Ginger (in the Land of Oz!) posted a note for Royce that says:
I was born with a bicuspid valve and knew about ten years ago that it would eventually have to be operated on. So think of it -- your wait is short!! I think you are smart to be heading to Cleveland, and believe what you are doing is smart!
Forget the dead man walking stuff! Think of it more as having a bad impacted and infected tooth with abcess being removed and replaced with something that will not be dragging you down. There is light at the end of the tunnel.
I only recently learned that my time for surgery is near, but am just taking things as they come and doing what is necessary step by step.
This is a great site and there are lots of great people who have been or will be where you are on the path today! They are an inspiring and encouraging bunch, but they don't pull punches in telliing how it is.
The Learning Center is also packed with information. Knowledge is power, The more you know and understand, the stronger you will be and you will make decisions based on fact. Seems right to me, anyway.
Welcome and don't hesitate to say what you are feeling and to ask questions. You will look back and be grateful you have your replacement or repair and, from what I hear, will be surprised once you recover at how much more energy and endurance you will have.
Meredith Bray posted a note for Royce that says:
I'm 3 months post op, BAV. I chose a mechanical valve. Heart surgery ain't easy, but it's worth it. I feel better now than I've felt in 5-7 years. I kept telling myself I didn't feel *that* slow & tired. Looking back, I was feeling that slow & tired, and probably more.
I happy, and I'm healthy.
A walking miracle, proof that science and religion work together.
Richard Volpe posted a note for Royce that says:
Hello Royce, Dead man walking??? I can tell you my experience and it may help you along the way. Were very fortunate to be living in these times. I would say to myself before surgery thank god its 2013 thank god. I went to the Cleveland Clinic to be with the best team in the world. Dr. Gillinov. Same surgeon Robin Williams actor/ comedian had. I said to myself Williams is Rich & Famous why is he going to the CC and choosing Dr. Gillinov he can go anywhere in the world and have the best of the best. After my research it was easy to say Dr. Gillinov was going to be my surgeon. I learned that the fear is worse then the reality when you go through this journey. I had two heart surgeries in 3 1/2 years. Both with Dr. Gillinov. I was born with a Bicuspid valve. In 2010 I had my 1st surgery and received a cow tissue valve. They said it would last 10 to 15 years Bullshit. Why I went with a tissue valve I have no idea, maybe I'm just dumb. Back in 2013 they replaced my replacement valve with a Mechanical Valve, a valve that is DESIGNED for LIFE!!! Choosing a tissue valve for round 1 and knowing that I would have to go through another heart surgery in my life I must have been out of my mind. I Should of went with a Mechanical valve fist time around. They try to scare you a little about Coumadin but its really no big deal. I wish you all the best and remember we're very lucky to be living in these times very lucky.
Clare Auten posted a note for Royce that says:
My diagnosis was a total shock too. Met with cardiologist on 12/20/13 and surgery on 1/9/14. Waiting is hard. Recovery takes patience. I am almost 5 months into recovery. I painted my daughter's room last Sat and mowed half the yard on Sun. I was tired but it was a "normal" kind of tired. Planning on doing my first 5K post surgery on Sun. You can do this! Take it slow, the first two weeks will be hard but patience is key.
Marci Stanwix posted a note for Royce that says:
I know this has to be a complete and utter shock to you and your family. Just the thought of the surgery can make anyone want to run away and hide, hoping they won't find you so you don't have to go through with it. I knew all my life that one day I would have to go through with operation and in some ways that is easier and some ways harder. It always hung over me as compared to the jolt you feel. In the end I am just grateful to have had the chance to fix it before it became a tragedy.
Feel free to come here to vent/cry/scream as we all understand.
I am almost 6 months out and looking back I can honestly say the waiting was the hardest part.
Ricki Shine posted a note for Royce that says:
I, too, was born with a bicuspid valve and am now 4 years post-surgery. I understand how upsetting the diagnosis can be but let me assure you that you are far from a "dead-man walking." We are very lucky to have this condition now, rather than years ago when people like my grandfather died of it at a young age because there was no surgery to fix it.
BAV is very fixable and though I can think of many things I'd rather do, the surgery wasn't nearly as bad as I anticipated. I had my surgery at the Cleveland Clinic which was phenomenal. I had no pain (except in my back and shoulders - if you have your surgery there, take advantage of the free massages!) and my recovery was quite smooth. The complication rate from the surgery is virtually zero. All in all, I'd choose valve replacement over lots of other things my friends have gone through in recent years.
Positive attitude makes a HUGE difference going through this process. Keep a smile on your face, think good thoughts, and you'll do fine!
Bill Bard posted a note for Royce that says:
I hope you have gotten to read Adam's book on Heart Valve Surgery. I had a similar diagnosis a year ago this month and had surgery last 25 June. I had a surgeon who was terrific and in some ways this surgery was much easier than I had expected. Recovery is key, but know that everyone here is with you for the duration! Best of luck.
Frank posted a note for Royce that says:
Hi Royce, I had an aortic valve replacement five years ago and thankfully doing well. With all the technology and replacement option these days, there is a very good chance of continuing a normal life. I picked the Edwards Pericardal 3300TFX valve after consulting a few cardiologists. Best of luck, and speedy recovery. Frank from Los Angeles, California
Ruth Valenzuela posted a note for Royce that says:
I totally understand your fears but if you continue to read the journals of others that have already had their surgeries, you will feel encouraged and empowered that you can do this! Of course, depending on God's strength and healing powers is most important...
David Augustus posted a note for Royce that says:
Royce, I know how you are feeling right now and it will take a few things to get your head wrapped around what you are facing. Two weeks ago, I had my BAV replaced with a mechanical valve and my aortic root through my ascending arch.
I would make sure you see at least two surgeons and make sure that you feel good about the one you pick. I saw two and they were completly different on bedside manner and how they were going to approach my surgery. You have moments of "fear and tears" between now and when you meet your surgeon.
So find the right surgeon for you and it will calm the nerves of having to get open heart surgery. You can read my journey as I'm still on Recovery Road. Good luck with your journey as you do great!