Diagnosed with HOCM last year. May be time for surgery

Posted by barbararickard @barbararickard, Feb 9, 2016

Hello, I was diagnosed with HOCM last year. I have been told I may be approaching the time for surgery. The last MRI showed a 10% worsening in valve pressure. I am in the process of getting a second opinion. I have pain and dizziness and breathing is hard. I am scared. I worry if I have to have surgery something will happen. I know I shouldn’t but I do. I’ve had problems with my heart since I was a kid I am 54 now. I feel alone with this problem. I put on a brave face for my husband and kids but alone I almost feel defeated. I wonder if there is anybody out there that had this heart disease and if so are they ok and how did it go? Thank you all for reading this and I hope everyone who is sick to get well soon.

Liked by debcrawford

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?

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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.

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@colleenyoung

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.

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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.

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@quinn

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?

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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!!

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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

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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?

Liked by wandikarnadi

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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.

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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

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@lepadelford

Barbara,

You are not alone. I am a 44 year old female that was diagnosed with HOCM in November of 2010 and had open heart surgery to replace my mitral valve and a myectomy. I was referred to Stanford Cardiology Clinics as they specialize in this disease. That is where my cardiologist is located as well as the surgeon who did my surgery. I have had such great care and the staff is amazing. If you ever feel alone and want to talk about this disease or just about life in general I would like to be your friend and say reach out to me.

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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 ?

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@lepadelford

Barbara,

You are not alone. I am a 44 year old female that was diagnosed with HOCM in November of 2010 and had open heart surgery to replace my mitral valve and a myectomy. I was referred to Stanford Cardiology Clinics as they specialize in this disease. That is where my cardiologist is located as well as the surgeon who did my surgery. I have had such great care and the staff is amazing. If you ever feel alone and want to talk about this disease or just about life in general I would like to be your friend and say reach out to me.

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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 ?

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Hi – my husband was diagnosed at 67 with HOCM. He has always been an active, healthy fit person but out on our property one day, he felt pressure in his chest going into his arms. Never one to go to the doctor, except for the occasional cold or bug, it turned out he had a serious problem. Initial testing was done pretty quickly with a referral to Mayo here in Phoenix. Alarmingly, the referral was to the heart transplant department. More tests and a seemingly long wait resulted in the decision that he was not a candidate for a transplant at this time. There was obvious concern about his lack of ongoing medical care over the years. After the implanting of an ICD, he was referred to Mayo in Rochester for a septal myectomy, which he had June 2016. This was 6 months after initial diagnosis. Even though we live within 60 miles of Mayo here in the Phoenix area, they do not do this surgery here. Mayo recognizes this surgery must be done by very experienced doctors. I can’t encourage you enough to go to Mayo if you eventually need surgery.

My husband’s surgery went very well. I will be honest and include that he did have complications that turned a 5 day hospitalization into 12 but those complications were unique to his situation so it is important to recognize that this doesn’t happen to everyone and is not the norm. He has now fully recovered and is doing very well. He will always have his ICD because he has arrhythmia issues but other than that, he says he feels so much better and feels 20 years younger. I have no doubt he was having problems long before he recognized he might be having heart issues.

HCM has a strong genetic component. His father died suddenly at 67, his grandfather at 61. Because no autopsies were done, the deaths were reported as “heart attack”. While we will never know, they both likely died of sudden cardiac death, which is one of the risks of HCM. I share this because it is important for children and siblings to be checked for HCM when someone is diagnosed with it. I encourage you to continue to follow up with your doctor and talk to family members about being checked out too. Best wishes for the future.

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@colleenyoung

Hi @barbararickard
Welcome to Connect. I’m glad you found us. You are definitely not alone. We have a great group of people here who also have hypertrophic cardiomyopathy (HCM or HCOM).

Let me introduce you to @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @rosebud @fishinglady to name a few. Many of them (if not all) have had surgery, some recently and some a while ago.

Cynthia, Ron, Lynn, Pat and company can you share how surgery went for you and help answer some of @barbararickard‘s questions?

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I was diagnosed with HCM in 2014 after having sever fatigue and shortness of breath in 2013. The thickness of the muscle was enough to require surgery at that time, however, a trip to Duke University Hospital with one of the cardiologist told me that if I wanted they would do the surgery but it would take a year to heal and that after a few years I would feel bad again due to the related hormones released with this condition. Tomorrow, Monday the 27th and 28th I am having another echo and stress/with contrast done and will see the doctor in april. After reading some info on here it sounds as though I have not been well informed. My cardio is a great doctor but not a specialist in this disease)HMC) Should I request another doctor(specialist) about surgery. I am currently taking Trope at this time but still experiencing a lot of shortness of breath and a lot of fatigue. I should also mention that I am turning sixty in aug., and have fibromyalgia, also. Frustrated…

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@colleenyoung

Hi @barbararickard
Welcome to Connect. I’m glad you found us. You are definitely not alone. We have a great group of people here who also have hypertrophic cardiomyopathy (HCM or HCOM).

Let me introduce you to @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @rosebud @fishinglady to name a few. Many of them (if not all) have had surgery, some recently and some a while ago.

Cynthia, Ron, Lynn, Pat and company can you share how surgery went for you and help answer some of @barbararickard‘s questions?

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It definitely sounds like you could use a second opinion from a HCM specialist. There is one at Duke. I believe his name is Dr. Wang. If I were you I would make an appt. to see him.

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@colleenyoung

Hi @barbararickard
Welcome to Connect. I’m glad you found us. You are definitely not alone. We have a great group of people here who also have hypertrophic cardiomyopathy (HCM or HCOM).

Let me introduce you to @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @rosebud @fishinglady to name a few. Many of them (if not all) have had surgery, some recently and some a while ago.

Cynthia, Ron, Lynn, Pat and company can you share how surgery went for you and help answer some of @barbararickard‘s questions?

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Thank you will ask my cardiologist about him

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@colleenyoung

Hi @barbararickard
Welcome to Connect. I’m glad you found us. You are definitely not alone. We have a great group of people here who also have hypertrophic cardiomyopathy (HCM or HCOM).

Let me introduce you to @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @rosebud @fishinglady to name a few. Many of them (if not all) have had surgery, some recently and some a while ago.

Cynthia, Ron, Lynn, Pat and company can you share how surgery went for you and help answer some of @barbararickard‘s questions?

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I just did a little research and I believe there are two docs I have heard of at Duke with knowledge of HCM:
James Daubert and Andrew Wang.

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