[Hypertrophic Cardiomyopathy...dealing with it]

Author: jess howland (---.customers.uswest.net)

Date: 08-04-02 17:19

My fiance` was recently (six months ago) diagnosed with HCM and she has been struggling with it a lot. She was put on beta-blockers for about 2 months and had some success with them. The doctors took her off her meds after she started getting worse. She was getting very fatigued and weak. Her heart was giving her poor circulation, hot and cold flashes, and edema (largely in the abdomen). I've been holding on to all hopes that she is going to continue to get better. She had tests done last week, and supposidly her heart growth has stopped. However, when she gets stressed her symptoms return and she feels very weak. Her self esteem has also gotten very low due to her edema. She values what she looks like very highly and hates herself now. She just wants to get back to the way she was. I try to be conforting and caring, but it is very frustrating when I know she works very hard to get back to the way she was. I was just wondering if anyone else out there was having similar problems, or could suggest an information source for me to look up.

My fiance` is very active and refuses to take her illness lying down, which I'm very thankful for. She still goes to the gym all the time. She keeps up her cardio by walking on the treadmill on an incline, running, or eliptical training; then she also lifts weights with a training partner, and participates in fitness classes our university offers. She's only 20, stands 5'5", about 135 lbs. small, athletic build. I don't believe she's overweight, maybe a little bit, but I think most of it is just edema. She seems to get bad edema when she eats (in her abdomen). She rarely ever gets hungry, for her digestion seems to be affected by low circulation levels. Has anyone had success in keeping this edema under control and losing weight? Any info would be most appreciated.

Sincerely,

a worried fiance`

jess

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[Re: Hypertrophic Cardiomyopathy...dealing with it]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 08-04-02 20:55

Dear worried fiancé,

Time to Mr. wonderful realistic fiancé, Your girlfriend needs to get to a specialist in HCM ASAP. Her current activity level is dangerous. If she is so into the way she looks and if she thinks that is more important than her life she needs to seriously reevaluate her priorities!

If she thinks because she is young and does not "look sick” there is nothing "wrong" tell her there are MANY others like her in the world and she better take this seriously and fast!

I can show her many pictures of young "healthy" looking people whom unfortunately are no longer living. She needs to have an evaluation by an HCM specialist to determine her risk of sudden death and to set up a treatment program.

Do not misunderstand - HCM is not a death sentence, most people with HCM live to or surpass the average of mortality in the USA - 73 years - HOWEVER your fiancé is at an age that places her in a higher risk and participating in activities that can be very dangerous.

Feel free to call the HCMA for further information.

Best wishes,

Lisa Salberg

President

HCMA

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[Re: Hypertrophic Cardiomyopathy...dealing with it]

Author: Board Moderator: Sarah Beckley (---.dialup.mindspring.com)

Date: 08-04-02 22:23

PS and the number to call to get hooked up with a specialist is 973-983-7429 (the HCMA office).

S