Myectomy question...

[rslammon]

I am not sure if this forum is open to people without HCM. If not, please excuse me. My father has HCM and his condition is acute. So far, he has been treated with different drug combinations and he had an ICD implanted several months ago. In the past month, his condition seems to have worsened. His doctor treated him with Natrecor, but he continues to suffer from a number of severe HCM symptoms.

My question is about myectomy sergery. I was wondering if anyone might know whether certain conditions, such as age (my father is 76) or severity of the disease, may preclude someone from having a myectomy. Are there certain creteria for being a candidate for the surgery? Are there certain factors that would rule out being a cadidate?

Thank you for your help.

Robert

[Cynaburst]

Re: Myectomy question...

Robert - This forum is for anyone at all that wants to know more about HCM. Please feel free to come here anytime.

As for your specific questions, there definitely factors which a doctor would consider before performing a myectomy on a patient, and age is certainly one of them. There are numerous other factors however, and there are other procedures that might be used instead, such as alcohol ablation or different drugs or biventricular pacing, as examples. You should have your father evaluated at a center that performs all of these procedures, and see what they think is right for him.

If you haven't already, you should call Lisa Salberg at the HCMA. The phone number is on this page. She can help point you in the right direction.

Best of luck.

[Reenie]

Re: Myectomy question...

I agree with Cynaburst. Please call Lisa and have her help you find an HCM specialty center. That's the best place to be evaluated for myectomy. As far as whether or not age will be a factor for your dad, it's hard to say. The doctors at the specialty centers will know best.

Welcome to the HCMA. Have you been tested?

Reenie

[Burton Borrok]

Re: Myectomy question...

Hi Robert,
You are welcome here.

Each individual is a special case with special considerations and conditions, but age is not the giant bug-a-boo it used to be. Next month I will turn seventy-two, and in a twelve month period ending just a few months ago, I was hospitalized eight times. I had my fourth heart cath and stenting, I don’t know, maybe my eighth angiogram, I had a stroke (fully recovered), low blood pressure, pneumonia, I passed out a few times, had my renal arteries angioplastied and stented, found out the bottom half of my right kidney no longer works, (after each angioplasty my kidneys almost failed from the dye used), had my Iliac arteries angioplastied and stented, had two HOCM attacks severe enough to be hospitalized, was diagnosed with HCM and (finally) properly treated for it. The special drugs I was on activated my hemorrhoids for six months, and I had associated other problems.

I have a list of about 16 ailments, but I just keep chugging along. I play bridge with a group of senior friends, some in their late eighties, of which a few have gone through things capable of taking out a much younger person. One 87 year old was hospitalized for months and had to give up driving, but aside from that, we all are fully functioning members of society. I don’t know if you play bridge, but by and large, these people have minds like steel traps.

Don’t consider your dad old, based just on his years. Worry what you are going to say to him in twenty-four years when he will want you to come sky-diving with him to celebrate his first century birthday.
Burt

[felixdacat]

Re: Myectomy question...

Robert,

This message board is composed of people who have experience with HCM. For the most part we are not medical people. therefore when new people pose the type of question that you wrote, we assume they are looking for a "what would you do in my situation" type answer.
If it were my father, I would get an appointment at one of the 3 HCM clinics in the country (that Reenie mentioned).
They are:
The Mayo Clinic
The Cleveland Center
New England Medical (Boston)
I would not proceed unless I had their opinion.

I would like to bring up something that unfortuately, you need to hear. Because your father has HCM, you have a 50% chance of having it too (as well as any brothers or sisters you may have). Since your father is 76, I would guess that you are in your 30's or 40's. If you have not had any symptoms yet, do not think you are in the clear. Many people with HCM do not have the condition express itself till their 40's or 50's. I did not find out till I was 41.
If you have not been seen by a cardilogist in a while, you should make an appointment for an Echocardigram. A good echo tech who knows what they're looking for could see HCM within a few minutes. You should then be retested every few years.
There is also now a genetics test as well. It may not be covered under most insurance plans. They would test your father 1st to find his mutation. They have an 80% chance of finding it. They can then look at your DNA. If they find your father's mutation in you, then you've got HCM, even if you have zero symptoms. If they can't find it, you're off the hook.
Our best to your father. Let us know if we can help. I'm very sorry that this has turned up in your family.

[Tigger1]

Re: Myectomy question...

Hello Robert,

You are getting great advice so far. My mother had HCM. In my opinion, she was never treated properly because Her doctors didn't know that much about HCM (ihss as they called back then). Last year I was told I have HCM. I am 49 years old. I have had my 3 daughters, brother and sister all tested. Fortunately no sign of HCM in them.

Talk to the experts about your Fathers condition. Get good advice...

Pat Ekardt
(Tigger1)

[rslammon]

Re: Myectomy question...

Thank you all for the advice and encouragement. Next week is a meeting with my father's doctors and I want to go into it as informed as I can be, so I know what questions to ask. I appreciate your help.

Best,

Robert

[mtlieb]

Re: Myectomy question...

Robert,

I'm a little late in welcoming you to the board... but we're certainly glad that you found us! Family members are always welcome here, in fact it just tickles us to death to hear from folks like you who are learning and becoming involved with the care of a family member with HCM. I'm sorry to hear that your father has been having a tough time of it lately. I can only reiterate what others have said already... that it would be to his benefit to seek advice from an HCM specialist. Lisa can definitely help get you setup with that. In the meantime, please feel free to post any and all questions or concerns you might have... we'll be happy to help you in any way we can.

Take care,

Jim