Darren,

I, too, have a bicuspid aortic valve. I found out yesterday that I have an aortic aneurysm, in addition to needing to repair or replace my aortic valve. The surgeon thinks he may be able to repair the valve. If it needs to replace it, he will replace it with a tissue valve. The surgeon said I will feel much better after the surgery.

I wish the doctors had not waited so long to do my surgery. I am not sure how long I have had the aneurysm. If you have one or have enlargement of the aorta, don't wait too long.

From what I have heard, aortic valve surgery helps a great deal. We should feel much better after surgery. I wish you all of the best!

Tia Phillips

Darren,

Hey I read your post and I have some words of encouragement. Many of us on here have had bicuspid valves repaired or replaced and first off before you do the surgery your doctors should do a CT Scan to check for evidence of an aneurysm in the aorta. If your aorta is within the proper size range repair and replacement of the valve will solve the issue and your aorta should be good.

By the way once the surgery is done you will not just march into the sunset never to see a cardiologist ever again. In a good way you will be monitoring the repair pretty much every year. So no Darren it is not a death sentence it is an opportunity to live a better life and you are lucky that you caught this in time. Please know this is a great place to get input and if you ever have any questions feel free to reach out.

Thanks

Jerry H
Louisville, KY

Darren read my update story. Yes I am walking proof, severe aoritc valve stenosis and aorta anurysm (sp?)

Darren,

The fact that you will have surgery out of province is not a bad thing, There is a transfer of funds for the surgery, between provinces - debit on your end.

Anything that brings in money to the treating hospital will probably help you get the surgery ahead of people with a similar condition in the service providing province.

I know, I've seen several out of province patients where I go for care.

lucky you - who knows, we might meet in the ICU :.))

Darren,

here a recent review paper on mech valve cavitation :

http://www.expert-reviews.com/doi/pdf/10.1586/17434440.1.1.95

a bit technical; but you'll get the gist of it.

cheers

Darren,

who told you you needed replacement in lieu of repair?

you have to consult with a surgeon who does repairs on a regular basis. they can repair some pretty advanced cases nowadays, buit you may have to wait a while to get it.

I also have a-fib and enlarged ventrical - but I'm sorta used to it ;.))

btw, I was raised in the Moncton area.

cheers ,
pete

Hi Darren,

Sorry to hear about your turmoil. I can attest to the anxiety and having gone through it for many many months I know for sure what you are living with; however, you will be fine. Its a process and many of us have taken this bumpy road only to find it worked out.

Terry T
successful mitral valve repair Dec 15

Darren,

May you find peace.....Positve thoughts only!!!

Hello Darren!

I have read your story! it is life changing stuff! and you are bound to be feeling anxious! and because it has come out of the blue you have a lot to get your head around...

I am having my triscupid valve repared a shunt and masze procedure on Friday 11th feb!
i am so worried naturally, i have pre Teen Childern who are also anxious about Mummy going into hospital!! I like you thought about just living with my problem until the doctor informed me that i just would'nt make it into old age.... So thats a no brianer for me!! Keep your chin up! and i hope all goe's well at your next appointment! Take care

Julie Taylor

Hey Darren...just read your response to my opener....and a intrigued by your comment that you studied the NT and "used to belive". I find that very intriguing.

To the degree that I would not discount the possibility that SomeOne is trying to get your attention, maybe, just maybe.

I know for a fact that He has mine, riveted on Him day in and day out. On October 16th, 1982 I was dying and cried out to see if SomeOne, AnyOne was out there. I found out there was and my life's never been the same.

This journey I'm on now has drawn me closer and closer to Him. Real simply put, I'd be institutionalized and medicated by now if it wasn't for the reality of His Presence in my life.

It was a desperate struggle for me to believe, but when something happened that I can't explain then His peace came into my life and has never left me.

There's many times a day when I mess up but that doesn't alter my convicition that nothing changes on His part. So I can face tomorrow with this wondrous and miraculous Peace that passes my human understanding, knowing that my life is in His hands and nothing can ever happen to me that hasn't been passed through His filter of what's allowed to come into my life for reasons I don't understand. I just trust that someday they'll be for the good no matter the hell of the journey.

And He'll do the same for you.

All the best and may you somehow come to that place of peace, His peace.

PS Sorry if I get to thumpin'. It's what makes me "tick"

Darren:
Though I can't alleviate your anxiety while you wait for surgery, I can perhaps help with the worry about the process. Once you do get the surgery you'll probably find that it's not as bad as Adam's experience. Really, even at age 71 with a full sternotomy, it wasn't bad for me. Just a couple of days at the beginning, but you'll be so busy right after the surgery before you know it you'll be going home.
Like you, I also exercised (with a trainer) regularly and was quite surprised to discover that, despite having spic and span clean arteries, my aortal valve was shot. When they advertise the dangers of heart disease, they focus on cholesterol and fats, but they create the impression that those are the only things that can go wrong with your heart. Nobody prepares anyone for the fact that your heart valves can go even if you "live clean."
You'll gain a lot of support here on the line. There's also a lot of research into new procedures that should be in the mainstream within a few years. I described a process that a friend of mine's 92 year old father just had done that goes through the femoral artery, but it's still in the experimental stage.
About the change in mental processes. They've improved procedures tremendously, and most of us had no change after surgery. Remember, if you're worried about Clinton, that he had coronary artery disease, not a valve problem. Also, my husband worked with him at times when he lived in Arkansas and Clinton was a governor, and the Arkansans knew that he had a bit of a temper then--he didn't like criticism at all and responded badly to it. So perhaps that tendency was there all along and his heart surgery is being blamed for it now. Who knows. But your case is different and medical procedures are improving almost daily. And you're not alone in being terrified while you wait. Many others were/are as well, but we all eventually came through it fine. You'll be fine, too.
Terry C.
The very best of luck to you.

Hi Darren,

It's me Pete again. I had the same worries as you have about pump head when I first learned about open heart surgery. I also earn my living by my wits, as most of us do nowadays since more people are reasonably educated.

It is true that mechanical valve do cause some cavitation which lead to micro-emboli.
The overall effect is somewhat mitigated by the anti-coagulation; the jury is still out about the longer affects of micro-emboli relative to other ageing factors such as alzheimers etc..

But they are working on better fluid dynamics for these valves.

I'm not a heart surgeon, but it is clear that a repaired valve is way better than a replacement. Also, bovine valves last quite a while for as aortic valve replacement and tehy are free of cavitation.

It's agme of trade offs and in Canada , health care costs control - if you're rich, you can get more say in the US - remember the Newfoundland premier....

Hi Darren,

Your my man!

about Clinton, don't forget he wasn't exactly a spring chicken going into surgery; and being a former President it must've been hard on his ego coming to terms with ageing and mortality as it is for all of us ordinary folks - so to speak.

the problem is, it's hard to seperate the variables - if you have arteroscelosis, it is known that during heart surgery you have a higher chance of having emboli go to your brain and damage it somewhat. It's not strictly due to the extra corporeal pumping - the overall arterial condition is a big factor.

Remember how Clinton ate before and even after surgery - he was an idiot, if you ask me. Having faced death which no amount of money and power can placate, he is now a vegetarian.

Also, Presidents have the best doctors at their beck and call. He should have known better than to eat greasy food, all the while knowing it was risky behavior - we get what we deserve sooner or later - although some are luckier than others.

blunt again, but open to debate :.)

btw I'm also a former Maritimer :.))

cheers

pete

Hi Darren,

Please read posts by others on this site. You will be encouraged and will gain a great deal of information about your condition and about heart surgery. There are many here who have had very positive outcomes with their surgeries.

I am a 54 year old female special education teacher. I was diagnosed with a bicuspid aortic valve five years ago. I had a transesophageal echo at that time to confirm the diagnosis. The solution they sprayed into my throat to numb it was uncomfortable, but after that the medication they gave me relaxed me enough so that I was out during the procedure. It went fine, and there was no pain. I just had a little hoarseness for a few days. From the way it was explained to me, this was just a way to get a better picture of the heart and valve than could be seen well from the echo.

I was told on Jan. 3 of this year that my aortic valve regurgitation had worsened so that my heart had begun to enlarge. I will be having surgery to replace the valve in about the next month. I hope to find out the date next week. I am confident that everything will go well.

From everything I have read on this journal site and elsewhere, this is a surgery that people recover well from. I, too, am concerned about the prospect of taking blood thinners for the rest of my life. I will speak to my heart surgeon for the first time next week and will get my questions answered. You will probably hear from many others on this site who have already had the surgery, and they will share their experiences.

In her Heart Valve Journal, Ruth H. suggested the book, Prepare for Surgery and relaxation CD by Peggy Huddleston. I ordered both from Amazon.com. (Book: Prepare for Surgery, Heal Faster and CDs: Relaxation/Healing CD Plus Instructional CD), and have been using them. The CD seems to help me relax a little (and more so the longer I use it). The book explains the relaxation techniques in more detail and has a great deal of other useful information. I also ordered and have been using a guided imagery CD set by Belleruth Naparstek, called Meditations to Promote Successful Surgery, which I have also found to be helpful. Both state that there has been research to show that these methods improve surgical outcomes and recovery. I also take some calming herbs for stress.

I hope this helps. You are in my thoughts and prayers. I know that all of this seems scary, but I have been comforted by reading posts on this site and reading the messages people have entered into my guestbook. You will meet many caring people here. Welcome to Heart Valve Journals. I wish you all the best. I will be following your journal. Take care!

Tia Phillips
Indiana

remember Darren,

Everytime you take your car, you risk injury and death, but do you think twice about that risk?
Our civilisation has become obsessed with safety - if only our forefathers could see us... we have become such cry babies - all of us.

sorry to be so blunt.

pete

about the Barbara Walters show last night on ABC:

Most of the guest including Walters, and by their own admission, had never been ill prior to being diagnosed with heart disease - isn't that something they should have been voiced a bit more forcefully? I for one, have had chronic diseases since birth.

Waht a sappy show! Guests were just looking for sympathy, bragging about the number of by-pass - triple, quintiple - who cares! Celebs suck.

I'm not scared about heart surgery, and I don't believe in GOD!

ahhh.. glad to get that off my chest. :.)

good luck Darren from PEI.

Hi Darren,

Am in a similar situation - for me it's a mitral valve; and I'm Canadian and the waiting lists are very long; the wait can be as long as a year.

as for pump head, unless you plan on becoming a particle physicist at 51, I would not worry, latest studies suggest tha it is not a that big a deal especially if everything goes well in surgery and done at a top facility like the Montreal Heart Institute.

anyway good luck and don't worry about it too much.

pete

Hey Darren in PEI,

Thanks for signing my guest book. I am very fortunate in Winnipeg to have a family doctor that I've had for about 25 years who constantly goes to bat for me. He gives me an hour or more of time at apptmnts, and really has a heart for his patients.

We have discovered, though, that there is a casse sytem, especially in the cardiology area. Members of the "princely kingdom" are inclined to not comunicate with each other, never mind the patient when it gets to our level. I've got to call a spade a spade.

I'm not saying they don't care, what I am saying is the system takes all the steam out their understanding of the reality of what a person in going through. It's a numbers and priority game. If you're not emminently in danger of expiring, you just get this feeling that you don't exist.

So I liken it to the Candian 2 tier health system, There's the suffering stream and the dying stream. If you are about to expire you'll have the royal red carpet, c/w lights and sirens and bells and surgeons and specialists and people crawling out the woorwork and out of bed at all hours of the morning just for YOU. Now that's not to say that the syste is the only issue. It was on the news that obesity is becoming a world pandemic, Canada included. Years ago this was not so. So the question might be, do we have the trillions of dollars to thave a cardio thatre on every street corner live 7 - 11 to accomodate those who chose to be obese?

Sometimes you get the feeling you just don't exist. That's where my faith and support community come into play, and I am very blessed to be free from panic attackes of any nature (they're not good for the ticker), but I do suffer from bouts of mild depression, maybe a day or so, but not bad.

We have an army of people praying for us (my wife and I) around the planet, from the Phillippines to the US and Canada, We really feel the supernatural lifting of those prayers when we're down.

For example today we're not quite on even keel from yesterday but we're reconciled to it and have hope that can't be extinguished for the future. If you know of any support from the faith resources, regardless of your own system of belief or lack of, I would encourage that.

There are prayer lines out there,
1 866 273 4444 is the 100 Huntley st line out of Burlington ON. Another one is
1 877 974 7223 which is the Grace TV line form ON as well. You can call them day or night and they will pray for you.

My best bud from work is having problems with panic and anxiety as he just lost his wife before Christmas. She outlived her heart transplant of 12 years ago. He get's a lot of his comfort from his faith community where they were known by a lot of loving and kind people as well as we're like brothers ourselves, always checking up on each other.

If you can surround yourself with a support team you'll find it a lot easier. No man was meant to walk these miles alone.

All the best to you Darren.

Hi Darren, I fully understand how you feel. This is very scary but I guess we just have to play the cards we've been dealt, to the best of our abilities. You may want to start by buying Adam Pick's book. I bought it online and it arrived within a few days. My wife and I both read it and it answered many questions. I have also researched on the internet. Some say too much info is not good but I must admit much of which is can be an eye opener. It is serious but the experience of the surgeons along with technological advancements, our chances are way better now than a few short years ago. I have been reading all the stories, journals and guestbooks here and also check out http://www.valvereplacement.org/forums/forum.php regularly.
I watched the Barbara Walters Special on ABC last night and we are not alone. Well worth the view.
Hang in there, think positive and research. I am sure we will be fine... Take Care.
Eric Brenie (fellow HVJ member)