Doctor And Mountain Climber, Leo Hernandez, Recovering From Bicuspid Valve Replacement

Iam scheduled for an aortic valve replacement on Feb. 6 2009. Thank you for your comments. This is the first that I have heard any positive comments about the procedure. Despite the fact that I am a thoracic surgeon, due to all the negative comments about pain and length of recovery, I have become quite anxious and depressed. I feel better after reading your comments! Thank you.

Leo,
Such a great news to hear how fast you have recovered.
I am interested to know why your minamally invassive was from your middle of your chase rather than samall incission on the right side of the chase, do you know the diff and why.
I iam nterested with minamally invassive and my surgeon suggest a small incision under the right breast. I hear there is less chance for bleeding and infection. Was your surgery via robotic or not?
Thank you,
Donna

Hello Dr. Hernandez,
Congratulations on your recent successful surgery. Like you, I too have a bicuspid aortic valve. I am 49 years old and am an anesthesiologist in Kettering, Ohio, near Dayton. I am very active too. I compete in bicycle races and triathlons and have completed 5 marathons. About three years ago I started having chest discomfort when I ran, not during biking or swimming. I recently had an echo and stress test. My valve area is .8cm2 to 1.2cm2, depending on how you measure. My cardiologist feels that he does not have a complete picture of my situation, so I am scheduled for a cardiac cath on February 12. I hope this gives me a better idea, because I feel I’ll have my valve replaced sooner rather than later.
I wish a speedy and complete recovery.

Paul

Hi Leo,

I read with interest about your AVR because of the many similarities with my AVR. Although I’m 75 now and haven’t been doing much mountain climbing in recent years, I too have climbed Whitney, Baldy, hundreds of peaks above 5000 ft. in S. Cal, and about 50 major peaks in the Sierra. My operation was also done by Dr. Shemin at UCLA on Oct 24 using the same type of bovine replacement valve. My scar used to look like yours but is heeling nicely now.

Unfortunately, I didn’t know I needed AVR untill I suddenly passed out one day in August while walking in my neighborhood. I fell and smashed my face on the pavement, incurring multiple skull fractures and broken teeth. When I woke up in the emergency room, a cardiologist gave me the bad news. What a shock! This was the first time I was in a hospital since birth.

I’m about halfway through cardiac rehab at St Mary’s in Long Beach (3x/week for 36 sessions). My progress has been hampered by some viral and bacterial infections in sinuses, lungs and bladder. I still don’t feel as strong as I was before the operation. For me the road to recovery has been long and slow. In February, I need to start dental reconstruction.

Dr. Shemin said I would be able to climb mountains again – we’ll see.

Leo, congratulation on a successful procedure and thanks so much for your post and for sharing so completely your background and the outcome to date. I am slated to have an AVR sometime in the next few weeks, we go to talk with the surgeon on 12 Feb. Since the initial diagnosis of a stenotic aortic valve this past mid-November, there was some conflict in the various tests (echo, nuclear stress, catherization, and TEE) that just this past week was finally resolved via a combined stress-echo that showed the pressure gradient at 100. Previous tests had showed a valve area of something between .6 and .8, but with the pressure gradient of 27. There was a question as to whether or not the valve was causing my symptoms, shortness of breath and chest pain after relatively little exertion, or were they possibly being caused by some lung condition. As the final confirmation, we did a pulmonary function test that showed all numbers and function in the normal ranges. I have shared all of this to simply say that this blog and your post in particular have helped me to feel more at ease regarding the whole process. I wish you all the best and continued success in your recovery and rehab.

Regards,
Randy

Leo,

Congratulations on your successful AVR and recovery. I am 52 and also had my aortic valve replaced with an Edwards Lifesciences Bovine tissue valve on January 6, 2009. This was done by Dr. Ronald Kirschner at Rochester General Hospital, Rochester NY. I was diagnosed with Arortic Insufficinecy in June, 1998 when I was 41 and was told that I would have to have my valve eventually replaced in 10-15 years. Well I made it to almost 11 years. I am approaching my fourth week of recovery and am just coming off of (1) vicodin every four hours. I am walking in the mall because it is so cold here in NY up to 45 minutes every day and plan on returning to work on February 2.

I am curious about the discussion you had with your surgeon regarding the minimally invasive approach. When I discussed this with my surgeon he told me that he could do a minimally invasive approach but felt that there were some trade off’s. If he did the minimally invasive sternectomy he felt that he would have some space restriction in replacing the valve and would have to move things around more to replace the valve. If I went with the conventional sternectomy there would be minimal manipulation and a lower percentage of post op complications. I took the conservitive approach (8.25″ incision) and went with the conventional sternctomy. I believe this is why my sternum pain is just beginning to subside into my fourth week. I would be interested in your thoughts on this.

The recovery is going much better than I expected based on everything I read before the operation. Some of the things I read about such as cardiac depression and pump head never took place. The biggest piece of advice I would give to anyone scheduled to have AVR is not to identify with other peoples personal experiences that you read about. More than likely, none of the post op negative things that you read about will never happen to you. Being a type ‘A” personality I had 10 years to read everything I could get my hands on including Adam Pick’s Guide to Heart Valve Surgery, which is excellent. Hopefully the Edwards Bovine Valve will last you and I 15-20 years. I really am counting on 20 until it needs to be replaced again. By then, I hope there is a truely perfected minimally invasive procedure using techniques such as transcatheter AVR etc, which are just in their infancy. I would be very interested in maintaining coorespondence with you over the the upcomming years to see how a fellow Edwards Bovine Tissue valve comrade is doing.

Regards,

Jim

Congratulations on such a successful experience! When I was 10 weeks post-op I went back to work and felt absolutely great but over-did it somehow. My heart is great but my torso hurts. Maybe using the computer mouse too much or driving my truck too much or carrying grocery bags up 2 flights of stairs or jumping out of bed wrong – whatever. But just a little word of caution: pace yourself and dive back into it all gradually. I now have a battle with tendonitis in my back, neck, and especially my shoulders and this started by the end of my first week back to work. I go to PT. It really helps so I know I’ll be fine I just have to be patient (what a great word!). Best wishes and thank you for sharing your excellent story.

Leo, it was my pleasure to read your blog posting. Minimally invasive approaches to cardiac surgery provided you with a smooth and speedy recovery. Less invasive approaches specially was the da Vinci Robot for mitral valve repairs are extremely successful for surgeon expert in this area. It is my standard approach when feasible in all patients undergoing valve surgery.
I was privileged to be your surgeon at our nationally renowned cardiac surgery unit at UCLA. We both strive to scale great summits. Your story will help and inspire others facing valve surgery. On your birthday I led a team to ensure that you have many more birthdays. Today you made my day as I read your story. I wish you and your family all the best for your heath and happiness.

Sincerely,
Richard J. Shemin,MD
Ronald Reagan UCLA Medical Center
Professor and Chairman of Cardiothoracic Surgery.
310 206 8232
rshemin@mednet.ucla.edu

Leo… Bravo! to you and your article… I am scheduled for AVR on February 25, at Massachusetts General. Having an MRI and meeting with the surgeon on February 9. Until recently, my cardiologist strongly recommended the St. Jude mechanical. At my last visit, he “softened up”… no pun intended… and suggested discussing a tissue valve with the surgeon. I’m psyched! Although I still have moemnts of anxiety, I’m thinking through the operation to a time when I can be as active as I once was. Thanks for sharing your expereince. It was timely.
One other thing… a friend of mine gave me some of the best advice…
he said “Rich.. just don’t walk toward the white light” I still laugh at that everytime I think of it!

Hi Leo,

I am VERY inspired by your story! How is your healing going? I am experiencing what I believe to be aortic valve disease at the age of 42. I have been extremely SOB for the past month and experience the “feeling of not being able to go on” and almost fainting 3 times. Once in the operating room (I am a podiatric surgeon) and twice on the ski lift. I am wondering if you know any docs in Portland, Maine or Boston, Mass who specialize in this area. My EKG shows non specific ST-T wave changes in the inferolateral lead and my regular echo shows +1 Aortic valve Sclerosis. My peak flow is 480 and the pulmonologist thinks it’s not asthma although my inhalers do help me.

I am wondering what other tests you had done to get your complete diagnosis and work up!

Again, your story is amazing and I hope to see photos of you climbing again soon. I am (was until one month ago) an avid power boater, water skier, and snow skier, and I love to run.

Take care and heal fast!

Regards,
Shannon Meredith
Portland, ME
ocnblu777@aol.com

Dear leo,
My goodness you are so brave and nonchalant about this surgery and honestly I did not expect for you to go to work so soon, please do not over do it and as always our prayers are with you.
Love and God bless,
Eduardo & Tere

Dr. Leo Hernandez . I just read with great deal about of your story
I recently got diagnosed with BAV disease , I am 45 years old living in Northern California around San Francisco area .
At first when I was told that I have the BAV disease ,I did not even know what it was I just knew it was serious . Now the more I read the more I became puzzled with a load of questions and getting stressed out . I hole I will find someone skillful and great Dr like you. Eventually I know I will have the surgery Some day .
You may suggest if I have any questions regarding my BAV disease your answer might be best if I talk to my own Dr which I agree with you entirely .And yet it would not hurt to hear any thing from some one who has done avery successfull surgery a few weeks ago.
It is very cordial of you to share your story with the world .I really admire you for that .I wish you a full recovery and can not wait to see your picture as you are climbing ance more .

Sam

Hi Leo,

So great to hear your story. I had no idea you had surgery until Patricia sent me the link to this article. You look amazing and I know that you are the kind of person that once your put your mind to something you give it 110%. I m sure will be mountain climbing vigorously by spring.

Lots of Love,
Gina

Dr. Hernandez,

WOW!!!

Your story is AMAZING! I had an opportunity to learn more about you and about your “journey” that lead up to your surgery.

Thank you for sharing this article with me.

I wish you the very best!

Debbie

i read your story and iam facing it..Ifound out 3 weeks ago that mt heart was inlarged and 7 days ago that i need to see a spcialist on tuesday and iam running scared…My doc told me when he callt you need to see a spe.. well and that my a..valve is bad well i have copd and asthma i just hope that that i find a good Doctor and that i might not need it soon and if i do that all will be well your site helped me a lot and iam writing for the first time good things Iam glad that you were blessed with an awesome doctor .. and you are still blessed Iam praying for the same for me thanks for ur blog it has been a blessing to me as well

Hi Leo:

I am also an active dermatologist with a bicuspid aortic valve that needs replaced. I am exploring options and am very interested in how things have worked out for you now several months post op.

Thanks for sharing your experience to date.

Happy trails,

Brian Nash

Hi Leo

I am a recently retired dermatologist who lives in Colorado Springs. I also have a bicuspid aortic valve with pure aortic regurgitation. I am 66 and my cardiologist tells me it is time to have it replaced. My surgery date is June 1 at Mayo in Rochester by Hartsel V Schaff MD. I read your comments with interest. How much sternal/chest pain did you have immediately post operatively? Any other input would be much appreciated. I don’t know yet whether Dr Schaff will do a total or partial sternotomy. Thankyou for writing your note.

Gary

Hi Leo and everybody else out there. I have a pretty long story but what I really want to say is how disappointed I have been with the medical world in the past 3 years since I really felt something was not right and it was not a simple thing. It took me continually looking asking and thinking about what the symptoms were and if they were all in my head. As in ” just stress”. I am a 57 year old attorney sole practioner with a very busy practice and a teenage boy. I compete in martial arts that involves sparing and submission grappling. I do Olympic weightlifting several times a week and love to snowboard and bike ride. You know there is a reason my participation has go e down in the last few years but I thought I was just getting old. Which ,let’s face it, I am. I don’t even surf anymore. I had heart palpitations at rest. As high as 150. I couldn’t catch my breath when I wrestled with kids I could have dominated. I had to tap out many times even when I was ahead. I wrestled in high school a college. I scuba dive. I hike and a few years climbed machu piccu at 5 am with my son. But the feeling that something was wrong got no info. I was given an inhaler. Told to take it easy. Even after I went to the er and was finally told following my second echo ( was told nothing wrong on The first one 5 years earlier) that I had a bicuspid valve. Congenital. So it’s not like it wasn’t there earlier. Even the cardio in the hospital never gave me a diagnosis or connected my palpitations and sob with this finding. Worse he gave me no future plan or things to think about. He said I was not a surgical candidate ( what surgery he was thinking about he never said) and said I had such a low heart rate already ( athletes heart he said) medicine would make me miserable. I spoke with another cardio after that no help. When I applied for life ins they said it would cost more because of my aortic valve history. I say ” what history”. My family dr says let’s do another echo. They probably made a mistake. By this time the echo I had a year before did say I had an enlarged aorta and mild aortic regurgitation. Of course at the time I had no idea what that meant and no one put it together. He did another echo and said yea you have a slightly enlarged aorta and you may need a valve replaced someday. It’s no big deal. They do them through the vein. Arnold had one. Let’s watch it and keep your heart rate under 130″. I say why can’t I get a new valve now he says you don’t need one. I am not happy. I know I am not good in the cardio area. ( I did a mountain bike ride that should have been only a minor push and my heart goes to 225 on my garmiin and I about fell off the bike. I stopped 4 times. Never had that. So last week I found by myself another cardio who read the records and I said what is wrong and finally someone could tell me. ” you have bicuspid aortic valve syndrome”. All the earmarks. I am impressed. He says I don’t want to sell you something Khoi dont want but you need a more recent echo. I say can you do one now. He says sure and does it himself right there. For the FIRST TIME I UNDERSTAND THE DANGER OF THIS. It’s not the shortness of breath or palpitations it’s the amount of blood back flowing into the heart that will kill me eventually. The heart has to stretch to pump that extra blood and eventually it doesn’t return to its original size. That’s bad. But since my heart was in such good condition no one wanted to fix or deal with the problem that would eventually kill me. That’s if the alternative- a boringly sedative life had in store- did first. So he says I have severe regurgitation. He showed me all the blood flowing back into the heart when it should have been pumped to the rest of the body. And this was while I am lying down with a resting hr of 60 or less! So for the first time I hear of a test called transesopogeal (?) echo where they stick a camera down my throat and look. No one has said I need the surgery YET but I know if I don’t do it my life will suck. I get the test on Monday and I already have 4 surgeons to call in LA including dr Shemin for opinions. My dad told me you have to be your own dr. Not that you don’t go to Drs but you can’t depend on them to make sure you get what you need to stay alive and well. I am so glad I didn’t give up trying to figure out what to do. All you out there who feel good because your dr says you are fine you don’t need surgery really ask yourselves what you want from your life and do you want to wait till there is permanent heart damage before you get it fixed or should you prepare and plan the inevitable now while you are healthy and insured. stay tuned. All the best Leo and hope to see you around west La. Jeff

I’m writing about my upcoming surgery. I’m in the final decision stages. I have a history of aortic valve replacement (St. Jude)24 years ago. Recently found out that my ascending aorta is dilated to approx. 5.9cm. I need an aortic root surgery with aortic valve replacement. With my research I have found out that it’s not an easy surgery, especially since it’s a redo. I am struggling with a choice of surgeons at this time. What should I be looking for in an appropriate cardiothoracic surgeon? Is it volume of redo surgeries, aortic root replacement, experience, training, skills, success? I’m still active with work and family. I hope to resume my life after surgery. I’m only 43 years old. Any input would be appreciated. Thanks.

Hi there Chido. About Drs it’s just like ant relationship. You are trusting that person with your life so the most important element is you must totally trust and feel comfortable with that person. You can narrow the field to Drs who have done 5000 or more heart surgeries and just seeif you can trust and believe what the dr is telling you and how he ( or she, although I have yet to read about any female heart surgeons on this blog) answers your questions. If you have to travel to interview more Drs don’t hesitate to do that. Of course try and talk to them on the phone and see if you can make a connection that way. How you are taken care of by their office says slot about how you will be taken care of by the dr. I had heard great things about Dr Stearns at USC ( he was Adam’s surgeon) and I had tried to meet with him.  It took me 10 phone calls to get anyone to even return my call. I faxed all my records to the surgeons assistant that day and personally delivered the additional records the next week. I called and e mailed another 5 times AND NEVER EVEN GOT A CALL BACK. I just crossed him off my list. He might take good care of some people but my experience with him was not good. I can only imagine what the chances of someone older and less persuasive than myself would be to get to see a dr like that for a surgery they need. I was lucky to get an appointment with Richard Shemin at UCLA right near where I live. The same great surgeon who fixed Leo’s heart. I got a call at noon one day that dr Shemin was out of surgery early and could I come in that day?  I got there at 12:30 and saw him at 3:30 but I could tell right away he was a nice guy. I had interviewed 3 other surgeons and had 2 more but I decided the next day I would use dr Shemin. His credentials are impeccable and he is easy to talk to. Make sure you have done your homework and know what questions you need answered.

I believe you have a mechanical valve?  Would you like to get off the blood thinners?  Consider a tissue valve. And they may still be able to do your proceedure through a smaller incision. Good luck

Jeff Pheffer

Hi! My son is 27 years of age and was diagnosed with bicuspid aortic valve disease with regurgitation. He is having surgery on April 4, and using a mechanical valve.
It was encouraging to read how elk you have done. The doctors at Mount Sinai Hospital, in New York City have given him a great prognosis. We are anxious to have the surgery and get to the post-op recovery.
Do you have any tips to offer for the recovery process?

Warmest regards,
Deborah Lord
Caregiver (Mom)