I’ve gotten to the point where my need for a heart transplant is public. I need to advocate for myself to be sure to make my life up to and after transplant as easy as possible and that means people have to know about it. So far I’ve gotten a one story house since stairs make me tired now and could be difficult after surgery. I’ve also enrolled MAEB in part-day prek and I have some childcare lined up for Will. Sometimes I feel judged. I almost feel like telling people about my heart can be viewed as a kind of ‘name dropping’.
“Oh she’s just using that to get…”.
But then if I don’t tell people I have a feeling they see me as a healthy young woman who doesn’t work putting her kids in daycare.
“Can’t she take care of her own kids? She isn’t even working.”
I’m working on being less paranoid about what others are thinking of me and just getting on with it. That being said, I feel like a lot of people are curious about the aspects of the transplant but don’t want to ask for various reasons. I had someone ask something the other day and say, “I hope it’s not too personal.” For me it isn’t at all. It is just a fact of life. I’m super interested in the medical field and find it all fascinating so I thought I’d host a little q&a for all of those who want to know! Post a question below and I’m happy to answer it! I’ll start with a few I’ve already heard to kick us off!
Q: Do you get a beeper?
A: Nope. This is 2015, we just use cell phones 🙂
Q: How are you feeling?
A: Mostly tired. Some days are great and some the exact opposite.
Q: What’s wrong with you?
A: Nothing 😉 just kidding. When you heart (a muscle) contracts it is supposed to expel 55%-70% of its total blood volume. Mine only does about 15%. My muscle is severely damaged, probably from a virus at some point in my life and will never regain its function. What I have is called an idiopathic (meaning no one knows where it came from) cardiomyopathy.
So, you’re up! Ask away!
Courage, dear heart ~ C.S. Lewis