Pick a valve, any valve...

 Yesterday was a day that I've been waiting for, for what feels like forever. Information day!

Bojangles and Rambo, two of my special care team members

The morning started off with a visit to UCHealth for a series of CT scans to further evaluate the diameter of the ascending Aortic root as well as the Aortic valve condition (stenosis). The CT scan gives an even greater amount of data to the doctors than the echocardiogram did, especially when it comes to volume, diameter and the ability to view multiple cutaway views of my heart.

The CT scan was done both with and without the contrast dye. I was asked many times if I was allergic to the contrast dye and being that I've never had the dye in my veins I told them I wasn't sure. I asked how would one know if they are allergic to the dye and they told me it's only when it's in you that you'll know if you're allergic to it. Great...

They also informed me that the contrast has a warming sensation from the inside-out and that I'll feel like I wet my pants. Well that was a spot-on description! If you've ever had, you know! After a series of scans without the dye (and without them telling me) all of the sudden I could feel a weird cool, tingling sensation in my right arm (where the IV was placed) that turned to a warm feeling up though my neck and down my body. The contrast was flowing through my veins and just like that, I felt like I had wet my pants, even though I was sure I hadn't. But I didn't, I don't think...

Just after finishing the scans, I was getting up from the table when the tech asked if I had bumped my head recently, because there was a bump on my forehead? I said I hadn't and at the same exact time, we both realized I was reacting to the contrast dye. I was getting a 'hives' reaction and bumps were forming on my forehead and back. Well, since this was considered a very mild reaction, I was told I had to stay for an hour to monitor my blood/oxygen level and make sure my breathing didn't become hindered. Ugh, another hour in my head with my thoughts... Seems I've been here a lot lately (in my head) but the nurses were great and had a good sense of humor. I can really appreciate the jokes and laughter in such a tense setting.

So after an hour had passed, the bumps had receded and I was let go. Three hours later I got to the shop with an hour to work before returning for a 3pm consultation with two doctors. Just one of those days I guess.

At 3pm I had a dual meeting with Dr. Messenger and Dr. Reece. This is the first time in my life I've had a meeting with two doctors at the same time. Dr. Messenger is an Aortic TAVR specialist and Dr. Reece is an Aortic valve replacement specialist. They both were there to discuss options, treatment plan, review CT scans and answer any questions I had. I asked Kristen to attend this meeting with me as it's super hard to retain all of the info from the meetings. (I may just use my phone to voice record the meetings going forward) 

Waiting to speak to the experts

We spent over an hour discussing why TAVR isn't an option for me and what valve and root replacement looks like. (too young, too healthy and too much damage already done to the Aortic valve and root) These two doctors along with their head nurse Kristy were an absolute pleasure to chat with. Eye contact, attention to our questions and genuine sincerity to my concerns and fears left me with a great feeling that I have the best people for my best interest. As well as the confidence they spoke with. I've always said there's fine line between confidence and cockiness and these guys were confident. They were both very understanding of the intense biking lifestyle we currently live and would like to maintain. The understand the rigors of Mtn biking with it's aerobic to anaerobic variables and they understand the lifestyle I would like to return to. I was in the hands of two specialists that were the best in what they do. All a mere 5 miles from my house.

Both doctors were very keen on maintaining my active lifestyle and pursuits after surgery. Neither of them doubted my return to riding. While there may be some holding back or changing of exertion during riding, neither of them said I had to stop and were both positive that I would make a full recovery in a years time.

Along with the Aortic valve, the root is getting replaced as well

Some new information was presented to me last night in the form of additional work they want to perform while the old chest is open. My Aortic root has enlarged over the years and currently sits at 4.5cm in diameter. Once the root has enlarged to 5.5cm in dia it's a red-flag type situation as they're concerned an Aortic dissection can occur. An Aortic dissection "occurs when an injury to the innermost layer of the aorta allows blood to flow between the layers of the aortic wall, forcing the layers apart." Not ideal whatsoever. I have a good friend that suffered a dissection a year back and thankfully is recovering, but a SUPER scary event to have happen. 

The docs told me that if my diameter was .1cm larger, they would be scheduling the surgery instead of talking about options. Scary but awesome that we're slightly ahead of the curve, timing wise. Still not ideal but if we can operate before things go to red-flag status, the surgeons refer to that as a 'lay-up' procedure. aka: a lot easier.

The basic thinking is that since the tissue for my Aortic valve is already 'bad' in the sense that since valve was deformed from birth, that the subsequent tissue leading into my Aortic root is also bad and therefor they'd like to take care of everything in one shot, while they're 'in there.'

Another image of what the Aortic root replacement looks like.

We talked mechanical valves vs. bio/tissue valves and even discussed the differences in the two main mechanical valve companies and how the valves perform. Dr. Reece has done them all and has seen the greatest success with the St. Judes valve in the long run. They seem to be the time tested and have the best track record of the mechanical valve options. He's also comfortable working with the On-X valve but has seen more issues with them vs the St. Judes over the years. He's totally fine working with whatever one I choose OR if I chose to go with a bio/tissue as well.

Pretty cool video of the making of a SJV. I always thought they were metal, but no metal here!

Hard call to make and I struggle right now with which way to go. I'm still gathering information and personal stories from those of you who have reached out with their own tale have been a HUGE help! Thank you to those of you who took the time to email or message me with your own personal choice of valve and recovery story. It helps immensely. 

In summary I have a 'little' bit of time to make a choice and plan when to have the surgery, but neither party wants to miss the 'lay-up' window going forward. We're going to monitor things with much closer timing (3 months vs. 6 months between visits) but both docs are more concerned with the root expansion than the faulty valve. They literally said, "look if you only had a stenotic Aortic valve we'd tell you to monitor your symptoms and go about your life, but with the Aortic root being so big, and your valve in stenosis, you need to make sure you're not doing anything to jeopardize the strength and integrity of that tissue."                  Both doctors agree that getting a valve in there sooner than later will get me down the road 15+ years and by that time technology will have made leaps and bounds with valve replacement options and that the 2021 valve will have bought me the time to wait for the tech to advance.

I have a big choice to make in the valve(s) I'd like inside me for 'hopefully' the rest of my life as well as when to have the procedure. Thankfully I have the time to line up some things for work so JPaks doesn't completely shut down as well as when the 'right' time is to take 6+ months for recovery and rehab. Summer? Winter? Oof, there is no right choice but I've got the time for now to put everything in place and hopefully make the whole thing as smooth as possible.

The dream is fading and the reality is becoming crystal clear. I think last nights meeting with Dr. Reece and Dr. Messenger was great for both myself but even more so for Kristen. To hear the doctors speak so positively for both recovery and regaining an adventurous lifestyle as well as their confidence in their skills was a HUGE relief. Things WILL change, things won't ever be the 'same,' but there's nothing stopping me from exploring, adventuring and maintain a healthy life after surgery, and to have a team that believes the same is amazing.

Thursday is MRI day and I'll report back afterwards.

Love,

-Joe

A few of my favorite things: The Colorado Trail on bikes in the fall