Sunday, January 21, 2007

Have Been Preoccupied

I haven't written in this blog for awhile as I've been preoccupied with a health issue.
My menopausal problems put aside, this has to do with my heart.
I was diagnosed with Hypertrophic Obstructive Cardiomyopathy (HOCM) in 2000. It is also known as Idiopathic Hypertrophic Subaortic Stenosis (IHSS).It is listed as a 'rare' disease because it affects less than 200,000 people in the US population.
In short, it is a heart muscle disease that is inherited. The heart muscle becomes too thick to function properly.
The thickening of the heart muscle may, in some circumstances, obstruct the flow of blood out of the heart. Which has happened to me.
I have been taking medications for the last 7 years that has helped tremendously, and had an echocardiogram done once a year. I had been complaining to my cardiologist of a feeling of pressure in my chest, as if someone were sitting on me , and it was difficult to catch my breath but there was also a feeling of extreme coldness.
In November I had a cardiac MRI done. The results show that my condition has progressed and the mitral valve regurgitation has increased.
I'm having a TEE ( Transesophagul echo) and my second heart catherization done on Thursday of this week. When the results come in, a surgeon will talk to me about my options. One of which is an open heart surgery procedure called myectomy.

A myectomy is a reduction of part of the enlarged muscle. The surgeon would make an incision (cut) on the front of the chest and would then cut the breast bone. This allows the surgeon to have access to the heart. A myectomy will relieve the narrowing caused by the thickened muscle and will increase the heart’s ability to pump blood out of the heart. In some cases, the mitral valve can be replaced at the same time if needed.

I'm a little nervous. Even though I know that if I do need the surgery, it will in the long run help me to live a more 'normal' life. I think what makes me nervous is ...what if I don't wake up. lol Silly thought I know, but it's on my mind constantly.

I joined a HCM forum, and there are many members who have had the myectomy done already and are doing very well. I try to keep that in mind. But why am I still so scared?
Arrrgggh, I'm driving myself crazy.
Apparently Mrs. Hyde wants no part of this because she's been in hiding or on vacation, she hasn't been of any help at all.

I keep telling myself it's going to be okay - whatever happens is my destiny. I'm 54 years old, and have led a wonderful life. I have 3 beautiful daughters and 3 equally beautiful grandchildren and a husband who loves me no matter what. I'm truly blessed.

I desperately want to see my youngest daughter get married, I want to see my grandchildren get married.....but maybe I want to much.

My dad died at the age of 42. His official cause of death was myocardial infarction. That was back in 1975. It is believed that I inherited the disease from him, because HOCM's are born with the disease. It can show up in adolescense or in adulthood. They may not have had the technology in 1975 that they have now. My dad had 7 children, I am the oldest, and as of this date, I am the only one with the disease. We all had a 50% chance of inheriting it. My children, and my grandchildren also have that risk. I've made it 12 years longer than my dad did....that's gotta be a good sign.

My 5 week old grandaughter was born with a hole in her heart. It never closed. She is at higher risk of inheriting the disease than the other grandchildren, simply because she does have a heart murmur. It certainly doesn't mean that she WILL get it...just that she has a higher risk and will be seen by a pediatric cardioligist until she's 18 years old.

It's so hard to talk about my fears with my family. Not that they don't care, but I think they share some of my fears and it's too difficult to talk about. If you don't talk about it, it isn't 'real'.

Anyway, that's one of the reasons that I haven't been writing. But I needed to vent whether anyone reads this or not. It helps to get it out.

I don't know if there is anyone out there who may be reading this who has a family member with HCM/ HOCM /IHSS , but I'd like to post the link to the HCMA ( Hypertrophic Cardiomyopathy Assoc.) forum where you can vent, ask questions, and get support from others who either have this disease or have a family member who does.

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