Lets Get Aquainted!

[Hrtofwmston]

I guess the name explains it! As a child I always knew I wasnt alone with my HCM but I never really talked to anyone who knew what I was talking about in my context. I mean having an ICD is rough at this age, especially when you go to have it checked and the reading material at the doctors office waiting rooms is limited to "What Can AARP Do For You?" and "Where To Retire" and my personal favorite "Powerchairs Quarterly" So I guess I created this just so I could maybe hear a couple of introductions and or amusing stories about living with HCM in all of its forms. I'll start with one of my own!

When I was in fifth grade I had to do a Service Learning Project with a fellow classmate. So my friend Shelby and I decided to clean up the school gardens. However, the idea sortof exploded in the hanger and we ended the year feuding. The next year when I was gone for a month and a half for my myectomy she spread a couple rumors consisting of me being dead. So imagine my surprise when I come back to school and am greeted with "Ben! You're alive!" Now thats cool for about half an hour but after three days of "Ben! You're alive!" I started yelling back, "I've been here for three days already! Thanks for noticing!" But she admitted to spreading rumors and I admitted to being a bit (VERY) stubborn and we are friends to this day.

[purple_ness1]

Hey Ben

hows it going ?
well i know wat you mean i too have a ICD and when i get my ICD cheecked im sitting there in a waiting room full of old people and the best bit is when the doctor says 2 me your very young to have one of theres anit you , you would thik a doctor would know better then any one.

Well im margi 20 now i was diagnosed at 6 so i know want its like to have to go thou school and be a child with a condsion like HCM i hated it but i think after a while you learn to work with it instead of against it :)

Margi

[Sarah]

A friend of mine started a website called www.chronicbabe.com for people under 30 with chronic illnesses (ben, geared a bit toward women obviously but still great resources and the useful look into how women think!).

The site has a lot of stuff about MS, fibromyalgia and similar, but there are plenty of resources that apply to HCMers (dating, when to tell someone, how to deal with fear, fatigue, etc)

There is even an article by ME under a fake name due to its racy nature!!! I dare you to figure out which one it is. :)

S

[EmilyOrange]

Ben,
I'm fifteen and I found out about a year ago. It is pretty weird, being a "kid" and doing the HCM thing. "I don't take gym," I say. "OMG you are so lucky!" "...if you only knew..." that is a pretty standard conversation. What else..? Oh, how about when you freak out in health class because HCM is not on the list of diseases that affect kids... Oh, that was just me well neve rmind that then.It is just crazy the whole thing is so expected and unexpected at the same time. I said when I was younger "I wish there was a name for what I have,' but now that there is I do I don't know if Hypertrophic Cardiomyopothy is a bit of a mouthful. Any way good luck.
Emily

[angall]

Hi Emily
Yes, Hypertrophic Cardiomyopathy is a mouthful and freaks most everyone out when they are first diagnosed. I can remember many years ago when I was diagnosed with HCM, at that time it was call IHSS (I don't remember what the letters stood for), it was a mouthfull and the diagnosis is the same. Maybe if it was given a different name and it wasn't a mouthful it wouldn't be so bad?? LOL
Anyway, it is so difficult for adults, but I believe much harder for young adults, children, etc.
Sorry you have this horrible disease but do ask questions, chime in on any of the topics, or just vent. We are here for you.

[hondurican08]

I have to agree when you say its even more difficult for young adults, children, etc. to handle. I mean you see stories, movies, and live examples of kids running around everywhere, being so active outside, and you wonder why you can't do the same.

I remember a time when up until I turned 8, I used to be able to run any distance without tiring, now I can only run a few feet before I tire out. People think its because you're overweight or what have you, but they don't know what's going on with your heart. It truly sucks that HCM doesn't have a cure, it really does. I know that there are others in worse situations than us, but HCM is truly hard to deal with. I'm still coping with the ICD I got last November.

I mean with me it seems that there is so little I can do. But I am grateful because I can walk, I can see, I can speak, I can hear, I can go to college and get my education, and I don't depend upon anyone to get my things done. I look at it like this: in life everyone has their cross to bear, some live under a bridge, others cannot see, ours is that we have HCM.

Anyone who wishes to contact me, my email is:

typemeister829@yahoo.com

Email me if you want my IM or just to chat.

Julio, 18
Miami, FL
Lost my mother to DCM

[Esther]

Hi my name is Esther. I understand what you all are saying. I have had hcm since second grade and I have not been able to do sports. I had a defibulator implanted three years ago and I have had a septal myectomy.

I am 20 now and I am at college and have to be careful with my friends about what I do.