Diagnosed with HOCM last year. May be time for surgery

I am a 63-year old female diagnosed with hypertrophic obstructive cardiomyopathy. I was diagnosed in 2008 but have always had trouble hiking uphill. My heart pounds so hard the movement is visible under my shirt so I wait, usually several minutes, until the pounding subsides. I am left in the dust while my friends proceed, which I insist they do. I love hiking with friends but have even never managed a 10er vs. the 14ers they enjoy. I am 20 BMI, so not overweight. Except that I used to drink several glasses of wine most days (I stopped a year ago), I take excellent care of myself. No smoking, low fat, red meat free diet, tons of fruits and veges, good sleep. Even so I am treated for low thyroid, depression, and anxiety (family maladies). Osteoporosis also runs throughout my family and I have not been spared. Due to my mood disorder and osteoporosis I need to exercise daily. I love to lift weights (just 40 to 80 pounds), bicycle, kayak, and walk at least a mile outside daily or use a treadmill (rarely beyond 3 speed). Since I last saw my cardiologist a week ago, I've been advised to give up all of the above except for slow walking. I hate to whine so much but life without exercise is already bringing me down. I don't know if I'll qualify (my symptoms aren't bad: no fainting, chest pain, shortness of breath, etc.), but I would love to regain the ability to work out (bike, hike, lift a little, walk daily, etc.). I have test appointments at Mayo Clinic in Minnesota late April and am praying for a septal myoectomy, which is the surgery my hometown cardiologist believes I need in order to be active again. Waiting
is tough, but it was the first appt. I could get. Anyone out there think I'll qualify for myoectomy?

Hi @quinn, welcome to Connect.
My apologies for the delayed response. Somehow your message slipped by me. I have moved your message to this thread to connect you with others asking similar questions and people how have been there. On this thread you'll meet @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @lepadelford @barbararickard and others. They are much more qualified to answer your questions than I am.

Hi @quinn -

Welcome to the club that you didn't want to join! I also have HCM. I had a myectomy at Mayo Clinic almost 10 years ago now, and it was the best thing I ever did for myself.

Actually I wrote a blog about my experiences there, if you would like to read it:

http://www.cynthiassummeradventure.blogspot.com

In order to qualify for a myectomy, you must be obstructed. You did not say whether you are or not. Most people who have myectomy have a pressure gradient of more than 30 mm/HG. In my own case, mine was about 120 mm/HG.

Usually, also they will try medications first to see if they relieve the symptoms. The surgery is primarily used to relieve symptoms -- they don't totally fix the problem: you will still be left with a heart that won't relax properly.

Let us know if you have any more specific questions, and I will try to help answer them. You will find the docs at Mayo Clinic the best in the world. Very glad that you are on your way there.

Hello, @quinn-yes, indeed, welcome to the club no one wants to join. HCM runs rampant in my family with three confirmed cases and I believe my mother died of it. I was diagnosed in 2010 after a cardiac arrest (was told for years I did not have it) I also have always had trouble going uphill or taking stairs. You are going to the right place for that second opinion. It is critical that we be treated at high volume specialty centers such as Mayo. They know what they are doing. This disease is difficult to treat as it behaves differently in each person. A myectomy is recommended when someone is obstructed. I do not have the obstructed form of the disease, so we manage with medication and I have an internal cardiac defibrulator (ICD) Usually lifting weights is not recommended fro people with HCM unless it is 10 lbs or less. I can't lift any though I used to. I will be 62 later this year. Oh, welcome!!

This is a very informative podcast I stumbled across that may give you some good info. from several HCM experts.
http://www.myokardia.com/patientsPOD.php

Hi HCM-ers,
Just jumping in for a check-in. Would love to get an update from your corner of the country (world).

Out my window I see the apricot tree getting ready to blossom. I think I can safely put away the mittens finally. The weather has been encouraging and making it easier to get out and work out. I've been sticking to my regimen and exercising 4 times a week and daily walking.

What's your update?

I was 54 when I had a cardiac septal myectomy At Mayo Minnesota. I was scared, but I knew it was my only chance. The surgery was a big success.

Hi all,
The conversation around Hypertrophic Cardiomyopathy (HCM) in this discussion and other related discussions has grown to such a point that we, the community moderators, thought that it was time to open a new group dedicated to Hypertrophic Cardiomyopathy (HCM) https://connect.mayoclinic.org/group/hypertrophic-cardiomyopathy-hcm/

I invite you to follow the group and introduce yourself here: http://mayocl.in/2errn7m

Hi Barbara , My husband has HOCM and now mitral valve 3+insuffiecy .We are planing to have a surgery in may .did you wait couple of months for the surgery after you diagnosed with Mitral problem? Did they repair the valve or is it a new one ?
how are you doing after the surgery ?

Hi Ipadelford , My husband has HOCM and now mitral valve 3+insuffiecy .We are planing to have a surgery in may .did you wait couple of months for the surgery after you diagnosed with Mitral problem? Did you get a new valve or it was repaired?
how are you doing after the surgery ?