Trust Me… You Are NOT Alone!

I’m new in this situation and I’ve already experienced the “alone” syndrome. Thanks for reminding me that I’m not alone!

Just diagnosed last Friday with a bicuspid aortic valve with severe regurgitation and coming to grips with this. I just purchased and downloaded your book and am taking a long weekend to the beach with my wife and daughter to digest this whole thing. It was certainly not what i expected when I went in with a high cholesterol referral from my GP! I am in the LA area as well and have been referred to Dr. Starnes, so it was comforting to find your site and book. Thanks.

Hi Paul
And best wishes for what lies ahead! I also have a bi-cuspid Aortic valve that needs replacing and find out Monday (14 April 2008) what the date and choices are.
I am sure we will be just fine! just wanted to add my words or support !!!
Bill McKinney

Hi Rosemary
You are not alone as are any of us! Just a strange time a place for us to be in. I wish for you the best and contact me if you like
william.mckinney@comcast.net
Bill

Hi to Paul and Bill
I had the same dx and surgery in December here in CT. I want you both to know for certain that you will be fine. It is a process so do take one step at a time and know that all feelings that you encounter along the way are “normal”. Allow people to support you. Please feel free to email me if I can be of help, and Adams book is a great support and comfort.
Chris

Hi everybody!!! I am Sergios wife he had a mitral valve replacement two months ago. It begun with a wrong diagnose of dilated miocardiopathy with heart transplant as the only treatment!!!!! Imagine our dispair and loneliness. Fortunately it was a wrong diagnose and a month later he discovered he had to have mitral valve replacement and here we are two months later he seems like if nothing ever happened to him, he´s better than he was before even though he was totally asympthomatic so BE BRAVE YOU ALL, there are excellent surgeons now, this procedures are done everyday you just have to be brave and it is going to be: a blink of an eye!! when you less expect everything will be over and I’ll see your smiling photograph here in WONDERFUL ADAMS BLOG!! Cheers!! See it as your new life to live, see it positive. I was a devoted caregiver for Sergio whoever wants to ask me something just make contact with me I’ll be pleased to help you. My mail is maribelgarzon@yahoo.com

I’m 58 years old and my cardiologist has been reviewing the status of my aortic valve for the past 10 years since my initial catherization diagnosis of mild stenosis and regurgitation. I’m scheduled for a 2nd caterization to determmine whether i need the valve replaced. I’ve ordered the guide book, and am looking forward to its arrival. I’ve alwayes enjoyed sports and still golf and play doubles tennis and like to otherwise do mild workouts with weights. I live in Pottsville, Pa.and treat with my physician at St. Luke Hospital in Bethlehem, PA. I’m curious about the Ross procedure in that I’m leary of the long term effects of coumadin therapy. I’ve only discussed this with the cardiologist and not the surgeon in that the need for the surgery is not yet indicated. My cardiologist recommends the mechanical valve. I see that Gov. Schwartzenneger opted for a human valve instead of the mechanical. I’d appreciate your help.

to Charles Miller: Looking forward to hearing more from you. Do your homework, above all, be prepared, for which Adam’s book and his blog are invaluable! I am the mother of John Turan (Ross procedure March 5,2008 at Univ. of Florida,Shands Hospital). Since you are at the beginning of this journey, you will hear Adam and most of the rest of us repeat that one of the most important steps is to get a second opinion. Please do not be concerned whether your doctors will be upset with this. They will actually welcome it. Also, since you have been followed for the last 10 years and you mentioned recent cardiac catheterization, I would urge you to read John’s note on the blog (type John Turan on the search box to the right of the screen). You will see how important it is not to delay, as in the case of John, he had continuously received an “a.ok” report until they did an MRI at the Univ. of Florida, simply because he was being followed in their Adult Congenital Heart Disease Program. There, they found an immediate need to do surgery and correct the problem. Whereas before he had always been told to “wait for symptoms”. Every case is different, although similar, so it is very important that you follow your cardiologists suggestions and that you also seek a second opinion.

I am praying and rooting for you and everyone on this site, for those who helped us with our decisions and recovery and for those who are now embarking on that difficult but nevertheless needed journey to heal their hearts.

While you are searching for answers, also type SECOND OPINION on the search box, and you can see what Adam has researched about that even before you get the book in your hands. By the way, the book is so readable, so warm and positive that I read it in 2 hours, then passed it along to everyone in John’s support team.

God bless you. Keep in touch through this site. Mercy, mother of John.

I have been reading the site and book intently for the last month and am now done with second opinions and on to my surgical appointment with Dr. Starnes. Interestingly, my primary MD and second opinion had somewhat different takes on my course. Both agreed that I have a congential bicuspid aortic valve with severe regurgitation. However my second opinion is hesitant about the surgery for now because of an ABSOLUTE lack of symptoms. I only went to the cardiologist in the first palce to placate my wife because of some family history issues. I run 20-25 miles a week, bike several more, play on several softball teams and live a very active and lifestyle. When I read Mercy’s May 4 note though it made up what little doubt I had for scheduling surgery in the near future…who needs symptoms when everyone agrees I will need the replacement. So I am in the process of getting my business ready to be without me for a few weeks, training my replacement at first base and getting that dental work done that I’d been putting off for the last months (who knew how important an issue dental health was with respect to your valves? Not me.) Long and short of it, thanks for all of the info so far, I’ll keep reading and keep you all updated. good luck everyone and thanks again!

i am 58 and have congenital aortic stenosis. Because of some traumatic experiences as a child, once i became an adult, I chose not to be followed by a cardiologist. The severity of my stenosis was only recently diagnosed when I was in the hospital with endocarditis and had to have an echo. I have never had any symptoms. The cardiologist in the hospital advised me to have surgery immediately, and I have seen three others, all with different opinions (2 weeks, 6 months, 1-2 years), all assuming of course that I do not start having symtoms. I don’t really know what to do–how can I let myself have this incredibly serious surgery, when, for all anyone knows, I’ve had this degree of severity for 40 years? I got Adam’s book, but have not read it yet because I’m still trying to deny that there’s anything wrong with me. I would welcome hearing from any of you with comments or advice.

To Nancy Mallinger and Paul Ash:

First, Paul, I assume you read about Adam’s lack of symptoms as well as his activity level all his life. Also read about that little episode at the Mexican restaurant. and also read about my son John’s episode of a similar nature. Helloooo! We as human’s want to deny that there is something wrong, until sometimes, it is too late???? I was convinced that John’s problem was related to stress,(and I am a nurse, but also a mother) as he in the course of two years, had married, had one baby, another one on the way, moved to another city, sold a house and built another one AND both of them had to get new jobs in the new city. As far as active live, the only thing John had not done was jump out of an airplane with a parachute (he was getting ready to do that!). But he had bungee jumped, which put a shocked look on his surgeon’s face whe he was told! It is not good to rush into anything, but things change exponentially in medicine every hour that passes. That is, new thoughts, new ways of treatment and diagnosing come along, for our benefit most of the time. We need to take heed, otherwise, you would say we still live in the dark ages and we would be going to Europe and back by way of the Pinta, the Nina and the Santa Maria (Columbus’ sail ships!!!) and not flying there in mere hours!! This is serious business, not to be entered into without careful thought, and research, but YOU ARE NOT ALONE! Most importantly, a thorough consideration of your doctor’s suggestions (all of them) is important because there are differences in age, in other conditions, etc that need to be taken into account. It is a diffult process, to decide, and then come more choices after that, but that is life, and for some, that may be the only life. PLEASE MAKE SURE THAT YOU CHECK ABOUT PROPHYLACTIC ANTIBIOTICS BEFORE ANY DENTAL WORK. Ask your cardiologist about this before going to the dentist. I know guidelines have changed for dentat and endoscopic procedures, but you should do what your cardiologist orders, not what the dentist decides. There is a larger bacteria count in a human’s mouth (especially after age 40) than in a dog’s mouth (who was to know!, they don’t even brush their teeth!, but it is so!). And defective or weak valves are particularly susceptible to bacteria moving in the cozy nooks and crannies of those valves. Check with your cardiologist first before the dental procedures are done.

To Nancy, finish reading Adam’s book, it is written in a non threatening way, in a warm and personal way, and it will diminish your fears as well as open your eyes to what you need to be looking for. He is a blessing to all of us. We would have been a total wreck before, during and after John’s surgery without his touch (his book, his blog). I am convinced it is Divine intervention that he has written both. I say a thankful prayer everyday for him. And, choose your surgeon AND your hospital well. Remember those who will take care of you after the surgery is done and alert your surgeon to potential problems (the nurses in the ICU) are important too. Some places do this every day, ( Dr. Stelzer,Beth Israel Med.Center, New York, Cleveland Clinic, Cleveland; Mayo Clinic; Adam’s surgeons in California, Dr Starnes; etc etc et–there’s a survey and a chapter about this in Adam’s book. Some places do it only once in a while. I’d say I’d want to go where they do it every day! Wouldn’t you? BEST OF LUCK TO BOTH OF YOU. Keep us posted, and it goes without saying that your names will be in my prayer list too!! Mercy, mother of John.

To any one trying to decide on whether or not to have surgery…

I was scared to death to have heart srugery but was told i might not live very long if I didn’t. On My birthday (June 2, 2008), I was wheeled into the operating room. On the 12th of June I went home with a new mechanical heart valve. As of writing this on, July 24, 2008, I am recovering and looking forward to going back to work soon. 

I am so glad I had it done, I can really tell a difference in the way I feel. Yes, I will have to take Coumadin for the rest of my life… But, at least I will have a life. Best of luck to all of you!