HCM-ers: Introduce yourself or just say hi

Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

I invite you to follow the group. Simply click the follow icon image-f6386d0357e2 on the group landing page

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.

Why not start by introducing yourself here?

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

@karukgirl

Jeanne, It's no wonder your head is spinning! That is quite a lot of information to take in all at once and be scheduled so quickly. You will realize if you keep reading on here, that the one thing we all seem to have in common after the surgery is how wonderful the care is at the Mayo. So rest easy knowing this is part is true. As for getting ready? It's the strangest trip to pack for! I asked for advice on here before my first surgery (cancelled due to Covid pandemic) and then had several more months to prepare for second surgery. The real one! I would say for me, I was sort of in shock a little at how quickly things were moving since I was newly diagnosed at Mayo in November, and scheduled for myectomy in March. Then when the world fell apart, I had four more months to agonize over it! By the time the day of surgery arrived I felt calm and focused. But looking back, it also gave me more time to agonize! It may be better in some ways to get this done quickly. Keep reading on here for tips and advice. There is plenty of it, and all from experience. A couple of my tips for women: A 'lounge' bra or soft sports bra you can step into and pull up. A pair of shoes you can slip on without bending over. I went to TJMaxx and got three soft bras that I adored thru recovery. Some also say wear a shirt you can button as opposed to pulling over your head. For me, that was not a problem and I wore loose fitting t-shirts. Also pants you can easily pull up, like sweat pants or joggers. Makes it so much easier to dress the first few weeks. I also got a 10-pack of wash clothes from Ross. You will need a fresh one every day for several weeks while your sternum heals. Feel free to reach out to any of us, and I'll pray for a perfect outcome for you. Best of everything!

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Thank you so much @karukgirl! I, first of all, appreciate the validation about the head spinning - I think I needed that. I've taken notes of the suggestions, and will evaluate. Any more tips you can think of will be appreciated. When was your surgery? It sounds like May(ish) - was it last year or this?

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I underwent septal myectomy at Mayo Rochester three and a half weeks ago. The experience was excellent, pain was not an issue, and I am walking 15 minutes three times a day. I am surprised that my stamina is slow to recover, I am taking a lot of naps, and I am more tired than I thought I would be. Is some of the fatigue the heart muscle recovering and “remodeling?”

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Hi I’m Beth,
I’m 55 and was diagnosed with HOCM last year. My symptoms went unnoticed as I attributed them to asthma and medication side effects.

I will be having a Septal Myectomy @ Mayo on April 18th.

Looking forward to learning from you all.

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@bethsu66

Hi I’m Beth,
I’m 55 and was diagnosed with HOCM last year. My symptoms went unnoticed as I attributed them to asthma and medication side effects.

I will be having a Septal Myectomy @ Mayo on April 18th.

Looking forward to learning from you all.

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Wishing you well tomorrow, Beth!

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@bethsu66

Hi I’m Beth,
I’m 55 and was diagnosed with HOCM last year. My symptoms went unnoticed as I attributed them to asthma and medication side effects.

I will be having a Septal Myectomy @ Mayo on April 18th.

Looking forward to learning from you all.

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Best wishes. Mine was on February 10 and I had a very good experience. Great team. Very caring. At five weeks out, I am doing OK and starting my cardiac rehab.

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New to the group, mine is 3.31, will be in on 3.28 to start testing.
Any suggestions? - Only wife will be with me / she'll be at hotel nearby / where to eat / what to do in MN / what should I expect from experience / Recovery time? (double-bypass and HOCM).

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@servant1966

New to the group, mine is 3.31, will be in on 3.28 to start testing.
Any suggestions? - Only wife will be with me / she'll be at hotel nearby / where to eat / what to do in MN / what should I expect from experience / Recovery time? (double-bypass and HOCM).

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Welcome! You have found a wonderful place to share your experience, gain information, and learn from others who have walked your same path. Poke around this sight and you will learn many things about what you asked for. Places to stay. Places to eat, etc. Every single person is unique and therefore each one of us has a different recovery and different experience from this huge surgery. One thing we all seem to have in common is the care given by every employee of the Mayo Clinic...from housekeeping to surgeon, is the finest in the land. Dare I say the world. You will be in good hands. If you have time, read some of what we fellow HOCM folks posted before and after. I wrote a post about where we stayed. *Courtyard by Marriot. Directly across the street from St. Mary entrance. Could not have been more convenient. From there, free shuttles to the downtown Mayo Clinic/Gonda Bldg. Where we ate: *Chester's downtown for lunch/dinner. And the walking distance to lots of fast food and the fresh food market for healthy fare and wine! As for what to do? You will find that your day of surgery is suddenly here, and from that point on the days pass quickly but the nights are long. Thank goodness for the nurses. They are gifts from God. Wishing you all the best. It's not your typical surgery, but the Mayo Clinic is not your typical hospital. They are world class and it makes it easy to put your life in their hands. Keep us posted, and again best wishes and prayers.

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I had mine on October 4 2021 and it was a good experience. I was lucky my brother in law lives in Rochester five minutes away from the hospital and had a extra vehicle to use so that helped a lot. The only problem was I went into afib 4 days after surgery so I had to stay three more days. Recovery wasn’t bad except for sleep but it’s good now. I work running heavy equipment and I went back to work a month and a half after surgery and I wish now I would have waited another month. Cause climbing up and down ladders was and bouncing was tough on the cut

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@karukgirl

Welcome! You have found a wonderful place to share your experience, gain information, and learn from others who have walked your same path. Poke around this sight and you will learn many things about what you asked for. Places to stay. Places to eat, etc. Every single person is unique and therefore each one of us has a different recovery and different experience from this huge surgery. One thing we all seem to have in common is the care given by every employee of the Mayo Clinic...from housekeeping to surgeon, is the finest in the land. Dare I say the world. You will be in good hands. If you have time, read some of what we fellow HOCM folks posted before and after. I wrote a post about where we stayed. *Courtyard by Marriot. Directly across the street from St. Mary entrance. Could not have been more convenient. From there, free shuttles to the downtown Mayo Clinic/Gonda Bldg. Where we ate: *Chester's downtown for lunch/dinner. And the walking distance to lots of fast food and the fresh food market for healthy fare and wine! As for what to do? You will find that your day of surgery is suddenly here, and from that point on the days pass quickly but the nights are long. Thank goodness for the nurses. They are gifts from God. Wishing you all the best. It's not your typical surgery, but the Mayo Clinic is not your typical hospital. They are world class and it makes it easy to put your life in their hands. Keep us posted, and again best wishes and prayers.

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Thank you Karukgirl, that is good info.
I am 55.5, in relatively good shape (180 lbs) and ready to get this over with so I can get into recovery. I'm not good at it but I like to do P90X and I Pastor in MI so I'm looking forward to getting back in shape and in the pulpit. With 2 bypasses & the septal myopathy it looks like its gonna be a while.
Please keep in touch with any info you think will be helpful to my wife & I.

dg

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Hey everyone. I had a stress and echo this week. I’m also wearing a 30 day heart monitor. I have experienced chest pains on exertion. I have a family history of sudden cardiac death at younger ages. I lost a first cousin at age 42 to it. Unfortunately, many of my relatives died before having cardiac tests. Mom and Dad had heart attacks in early their 70s and Dad had 5 way bypass. Both are deceased now. My online tests results show Moderate hypokinesis in basal anteroseptal segment , Small left ventrical, Abnormal left ventrical filling, and Ejection Fraction 75%. My appointment isn’t until May 13th. By then the holster monitor will be available to my cardiologist. What questions should I ask? I’ve never had a heart cath but would like better confirmation of what’s going one. The online results say I have diastolic heart failure., stage 1. I’m 62 years old and female. Thank you.

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