Am I really ready for this

Posted by sheim @sheim, Apr 11, 2019

I'm starting to wonder if my symptoms are REALLY as bad as my doctor seems to think. Mayo has me scheduled for a Septal myectomy the end of June and I'm starting to think that's not enough time to get ready. Am I really IN NEED of this or am I just getting cold feet? From what I've read of patients who have had a Septal myectomy breathing was pretty bad before the surgery. At this point there is very little I can't do but the medicine I have to take (Disopyramide) is bothersome to me. If you had the surgery how bad were your palpatations and breathing issues? Was upper back pain an issue with you before surgery? MAYBE I'm over reacting in thinking Dr's just want to do surgery...even if it means sending you away for it. Maybe I just need encouragment? lol

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

You sound like my husband, he had septal myectomy last October and thought maybe he wasn’t that bad 😱 he was quite fit and healthy except for symptoms (lol). He was, in my opinion, quite compromised before surgery episodes of syncope etc he was also taking disopyramide and suffered side effects 😱 since the surgery he’s been symptom free still has the hypertrophic cardiomyopathy but no obstruction, he’s amazing, soooo go ahead have the surgery. Positive thoughts coming your way.

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Thank you rrowner2. I don't have any syncope ...unless it's what I call episodes of very low blood pressure..lasts several seconds is all . My understanding is even with surgery we still have hypertrophic cardiomyopathy so if it's only the symptoms that go away at what point are the symptoms "bad enough"? Mayo already has all the reports and by now have the DVD's my dr sent. Once they see everything....will I STILL need to have the tests repeated? I guess I SHOULD be asking did your husband have to repeat all the tests?

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@sheim

Thank you rrowner2. I don't have any syncope ...unless it's what I call episodes of very low blood pressure..lasts several seconds is all . My understanding is even with surgery we still have hypertrophic cardiomyopathy so if it's only the symptoms that go away at what point are the symptoms "bad enough"? Mayo already has all the reports and by now have the DVD's my dr sent. Once they see everything....will I STILL need to have the tests repeated? I guess I SHOULD be asking did your husband have to repeat all the tests?

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The symptoms will get progressively worse, my husband was on max dose of meds still with symptoms. He was first diagnosed with HCM at 43 he’s now 74 so did really well until last March.
My husband had all of the tests done at Mayo, he hadn’t had catheterization done for years, we met with a cardiologist who specializes in HCM and after looking at his echo he advised getting the surgery. We also discussed ablation, but after seeing how bad the obstruction was decided that wouldn’t have worked as well as the surgery.
I was extremely impressed with Mayo, everything flowed no hiccups with appointments or the surgery or postop care.

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I am wondering the same thing. Am I really ready for this. My myectomy is scheduled for 2 weeks from today, on June 3. I know I am getting cold feet the closer it gets. Days I feel fairly well other days I can only lay on the couch. Good Luck to you! I beleive you will be in good hands at Mayo.

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@reenj62

I am wondering the same thing. Am I really ready for this. My myectomy is scheduled for 2 weeks from today, on June 3. I know I am getting cold feet the closer it gets. Days I feel fairly well other days I can only lay on the couch. Good Luck to you! I beleive you will be in good hands at Mayo.

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I'm going ahead with it since everything is planned and I really "SORT OF" wonder if they will say in the end..."NAWW you really don't need it now" Dr here says that won't happen but one never knows. It's crazy but even at 70 years old, I think my main concern is that dang cut down my chest. I don't wear low cut tops but just how HIGH cut will I now need to wear. I know I sound so vain and I really am not; probably just finding things to worry about. 🙂

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I told myself for a few years that I was just fine. I was short of breath climbing stairs because I needed to exercise more and lose some weight. I joined a community center gym and started walking on their track. I noticed that every time I walked more than a lap my jaw would start to hurt. I looked for answers on the web and in fitness magazines. I talked to a coach at the gym and they told me to drink more water. I drank water and kept on walking. I wasn't big on doctors so I didn't go much. My entire life I had heard from them, "Did you anyone tell you you have a murmur? It's nothing to worry about." I stopped doing a lot of things that I love to do, but it was just one here or there and I chalked it up to being busy and not having time to hike or golf.

I said before that I don't like doctors and I don't go to them, typical guy. I woke up one day and looked in the mirror to see a guy with butter yellow skin and lemony eyes staring back at me. I knew I had to go and see a the doctor. She took one look at me and sent me for tests. An hour later she told me that I needed to have my gall bladder out and sent me to the hospital. The hospitalist agreed that I needed the surgery but informed me that nothing would happen without the approval of a cardiologist and I was admitted.

Several days and tests later I was antsy to go home and get back to work. I asked the cardiologist to approve the surgery and/or send me home. It was then that she asked me if I had ever heard my own heartbeat. She placed her stethiscope on me and had me listen to her heart. It sounded just as expected, steady, strong and regular. She then put it on my chest and wow. My own heart sounded like a bag of sand being dragged across the floor. SHHHHHH Boom, SHHHHHHH Boom. She said she would not send me home because she did not believe that if I left I would ever make it back.

I will cut the story off here, but remember I waited a long time. I denied that I had an issue. I barely made it in for help. Please do not be like me. Don't deny yourself the chance to make things right and risk missing that last chance. Doctors Ommen and Schaff are incredible people with schedules that are packed. People come from all over the world to be care for by these brilliant men and their teams of doctors. They don't operate for fun or because they need the billing. They operate to save lives. I am truly thankful that my life intersected with theirs for a short time.

By the way, the incision in my chest never hurt. I felt at least 100% better every day.

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