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!
You got me on a bad day. I don't see anything great about facing open heart surgery. I'm so distraught over my situation, I wish I could go somewhere and disappear.
I'll post how I really feel in my journal. Maybe someone can suggest how I'm going to survive the emotions and feelings I am currently having.
Tia, I can tell you are a sweet lady and I wish you a perfect outcome.
Darren
On February 8, 2011...
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.
I only learned some of the truth of my situation yesterday. The bicuspid deal and it's connection to poor tissue and aneurysms was devastating. My wife and I had a pretty good cry when we read how it can effect my own and possibly my now adult children's health futures.
I've been waiting since January 19th to learn what is going to happen to me. I'm not in control. I am waiting for a doctor to call me to travel 200 miles for further tests (TEE and ?) to evaluate what they propose should be done to fix me up.
In the meantime, I'm suffering so badly from anxiety, I have contemplated removing myself from existence so I won't have to wake up in panic attacks and live them every waking hour. If there is hell, this is it.
I saw a mental counselor today, but it didn't help, and didn't expect it would in one session. I see her again next week.
4 months ago I was racing my vintage MX bike and had enjoyed a Caribbean cruise. Today I am wondering what future - if any I have.
I thank you for your kind words and advice, but it's not me that is running the train. It's the Canadian Health system and so far what I've experienced...it sucks.
Best wishes and keep on writing!
Darren
On February 8, 2011...
Darren read my update story. Yes I am walking proof, severe aoritc valve stenosis and aorta anurysm (sp?)
On February 8, 2011...
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 :.))
On February 7, 2011...
Darren,
here a recent review paper on mech valve cavitation :
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
On February 7, 2011...
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
On February 6, 2011...
Darren,
May you find peace.....Positve thoughts only!!!
On February 6, 2011...
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
Today is a slightly better day for me. For the 1st time part of me suddenly wants to get this going so I can at some point look behind and start moving ahead. I'm so tired of the mental thing.
I will be thinking and praying for you Julie. On February 12th you'll be glad that the anxiety is over and life can get good again!
Sincere Best Wishes,
Darren
On February 5, 2011...
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 Ings Each of us have our own internal power source that we can dip into when things get real tough. My mom ... Read more
Darren Ings Each of us have our own internal power source that we can dip into when things get real tough. My mom says if things get too bad - break the day into hours, minutes, or seconds if you have to. I believe that is good advice that I will be using. A nurse told me last week that try and remember that any one of us can do almost anything pain wise for a day. I cautioned her that heart surgery is more than a day deal.
I admire those who have faith to give them the internal strength and ability to conquer their fears.
I wish I had your faith, but I'm trying again. Really I am. I've learned too much about the human body over the last month not to believe that there had to be something higher and greater than ourselves to create us.
Let's help each other in our journey's.
Thank you for caring,
Darren"
On February 5, 2011...
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.
I can't believe the wonderful folks I have already met on this site in less than 12 hours. That was a beautiful message and letter you wrote to me. How can I thank you?
My biggest worry, believe it or not, is not dying, it's the anxiety of getting from where I am now (doctors telling me nothing) to fearing what bomb the doctor is going to drop on me, and then those days before the surgery, and then the horrendous recovery process from the operation. All this while wondering how I can survive this financially if I am out of work for more than a month or 6 weeks? I've already started trying to sell my snowmobile and travel trailer as I am so worried about our finances. 25 years of work to get ahead and it could all come crashing down around me.
Being self-employed puts so much more pressure on situations like mine. I have 2 daughters that depend on me and my wife. I make the most money, so we chance losing so much if things don't go perfect.
But the real issue, I suffer so badly from anxiety over this whole issue that I have discussed with my wife that perhaps it's better just to let nature take it's course. I'm baring my soul here, but we're all going to die sometime.... Understandably, she got very emotional over the conversation. She fights back telling me the things I crave to hear. I need her to tell me it will be worth it.
I realize I may need some more help with this as it has effected me personality wise. I'm a worrier by nature, but I can't handle what is happening to me. I can function if I take some xanex, but I'm scared of it as it can be so addictive. Dammed if you do and dammed if you don't.
I will say though, this support group is suddenly becoming a main picker upper.
Thank you again Terry for such a well thought out letter and sparking me on. I need it. I need to hear something good, cause all I've heard so far is "very serious diastolic heart murmur" , "enlarged ventricle causing the AFL", and "open heart surgery". No words of encouragement from my doctor. No compassion in his bedside manner.
Dam, a week before Christmas the world was wonderful and I was doing 45 minute plus heavy workouts in the gym and rebuilding a very special vintage racing bike to race this summer. Talk about your world crashing around you.
Thank you Terry. I needed to read your letter and so happy you wrote it.
Sincerely,
Darren
On February 5, 2011...
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....
Darren Ings Thanks for the info Pete. I was sold on a mechanical valve before reading this blog. Now I'm wonderin ... Read more
Darren Ings Thanks for the info Pete. I was sold on a mechanical valve before reading this blog. Now I'm wondering if I went with a biological valve could I have it replaced down the road if needed with an Edwards valve, or would I have to be opened again?
Danny had the money and connections to get to Florida for the Edwards valve. I don't have his political clout or money...or I'd do the same!
Thanks Pete...where did you live up here?
Darren
On February 5, 2011...
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
On February 5, 2011...
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
Darren Ings Thank you Tia, I read your journal and was struck by your sincerity. I'm angry and feel betrayed. I h ... Read more
Darren Ings Thank you Tia, I read your journal and was struck by your sincerity. I'm angry and feel betrayed. I had worked so hard to make sure my healthy lifestyle would give me continued good health as I grow older, only to have it blow up in my face. I'm sure this is a stage I am going through, but anxiety runs badly in my moms family. I am suffering terribly. Please keep us posted on your success and my thoughts are with you. Thank you for such a finely written letter!
My Best Wishes,
Darren
On February 5, 2011...
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.
Darren Ings Hi Pete, I tend to be blunt myself. You are calling a spade a spade. I like that. I agree with you ab ... Read more
Darren Ings Hi Pete, I tend to be blunt myself. You are calling a spade a spade. I like that. I agree with you about the show last night. The PUMPHEAD issue I researched involved the changing personality of Bill Clinton after his heart surgery. To see him interviewed last night was in stark contrast to the articles about his terrible behaviour and temper tantrums since his by-pass. It is his article and situation alone that scared the heck out of me. If a former President suffers so badly from pumphead with the excellent team that worked on him, what are my chances? I'm a nobody.
Glad we can both get things OFF OUR CHESTS! Best wishes Pete.
Darren
On February 5, 2011...
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
On February 5, 2011...
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.
Darren Ings Wow, you are getting the same treatment from the Canadian system 2500 miles west of here as I am! It ... Read more
Darren Ings Wow, you are getting the same treatment from the Canadian system 2500 miles west of here as I am! It is rumored that Danny Williams flew to Florida last winter to receive the Edwards valve so he wouldn't have to have his chest opened. I wish that was an option for us all. If only I had his money and political clout.
Like the American Civil War days when they cut off your leg if it was broken without pain medication, our current technology is primitive in comparison to what we see on the horizon. Stem cell regrowth of valves and heart muscles, no invasive surgery at all, makes me wish I could be put on ice for 50 years....
Sincere thanks for your message. I studied the NT in university and at one time believed. I find it almost impossible to believe with what I see happening in our world. Yet, the more I learn about the complexity of the heart and our human bodies, it's hard to also believe we evolved from a single cell in the ocean.
Please keep me posted with how your western end of the Canadian health system works and I'll do the same here in the east! Thanks for your wonderful posts!
Darren
I
On February 5, 2011...
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)
Darren Ings Thank you for your kind words Eric. I bought and read Adam's book. That's how I found this site. Howe ... Read more
Darren Ings Thank you for your kind words Eric. I bought and read Adam's book. That's how I found this site. However, I didn't find his book put me at ease, in fact, it seems to have raised my anxiety even further. Here's the story of a younger man than myself who had to overcome huge obstacles to survive. I was hoping his experience would have shown that knowledge, modern surgical techniques, and great care providers would have made him "bounce" through this overwhelming surgery so I could looked at it with the mindset that "if he did it easily, so can I". It wasn't easy. Is it easy for anyone? I am reading with great interest on this site and it is refreshing to feel that in a small way "I'm not alone". Once again thank you for your message. Best wishes!
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
You got me on a bad day. I don't see anything great about facing open heart surgery. I'm s ... Read more
You got me on a bad day. I don't see anything great about facing open heart surgery. I'm so distraught over my situation, I wish I could go somewhere and disappear.
I'll post how I really feel in my journal. Maybe someone can suggest how I'm going to survive the emotions and feelings I am currently having.
Tia, I can tell you are a sweet lady and I wish you a perfect outcome.
Darren