Tag Archives: pulminary atresia

I have stuff to say

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.  

https://www.achaheart.org
Not the American heart association. They tend to ignore us ;-)”

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It all started at the beginning

I was born in the suburbs of Chicago. My parents moved from Bismark North Dakota to the Chicago area when my mom was seven months pregnant with me. This part of my story always seems miraculous to me. Who does that? Who moves when they are 2 months out from having a baby? Apparently, my parents and it’s fantastic they did as you will soon read.

When I was born, I seemed fine.

1980_woodstock

Me – new. See that hair? The nurses nicked named me “Woodstock” like the yellow bird from snoopy because my hair stood straight up. I was 8 lbs 14 oz when I was born. Another blessing as my ill health caused me to lose a lot of weight. I’m still “pink” in this photo because I haven’t crashed yet. Everyone is unaware of what is about to happen.

And then something went terribly wrong. Had I been born in North Dakota – this is the end of the story. I die. You never read this. But it isn’t the end because my parent’s trusted God’s best for them and now being near a major US city, I had a chance.

1980_blue

This is a picture of my dad holding me (with my maternal grandparents). If you look close, you can see I don’t quite look the normal “pink”. I’m a little blueish – gray. It’s called being cyanotic. It has to do with having low oxygen saturation.

While my mom was still recovering from my birth, I was put in an ambulance and rushed 40 minutes to downtown Chicago. Within the first 24 hours of life, the doctors discovered I had Pulmonary Atreisa (complete blockage of the pulmonary valve – blood could not get to the lungs to pick up oxygen), so they performed a Waterston Shunt to help reroute blood so that I could pick up oxygen from my lungs.

While this did improve my condition and bought me time, I recently learned that I was only at about 75% oxygen level. Not good enough. At around 30 days, the doctors went back in and basically “poked a hole” where my valve should have been. My mom says I “pinked right up.”

1980_first_surgery

This is a picture of me after my first surgery. I still have some pretty sweet scars from this one, including the “dent” in my leg. (I forget what normal legs look like, from day one I had a dent from the cut down IV.)

1980_nurse_babyD

I’m looking a lot better in this photo. It’s likely right before I went home or at a later check up.

Both of these surgeries were what’s called “open chest” meaning they did not stop my heart (at least, I think… I’m a little foggy on the details and my old medical records don’t provide much help). I went home at around 40 days old and that was it for a few years. I’m sure there were many doctors appointments and check ups, making sure everything was going ok.

I’ve heard stories about how I was a terrible baby (I cried a lot – screaming really). I’ve been told that my mom got approval, even encouragement, from the doctor to let me cry. It was “good for my heart.” I’m pretty sure I don’t have any screaming baby Debra pictures to share. 😉

Life moved on into toddlerhood.

Come back to read what happened when I was around 2 and a half years old.

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