I know the feeling, I do not know anyone with any type of Cardiomyopathy, other than the people I meet online. It is difficult for healthy people to understand what I am going through. (And I really do not expect them to know.)
Wow! You have done a great job managing your heart condition!!
You are right, it is hard to realize that for the rest of our lives we both will have our own heart conditions. Unfortunately, there is no cure for Cardiomyopathy. But wow, if your EF (ejection fraction) is 50%, that is great!
Normal EF is between 55% and 65%.
Mine is 84%, which is way too high. Which is not good either, too low or too high is not good.
My condition: Hypertrophic Obstructive Cardiomyopathy (HOCM) is in a way, the opposite of Dilated Cardiomyopathy (DCM). In Dilated Cardiomyopathy the walls of the ventricles are too thin and the heart becomes weak and enlarged. In HOCM, the left ventricle is too thick and stiff, so the heart cannot relax and fill with the proper amount of blood and in my case, there also an obstruction which makes it very difficult for the heart to pump efficiently.
Yes, I have 2 children. They are in grade school. Years ago when I was diagnosed with HOCM, the doctors never said that this heart disease could get worse and that I could go into congestive heart failure. If I had known all of the information I know now, things may have turned out differently. There is alot of fear in my house everyday, because my children know about my heart, they see me sick, they see me short of breath when doing laundry and I have a handicapped license plate. I cannot hide it.
I just try to make everyday the best day I can. But down the road, I may be looking at a heart transplant.
All that we can do is manage these heart diseases the best we are able to. And you have done a wonderful job of this. Please keep up the good work. Too much stress can be a very big problem for both of us.
I wish you all the best
Hugs -- Eileen