Ethan's Guestbook

Ethan Sperry  Hi Willie! Yes, I have a bicuspid aortic valve. Dr. Svensson is one of the pioneers of BAV repair. As of two weeks ago (when I saw him), his personal repair success rate was right at 80%. There are a number of factors that impact the decision to repair and its success. Ultimately, he decided to repair my valve at first because I was quite young (27 at the time) as 60-odd years is a long time to be on warfarin. I have a genetic syndrome that likely contributed to the repair failure; however, I do not regret trying the repair despite the serious risks of undergoing repeat open heart surgery. The retrospective case studies on BAV repair are not numerous; however, so as a physician-scientist in training myself, I believe the whole story remains to be told as to the efficacy of BAV repair among the general population.

Ethan Sperry  Also, Willie, I just had a look at your profile. You've likely considered this; however, another thing to weigh in your decision is how active you wish to remain in contact sports like ice hockey. Generally, we recommend that patients refrain from full-contact sports on warfarin, due to the risk of undetected hemorrhage. One of the most difficult things I have to give up by February 2 is my love of riding motorcycles...

Willie Radl  Thanks for your perspective, its good to hear that even though your repair didn't last you don't regret the decision. Having never gone through OHS its hard to understand what taking the risk of multiple OHS's truly means. For me, one of the biggest concerns is whether I should put my wife and kids through the potential (likely) 2nd surgery down the road, if I go with the repair. Certainly I'd like to be off Warfarin especially as my kids are growing so I can be an active participant in their activities but from reading a lot of others experiences Warfarin doesn't seem to be all that restrictive for most activities. I'd likely give up playing hockey, but could focus more on coaching something else. There are definitely tradeoffs to both options.

That's too bad you can't ride you motorcycles, is that a Dr. recommendation or your personal choice? I've read a lot of people on warfarin do road biking which probably doesn't have as high of a risk as motorcycles but still seems prone to crashes/accidents with little to no protective gear. I guess at the end of the day it probably comes down to personal risk/reward to some degree. I'm sure once you have been taking it for sometime you'll have a better understanding of your limitations.

Anyways thanks for commenting and I'm wishing you a great surgery this 2nd time around. I know how stressful it can be but you are in good hands and I'm sure you'll come out of it great.

Ethan Sperry  Yes, Dr. Svensson performed the first surgery (repair via mini-J) in Jan 2017. I was doing really well from March to late October 2017 when I started having palpitations and near-syncope. By late November, I could no longer climb a flight of stairs without feeling very short-of-breath, similar to my symptomatology prior to the repair. At first, we thought arrhythmia was the primary issue, as I have a 15 year long history of rhythm disturbances, including WPW, AVNRT, VT, and varying degrees of SA and AV block; however, the repeat TTE in December 2017 looked identical to my pre-op echo. This prompted an aortogram last week (my AR jet is very eccentric and hard to quantify), which demonstrated profound regurgitation (4+).

Jill Krajnovich  I also had WPW and had an ablation in early 2014 which stopped the rapid heartbeat episodes but had to begin taking Metoprolol to control PVC's. I was born with a bicuspid aortic valve which turned out to be unicuspid and learned of my aortic aneurysm in Aug 2016. After discussing surgery with 3 doctors, I selected Dr Svensson to do the surgery in July 2017 as he could replace my valve and repair my aneurysm with the mini-J incision. Nobody else could offer me that. I hope all goes well for you on Friday (the day after my birthday) and you are feeling great soon!

Ethan Sperry  Hi Mark! Thank you for your message. Let me know if you have any questions about the surgery process - from your profile, it looks like you might be headed that way soon!

Mark Wilbur  Hi Ethan, your comment is greatly appreciated. I'm still in the "active surveillance" stage for at least the next several months. I've been learning a tremendous amount since I was diagnosed, thanks in large part to this website and the generous people like yourself who share their personal experiences here. This has given me a lot of peace and confidence to face what would otherwise be a very fearful event. I appreciate your willingness to share. Thank you.