Billy's Guestbook

Billy G  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!

David Knight  Great information I am so thankful for your response. Dr Svensson long term published results of repairs. https://www.ncbi.nlm.nih.gov/m/pubmed/22341653/?i=3&from=/24681031/related.

Also, my son Connor Knight swam for Florida 2011-2016 State University for 4 years as their butterflier. He gained immeasurable experience in life from swimming. I'll email you soon.

Dave Knight

Billy G  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!

Art Jackson  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.

Billy G  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.

Billy G  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.

Billy G  Hi Michele,

In summary, my family and I were all extremely pleased with Dr. Trento and the staff at Cedars. Dr. Trento was able to repair my aortic valve instead of replacing it on November 13, 2015.

That being said, I recognize that most cardiac patients tend to have good things to say about their surgeons, especially when the outcomes are good. Here are some of the specific things that made me feel good about my experience with Dr. Trento at Cedars-Sinai.

- I was not going to be too disappointed if I came out of surgery with a replacement, but I wanted to feel like I had every chance of a successful repair if anyone in this world might be able to repair it. I had read so much about Drs. Svensson and Roselli at the Cleveland Clinic, I initially felt like I had to go there. Some of their online videos are what originally caused me to believe that there was decent hope that my aortic valve could be repaired. When Dr. Svensson told me that he did not think my valve was repairable but Dr. Trento said he estimated there would be about an 80% chance he could repair the valve, I felt like I had nothing to lose by going to Cedars because I felt like Dr. Svensson and Dr. Trento would both do a great job with a replacement.

- I don't think staying in Las Vegas was ever a serious option for me, but I consulted with some surgeons here nonetheless. The comfort my girlfriend and I had with Dr. Trento compared to local surgeons was on a completely different level. When I first met with Dr. Trento, he generally recapped what was going on, which I pretty much already knew, and then outlined his recommended plan, which was pretty much exactly what I was expecting to hear. For example, he said he'd first try to repair the valve but would only do that if he felt the repair would last at least 10 years. In contrast, the surgeons I spoke with in Vegas said repair was never an option for any aortic valve, at least not with any local surgeon.

- Whenever a nurse or other staff member at Cedars asked me who my surgeon was and I told them Dr. Trento, they all exclaimed something like, "Oh wow! He's the best." One even told me I must have had special connections to be able to get in there and see him so soon. My friend/cardiologist did train under him, but as best I know, she did not pull any strings or anything. The nurses told me that many of Dr. Trento's patients have fewer minor issues than patients of other surgeons there and tend to get out sooner. I was surprised, for example, that they pulled my drainage tubes and catheter about 18 hours after I got out of surgery. I was expecting to have drainage tubes in for at least 2-3 days.

- I had talked to several people with other surgeons that never once saw their surgeon after surgery. Dr. Trento did not see me the first 2 days post-op because it was a weekend and he went out of town, but he did have the other surgeon in OR check on me. Dr. Trento then stopped by on Monday and Tuesday to check up on me before releasing me Tuesday. My impression was that he was very hands-on with all of his patients.

- Dr. Trento and his team told me they wanted me to stay around in LA for at least 4-5 days after they released me from the hospital, but the way the days fell on a weekend, it meant I was going to have to stay an extra day or so. Dr. Trento was happy enough with how I was doing, he agreed to let his team do a final checkup of me on a Friday to release me back home to Vegas so I did not have to stay through the weekend. Not only was that only 3 days after my hospital release, Dr. Trento's office normally does not do those type of appointments on Friday. I never felt like they would ever consider letting me go too early, but I did feel like they bent over backwards a little to help me get home to my own bed sooner since I was doing well.

- I had a room to myself for the entire stay, which is always nice.

- I'm 12 weeks post-op as of last Friday, and everything is going well. The incision also looks really good. It's definitely there (e.g., it's red, especially after working out), but I don't think it has any raised portions at all. Granted, I was in fairly good shape prior to surgery, but I started running 3-5 miles 4 or 5 weeks post-op and then started swimming again the first week of January, which was 7 weeks post-op. I have been avoiding heavy lifting, most weights, and dryland exercises that could strain the chest, but I'm tempted to start trying some of those exercises soon. I really don't feel any pain doing normal day-to-day activities. The only thing that has recently made me say, "Ouch!" has been a few times where my girlfriend has hugged me too hard and somehow managed to press just right on my sternum that causes it to hurt.

The only complaints I can think of with respect to my care at Cedars are fairly minor and are typical of any hospital experience. For example, I was supposed to get out of the ICU the first day post-op, but there were not any rooms available to move me to. They ended up waking me up around 11:00 PM to move me when one was finally ready, so that kind of sucked. Also, despite every nurse saying, "Wow, you're tall. We should get you a bed extender," nobody was ever able to track one down. I think they finally promised they could get me one the last night but would need to wake me up in the middle of the night once they got it. "Uh, no thanks!" In other words, I really have no complaints.

Hopefully those thoughts help you some, but feel free to reach out to me any time with any questions. You can email me at wgainesgmail.com if you want. I'm also happy to give you my phone number, get on Skype, or do whatever helps you out. As much as I'd prefer to have never had to have surgery, I only hope that I can openly share my experience with others to help them get through a similar experience.

Billy G  Enrique, thanks for the input! I'm glad to hear the fluid cleared up for you without needing to drain it.

I definitely knew this was fairly common after heart surgery, but it did come a bit out of nowhere because the PA at the surgeon's office told me everything looked great, including the chest x-rays being "the best she has seen in a long time." Then she called me about 3 hours later saying they just looked at the echo showing the fluid. That echo was on Friday. I had my first post-op echo on Monday, which was good.

They put me on 1 x 0.6 mg pill of colchicine daily and told me to get another echo no later than this coming Tuesday. I have another echo tomorrow morning, so we'll see how things are looking. My cardiologist also told me to take the colchicine twice per day instead of just once. She said it might cause diarrhea, at which point I can back off the dose. I responded, "If I can get through the pain of throwing up several times (without a pillow) hours after having my sternum sawed open, I'm not too worried about a little diarrhea."

For the record, in case any of us shall meet soon, I currently do not have diarrhea. :)

Kimberly Biddick  Oh my goshhhhh yes! The pain of throwing up the day after surgery with no pillow was something I'll remember for awhile! 😣😣

Billy G  But... after the first time, I actually started to enjoy it because it moistened my super dry mouth and throat, which was huge relief! That night, I was almost laughing about how that sounds gross but helped me feel so much better.

Bob M  I pray that your surgery will be textbook and your recovery will be uneventful. Tomorrow will be a new day for you with a fixed heart. God bless and rise up!

Billy G  Enrique, I absolutely agree. As soon as my cardiologist confirmed my suspicions about the problem, I said, "There is no point in putting this off." It's hard to believe the date is here, but I feel about as ready as one could feel.

Billy G  Thank you Sophia! It looks like you are not too far behind me, so if I do not get a chance to say anything beforehand, good luck with your surgery. If you feel any of the many feelings I have, you are probably at least a little nervous but also excited to get through everything. Whenever I start to have an even slightly negative thought creep into my mind, I push it out with all the positive stories I've read about from others going through the same thing.

On an unrelated note, I seem to recall you mentioning POTs in one of your posts not too long ago. I almost said something then but did not. It seems like very few people know what it is; even many doctors are not familiar with it. I am familiar with it because my girlfriend was diagnosed with it a few years ago. None of her friends really understood what she was going through, and she lost many of them while she wasn't feeling well. Her case was actually fairly minor, but she still has some days where she doesn't feel great.

When she was diagnosed, doctors and others kept describing it as a disease, but I remember her saying, "I'm not going to treat it as a disease. It's a condition, and I'm going to not let it define me." That's kind of how I look at the heart valve issue I have. I don't like it and recognize some things in life may never be the same, but we should all be thankful that modern medicine has the ability to fix these type of problems with high rates of success. I'm excited to let what I'm facing define me only in positive ways.

Sophia Ridley  Hi Billy, absolutely spot on. I think that in many ways we have the same approach (although my swimming times would be measured with a calendar rather than a watch!) I'm pushing out any doubts. I put on another post recently that I feel that we are actually very blessed that it's treatable with such a phenomenal success rate - this site is absolute proof that this surgery is successful.
I'm so sorry to hear about your girlfriend's experience, especially so that friends drifted when she needed them. I was diagnosed with EDS III (pls see my journal) which can include POTS and MVP. My diagnose really was like fitting together a jigsaw, I do urge people with MVP to investigate EDS as my surgery has been tuned because of it, it's not well recognised by doctors.
Her approach and yours is so true, being defined by something labels you. And with positive thought I'm sure that half the battle won. I'm glad that when i was younger I knew little about my valve as it's not stopped me doing things. My surgeon said I was probably 80-85% presently and I'll not realise how unwell I've been until I'm better. I'm excited to see the new me, and Spring seems a perfect time ! Very best wishes !

Billy G  Steve, I just sent you an email and look forward to sharing what I've learned, both through my own research and talking to others.

Talk soon!

Jeff V.  Steve, If you wish to consult with a great Cleveland Clinic cardiologist, I would recommend my doc of five years; Dr. William Stewart. On staff for 30+ years.  http://my.clevelandclinic.org/staff_directory/staff_display?doctorid=602
I had MVR in Dec. in Cleveland and had a very good experience and outcome. Check out my journals for more info. Jeff

Steve Waddick  Hi Jeff, Thank you for the link. Now that things have officially been put off for at least 3 months I will try and get a consultation at the Cleveland Clinic.

Billy G  Thanks Kelly! It looks like you have things lined up with an excellent surgeon. I did have Dr. Svensson look at my case as well, but I was equally comfortable with Dr. Trento in LA. Since LA is closer to where I currently live, I stuck with Dr. Trento, even though Cleveland would have been closer for my family (I'm originally from Indiana).

Have you ever looked into any US Masters Swimming (USMS) programs? When I graduated from college, I kind of felt lost. I was swimming some here and there and some on my own, but something was always missing. It wasn't until my late 20s that I found a USMS team with some great guys about 15 years older than me, one of which was a former Olympian, that really helped me understand what USMS was all about. The national meets, for example, have some really fast people, including some current and former Olympians, but then you have all kinds of other inspirational people there. For example, people will be swimming the 200 fly in their 90s! It's crazy awesome and inspiring, whether you are there trying to win events and put up lifetime best times or just swim your first 50 yard/meter race in a couple decades.

First thing is first, though - let's get through surgery! Good luck to you. I will keep you in my thoughts and prayers and check in to see how you're doing at some point once we're both on the other side.

Billy G  Jeff, that's awesome advice and something I had neither previously seen anyone suggest nor thought of myself. I will definitely look into it this coming week.

How far away are you from Cleveland? I know people go there from all over the country, but if I do go there, I'll need to learn about any "extra things" I may need to consider to travel across the country.

Jeff V.  Billy, If you have a chance to meet with CC staff cardiologist, Dr. Stewart, I highly recommend it! My local cardiologist plugged me into him early on and I think it was the best move I made. I live 2.5 hours away from Cleveland. I stayed at the Intercontinental Suites Hotel and thought it was an ideal location and set-up, especially if you have family that will be visiting. The hotel is within walking distance to the Clinic and the rooms are suite style (2 rooms), large bathroom and with an efficiency style kitchen. You can be alone if you want while your guests can visit in an adjoining room. Rates are reasonable. You probably won't need a rental car, but it might be nice to have one available if you want to hit Little Italy for a nice dinner (couple miles away) or check out the Rock-n-Roll Hall of Fame. Check out my journal for more info. and please contact me if you have any questions! Everything you have heard about the Clinic is true...! Let me know if you want to talk further and I can give you my cell or e-mail. Take care - Jeff

Billy G  Jeff, I'm on my way to L.A. right now to meet with a surgeon at Cedars-Sinai, but I'd love to talk later this week if you are available. I've already talked to a lot of people, but I figure the more people I talk to, the more I'll be fully prepared to get through everything and make the best decisions. You can email me at wgaines@gmail.com, and I can then give you my cell phone number. If anyone else comes across this post now or later and wants to email me for suggestions, questions, or just to talk, please feel free to do so.

Jacqueline Cook  Billy, thanks for sharing this information. I am in the process of interviewing several surgeons at different locations. Very helpful.

Billy G  Hi Elaine, thanks for the feedback. I'm actually usually very humble about everything and am not one to usually post on social media or sites like this because it makes me feel like I'm bragging or something. When I self-diagnosed my aortic regurgitation, however, this site and others made me so comfortable with what I thought the problem was and surgery to fix it, I felt the need to share some of what I've learned, especially when it adds to some of the more common things I've seen posted.

I live in Las Vegas, and my current health insurance limits me to surgeons in Las Vegas. I think there are some good surgeons in Vegas that could do a good job replacing the valve, but as another local surgeon told me, "Your valve might be repairable, but you aren't going to find a local surgeon with the skill to do it."

I will likely get on my girlfriend's health insurance plan in October or November (as a domestic partner). This will open up my options to the top surgeons in the country, at which point I will further explore the possibility of repair.

In the meantime, I am going to L.A. to pay out of pocket to meet with Dr. Trento, and my cardiologists is putting together records to send to the Cleveland Clinic.

Before I was even formally diagnosed, I was 95% certain I would go with a mechanical valve. After talking to my cardiologist (who initially suggested a tissue valve but now recommends mechanical), another surgeon friend (who had just coincidentally spent a week and a half repairing a patient's abdomen from internal bleeding from warfarin), and reading more stories from younger patients with tissue valves, I'm probably now leaning towards a mechanical valve (if it's not repairable) over a tissue valve by maybe 70%.

I'm really interested to get the perspective from some of the top surgeons at Cedars-Sinai, Cleveland Clinic, and perhaps elsewhere. Besides wanting their opinions on repair, I am interested in their opinions on the mechanical/tissue options if it is not repairable. My biggest concern with tissue valves is that I feel like I'm more active than most people. I sometimes workout 12-15 times per week. This is a more rare example because I often get too busy to sustain this type of routine, but I have had spurts where I'll swim 4,000-6,000 yards per day 6 days per week, run 3-5 miles 2-3 times per week, and do dryland/weights/yoga up to 5 days per week. My understanding is that tissue valve will not structurally wear out faster, but it doesn't seem like anyone fully understands why tissue valves get calcified earlier in younger patients.

Billy G  By the way, Elaine, once you were ready to set a date for surgery, how long did you have to wait for Dr. Roselli to have a date open for surgery?

Elaine Cutri  I sent my medical records to CC and they were reviewed by Dr. Roselli. I got feedback from his nurse within 2 weeks, maybe less. Then I made an appointment to get an exam. That took a while to get an appointment. Once I saw him, I still was not an urgent case, so it was 6-8 weeks at the earliest. I chose 4 months out to fit in with my schedule. That worked fine, but I'm glad I didn't wait any longer. The artery tissue turned out to be more fragile than expected. The main purpose of my surgery was an aorta aneurysm.

Insurance coverage: I was surprised to find out that Cleveland Clinic was in my network of available surgeon/facility with Anthem PPO (I live in the So Calif. area). They are also considered a center of excellence and a preferred provider for Walmart employees. I found this out after the fact. I was very pleased with my care by the surgeon and the entire team of clinicians.

kristin ott  Hi Billy- once you get your questions answered I would love to hear what the Dr's opinions are- every case is different but I'm always open to hearing others opinions. I am 5 days post op from AVR Surgery and as you will b told it will b a personal choice for everyone in what they choose to b replaced with. I didn't want to b on blood thinners and it bothered me to know I would hear it "tick" but that's just me. Good luck to you in your research it can get overwhelming at times but you will know when you are comfortable with your decision. When I finally made mine all was good. Peace to you

Billy G  Thanks Kristin! I'm not saying my state of mind won't change, but I've been at peace with everything so far. I'm an optimistic person that doesn't dwell on things I can't change or control, so whenever I start to have feelings of, "I really don't want to have surgery," I remind myself I have no choice if I want to live the life I want to live. Thankfully, I'm not overwhelmed at all. I kind of laugh at this, but the experience has almost been fun for me. Of course it's not fun, but I like learning new things, and solving problems. So while I wouldn't want anyone, including myself, to go through with this, it's been "fun" to change up my day-to-day and solve a new problem. We'll see how much "fun" I'm having when I'm recovering. :)

In Vegas, the one surgeon I would probably choose basically said he would not even attempt a repair and that I would want a mechanical valve. I am not sure how he would respond if I argued for a tissue valve, but I didn't feel like he'd give me the perspective I would need to sway me that way anyway. While he is a great surgeon, I've heard he is conservative, meaning he avoids high-risk patients and takes the approach with the best probability of a lifelong solution. In other words, he won't do a repair that may fail in 10+ years and doesn't like tissue valves in younger patients because it would almost certainly mean another surgery.

Hopefully I'll have a better sense of all things (e.g., surgeon, possibility of repair, final valve selection) within a few weeks. I'd do it all today if I could, but the guys I want to meet with keep busy.