Tag Archives: chdwareness

One Year

One year ago today, my heart stopped for 20 minutes. Isn’t that crazy?!? On average the heart stoppage time for having a pulmonary valve implant is 45 minutes. A heart can go 3-4 hours on “pause” for transplants.

I’m very thankful for my less than average stoppage time. I credit it to not having the typical brain fog that often follows open heart surgery. I’m also extremely grateful that the Creator of the universe allowed his creation to understand the human body so well as to be able to have the knowledge and skill to do heart surgery. And I’m grateful I was created at this period in time, where I could live a full, mostly healthy life.

Since One year ago:

HEALTH
My health has been great. After the initial healing time, I’ve had more energy and have been able to bounce back better from full, exhausting days or lots of time spent out in the heat.

HOME
Because of such a surprisingly easy and quick recovery, I was bored and started looking at houses. This resulted in us listing our town home to sell. Because of our location and price point, we received 7 offers in 4 days. We found a new home (that we LOVE!) that met our needs and even checked off some hard to find wants (my large kitchen!). Within 4 months of heart surgery, with the help of many family and friends, we moved.

ADDING ON
With cardiologist approval, we found out at the beginning of this year we are expecting our third child. We couldn’t be more thrilled to add to our family. And as I suppose is normal, this third pregnancy is flying by. I can’t believe we are already at 18 weeks.

FINANCES
We are very fortunate to not owe on any of the heart surgery medical bills. We have been sticking with Dave Ramsey’s baby steps and the only debt we have is on our new house. We’ve been working really hard on not buying items we really would love but just don’t have the funds for right now (like a new grill) and God has surprised us with some fun stories of perfect used items that “fell into our lap” with very minimal expense. (Like our “new to us” grill. Free from a neighbor two streets down. We just had to buy a couple of small replacement parts.)

OTHER ADVENTURES
*A week after moving in, we “crashed” the national night out block party a street over
*We participated in our new city’s Trash Bash, our little family picking up trash on 3 streets and allies near our home.
*I found an amazing facebook group dedicated to women with CHD. It’s the first time I’ve ever “met” anyone born with a similar heart condition
*We participated in the neighborhood spring fling party, winning 2 of the 5 raffle prizes (I finally have a porch swing!). The party also included the ribbon cutting for the new butterfly park so the boys each got to release a butterfly
*We completed a 16 week marriage enrichment class
*Our oldest son had eye surgery to correct his crossed eyes
*I’ve been able to read at least 1 new book each month since we moved. I love reading, but when our oldest was born, I put that hobby on the shelf.

It’s been a busy year. It’s been a fun year. It’s been a surreal year.

We are looking forward to another full, fun year, with many, many more heart healthy years to follow.

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Filed under baby steps, cardiology, family, friends, grilling, health, housing, marriage, moving, reading

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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Filed under cardiology, health, sick, Uncategorized