Life will never be the same

 Heartbeats, Rhymes & Life

Joe's journal of cycling through Open Heart Surgery and Valve replacement

Atop the high point of the Colorado Trail in 2016

-Everyday is a dream. A dream in the sense that it doesn't feel real and I can't believe it's happening. I look forward to sleeping at night, as that's the only time my mind isn't thinking about 'it.'

'It' being open heart surgery and Aortic valve replacement. 

It so hard to even type this out for the first time. My hands are trembling as I try to put the words down and ironically (or not) my heart is racing as I come to terms with the fact that this is reality and it's not a dream at all.

I don't get much work done these days as my mind is adrift with endless thoughts of what may be to come. I have the best and worst job for a wandering mind, but I'm hoping that putting some words down will help ease that for me.

This is the first time I've put words down about the issue of my deteriorating Bicuspid Aortic Valve (or BAV as I'll refer to it from now on) since having a recent checkup on Jan 4th 2021. My doctor noticed that my heart murmur had increased slightly and wanted to have me visit the cardiologist for an Echocardiogram to get an updated view of my valve and heart.

I've known about my BAV since childhood and did a number of tests/ monitoring as a child and as I grew up, into my late 20's.

It had been 7yrs since my last echo and checkup with the cardiologist and since then I've done some big things, physically and I've never let my faulty valve define me, nor hold me back. I don't tell many people about it because it's been a non-issue, until now.

Three weeks ago my doctor called and left me a message to call him back right away as he wanted to discuss my recent echo. Once I got him on the phone he explained that the doctor/tech reading the echo was concerned enough to call him straight away. He explained to me that they have multiple ways of sending info or requesting a conversation about results between the doctors themselves and that this doctor felt it urgent enough to call him instead of using other methods. 

My doctor said he's never been contacted with such urgency like that before.

Well shit, that makes me feel GREAT. On top of that, the soonest I could get into see the cardiologist to go over the results with me was a week away. Seven days is an eternity when you've been given such jarring news...

Turns out that the stenosis in my aortic valve is allowing approx 30% backflow (regurgitation) of blood, which is making the heart pump 130% to make up for the backflow, which then causes the Aortic ventricle to enlarge because of the added pressure and strain put on it. Good lord those numbers were hard to swallow. 

I guess I had secretly hoped, thought, wished that things had either stayed the same or were somehow getting better. (that literally cannot happen, but hey, a guy can dream right!)

I mean HOLY SHIT! I did the Colorado Trail 3 times (with one race) with 30% of the oxygenated blood (destined to go out to muscles and the body) flowing backwards!?!

Makes me wonder what I could have done with a full 100%... Maybe I can find out one day...

All of this means that valve replacement is coming up way, way sooner than I had hoped. All through my childhood and young adulthood I thought and was told that by the time I needed surgery they'd just slip up under your ribs and be in-and-out in a day's time!

Well shit, were in 2021 and although there are some operations where they can do that (TAVR, TAVI) my age and valve condition don't allow for that operation so there's only one choice, open heart surgery. Damn I hate typing those words. They scare me to no end.

On top of that the choices of replacement valves both have huge drawbacks. On the one hand a mechanical valve like the St.Judes valve(Go MN!) or the On-X valve only require one surgery as the valves last a lifetime, you have to be on blood thinners and anticoagulants for the rest of your life.

The other option is a tissue valve which does not require blood thinners, but will have to be replaced in the span of 12-20yrs because they wear out.

I've recently been looking at other options but there have not been any huge advancements in the valve department for some time. We're still using age old (but proven) technology and parts.

Part of the thinking with my doctors is if we can monitor and maintain for any length of time, the technology may get better and the replacement options may open up. Fingers crossed!

I've been at UCHealth here in Denver almost once a week since that diagnosis and I'll be there twice next week, the first week of February. For a guy that stays active, can count on one hand how many times I've gotten the flu in the last decade+, doesn't take any medications and 'feels' healthy, going to the hospital weekly is crushing, mentally. I haven't been to the hospital this many times in my whole life as I have in the last month!

I'm surrounded by amazing health facilities, doctors, cardiologists and even family (Katie!) that have extensive knowledge of my condition. My wife Kristen, is equally rocked by all of this new information, but I honestly don't know what I would do without her. She is my rock. Always has been, always will be and I know we'll get through this, together.

Heck, a BAV is the most common congenitive heart condition there is, especially amongst men, but I felt the need to start this blog to document the in's and out's of life leading up to and after surgery.

More testing in the follow weeks (Cardiac CT scan, MRI, Stress test, can I just get a room at UCHealth?) to gather more information to determine a plan of action. It could be 5 years before surgery, it could be a lot sooner, no one knows yet.

I'm going to keep this updated as more information becomes available and to relieve myself of this anxiety and silence I feel like I've been keeping. I'm more scared than I've ever been. Scared life won't return to 'normal,' scared I won't be able to maintain the lifestyle I've created, scared I'll lose my business and scared I may die...

But I've chosen to use this platform and this opportunity to get stronger, enjoy EVERY SINGLE DAY right now and appreciate every breath, every heartbeat and every person because I do know one thing is for sure, life will never be the same.

I got a fortune cookie the other day with the saying 

"Life is either a daring adventure, or nothing."

Fuckin' right, Here we go.

-Joe

Riding through California desert on the Julian BFL loop