Amy's Guestbook

Hi Amy, I saw your post and wanted to offer you encouragement. I am 59 and two years ago I was in your shoes, facing a mitral valve repair and also a tricuspid valve repair. I had my surgery in Boston at the Brigham and Women's hospital with Dr. Shekar 12/10/18. I, too, was followed by my doctors when I was in my teens and was finally referred to a cardiologist in my 40's. I was told I had to have the surgery at some point and then the time came. I was asymptomatic too and was working up until two months before my surgery. I want to say to you that the waiting to have the surgery is the hardest part . I found this wonderful site and was encouraged by the stories I read. It gave me support and hope to deal with what I had to do. You will be in the best hands and with experts and they will take excellent care of you. My doctor told me that "I was good to go" and am now 2 years post op and running around with my granddaughter, walking 4 miles , 3 times a week with my friends, mowing the lawn and just enjoying life. You will too! You just have to get through this "fixing part" for your heart. Everyone is different in their recovery after heart surgery, so just do what the doctors tell you, pacing wise, and you will be fine. I will tell you that you should not push yourself when you get home and take it easy and let your body heal. I attended cardiac rehab two months after my surgery and that was very helpful in pacing myself and getting me back into excercise. Please pace yourself...that is my recommendation. Best of luck to you and I know you will do great!! All the best

your picture of you and your husband looks your young it reminds me about 16 years old i went to philadelphia hospital who nows i had 2 openheart surgery cedercresthospital in pa but we keep going on

Hi Amy- I did mitral valve repair minimally invasive procedure 2 years ago at NYU Langone. ISame age as you. I was also asymptomatic and very active. It’s hard to believe it’s been 2 years or that I even went through a 5 hour surgery. It is definitely in the rear view mirror now which is much better then the waiting and watching and worrying about it!! The anticipation was probably the toughest part. Good luck🙏🏻Before you know it will be in your rear view mirror. Also what is pumphead never heard that one. best, Mara

Hi Amy: I had much the same called exercise induced regurgitation. Rare. Two years ago I had AVR and repair of mitral and tricuspid valves via open heart. I was a very active 68. Life had degenerated due to symptoms getting much worse. Now I walk 3miles a day at 8,000 ft altitude with 30 year olds. Rehab takes time but hang in you will be better than ever!

Amy, good luck with your upcoming surgery. I am seventy-seven and I had surgery in December 2020 to replace my mitral valve and repair the tricuspid valve. I also had the MAZE procedure to eliminate A-Fib. I really feel the surgery saved my life. I had a slow recovery, but I am now doing very well. I am active and back playing tennis three times a week. I know you will do just fine and are in good hands with your surgeon. Keep a positive attitude and take your time with the recovery.

I had aortic v & mitral v replaced age 74 at Cleveland Clinic & at age 81.7 still biking comfortably 18 miles with no stress or shortness of breath. Like you my valves leaked from age 18 up to age 74 and was not symptomatic during this very long watch and wait period. No pumphead experienced and have had over 30 hours of anesthesia (7 surgeries) since age 74. I still repair very complex 100 yr. old clock movements and enjoy many engineering and science topics. I wish you well in your journey and know that you are in excellent care at Cleveland Clinic.

Hello to everyone reading. Something I don't see too much, at least I have not noticed, is to get vaccinated for flu and pneumonia well before surgery. I'm thinking they may recommend covid vaccine too, but since there is a significant risk of pneumonia, may be worth considering.

PS. Cedars-Sinai in Los Angeles is not yet listed as a Mitral Valve Reference Center, but I think that's a bureaucratic issue. They are very good on robotic mitral valve repair. Dr. Joanna Chickwe is wonderful and has written about concomitant mitral and tricuspid repair. Different hospitals/surgeons seem to have at least somewhat different thresholds for who is eligible for the robot-assisted surgery. The most important thing is to go with a surgeon who feels comfortable with their way of doing the repair. That said, if Cleveland Clinic tells you that you aren't eligible but you absolutely don't want any kind of sternotomy, mini or otherwise, you might get a second opinion at that point rather than go forward. Mitral valve surgery is rarely an emergency.

Hello Amy, I had my mitral valve repaired at Cleveland clinic in Weston, Fl. Dr. Navia and his team. He used mini sternotomy, not robotic. I would highly recommend his team.

Hi Amy. I had robotic mitral valve repair three weeks ago in Atlanta with Dr. Douglas Murphy. I live in Massachusetts. I was concerned about the possibility of getting down there a few days before surgery only to learn at that time that I wasn't eligible for the robot assisted surgery. I knew that if I wasn't eligible for the robot assisted that I would want to have the surgery closer to home. So what I did was schedule a tentative surgery date about six weeks in advance, and then I arranged to go down about a month in advance for the heart cath and CT scans that told the doctor whether I was eligible. It turned out that I was eligible for the robot-assisted surgery, and I'm glad I knew that before traveling such a long distance. My surgery went well. It's never too late to delay the surgery to make sure you're eligible for the surgery you want. If your surgeon doesn't want to work with you on this, I'd suggest getting a new surgeon. Best wishes to you.

Amy, I was in the same place last fall, & had the mitral & tricuspid valves repaired. I also had the left atrial appendage removed (that’s the area of the heart that throws off clots). During surgery they noticed my left ventricular was enlarged. To shrink back & I recovered quickly & am hiking & thriving now. Surgeon was Dr Luis Castro at Sequoia Hospital in Redwood City, CA, using a mini sternotomy. You’ll feel soo much better after this procedure. I Wish you the best of luck!

Hi Amy, I had robotic MVP repair at Cleveland Clinic 10 years ago by Dr Marc Gillinov. I’m doing great and still very active (hike, gym, peloton) at 64. Rest assured that the staff at Cleveland Clinic is skilled and very compassionate. Trust your surgeon and you will be fine. I had more energy in my 50s following my surgery than in my 40s! I’ll be praying for you. Ken

Amy, thanks for sharing your story. My prayers are with you and the surgical team! I’m hoping that you recover quickly and are comfortable throughout the process. I had open heart (SAVR) aortic valve replacement surgery in 2016.

Hi Amy, Sending a note of support for your upcoming surgery. I also had severe regurgitation and needed both mitral valve and tricuspid repair. Dr. Adams, Mount Sinai, NYC Two for the price of one! My surgery was 6/23/20 which is exactly one year before you joined this group. Wishing you the best of luck and an easy recovery. If you have any specific questions, feel free to reach out.

Dr. Burns replaced my friend's BAV last September and also two stents. Not robotic- open heart due to the stents, etc. He is 70 and in excellent health. My friends said Dr. Burns and Cleveland Clinic were awesome - best pre-op, best post-op care and they will be very straightforward telling you the different options and what they recommend. I plan to have Dr. Burns replace my BAV when needed- I am 64 and asymptomatic but the stenosis has now reached the severe range.

Hi Amy, As the newest member of our community... Welcome!!! I hope the educational information and wonderful people here will help you along your journey to a healthy heart! If you need anything, please let me know. I'm here to help!