With Jimmy Kimmel and his son’s diagnosis in the news, along with the fact that the end of this month marks one year since my most recent Open Heart surgery, I have stuff to say.
Plus, we just announced two days ago I’m pregnant with our third kid. (Due in October. Yay!!!)
This takes time and energy – I don’t have an overwhelming amount of either at this moment so I’m making this place holder blog.
If you want to read up on my original Pulmonary Atresia diagnosis and being born in 1980 with CHD, you can find my story (With pictures!) here, here, and here.
I hope to address some more specific issues that have been talked about the last couple days because of Kimmel’s story soon.
Thanks for stopping by.
***Update*** I never had time to go back and write a post, so here are some of my thoughts I did share on Facebook:
From my personal page on May 5th: The following is a comment I posted on a fb article. Some of my thoughts regarding Kimmel’s son, our broken system, and Congential Heart Defects.
You get a repost because my brain is exhausted and full to the brim with recent insurance, care, CHD, and pre-existing conditions talk. **edit: and for it’s worth, I wrote this before yesterday’s AHCA stuff. I know little to nothing about it. This pregnant wife, mother of two, CHD patient has other things consuming the day. 😊**
“Hi. An adult here, born with CHD. In fact, very similar to Billy Kimmel, I was born with pulmonary atresia. Complete blockage of the pulmonary valve. A death sentence if not immediately addressed. (I had my first surgery at 24 hrs old in 1980.)
It wasn’t an issue so much when I was a kid (parents insurance, etc) or when I was working full time (group insurance typically covers pre-existing conditions) – my issues are now.
Zero ACA plans cover the specialized cardiologists in our area. Regular cardiologists can’t help me and ACA plans (which we can’t afford) don’t even cover the cardiologists that can help me.
Insurance is NOT the same as Care.
It’s extremely complicated. The old system was broken and the new system is also broken.
At the same time, I don’t want single payer because waiting lists and lines kill people like me. They kill people like Billy that grow up and are no longer cute kids.
I’d rather take this Kimmel coverage and have people taking about CHD. The Number ONE birth defect. Did you know that?
1% of kids are born with CHD, yet it receives very little coverage and very little research. Kids born with CHD like Billy and me need life long monitoring (at minimum).
There is no cure. Once a heart defect, always a heart defect. Yes there are repairs and some can lead fairly “normal” lives, but it’s never gone, cured, or fixed.
I wish we were talking about that.
Want more info on CHD? Check out the Adult Congenital Heart Association.
Not the American heart association. They tend to ignore us ;-)”