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newhocmpatient1

HYPERTROPHIC OBSTRUCTIVE CARDIOMYOPATHY

I am a newly diagnosed patient. I'm at the second opinon phase of a recommendation for a myectomy. After that I have to clear insurance and then send everything to Mayo in Minnesota. Has anyone had this operation at Mayo and can you tell me your experience, including recovery after discharge? Thanks.

kyles

Posted by @kyles, Sep 23, 2011

I was diagnosed by my local card in GA this past April. I tried a couple of Meds that made me feel much worse. We (my doctor, wife and I) desided Mayo was the place to go for the surgery. It was terrific. I arrived on Tuesday July 19th, had testing and met with doctors Wed and Thur. I had my surgery Fri morning (open heart Septal Myectomy). Was released from the hospital Monday the 25th and flew home the next day.My chest hurt for a couple of weeks but I was only taking Tylonyl for pain from the Sunday after surgergy on. I hope this helps. I will check back and see if you have anymore questions.

newhocmpatient1

Posted by @newhocmpatient1, Sep 23, 2011

Kyle- You have no idea how helpful this response is. I was wondering about the flying part especially. Wonderful. Did you have to go to any rehab after you got home, or was it just recovery and some visits to the GA cardiologist?

kyles

Posted by @kyles, Sep 23, 2011

I am 32 years old so I was told by Dr Shiaff's assistant that I would not need rehab. I think that part depends on your personal recovery. I had a Eco 4 weeks after my surgery and I have a card appiontment next week. Recovery went very smoothly. I returned to work last week.

newhocmpatient1

Posted by @newhocmpatient1, Sep 23, 2011

I'm 65, also known as twice your age (smile), so things may be a little different. Still your information was most helpful. Thanks Kyle.

ljr

Posted by @ljr, Dec 19, 2011

You can also check out 4hcma.org it's all about HCM. With a forum where several folks have had this same operation. It's a great site for folks living and coping with HCM. Good luck with your surgery!

newhocmpatient1

Posted by @newhocmpatient1, Dec 2, 2011

Kyle, guess what? I fly to Mayo on December 18, have tests on the 19-20th and surgery isn't until December 28th. Same operation for me. I'm older, 65, and gave myself longer to recuperate. We shall see....

kyles

Posted by @kyles, Dec 5, 2011

Good luck I hope all goes well. When we went My wife and I) we stayed at the Spring Hill Suites that is located directly accross the street from St. Mary's hospital. A good restaurant is the Canadian Honker right down the road. You wil be in terrific hands and will feel a huge differance. Tell all the doctors I said hello. Please let me know how everything goes.

kyles

Posted by @kyles, Mar 15, 2012

I was just wondering how everything went?

newhocmpatient1

Posted by @newhocmpatient1, Mar 16, 2012

Had the surgery on December 28th in Rochester Mayo Clinic. Mayo was great. I am fully recovered an on no (as in zero) heart meds. I still do cardiac rehab and am having a ball with my new life. Things couldn't be better. I am so impressed that you took time to ask. It meant a lot to me. Best wishes.

newhocmpatient1

Posted by @newhocmpatient1, Mar 16, 2012

Also loved Spring Hill Suites and especially during pre surgery, the Canadian Honkers. What great recommendations.

kyles

Posted by @kyles, Mar 16, 2012

I am so glad to hear that everything went so well. Mayo is a pretty amazing place. I could go for some of the fried cheese things from the Canadian Honker. Not so heart friendly. Take care.

Posted by Anonymous-5fb05ef9, Dec 3, 2011

Hi this is fishing lady , I had my sugrey at the end of april. they were vert good with me and always there when i called for the nurse they were there with in 5min i like all the people there. when i came out of sugrey i went into icu overnight. don't be supprised that you have a tube down your mouth it helps you breath. They helped me get up out of bed and took a shower they are all very nice. you will like all the nurses. I had a realy good experience with them and they realy explained everything to me.

newhocmpatient1

Posted by @newhocmpatient1, Dec 4, 2011

Thanks so much "fishing lady". Everyone who responds to this gives me more confidence of the unknown ahead of me. These stories help me more than you could ever know.

newhocmpatient1

Posted by @newhocmpatient1, Dec 4, 2011

Question: How long was your hospital stay? I'm 65 years old, by the way. And when did you feel like you might be able to fly home (for me that's to Virginia)

fishinglady

Posted by @fishinglady, Dec 19, 2011

I had sugrey on a friday and and left tuesday. my husband drove home.

fishinglady

Posted by @fishinglady, Dec 3, 2011

Hi. my doctor found mine doing a regular check up . I was treated for 4 years before I had the sugrey. The doctors are very nice and understanding. all of the nurses are realy good with you. You do easy excrise before you go to rehab its a month before you go to rehab.

fishinglady

Posted by @fishinglady, Aug 5, 2012

Hope your sugrey went well for you and you got home alright. It is different I feel much better now. Its been over a year now.

newhocmpatient1

Posted by @newhocmpatient1, Aug 5, 2012

My surgery went really well. The hardest part of the recovery was flying home. In the Rochester airport, the TSA knew I had open heart surgery, because Mayo wrote them a letter saying it was okay for me to fly AND I flew in jammies and slippers. They made me lift my hands over my head in the circular air thingy and that hurt. Other than a slow but steady recovery, I felt great within a month post surgery and today I feel like I used to feel as a teenager. Full of energy, never dizzy, weak or feeling faint. The surgery was a huge success for me.

For anyone thinking about it, one problem I had at Mayo was I lost my taste for food. They said that is not uncommon. I ate, but I couldn't taste anything. At home I started to lose weight too fast in the first couple of weeks. So, I called them. They were terrific and recommended Ensure and that's what I did. Then we knew I had the nutrition to help me heal. Within weeks, I started tasting things slowly and suddenly, that whole thing was gone, and I was back to eating. I keep Ensure (I think there is a Boost too) in the frig in case I need something extra (which never really happens). This surgery gave me back my life.

fishinglady

Posted by @fishinglady, Aug 11, 2012

It feels like you a have a new lease on life. I am going on over a year now and feel geat. its like you said you have alot more energy to do things.

fishinglady

Posted by @fishinglady, Dec 31, 2012

Well i am glad you went. makes a big difference now. I know it does me. been almost 2 years now,

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