The Paper Heart Project & Davis Updates

Did you know that February is Congenital Heart Defect (CHD) awareness month?  Well, now you do.   Danielle Awwad created “The Paper Heart Project” to bring awareness to this disease.  1 in 100 children is affected.  Maybe you know someone that has been diagnosed, and if not, I’m going to introduce you to someone who I love very much who is affected by this disease.  Jace (the hubs), say hello to everyone….”No.” I asked him to participate in The Paper Heart project and this blog. Not particularly loving being the center of attention, he reluctantly agreed.

Jace looking away, wishing I wouldn’t drag him into my ideas.

Jace was diagnosed with this when he was 2 years old but they heard the murmur at birth.  What does this mean?  It means when he was born, his valve was deformed.  A healthy valve has 3 parts and looks like a Mercedes symbol when it’s close.  His aortic valve had only two parts and so it closed like a car garage (kinda).  This is a problem because the blood can backtrack and more or less poison him to death.  At 15 Jace underwent a valve transplant called the Ross procedure where you transfer your healthy valve to the deformed valve, and the healthy valve is replaced with a cadaver valve.  Jace’s family teases him that they are pretty sure that the valve he got was an old man because he became like an old crotchety man after that.

When I first started dating Jace he would do weird things like crack his chest and ask if I could do that.  No dude, my chest plate is still one solid piece.  In fact, one of our first dates was to his cardiologist. (I think he gave me flowers too, because chicks love hearts and flowers.)  Okay, it wasn’t a date, and I volunteered to drive him that day because the tires of his truck were bald and it snowed.  Going to the cardiologist annually and running a ton of tests to see how the valves are doing is just Jaces’s norm.  Although you would never know Jace has a broken heart (not from me or anyone else) by looks alone.  But Jace can’t do all the things.  He could never play football, he shouldn’t lift heavy items (or consistently lift heavy weights), he can’t rock climb, basically, he can’t do any heavy upper body exercise.  When his valve is at it’s worst he gets super tired and sluggish.

3 hearts representing the 2 surgeries (with zippers) and the broken heart with 1 more surgery to go.

When I was about 5 months pregnant with Sienna we attended his appointment and were alerted it was go time to replace one of the valves again. We could replace it with another cadaver valve or replace it with a metal valve.  We opted for the metal valve because theoretically, it would never have to be replaced again but it would also mean Jace would be on blood thinners for the rest of his life.  Being on blood thinners requires bi-weekly blood tests, he can’t eat green vegetables because it could thicken his blood but also, he has to be consistent about any alcohol that he drinks so they can adjust his medicines correctly.

Here’s a little fun fact about a metal valve: If you are ever in a quiet room and maybe a foot away from Jace you can hear his heart click like a clock.  So yes, now every single heartbeat Jace can hear.  He says it becomes louder when he lays down.  I can barely deal with Jace’s snoring, but I can get up and go into another room to sleep, there is nowhere he can go to escape the sounds.

With the doctor’s permission, we opted to wait for the 2nd surgery until after Sienna was born.  She was a fresh 2 months old.  The surgery took about 10 hours in total, 1 week in the hospital and 10 weeks for recovery.  Jace couldn’t pick up anything heavier than a gallon of milk for 8 weeks so he couldn’t even hold Sienna.  It was a brutal process, but he made it, and I will tell anyone, Jace is the BEST patient.  He never complains, he just works on getting better.  (And if I have a fever, I pretty much start writing an obituary for myself.  Roles are reversed here for sure.)

His blood now needs constant monitoring. Too thin, he could bleed out, too thick he could clot and die. So fun times all the way around.

Currently, the other valve, the cadaver valve, still needs to be replaced.  The life span on this valve is about 16-18 years.   The valve is currently on year 21, so for the last 5 years Jace’s annual checkup I stress about the appointment as I keep anxiously waiting to hear that it is go time.  The upside is that technology and science have advanced in the last 9 years and they will be able to replace Jace’s valve intravenously, which will require a 1-night hospital observation and 1-week recovery.  PHEW!  (Seriously, never having to go through that again sounds damn glorious…mostly for Jace, but also selfishly for me too.) Last August the cardiologist said it was doing so good, that he even thought about skipping a year of monitoring for Jace.  Usually, this is epic news but wait, there’s a twist!!!

As you know, Jace was offered a position in New Zealand and we were all on board to move until we got to immigration and Jace’s exact situation is listed as medical conditions that will prevent him from immigrating.  You are not allowed in if you have heart valve disease and need an operation in the next 5 years.  Well, that is awkward as that spells out our exact situation.  After consulting with an immigration specialist the company hired said the chance was very slim that they would accept us in at this point and the company has put our move on hold for at least a year. (I suspect they are putting it on hold until the valve is replaced)  If Jace’s valve was replaced, it would be no problem and moving to New Zealand would be seamless.  New Zealand’s medical community hasn’t advanced as far as the US, so if we were given a health pass to immigrate and his valve was replaced there, it would mean another 10-hour surgery.  Um, no thank you.

You would never know he has had a life long battle with CDH. #Paperheartproject

Let me guess what you are thinking right now because being a mind reader is something I’m really good at.  Can’t we just get it replaced in the US and then go over?  We absolutely could, and absolutely would 100% have to pay for all of it.  Since his valve is doing amazing right now, insurance will not replace until they are forced to.  It would be deemed elective. If it’s not broke, don’t fix it.  Seeing that the going rate of a bag of saline is about $200 in the hospitals, we would have to sign over our house to get the surgery.  Besides any elective surgery, we will be paying for will be to un-mom bod my physic and that isn’t happening either.

So during February, Congenital Heart Defect Awareness month we have been made very aware of his CHD.  Although let’s be honest, on top of Jace’s heart continually clicking, Jace is reminded of his heart as he takes no less than 7 different pills before bed every night.  It’s like the call to bed to hear each and every bottle opened.  So that’s super neat. 

Jace will continue working for the company here in the US and I will be taking on clients for 2020.  It just simply wasn’t our time, and that’s okay.  We are lucky because we were really in a win-win situation.  We get to stay in Colorado, our home and heart, we get to hang out with friends and family and we still feel so freaking lucky and fortunate.  In all honesty, once I found out that it would be major surgery again if we had it fixed in New Zealand, the lure of adventure to move to New Zealand faded drastically.  No adventure is worth risking Jace’s health and life.

In his mid-30’s, these are just Jace’s nighttime meds, not including the supplements he also has to take. The only thing that is going to change is adding to all of these.

If you would like to participate in The Paper Heart Project, take a photo of your paper heart and share on social media with #thepaperheartproject to help bring awareness to CHD. Happy CHD month and we will see you around Colorado in 2020!