Jake’s Story

Site created on August 5, 2020

Jake underwent an emergency heart surgery the night of August 3rd.  It was an extremely extensive surgery but he is now in recovery and doing well.  I've decided to start this Caring Bridge as a way to keep everyone informed in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting!

Newest Update

Journal entry by Ashley Wagner

Today marks 1 month since Jake's health emergency.  Around this time 1 month ago I found Jake in my car sweating profusely, breathing heavily with a crazed look in his eyes that screamed "HELP ME." I've replayed the scenario over and over again in my head trying to make sense of it all- the things others could've done if they would've just stopped and considered the fact that a man was in trouble- fighting for his life all alone in a public parking lot. The things I could've or should've done differently that night.  And how I can't find his god damned wallet and no one has come forward with it. (If you have it- please give it back. I'm semi joking..but no really..bring it back please.)
Anyways, my mind always boils down to the same old resolution- "Does it really matter what could have been? What I could've done differently? He's alive and that's what matters."
Today seems like a good time to educate you a bit on Jake's health history leading up to this incident.
When Jake was 11 years old, he had scoliosis and had to wear a brace for four years.  The scoliosis doctor felt he may have Marfan Syndrome, which is a genetic disorder effecting ligaments, the heart, eyes and spine (Google it if you're interested).  Of course he fit a lot of the characteristics because of his tall, lean stature and the scoliosis. He was referred to a cardiologist who ruled his heart healthy and therefore was not officially diagnosed.
Then, in his early 20's, Jake planned to join the Peace Corps, which required extensive health checks.  Once again he was checked for Marfan syndrome. His aorta was slightly enlarged but again, not enough to officially rule him as having Marfan.  At this time the doctor removed Marfan syndrome from his health history to make it easier for Jake to get into the Peace Corps, which didn't end up happening because of other reasons.  I only learned recently, thanks to Sam, that he was supposed to have his heart monitored over the years to ensure his heart was still healthy.
The years passed, he became a dad, a husband, an employee, a student, a man wearing many hats, life racing by and he never had his heart checked.
In the last few months Jake had been complaining about a racing heart in the middle of the night and not being able to catch his breath at times.  He thought he had an allergy to our new puppy so he got checked out for allergies to which all came back negative.  I figured he just had anxiety and told him to just admit it to himself and that it was okay to be anxious. Hell, I've been dealing with anxiety as long as I can remember. If anyone knew what it felt like to have a racing heart, it was me!
It was after the negative allergy and asthma tests that he decided to start looking into his Marfan history and perhaps meet with a specialist to check him over.  He managed to compile his records from all those years ago and have them transferred to Mayo.  At this time I STILL didn't think anything of it. I was just happy he was taking control of his health.  He planned to meet with a Marfan doctor at Mayo on August 4th- the following day that this all happened.
We can now conclude that Jake does in fact have Marfan syndrome.  While Jake was still asleep in ICU, a Marfan specialist came to visit.  We had a productive conversation- I told her what I knew of his health history. She informed me that we would need to conduct genetic testing on our girls in the upcoming months.
I've read a bit here and there about Marfan now that its come to the forefront of my life and... its crazy.  One of the first days after Jake came out of surgery I searched for "aortic dissection" and was flooded with "Marfan syndrome" as an association. Reading about The Syndrome, it seemed like all the mysterious pieces of the puzzle started to finally find their way into their notches and grooves- "bulging or sunken chest, tall, crowded teeth, abnormally long fingers, flat feet." 
I felt stupid. I missed all of the cues.  He talked so rarely about Marfan being a potential issue that I honestly never gave it much thought and yet the warning signs were there.
All I can do now is be a support, an advocate and a voice for my husband.
In November, on Election Day oddly enough, we'll have a full day of tests and appointments with his doctors.  Jake will finally get to meet his Marfan doctor, the one I met in ICU. I'm honestly looking forward to that day as it'll be the first day we really start to learn more on how we can maintain his health going forward.
In the meantime, Jake is doing great.  He's going to physical therapy twice a week and walks daily.  His biggest struggles continue to be his dexterity with writing and his memory.  But, we're working on it and trying to be patient. Thankfully, he still knows how to laugh at himself.
This weekend we'll celebrate our 8th wedding anniversary.  For the first time, we'll stay home on Labor Day weekend and get back to basics- just enjoying each other's company. I wouldn't want it any other way.
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