Billy's Guestbook

Hi Dave! My reply here will probably be fairly choppy in an effort to keep it brief, but I'm happy to elaborate on anything here, via email (wgaines gmail.com), on a phone/video call, etc. I'm curious - do you recall where you read that the chance or moderate to severe regurgitation is 50% after 5 years? Have you asked Dr. Svensson about that research? I am almost certain that the longevity of repairs correlates to the skill and expertise of the surgeon. I feel like I may have been somewhat comfortable with several more surgeons if replacement was my only option, but when I started thinking a repair might be an option, my list narrowed quickly. Based on a stress test last November (about 49-50 weeks after surgery), my valve repair was holding up perfectly. My cardiologist could not detect any change from a year ago. Interestingly, I found videos with Dr. Svensson talking about aortic valve repair, which is what convinced me my valve might be repairable, but when Dr. Svensson looked at my case, his nurse told me he did not think he could repair it. Of course, I went back to Dr. Trento, with whom I had already had a consult, and asked why he thought he could repair my valve if Dr. Svensson said he could not. He basically said that he would not know for sure until he was doing the surgery, but based on what he could see and based on his experience, he just thought he could. He gave it an 80% chance. I definitely had mixed feelings going into surgery. At varying moments, my thoughts oscillated between hoping for a successful repair and a replacement valve. Ultimately, I got to a mental state where I felt like I had thoroughly researched the matter as much as possible, had asked all the questions I needed to ask, and talked to enough people to be comfortable with everything - the only thing that was left was to put full trust in Dr. Trento, who said he would only repair the valve if he felt the repair would last at least 10 years. Once Dr. Trento got in there and started the repair, he knew the repaired valve would be leaking mildly after the surgery, and it is, but he felt like the mildly leaking valve was better than a replacement valve, especially at my age and given all circumstances in front of him (including, for example, his finding that my veins and arteries were surprisingly narrow (because of genetics, not blockages) for a person of my size - surgeons have made similar comments to older family members that had bypass surgeries). It's worth noting that replaced valves do sometimes leak mildly as well. No surgeon or doctor can hear a murmur associated with the mild leak, and the mild leak is barely detectable on an echocardiogram. I have read stories where people opted for a repair and found their valve severely leaking less than a month later. I have also read several stories of people that needed a replacement valve and needed another open heart surgery for another replacement within 6 months (or less). My point is that there is no certainty for any one option, but my best recommendation is to find a surgeon you are comfortable with (and Dr. Svensson was definitely at the top of my list, based on his reputation) and try to trust that the surgeon's expertise will help him/her make the best decisions possible for you once s/he gets in there and really sees what is going on. Final note: even if I learned today that my valve was leaking again and required another surgery in the near future, I am confident I would have no regrets about giving the repair a shot. Some of the reasons for this mindset include the following: (1) I trust Dr. Trento made the best decision based on his expertise and what was known to him at the time; and (2) at least I gave a repair a shot - if I went with a replacement, there'd never be a chance for repair (e.g., what if 10 years from now, they develop a genetic-based technology that allows your native valve to heal/"re-grow" itself?). Please let me know if there is anything else I can do to help!

Hi Art, that's great news that your surgeon was able to repair your valve! For several months after surgery, I felt great. I think my left ventricle and ejection fraction was back to normal within 3 months, maybe less. I started running 4-5 weeks after surgery and swimming at 7 weeks post-op. However, I think I was running off of a false energy caused by the relief of being on the other side of surgery. Looking back, I realized there were times I was more tired than I realized at that time, needed more naps than I realized "in the moment," and wasn't as completely recovered as I thought. I have not posted about this, but a couple months ago (about 10-11 months post-op), I started feeling something that was odd/different/weird. I felt palpitations and had other subtle symptoms that were hard to describe. I just knew that I was sensing some things that were different, and I was definitely concerned. I feared my valve may be leaking again. It not only impacted me physically, but it also weighed heavily on me and was a huge mental distraction. After a stress echo test in late November, my cardiologist told me that the repair was holding up perfectly, so that was a relief! But then what was causing me to feel these things I can only describe as weird/odd/different? We don't know, but the best guess is that my body may still be recovering. I was probably in better shape pre-surgery than I even realized and may have been pushing too hard and expecting too much a year out from surgery. I probably felt great if I was an average person that did not physically push myself as hard as I do (e.g., in swim training), but when trying to get back into the shape I was in pre-surgery, I definitely feel like my body may still be recovering. To directly answer your question, you're only 6 weeks out. Recovery is going to take time, and there will likely be moments of feeling great and moments of not being able to meet immediate expectations you may have of yourself. My cardiologist told me I likely would not feel normal until I got to the 12 week mark. My cardiologist (and also my friend) still reminds me to this day that my surgery was a major surgery, and my body may still be healing and adjusting to everything it went through 14 months ago. Stay positive! Rest when you need to rest! And feel free to reach out with any additional thoughts or questions!

Billy, I can't tell you how much this means to me to hear your experiences. Mental distraction is name of the game for me at the moment it seems. I also wondered if a week or so ago I was running off false energy as well (I was cleared to drive again after being house bound all December). I also always push myself and maintain physical shape and sitting still is getting to me. My inclination is to go for a run and shake this but I know I shouldn't/can't. I am walking 3-6 k a day. I will try and be patient and wait it out. Do you know if they put support rings in your ascending aorta? They did for me, which is why I ask. Sincerely, thanks again.

As best I know, I do not have any type of support rings in my ascending aorta. I think I only have a ring to help support the repaired valve. Despite wanting to get a copy, I keep forgetting to ask for a full copy of the surgery report to review. Everyone is obviously different, and different doctors certainly have different opinions on the matter, but my cardiologist let me start running about 4 weeks post-op. She told me to try to keep my heart rate under 140 and definitely no higher than 150. The first few times, I was probably running at 11 minute per mile pace because any faster would cause my heart rate to go over the limit. Within a week or two, I was able to get under 10 minute per mile pace and stay within the limit. That was much, much slower than my pre-surgery pace (which was anywhere from 6:30/mile to 8:30/mile, depending on distance and how worn down I was that day from other training), but it felt good to just get out and do something active.

No worries about the delay responding - it's great to hear from you, though! I'm sure we've all been through these varying emotions, with some of us feeling some of them more strongly than others. I honestly don't know how I did this, but I somehow accepted my situation pretty quickly and focused on what I needed to do to get through it. With respect to other stressful situations, others have commented that I have an ability to block out things that usually cause people to freeze and instead get into action. I guess I used that "skill" or whatever it is to get through things. In a way, it reminds me of those hard swimming sets. When the coach first gives them to you, you think, "How the hell am I going to make that set on those intervals?" But then you do it and love it, but looking back, you still think, "How did I do that? And could I do that again? I don't know, but it was fun, so I'm ready to try again!" As stupid and silly as this sounds (and as much I wish I never had to go through this), I almost enjoyed the process of researching everything, researching surgeons, and learning about what I needed to do to fix the problem and get through it all. I guess I always enjoy solving problems, so once I accepted the situation and accepted I did not have a choice but to fix the problem, I kind of blocked everything out and focused on the challenge of solving the problem. I know that's not something everyone can do and am not saying it would work for all, but that is how I personally got through it. I (and many others) are here to talk and help in any way we can. I met a lot of people before surgery that answered a lot of my questions, which helped me be at absolute peace going into surgery. I only hope I can similarly help others.