Adam's Journal

3 years today since my valve was repaired. It is hard to believe its been that long already. All is going well. Although I am much better than I was prior to surgery now, it does feel likely there is no end to recovery. Not in a bad way. Just that after diagnosis/surgery, recovery and dealing with everything that comes with it is now just something we have to deal with daily. It wasn't an event to just get through, it's a continuous journey. I don't feel limited in any way and I can do everything I want to be able to do. There's just always something to think about, and unless you've been through it it's hard to relate. So although I am mostly mostly a silent observer these days, I still check the site regularly to see how everyone is doing and to see if there is something helpful. And maybe, occasionally I could be of help. Anyway, hope you are all doing well and good luck to those just starting your journey.

Today is 8 months post surgery for me. Recovery isn't linear and not every day is a step forward, but I've felt great the past couple months now. Better and more capable than I've been the past couple years before surgery. Still wake up with sore chest, back, and shoulder muscles some days, but it goes away once I get moving. Also, somewhat rare I had nerve issues that went unchanged for about 7 months. I started red light therapy (photobiomodulation) about a month ago and it has done wonders. I encourage anyone that has nerve pain or numbness of any kind to look into it. Good luck to those with upcoming surgeries and continued success to those in the early days of recovery.

Played tennis for the first time post surgery tonight. First real strenuous upper body activity and it went well. And definitely have some endurance, which I didn't have before surgery.

Your perception of time slows during difficulties.
What seems like it will last forever will not.
When you look back on even the most harrowing challenges they tend not to seem so all encompassing.
Just knowing this can help you to keep showing up—and sometimes that's enough.
I read this today and just thought I'd share.

Another recovery milestone 3 months out. Never thought I'd be happy to mow the grass, but it felt good to be able to do it again. Probably could have done it sooner but why rush. Cardiac rehab continues to go well with steady gains in exercise capacity. My only issues to date (and still ongoing) are nerve damage. I still have numbness in 2 fingers and my thumb and nerve pain on one side of my chest. Both are really just annoyances but hopefully it goes away. Doctor said it could take 6 months.

I am home! Really feeling pretty good. Amazing how much I improved the last 48 hours. I know theres still a long way to go but happy where Im at. I appreciate all the info and people here that helped me make the best decisions. I believe that knowledge and confidence that comes with it helps so much in recovery.

4 days post op. Everything went really well. Dr Burke was able to repair my aortic valve instead of replacing it. Post op echo looks good. I'm thrilled that so far results seems as good as I could hope for. Recovery had been a struggle but turned a corner today when we got pain meds dialed in. Oxy really disagrees with me and I felt awful. Now with different med pain is tolerable and I am no longer nauseus or sick. Now just waiting to go home.

Anyone with an aortic aneurysm and regurgitation have a Ross procedure done? Especially, wondering about a “protected” or “reinforced” Ross to prevent dilation.

Met with surgeon. Nothing unexpected since I knew surgery was almost certain, but now it’s more real when the doctor confirmed surgery is required and will be within 3 months. Unsure still at this point if the aortic valve can be repaired, but the root needs to be replaced. So option 1 would be a valve sparing root replacement surgery. If the valve needs to be replaced I need to decide between two options, either a Bentall procedure with a mechanical valve or the Ross procedure. At this point I am leaning Ross, but still unsure. Looking for comments from anyone that has had either of these at a younger age (I am 42) or have had to make a similar decision.