I was diagnosed at age 32 and have a family history of hypertrophic cardiomyopathy which turns into dilated cardiomyopathy. My mom died at age 45 awaiting a heart transplant. My grandmother died in her 20s. My son Jackson, age 3, has recently been diagnosed with hypertrophic cardiomyopathy. My kids are the joy of my life. I thank God for every day he gives me with my children. I went into CHF after having Jackson. I had episodes of v-tach and even fainted after running up several flights of stairs. I could never keep up in aerobics class. Whenever I mentioned this to a doctor, they would always tell me I was having panic attacks. I asked my mother's doctors if I could get what she had and they told me she had a virus that attacked her heart and that there was no need for me to worry about developing the same heart condition. I know if my mother had been alive when I started experiencing these symptoms, she would have demanded the doctors take a closer look at me. This is the reason I fought to get both of my kids screened so early.
I have good days and bad days but for the most part, I can't complain. I work full time as an accountant. My main symptoms are PVCs, which terrify me. I also feel dizzy a lot, I think because of the meds. My blood pressure usually runs in the 90s/60s but can be as low as 70s/50s because of my meds.
| 5mg Coumadin | 3 days a week |
| 2.5mg Coumadin | every other day |
| 1.25mg Vasotec | Daily |
| 25mg Aldactone | Daily |
| 6.25mg Coreg | AM |
| 12.5mg Coreg | PM |
| HCZ diuretic | As needed |
My EF is at 50 right now. I have had a right heart cath. For those of you with Hypertrophic cardiomyopathy - get your children screened. If you have Hypertrophic Cardiomyopathy, there is a 50% chance your kids will have it too. Most kids won't shows signs of HCM by echo until puberty but it can show up earlier, as in Jackson's case, so get them checked regularly.
June 5, 2000 - My Vo2 is now 18, down from 21 last year. My EF is now 20-30%, which is down from 40-50% last year. I am going to take my 5 year old son Jackson - who has hypertrophic cardiomyopathy - to Houston this summer to see a specialist, and I may as well visit the Texas Heart Institutes transplant docs while I'm there. Tulsa only does 4 or 5 transplants a year. I love the doc but I worry about the number that they do.
I received an AICD (defibrillator) and a pacemaker last September. I have not been shocked but my pacemaker works all the time. I still have lots of PVCs but they don't scare me like they did. I know the worst thing that can happen now if I have a run is that I may get shocked. In Christ, Barbara Koster in Arkansas,
Barbara K -- November 13, 1998
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