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Woodbutcher

Woodbutcher

Well-known member
Joined
Nov 21, 2008
Messages
532
Location
Coast of Cornwall SW England.
Hello all,
I'm pleased to have found this forum, a year ago I was diagnosed with a Bicuspid aortic valve with moderate stenosis which was really quite a shock having had no symptoms at all, just went to the doc for a check up as I'd just passed 40! Fully expecting him to find me tip top ! I was told I'd need an op in around 5 years... But... Just last week had another scan and meeting with Cardiologist, ony to learn my AV has rapidly deteriorated to the thankless title of very severe Stenosis! Wierd thing is I still feel fine, well I did before this shocking news, now I'm feeling all the symptoms, breathless, pains, dizzy... The lot. I put this down to heightened awareness and basically being pretty scared, well very actually ! It's put me into quite a head spin, I'm not sure if I'm most worried about the op or not making to the right end of the waiting list ! I'm feeling kind of numbed aswell, almost like it's happening to somebody else but with oddly sharpened senses of what's going on around me. All in all quietly freaked out... Sure I'm not the first to feel like this, but I wouldn't wish it on anyone.
Then it's the question of valves... Blimey, first I was thinking Tissue, then plastic or whatever they are, now I've been reading with interest about the ON-X ? That seems to be a pretty good one purely because it may afford a smaller dose of Warfarin.. Who knows, I'm no doctor but I'd be interested in any thoughts on that one ?
 
Oh boy, your brain is going 100 miles per hour.....try not to panic.
We have all gone through the same shock, denial, and questions. Take one little step at a time.
Read some of the FOrums here, but read a bit here and there, it is alot to digest.
Rest and sleep is valuable too as you start on your road to a fixed valve and a new life.
We are always here for you!
 
Hi Woodbutcher and welcome! I felt exactly the same as you in the spring but I have learned to take it a step at a time and learned as much as I can about it. A lot of that is due to the wonderful people in this forum - what a resource and what support!
You will learn you can deal with it - your brain will process it over time and you will be "fixed" with your surgery.
 
welcome to the forum thats a lovely part of the country you live in! i can certainly identify with the fear ,shock factor and the surreal feeling ,i am still coming to terms with this uncertain time after weeks of being told my mitral valve has severe regurg i think its a normal stage to go through.
this i s great place to get support from real people who have been there and are now helping others , do some reading on the forums it does help put things into perspective
best wishes
 
Dear Woodbutcher,
Welcome to the forum.
I also was recently diagnosed with severe aortic stenosis (55) due to a bicuspid valve. What is keeping me positive is a) knowing that I had no control over this situation (that may seem strange, but it stops any second guessing about the could or should halves about my past lifestyle) b) having a great team of doctors who speak plainly and clearly and positively about how to fix the problem - you will find in the forum that most everyone says get the surgery done before you do any more damage to your heart c) new mechanical valve technology is way better now and will probably outlast you, avoiding second and third surgeries d) in a few years the new ON-X valve may not require the full anticoagulent regime if the current tests pan out, and even if it doesn't, the regime shouldn't run your life, your life should run it and, most importantly of all e) better to find out now and have a chance to fix the problem rather than dropping dead as the first sign!
Don't second guess yourself and keep positive that you are on the right road to get the problem fixed. 99% of the time I feel completely normal also (although you are right that you become much more attuned to the old ticker), but I know and believe that I need to get the new valve to give me a shot at reaching at least my eighties, where my family history says I should make it:D.
Keep the faith:)!
Cameron
 
hey woodbutcher,a lot of people on here been through the same thing,me to went for a routine medical to be told i had a heart mumour,then a few weeks later wam told i needed open heart surgery to replace my faulty valve,cert is a shock,but you will be fine,as far as the choice of valve goes it is a personnel thing,look into the pros and conns of both valves,one thing for sure whichever you pick is better than the one you got now,so woodbutcher whereabouts you live in cornwall? i get to newquay a lot,must say loverly area,good luck mate
 
Thank you all loads for your replies and encouraging words. I'm really glad of the company. I live about 40 miles south west of Newquay Neil, Near the Lizard, feel free to call in for a cuppa if you're down... anyone else too for that matter... You're right that any valve is better than the one I have !
 
welcome to VR. can't help on the valves. just wanted to welcome you to VR and tell you that we are here just for you. you will get much information and support from us. we are a pretty good bunch of folks. Read all you can in here via the 'search' above and you might get answers there, too. Glad you are aboard.
 
Happy you found us but sorry for the reason.
This is an amazing group of supportive, knowledgable, sharing people. When I learned I needed a second OHS just four years after my first, my head was spinning and this wonderful group/site was such a source of information and support.

We all know the things going through your head. The anxiety and stress are awful and the wait for the surgery truly is the worst part of it.

There is a wealth of knowledge here and the more reading you do the better. There is so much information to help you learn about the various valves in order to make your choice.

Each of us must choose what we think best for us and there is no bad choice. The only bad choice is to not go forward.

We are here to help you in every way possible.
 
Welcome aborad. What you are going through is very normal. I had my first shock at age 19, again at age 24, and every few years until last March when my cardio said, it is time for surgery, my head spinned and I was in a state of shock, fear, and denial thinking I was fine, while actually I was not ... I had all the symptoms but I related them to other reasons except the real reason which was the deterioration of my av and mv. So, you are now becoming more aware of the symptoms which you took earlier for granted.

take a deep breath and look at this in a positive way that you will have the surgery now and enjoy your life the sooner the better. I wish I had mine 15 or 20 years ago, as my quality of life was deteriorating without me noticing and relating things to age, stress, etc. So, I feel I wasted 15 years of my life. I had my surgery in September and I feel great now...it is like a miracle...I am going back to feeling 19 again :D;)

As for valves, do your own research and discuss with your cardio and surgeon who know what is best for you after you all discuss the pros and cons of each. Keep us posted.

Good luck:)
 
Hi Woodbutcher

Welcome!

Cornwall is beautiful - three years ago my brother got married there and we all went over for the wedding. It was held near Looe. We had a great time.

Good luck for your surgery - let us know how things progress.

Bridgette:)
 
Welcome to VR, Woodbutcher! Believe me, I understand how you feel about being hit with this suddenly. I still can't believe it's happening to me. But I'm not sure that finding out suddenly is any worse than the waiting that some of us have to do...several years, in my case...between finding out that I had the problem and finally getting to the critical mass point. It's no fun either way, but at least here on VR there is a really great group of supportive people to lean on.

I'm with you on the valve selection thing. I used to lean toward a wanting a tissue valve, but I too am impressed with the ON-X valve and the promises it offers. The only thing is that you have to have a plan B and a plan C and a plan D in case the surgeon can't give you the valve you want for some reason. So you will have to do some research and think about other contingencies as you make your valve selection decision. The valve selection forum here on VR can be very useful as you go forward.

Keep on posting!

Best wishes,

Jim
 
Hi WB, I can't help but be struck by the similarities in our stories. I, too, went to the doc for a physical shortly after my 40th. I'd known about a heart murmur since I'd been pregnant with my son, but it went away after delivery. I guess as a mark of valve stenosis worsening, it was recognized again when I was 32 but only as a murmur, no one discovered the cause until I had the echo at 40.

So, welcome to the family and as you can tell, valve choice is extremely personal. Many of us leave it to the surgeon to suggest alternatives since those will be the types with which your cutter will be most familiar.

Take Heart, you've begun a journey that will lead you to a destination of feeling better and hopes of a long, healthy life.
 
Well........this is a story I know well...........Back in April I thought I was a fairly healthy 50 year old. And one day while catching a bus my life was about to change. Next thing I new I was being told I have bi-cuspid aortic valve with severe stenosis and surgery was going to be needed sooner than later. This is when the overload of information begins. This is when you need to step back and thru help of family and your doctor start making decisions that will be with you for the rest of your life. First decision is a non-issue. If they say you need the surgery then you do the surgery. Best decision I ever made. My quality of life has vastly improved even thought I`m still in the healing process. Second decision is your choice of valve and should not be taken lightly because this decision is a lifelong decision. I took the mechanical valve for the simple reason that I never want to go this again. With this choice now you must learn of life on coumadin. After much research I decided with family that living with coumadin was going to be fine. You`ve made the decision by coming here like I did and learning 1st hand how dealing with the issues as they come your way and trust me there will be many issues. The fear and the waiting and the overload of info can be very overwhelming at times and coming in here can calm some of your fears.
Anyway best of luck and hope to see you in here again. Don`t be afraid of asking stupid questions because when it comes to the heart there are NO stupid questions.
 
You're so right, "when it comes to the heart there are no stupid questions." Thanks for that Montrealer and too the relentless responses above, I've really been strengthened by one and all. Happy sunday eve...(well it is in Cornwall anyway)
 
Hi ~ I have no answers for you either about the valve. I just wanted to welcome you to VR. There will be plenty of people who will be able to guide you along the way to your valve replacement surgery, and beyond. When i first came here i was going to have my bicuspid aortic valve replaced, since i have critical aortic stenosis. But then, due to other complicating health issues, i have been deemed inoperable by 2 surgeons, including Dr. Lars Svensson, who is one of the top valve surgeons at Cleveland Clinic. I just had a Valvuloplasty done in hopes it will keep me alive long enough so i can get a transcatheter aortic valve if it becomes available for people with bicuspid aortic valves (presently having a bicuspid valve is automatic disqualification). Right now it is not available in the United States, but they are doing them on people in Paris, France. The FDA, who runs The Partner Study at several hospitals here as people with bicuspid valves were dying during or soon after the surgery. I guess the valve won't stay in place in people with bicuspid valves for some reason. All the people here have been nice enough to let me stay here, even though i'm no longer having a valve replacement. I may get the transcatheter valve, but i don't really think so since they didn't get my valve opened up all that much during the Valvuloplasty, plus they also found i have severe Pulmonary Hypertension, which is fatal in itself (or so the dr. told me). I've got to care about the people here, so it's great that they still allow me to come here. You'll find that the people here are some of the nicest people you'll ever know!

Gather all the information you can and then make the decisions that are right for you. Good luck and it's nice to have you here.

Best wishes,

Dawn-Marie
 
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