

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    [Re: Question/Myectomy Recovery]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-05-02 12:06

    Elizabeth - thanks for the input!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Question/Myectomy Recovery]

    Author: Judy (---.proxy.aol.com)

    Date: 07-06-02 17:52

    Lynn,

    I had a myectomy 2.5 years ago at the Cleveland Clinic. I saw Dr. Lever. He recommended the myectomy and Dr. Lytle was my surgeon. I am very happy that I chose to have the myectomy. I was 33 at the time and severely symptomatic. I had a 7 and 3 year old at home and a full-time job. I did not have any complications after the surgery other than some a-flutter. They cardioverted me twice before I left the hospital and I still went home on coumadin ( I was told that this is a common thing to happen with the surgery). Dr. Lever let me go off the coumadin about 8 weeks post-op (No problems with this since then). I left the hospital 5 days after surgery. I had to sleep sitting up for a couple of weeks and friends brought in meals for about a week. After that time I could take care of the basic things at home, but I still sent my 3 year old to daycare. I had my surgery the week of Thanksgiving and cooked the 'family' dinner on Christmas Day. It wore me out, but I was so excited about how great I was feeling that it didn't matter.

    There are plenty of other things that I could tell you, but it would take me forever to type it all. If you have specific questions, please ask and I'll be glad to share my experiences. The hardest thing for me about the surgery was the worry about leaving my children. You are certainly doing the right things by seeking out very qualified hospitals and doctors and also by talking with others who have been through this sort of thing. Talking with others that have had the surgery really helped me.

    Judy

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Question/Myectomy Recovery]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-07-02 15:29

    I thought you would give us your thoughts on this one Judy...Thanks!

    lisa
    NOTE: This is a post from the previous forum message board.

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