new to hcma

[bkoster]

My name is Barbara and I have end stage hcm. My mom died at age 45 back in 1982 waiting for a heart. We were told that she had a viral dilated cardiomyopathy. She didn't know she had a heart condition until she went into heart failure at age 40. I went into heart failure after having my 2nd child at age 32. My mother's mom died after having her (my mom was the 2nd child). I had a biopsy that showed evidence of hcm. My son was diagnosed with hcm when he was 2 - he will be 10 next week. I have a daughter that will turn 13 next week as well, but she has thankfully remained clear of the disease so far. I see the transplant team at Barnes in St. Louis. I am not on the list now. They tell me I am borderline, so I am choosing to wait.
Most people that I know from Barnes that have had, or who are waiting for a heart, have the dilated form of cardiomyopathy.
I would love to talk to people who have end stage hcm. It helps so much to talk with someone who understands.
thanks for listening.
Barbara

[dughr]

Hi Barbara,

I have end stage HCM. Myectomy done in July 2003. I only recently was diagnosed with end stage so it is new to me too. I am curious if you know what your ejection fraction is? Also what drugs are you doing if I may ask? I am on low dose of Atenolol now with medium dose of A.C.E. Inhibitor. I do not know if and or when I will be a cndidate for Tx but am very interested in chatting more with you. I am 40 by the way, diagnosed originally at 17.

Doug

[dughr]

Hi again Barbara,

I forgot to add that I also have dilated cardiomyopathy too. I became dilated sometime since October of last year and have an ejection fraction in the low 30s down from about 45 a year ago.

Doug

[shirleymahoney]

Iam also near the end stage but my EF is still really high and my heart ventricles are very stiff, i did have a myectomy last year but it really didn't take care of the stiffness, i'm short of breath daily and swell like a blow fish, i hope you are doing ok and welcome to site

Shirley

[bkoster]

I am in heart failure. My ejection fraction is 30-35 %. Still pretty good!
For those of you familiar with transplant testing on the bike or treadmill, my Vo2 max score is 15.
I take coreg, coumadin, vasotec, spironolactone, and digoxin. I also take a magnesium supplement called magox.
My septum is not thick now - I am dilating and thinning out.
My son who is 9 has a septal measurement of 21-26 mm.

My main complaint is all the arrythmia - pvc's pac's all the time.
I also get what I call the Betty Boop head. My head feels huge and full of air - I hate that. I do have an aicd/pacemaker. I'm on my 2nd one.
First icd was recalled 2 years ago, and I happen to have a marquis - which also has some type of battery problem. I have not heard from my cardiologist about what they are going to do. I pace quite a bit, but have not been shocked.

Thanks to all who have replied.
Barbara

[Linda]

Barbara, Welcome to the site. I know you will soon receive many more responses offering info and encouragement. Best wishes, Linda

[Reenie]

Hello. You might want to consider calling Lisa Salberg at 973-983-7429 to talk about your situation. She has a lot of information on HCM and the details of end-stage HCM. Also, have you been seen by a specialist at any of the large specialty centers like the ones in Minnesota or Ohio? That wouldn't be a bad idea either.

Reenie

[Lisa Salberg]

Barbara,
Nice to see you online - it has been a while since we spoke. I thought of you when we started this portion of the website recently. I hope you find it useful!

Take care,
Lisa