Category Archives: Uncategorized

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.
Not the American heart association. They tend to ignore us ;-)”

Leave a comment

Filed under cardiology, health, sick, Uncategorized

8 months

Yesterday was a remarkable day. As of yesterday, I’m married to a 40 year old! I LOVE this because it is so surreal. I’ve been living in bonus time long enough to be married to a 40 year old!

Also, it marked 8 months since heart surgery.  I’m feeling fabulous.

As a matter of fact, on Sunday, the people sitting next to us at church complimented me on my singing, at which point I became pretty embarrassed. Our church music is loud so I always assume I can sing at the top of my lungs and no one can actually hear me. Ha! But I write not for compliments on my voice (if you know me, I’m a choir kid, not a soloist.)  I’m telling you because I was wonderful to be able to tell them – “Hey! It’s a God thing! I had heart surgery. And with my improved heart function, God returned my ability to sing like I used to.” All to his glory.

Living and singing in Bonus Time. (and Loving it!)

Leave a comment

Filed under Uncategorized

We moved!

It’s why I haven’t posted in a while. (Packing stuff, moving stuff, painting, and unpacking stuff takes a lot of time.)

Sadly, it’s late so I don’t have time to write much now – just wanted to let you know we actually moved to our new house.

Leave a comment

Filed under Uncategorized

A day to relax.

The last few days, weeks, months have been a whirlwind.

From surgery and my mom being here, us deciding to move, to my in-laws visiting and helping us fix up the house. From the last week finishing up cleaning and to making sure we were out of the house the last 4 days – wow. Today we are “relaxing”.

Well – now that I’m home from my trek to the grocery store. Our fridge was barren. Last week we ate all the leftovers so I’d didn’t have to keep cooking and get our kitchen dirty. And this weekend, we ate out.

It’s 11:30. The baby is napping and the three year old is in the other room playing. (He is making his matchbox cars talk. One car is telling the other there is a surprise and the other car is guessing. Sonic? Nope. Mark & Liz’s house? Nope… I’m really curious what his make believe surprise will be.)

So for the moment I’m going to kick back and rest. Maybe watch The olympics. 

Uh oh – Z needs help. That was a nice five minutes. 🙂

Leave a comment

Filed under Uncategorized

Week from tomorrow

Our house will be listed to sell a week from tomorrow.

All of the major work is done! (Hooray!)

We still have one big cleaning project and a few smaller projects to do so we can finish taking pictures for the listing, but it feels like we are finally close to being ready.

Leave a comment

Filed under Uncategorized

Almost pain free

I’ve entered a more frustrating part of healing.

I’ve now gone over 24 hours without any pain meds. Thank you Lord!

However, this also makes it more difficult to remember to stick to my restrictions. 

I’m only 35. I’d rather not do something dumb, mess up my healing chest bone and then regret it for the rest of my life.

1 Comment

Filed under health, Uncategorized

Normal sleep

Well, almost. After almost two weeks of sleeping on hospital beds, couches, recliners, surrounded and propped up by pillows, last night I was able to sleep in my own bed, lay flat with just a pillow under my head. And it was glorious.

This best night of sleep yet was also assisted by the stepping down of some of my meds. Medicine affects my head pretty bad so when it comes to sleep, I get unrestful, crazy, intense, often violent, dreams.

Here are a few examples of my dreams:

*I was framed for murder.

*Booth & Bones (from the show bones) turned into blue cat people trying to solve a murder before the three of us were attacked

*Some friends were fishing with guns (instead of fishing polls) and then showed me a huge knife collection from China

*Another friend was driving us around in her car. Except I was in the driver seat and she was 2 rows back with hand controls. It was raining and she wasn’t paying attention so I had a front row view to multiple car accidents we were almost in. Then we got to her house only to have a swat team arrive.

*A drug cartel was hunting me down in a library.

These are just a few. There were several others that involved knives, trying to get a task done while running out of time, an inability to see, but you probably get the point. 

It was also probably my body trying to sort out pain and stress.

Last night … I don’t remember what I dreamed. And that too, is glorious.

1 Comment

Filed under Uncategorized