Randy's Guestbook

Hi Randy, I too have BAV and have progressed to the severe stage. I am mostly asymptomatic as well. I have worked out for years. Yes, my cardio system holds me back and I can't endure as much as my peers but I still get after it. Well, under this month. Now I'm afraid to make it worse so I am taking it very easy. I was set on having TAVR because basically, I'm a chicken!!!! But looks like my insurance said, Not so fast! They consider it experimental for low risk patients still. But after I met with my cardiologist, he suggested i go ahead with the open heart now and with a bio valve so that they have time to perfect the TAVR. Going this route now will allow me to have the TAVR done in the future. I am still going to press for minimally invasive surgery whether that be mini sternotomy or through my side. My doctor had always said he would send me to Houston for my surgery (I live in San Antonio). So when I heard it was time, I started researching the best hospitals and surgeons in Texas. I found two that I was interested in. Dr. Gerald Lawrie in Houston and Dr. William Ryan in Plano. When I met with my cardio, I told him that I had found someone after doing he research and he asked me who it was and when I said Dr. Lawrie, he was happy. Dr. Lawrie is the one he was going to refer me to. (He replaced Barbara Bush's aorta back in 2009) I am not traveling that far, thank goodness, but I'm still afraid of the 3 + hour ride back home. My parents are coming out, my grown son will be there as well as my two best friends. We have decided to rent a house through Airbnb rather than my family having to live in a hotel for a week or so. I'm saying all this and I haven't even met Dr. Lawrie yet!!! I go Tuesday and I pray I like him and that we are on the same page as far as treatment. My cardio told me I'm the boss but still it would be nice to know I'm making the RIGHT decision. I wish you the best in your research and hope you find a surgeon you are happy with.

Randy - Researching is absolutely the key to going into your procedure with confidence! My twin sister lives in Newport Beach and I considered Dr. Alfredo Trento at Cedars-Sinai for my mitral valve surgery prior to making my final choice. Although, I didn't proceed with him, he's definitely worth considering. Dr. Trento is known world-wide for his valve surgeries and has performed procedures on many prominent patients from across the globe. Best of luck in your search.

Hi Randy, you asked for input.... I'm a few years older than you are. I'm in San Diego. My cardiologists are at Scripps. I also have a bicuspid valve, but in addition to the valve also will likely need repair of the root, ascending aorta and possibly the arch. My valve is not stenotic and I am asymptomatic, but my LV has started showing signs of stress and my aneurysm numbers have gotten everybody's attention. I'm not sure when my surgery will be, but based on the recent round of numbers I am actively consulting with surgeons. My take: After OVER-researching this for years, reading every review on Adam's site and other forums (I got Adam's book when it was first published – that's how long I have been educating myself!) and sitting patiently in the waiting room (no rush to get to the front of the line) I have concluded that plenty of people have great outcomes at places far and wide. They love their surgeons and outcomes in New York, Chicago, Houston, Nashville, Indianapolis, Los Angeles, SanDiego, Detroit – and everywhere in between. Every surgeon and hospital has complications. Most people who get these surgeries, sadly, are not on these forums but I'm guessing most people also sail through these procedures and get on with their lives - often with "bumps in the road." Some people can travel; some can't. I can so I set up my criteria (realizing that what works for me may not be necessary or important to others): My No. 1 priority is volume - they must have volume in valves, with valves and the other procedures I need as the primary part of their practice. (Not primarily bypasses.) I'm also looking for solid, stable teams that have worked closely with the surgeon for years. I'm also keenly interested in aftercare (ICU, step-down) – I want a place where there are LOTS of valve (etc) patients with stable nursing staffs. Finally, I'm looking for a place where there is easy access to a hotel or other lodging for my wife (and shorter period of time, family), who will be a wreck. Given MY criteria, Cleveland Clinic is at the top of that list. There is a hotel connected to the main facility and one of my cardiologists is a former Scripps doctor with connections. They do more valves and complicated procedures than anybody. We have consulted loosely with Dr. Lars Svensson in the past, but we are sending another round of films this week for a more formal review – and will likely set up an in-person consult, depending on their suggestion. (The downside - no non-stops from San Diego, only LAX, and I'll only do a nonstop for this.) CC also has a reputation, for better or worse, for being somewhat of impersonal machine. (You're going there for a reason - to get the job done.) We are also sending films to Dr. Luis Castro at Sequoia Hospital in Redwood City. He gets fantastic reviews here, and he spent about 45 minutes on the phone with me. Sequoia doesn't check all of my boxes, but if the arch isn't involved I would give it serious consideration. It will be interesting to see what he suggests after reviewing the films. Finally, because of family connections (plus there's a non-stop flight) we are pondering a final consult with Dr. Albert Pochettino at Mayo. I stumbled on a video he put up on the importance of repairing the arch during the entire procedure if it is symptomatic. Considering my situation, I found his interest in the arch an important factor. I'm interested in seeing if multiple surgeons reach the same conclusion and would take the same approach. After all, this is MY valve and aorta. Also, on Adam's FB page there is an interesting thread with hundreds of responses to this question: "Anyone have surgery, no big issues and now live a happy normal life?" https://www.facebook.com/groups/15618633322/permalink/10157232988438323/ The comments are encouraging. Best of luck and feel free to reach out any time to compare notes. Herb

Hey Randy, Welcome to our community! I hope the educational info and great people here help you best take care of your bicuspid aortic valve. If you need anything, please let me know! Adam