Freaking out a bit - Upcoming surgery!

Posted by badmac @badmac, Wed, May 29 3:36pm

I was officially diagnosed with HCM about 3 years ago, however i have been feeling the symptoms since childhood. I always felt something was wrong, and been to the cardiologist many times and they didn’t find anything until about 8 years ago, a very pronounced murmur appeared and they were looking into what was causing it. They didn’t diagnose me then, however they wanted to keep an eye on the murmur, so every year i get an Echo. 3 years ago they found the HCM, and this year it is now considered obstructed, which i believe is HOCM? My cardiologist said i will need a myectomy. This next monday i am headed to the cath lab for them to take a closer look. Not sure what happens next. I’m freaking out. Been reading other posts, trying to learn more about the surgery and what to expect. Sounds like this is an open heart procedure? I think that scares me most. I am 51 years old. Over the last couple of years i have really slowed down, and get fatigued quickly, chest pain, strange heart beats and sensations. And over the last few years i have been dealing with severe anxieties because of this. I am on a few meds for the HCM as well as other meds for diabetes. Is this an open heart procedure? Thankfully i live in the phoenix area, so there is a mayo clinic here. A few years ago, i never heard of HCM. Up until a week ago, i didn’t know they could surgically treat it. there seems to be lots of peoples stories here with some great information. Some of it is scary and most seems to be positive. Not sure why I am posting, but when i describe this to my family, they don’t seem to understand this is kinda serious. I guess i just needed to relate to someone who understand this.

Liked by reenj62

Great answer, my husbands cardiologist here in San Diego actually recommended Rochester.

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Hi @badmac,

If you’d like more information or would like to make an appointment at Mayo Clinic, please call one of our appointment offices – you can also request an appointment online – and representatives will ask a few questions to help direct you to the best specialist.
The contact information for all 3 Mayo Clinic locations (Minnesota, Arizona, Florida) can be found here: http://mayocl.in/1mtmR63

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Hi @badmac,

I can imagine you must have so many questions about undergoing surgery, and thought you might be interested in reading these Connect discussions where members ( @ronaldpetrovich @dp52350) have shared some great insights and experiences:

– Septal Myectomy & Mitral Valve Repair Surgery on Jan 30th https://connect.mayoclinic.org/discussion/surgery-on-jan-30th/
– Notes from presentation by Dr. Joe Dearani re: Myectomy https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/?utm_campaign=search
– HCM CARE tips – What do you wish you had known for after surgery? https://connect.mayoclinic.org/discussion/hcm-care-tips-what-do-you-wish-you-had-known-for-after-surgery/

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@sheim I would like to go to MN however my insurance will play a big part in where I get the surgery. They want me to get it local (as per a conversation I had with them). They did say that if no one local did the surgery then they might let me travel to MN to get it. So I have to check local first.

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Hi Badmac, I don’t know how old you are but if you are over 65 Medicare pays for surgery no matter where you go. You will be responsible for travel etc

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Hi. I am also 51 years old. I had this surgery on 1/4/2013. Like you, I had known that something was up for a long time. I had been slowing down and being less active for a couple of years and coughing all the time. Walking up one flight of stairs to my office left me wishing for a nap. In October of 2012 I started having issues with severe shortness of breath and falling down. I went to see my cardiologist at the end of October and collapsed in her office. I had an defibrillator implanted on 12/5/2012 and it saved my life on 12/7/2012. I went to Mayo on New Years and met Dr. Ommen on 1/2/2013. I met Dr. Schaff, a brilliant surgeon, on 1/4/2013. He performed the surgery, and yes, it is an open heart procedure. He and his fellows were with me every step of the way and gave me confidence that everything would be OK.

I have to say that within a couple of days after surgery I began to feel better. I returned home to Indiana a week later and started Cardiac Rehab. I had some pains along the way, but every time I went to rehab I felt better and had more endurance. Today I play disc golf nearly every day and walk at least three miles each day. I hike and backpack with my sons. I have a great relationship with my wife. These are things I would not have experienced without the work of my cardiologist in Indiana, Drs. Ommen and Schaff and the entire staff at Mayo.

You have probably had your surgery by now and are on the mend. Follow every direction you are given, get into cardiac rehab and stick with it. You will be enjoying a great life and will get a chuckle when people tell you to slow down as you walk to meetings, lunch or wherever you want to go.

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@timdines

Hi. I am also 51 years old. I had this surgery on 1/4/2013. Like you, I had known that something was up for a long time. I had been slowing down and being less active for a couple of years and coughing all the time. Walking up one flight of stairs to my office left me wishing for a nap. In October of 2012 I started having issues with severe shortness of breath and falling down. I went to see my cardiologist at the end of October and collapsed in her office. I had an defibrillator implanted on 12/5/2012 and it saved my life on 12/7/2012. I went to Mayo on New Years and met Dr. Ommen on 1/2/2013. I met Dr. Schaff, a brilliant surgeon, on 1/4/2013. He performed the surgery, and yes, it is an open heart procedure. He and his fellows were with me every step of the way and gave me confidence that everything would be OK.

I have to say that within a couple of days after surgery I began to feel better. I returned home to Indiana a week later and started Cardiac Rehab. I had some pains along the way, but every time I went to rehab I felt better and had more endurance. Today I play disc golf nearly every day and walk at least three miles each day. I hike and backpack with my sons. I have a great relationship with my wife. These are things I would not have experienced without the work of my cardiologist in Indiana, Drs. Ommen and Schaff and the entire staff at Mayo.

You have probably had your surgery by now and are on the mend. Follow every direction you are given, get into cardiac rehab and stick with it. You will be enjoying a great life and will get a chuckle when people tell you to slow down as you walk to meetings, lunch or wherever you want to go.

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Fantastic, my husband had his myectomy October last year, he had a complete heart block in March last year and had a paces/ defibrillator implanted which saved his life but over the next few months he was on max meds and still having symptoms as you were.
He was diagnosed with HCM 30 years ago

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I am trying to figure out how to get my insurance to allow me to go to MN for this surgery.

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My surgery is scheduled for 10/15/19 with Dr. Schaff. I will be traveling by myself, a family member will fly up to be there for the surgery and a couple days after. However I will be traveling home by myself. I have read several other threads and am trying to be positive. However I gotta say that I am bit scared. I am hoping i will feel better when its all done and i am recovered. I am obese and am hoping by feeling better, I will have more energy to get up and get some exercise. I will say my insurance has been great to work with. Much easier than expected. Still have some things to figure out. Once i get home, my father will be with me for a couple of months to help out. I bought a lift chair I plan on using for the first few weeks. I have stocked up on all sorts of items for easy meals etc. Any other advise or things i might need to think about for recovery?

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@badmac

My surgery is scheduled for 10/15/19 with Dr. Schaff. I will be traveling by myself, a family member will fly up to be there for the surgery and a couple days after. However I will be traveling home by myself. I have read several other threads and am trying to be positive. However I gotta say that I am bit scared. I am hoping i will feel better when its all done and i am recovered. I am obese and am hoping by feeling better, I will have more energy to get up and get some exercise. I will say my insurance has been great to work with. Much easier than expected. Still have some things to figure out. Once i get home, my father will be with me for a couple of months to help out. I bought a lift chair I plan on using for the first few weeks. I have stocked up on all sorts of items for easy meals etc. Any other advise or things i might need to think about for recovery?

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My husband's surgery is scheduled for 10/17/19 with Dr. Schaff, so we'll be up there during the same time. I pray that your surgery goes well as does my husband's! I, too, am pretty full of anxiety as we get closer, but I do believe that you and my husband are in the best possible hands!

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With Dr Schaff as your surgeon, you can KNOW you are in good hands. He did my surgery June 27th and I've been BETTER than back to normal for over a month now. I went back to the gym the first of Sept and other than a little back pain I'd never know I had surgery or even needed it. Good luck to you both

Liked by sarah_e

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@badmac

My surgery is scheduled for 10/15/19 with Dr. Schaff. I will be traveling by myself, a family member will fly up to be there for the surgery and a couple days after. However I will be traveling home by myself. I have read several other threads and am trying to be positive. However I gotta say that I am bit scared. I am hoping i will feel better when its all done and i am recovered. I am obese and am hoping by feeling better, I will have more energy to get up and get some exercise. I will say my insurance has been great to work with. Much easier than expected. Still have some things to figure out. Once i get home, my father will be with me for a couple of months to help out. I bought a lift chair I plan on using for the first few weeks. I have stocked up on all sorts of items for easy meals etc. Any other advise or things i might need to think about for recovery?

Jump to this post

You were smart to get a lift chair. While my recovery was remarkable, getting in and out of bed was in major pain. My husband would have to left me to a sitting position. The HARDEST part of the whole recovery (for ME) was remembering NOT to use my arms or hands to get up. We have no idea how much we use our arms until we're told NOT to. While I'm 70 years old, I spent the last couple of years walking and working out which I"m sure was why recovered so well.

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I had the septal myectomy about 4 1/2 weeks ago. was in the hospital for 7 days. when I got home, I had lots of pain in the chest incision area and bone pain. I sat and slept in a lift char for about a week, then I was able to get into my own bed the next week. had to lay on my back only for the next couple of weeks. right at the 4th week I stopped taking Tylenol and noticed the scars, wounds and bone have significant healing, every day for the last couple weeks I have noticeably felt better every day. now I have little pain. If I move the wrong way or do something strenuous I get some pain. in 2 days it will be the 5 week mark since my surgery. And I am actually feeling really good. I start my cardiac rehab in 2 days. I will admit I seem to have some muscle pain in my back shoulder blade areas when I stretch. Also for the first few weeks after surgery, I was very short of breath. somewhere around 3 weeks that went away and my breathing got better and now I feel almost back to normal. I have also noticed the symptoms of the HCM are mostly gone now. so the operation was a success. It is hard to describe, but I feel really good and have motivation to do things. There were times in the first week after the surgery I was wondering if it would be worth it because I felt so bad. but now I would say, it was very much worth it. I am feeling so good at this point and expect to feel a bit better in the next couple of weeks. I am pleased with the outcome of the surgery. I traveled from Phoenix Az to Rochester MN. I gotta say the the Mayo clinic and St. Mary's are the best! I am so impressed with the care they provided. I have never experiences anything like it. Will admit, I was scared. But they took good care of me. When I met with Dr Schaff, he said there was about a 1% risk. That did make me feel better. I am planning to go back to work on 12/2. I could probably go back now and be fine. But have to do a couple of weeks of cardiac rehab first.

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