William 's Journal

I quietly passed 6 weeks post AVS yesterday on my second day back to work. Everything has been going exceptionally well for me. On February 26th, I rolled into the OR with the plan of valve replacement and a fix for an aortic aneurysm. I woke to hear that the aneurysm was so small (just over 4CM) that it was not touched, and I got a smaller incision as a result of that decision. The Dr. says that the problem was the valve, and he doesn’t believe the aneurysm will give me any trouble in the future now that the valve has been replaced. It was also explained to me that the bad valve was not a bicuspid valve after all—I was born with the elusive unicuspid valve. Googling has revealed that I am part of the lucky .02% of the population with this type of valve. Dr. Svensson also informed us that there was a significant amount of loose calcification in there. He described it like wet sand and that I am very lucky I didn’t have a stroke as a result. That news hit the point of how serious valve disease can be, even for a relatively healthy, young, asymptomatic guy. Here are a few points about my journey that I hope will help those in the waiting room. • The only real discomfort I experienced during the first couple weeks was my back and neck, sternum was not so bad and I was off the hard stuff by about 9 days. That being said, I took the pain meds in the hospital as much as allowed, no need to try to be hero. Flexeral and a heating pad helped the back tremendously. Except sneezing. Sneezing really hurts. • I took naps as I needed them during recovery, but I walked, walked, and walked some more starting the day after surgery. I’m sure this was key to the success (so far) of my recovery. • The lazy boy recliner is already out of my house, but I will remember it fondly. I slept nights in that chair for about 3 weeks, then went with a 12 inch wedge pillow in bed, and I’m now sleeping flat. • Did I mention the walking? I averaged 8000 steps a day in March, and I’m up to 12000 AVG/ day for April so far. • My Wife, Kids, Mom,and friends have been incredible through this whole thing. Staying at the hospital, preparing meals, documenting meds…you name it. I hope everyone has a support system like I do. • Every patient’s journey is going to be different, but for me the worst part was the anxiety and worry before the big event—by a long shot. I could tell when I woke up in ICU that the worst was over, and this wasn’t going to be so bad. • Speaking of waking in the ICU, I did not like that tube down my throat. It didn’t hurt, it was just aggravating and I wanted it OUT!! Guess what? They took it out. No big deal. • Drainage tubes coming out was not bad, I asked to have some Pain meds about an hour before and that seemed to work fine. • Lead wires coming out was more of a weird sensation and didn’t hurt either. • Walking is very important. It was cold outside when I got home, so I walked up and down the hallway of my small house for 10-15 minutes every hour or so. I also asked my wife to take me Shopko, Walmart, and Lowes to get out of the house and walk. • The first 3-4 days I was in the mode of trying to not be uncomfortable and making myself move, after that, the first 3 weeks or so I felt stronger every day. Since then, I realize I’m doing better every few days or so. • This website and the people posting their stories has been very helpful, I’m really glad I found it. • It’s been a surreal experience as I’ve transitioned back into my normal life. It hasn’t been that long of a time period, but it already seems to be fading into the rear view mirror quickly. • I’m still walking as much as possible every day, and I’m 4 sessions into cardio rehab. The grind is real, but in my mind it’s the most important part of this thing. Sandy and I met a guy at the lab at the Cleveland clinic the day before surgery. He was giving us some restaurant suggestions and told me he had a valve replacement about 10 years prior. He said he was thrilled with the results and is still doing great. I don’t think I’ll ever forget what he said next “You gotta do it so you do it. It’s gonna hurt a little bit, who cares?” I guess that’s it for now. I’m still lurking around this site often, and my thoughts are with the folks going in for a fix, and those who are struggling with tough recovery. The best advice I’ve gotten here is to have a positive attitude, and give yourself over to your surgical team. It’s going to be ok. And don’t forget to move!

A big thank you to everyone who has posted their stories here, it’s been a great source of inspiration, as well as information. I find myself thinking about people I’ve never met while going about daily tasks, whose pictures I’ve seen on the right side of my screen. Reading the updates and looking at pictures as they recover continues to be an uplifting experience for me. Sandy (my wife) and I had our first visit to Cleveland Clinic last Thursday, and I still haven’t been able to find a heart doctor to tell me that I don’t have to do this! So, I left Dr. Svensson’s office with a date to come back and see him…02/26/2019 is my day. We’re looking at a full sternonomy to get the new valve in and take care of the aortic aneurysm. I sought out Dr. Svensson because of his involvement in the Commence trial for the Inspirus Resilia valve. He told me he’s going to try to get that one into me, but he’s concerned about possible calcification in the aortic annulus, which makes it tough to get a good fit. He won’t know if I’ll get the new IR valve until he gets in there to take a closer look. Moving ahead and getting a date on the books has been a good thing, I’ve had some really good nights of sleep since Thursday, and I’m comfortable with the decisions we’ve made. It feels good to officially be in the waiting room. I’m going to do my best to stay positive. This site and your stories have played a big role in that mindset, so again, I say thank you!