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Nov 21, 2008

explanation

So a friend of mine asked about my heart and this is what I wrote..so for those of you who don't really know this is it.. PLUS part of it is from when I spoke with the doctor the other day.

As for my heart... I have a heart disease called hypertrophic cardiomyopathy. It causes a lot of sudden death in athletes because it is not easily detected unless they are looking for it. My father had it so they just watched for it in me and I was diagnosed when I was 7. When my family moved to Kentucky is when i really started having problems. They put in a defibrillator and put me on medication. The disease causes the muscle between the ventricles to be enlarged. In my heart not only is the muscle between the ventricles large but the muscle all the way around my left ventricle is big. On top of that the muscle grew over one of the main arteries causing it to close when my heart beats. They put in a stent a couple of years ago but it isnt holding the artery open enough.
Right after my 17th birthday I was supposed to have surgery to remove some of the muscle to make it smaller but also release the artery. They canceled the surgery the night before because the surgeon didnt feel comfortable doing the surgery and at the time they thought the risks out weighed the benefits. Every time I move I see a different doctor and they tell me I need surgery but again they didnt think that the risks were worth it so instead they just played with my medications. One doctor talked about doing an alcohol ablation which is where they put alcohol into my heart and cause a heart attack which would kill off some of the muscle. I have been completely against that since the beginning, it scares me more then anything because I would have to be awake during it. So over time i started getting pain in my chest/shoulder/arm as if I was having a heart attack whenever I walked more then a few steps, now I have the pain constantly. The cardiologists I see do not do this kind of surgery, it is much more then they can handle at the hospitals here so they are sending me to the best specialist in my disease at the best cardiac clinic in the country.
The other day I was asking my cardiologist what he thought my options were and he said that he wasnt sure. He can find no documentation of them doing the surgery to remove the muscle in my circumstances. Usually the surgery is to remove muscle because it is causing problems with the valve and blood starts flowing backwards, in my case I am having pain because the muscle isnt getting enough blood. He said that they may try to remove the muscle and see if it helps however depending on the shape of my heart from the outside it can cause more problems. When I asked him what the chances were of me having a transplant he said it was likely because of the above. He told me that they may put me on the list and do the other surgery basically as more of an experimental surgery. If it works they would take me off the list, but if not then my name would be working its way up.
When I was 16 they told me by the time I was 25 I would need a transplant, but I tried so hard to believe that it wasnt true. My father had a transplant a few years ago, but not just because of the disease. He got a cold that never went away and became congestive heart failure that he was more susceptible to because of the disease.

I really hope that makes some sense! I know its a lot.

2 comments:

Anonymous said...

chcKatie, you are truly one of the most courageous people I know. I keep you and Dan in my daily prayers.

We love you!
Grandma Nancy

Anonymous said...

Katie, you are truly one of the most courageous people I know. I keep you and Dan in my daily prayers.

We love you!
Grandma Nancy