Hello all - New Member scared and confused please help

[clydesdale]

Well i just found out about three weeks ago that I was born with an Bicuspic Aortic valve and will need it and my aortic root replaces with a Mechanical valve due to a regurtattion and a dialated aorta. My sugery is scheduled for Nov 1 2010 at St Michales Hospital in Toronto, canada by Dr Verma so this has all happened it a little over two weeks!

I am 35 just under 6' and about 185 pounds and have been pretty active most of my life.

I have many questions and I hope some of you can help me because I am sometimes scared, sometimes reassured and mostly confused.

My heart measurments were Left Ventrical 6.1cm and Aorta 5.7cm apparently the aorta is the reason they want to get me in so quickly.

My main questions are

1) How long should I be able to live witht this mechanical valve?
2) How common is it to have complications ie infections, tears ext
3) How loud is the clicking?
4) How successful is the surgery?
5) Should i get the surgery or back out?

Im sure i have a milllion others but that is a good start.

I hope some of you can help me.

Clydesdale

 

[jjay32]

hello and welcome to our group! I will give you my thoughts on your questions:
1. you can live a normal lifespan with a mechanical valve, the valve itself will most likley outlast you.
2. it is pretty common to have some mild complications from open heart surgery, we call them bumps in the road, without the surgery you most likley will have major complications such as death from a dissected or ruptured aortia.
3. some poeple are very aware of the clicking, some do not notice it at all, so there is no way of telling what is will be like for you
4. The success of the surgery is very high, especially if you go with an experienced surgical team. For a person with a 5.0 cm aneurysm and above the risk of death from a dissected or ruptured aortia is above 5% per year. the risk of death is less that 5%. That is why the rule of thumb for an assending aortic aneurysm is go in and fix at 5.0cm (for bicuspid valve)
5. see #2 above. At 5.7cm I would want my surgery sooner that later. Do not back out, this is a life saving surgery for you. I will one day be going thru the same thing, for me the wait is really tough, I so want to go and have this fixed now.

Hang in there, there is lots of people here that can help in many ways. We are open to any questions that you may have.

JJay (jerome)

 

[OldManEmu]

Clydesdale welcome aboard, take a deep breath and do not panic.
Regarding your questions.
1/ a mechanical valve should outlast the rest of you!!
2/ serious complications are unlikely in a 35 year old unless you have other health issues.
3/ clicking is an unknown until after surgery, it is dependent on physiology. Some can hear it all the time, others only at times or never.
4/ the surgery is very successful in <60 year olds with no other health issues. 1% death rate and 1% stoke or other life long disability.
5/ you need surgery, it isn't optional, however if you want to investigate your options regarding valves, surgery isn't required in 2 weeks but I wouldn't want to leave it longer than a few months.

Has the surgeon discussed valve choices with you or do you have no choice in Canada?

 

[ALCapshaw2]

Welcome aboard Clydsdale !

It is perfectly Normal to be a little Freaked Out when you hear that you need Heart Surgery.

Your Questions are all in the Top Ten list. You will find a LOT of good background information in the "Stickys" at the Top of the Forum Listings. I recommend that you look over the Valve Selection Forum, starting with the "stickys". Personally, as an engineer, I am VERY impressed with the technological advancements offered by the On-X Mechanical Valve (see www.heartvalve choice.com and www.onxvalves.com - hope I remembered those addresses correctly). Do a Search for keyword "Bokros" to learn about the key designer behind ALL of the currently popular mechanical valves produced in the USA.

I concur with the answers you have already received. We recently had a post from a member who had an acquaintance who did NOT want surgery for her Stenotic Aortic Valve. She died.

In the USA, the risks are as Emu stated, 1% risk of morbidity and 1% risk of mortality, even less when performed by Very Experienced Valve Surgeons at high volume Heart Surgery Hospitals.

BTW, you may be interested to know that one of our members (Dick0234 or some such number) has had his very early mechanical valve (which is no longer manufactured) for 43 years and counting. You may also want to look over the Anti-Coagulation Forum to learn the Truth and Reality of living with / on Coumadin / Warfarin. It's NOT as bad or difficult as some like to make it sound. The key is to find a knowledgable care provider or teach yourself the ins and outs of Coumadin management and self test/dose with one of the new finger-stick instruments.

'AL Capshaw'

 

[nngbwh]

Just want to say Hi and welcome you aboard the VR family.

 

[Lily]

...I have many questions and I hope some of you can help me because I am sometimes scared, sometimes reassured and mostly confused.

My heart measurments were Left Ventrical 6.1cm and Aorta 5.7cm apparently the aorta is the reason they want to get me in so quickly.

My main questions are

1) How long should I be able to live witht this mechanical valve?
2) How common is it to have complications ie infections, tears ext
3) How loud is the clicking?
4) How successful is the surgery?
5) Should i get the surgery or back out?...

Welcome to the site With an aneurysm that size, it's just excellent that they caught the thing and will do surgery soon. Did any doctors tell you to keep your blood pressure down right now and to not do any heavy lifting right now?

The first thing many of us looked for is a surgeon who has a lot of excellent and successful experience with the exact procedure he/she may be performing, in your case including the aorta work for the aneurysm. The survival rate for the surgery can be extremely high. I don't have a mechanical valve but there are studies (linked in various locations throughout the site and across the Internet) regarding how long mechanical valves usually work in a body; and it would very likely work longer for you than a tissue valve.

Hopefully you will find what many of us have, that we tend to feel much better overall with a better, a properly-working aortic valve. Best wishes to you

 

[Lionheart]

Clydesdale,
Welcome aboard on a ride that thousands have taken successfully before you. Most of us have experienced the same feeling, thoughts, and concerns. Here is my take on it. You are young, apparently otherwise healthy, and active. I say "Get er done" and move on with your life.
Best
John

 

[Freddie]

Welcome aboard Clydesdale and fellow Canuck.

You have gotten really good answers to your questions, all of them are straight forward and truthful - we don't beat around the bush here.

My surgery was said and done within 5 days, so you have time to wrap your head around this. Try to relax and don't even think twice about not having surgery.

I'm thinking you'll be meeting up with your surgeon/doctor sometime soon, so have a list of questions for them, we can help you with that.

Will you have friends/family members to be there for you when come home? It would be a good thing to have someone around or at least "on-call" to take you to doctors appointments. You won't be able to drive for about 6 weeks and opening the fridge door will be harder than you think, even putting on socks can be a challenge.

Best Wishes

 

[dick0236]

1) How long should I be able to live witht this mechanical valve?
2) How common is it to have complications ie infections, tears ext
3) How loud is the clicking?
4) How successful is the surgery?
5) Should i get the surgery or back out?

Im sure i have a milllion others but that is a good start.

I hope some of you can help me.

Clydesdale

1. You should be able to live to a "ripe ole age". I had mine when I was 31 and will be 75 in a few months.
2. I experienced no problems after the surgery. Chances are that you will be on Warfarin(anti-coagulant) for your lifetime (maybe not with some of the newer mechanical valves). You need not fear this drug, but you MUST develop a routine of "taking your pill and testing routinely"......or you will have problems.
3. Mine is an early generation valve and I have not heard it since a few months after surgery and I have always been a small man...5-9, 155 lbs. (now 170 lbs.)
4. Very successful. Prior too my surgery, they told me I would be dead by 40....am almost twice that now and still "clickin'.
5. That's like asking if we think you should stand on a railroad track in front of an oncoming train. Maybe it will stop...?????, but I sure as hell wouldn't count on it.

Welcome to the group. I know how frightening this surgery is. You can take comfort in knowing that MANY have gone thru it before you..... very succesfully.

 

[clydesdale]

Hello all, Wow! thank you so much for your replies and answers i really appreciate it. Some more background on me and my situation from the questions above. This was discovered by a routine physical about 4 weeks ago. My doctor heard a slight murmur and sent me for an ekg and a ultrasound, where they discovered the bcv and Dialated Aorta at that time they thought 4.8cm. They sent me for a ct scan a week later and then last week i met with my surgeon who informed me that they need to replace the valve and sugested a mechanical valve and wanted to get me in right away because the aorta from the cat scan showed a 5.8cm Aorta, not sure if the ultra sound was inaccurate or if it grew that much in a short time.
Anyways as you can see its been quick. i cant remember the valve the doctor said he would be using but i have already e-mail his office to find out and will post when i recieve.
My surgeon Dr Verma i am told is one of the top surgeons in Canada here is a link about him if anyone wants to check it out
http://www.crphealth.com/conf/hcp/6,9045/doctor.subodh.verma.biography.html

Yes the surgeon told me different options for valves but told me at my age the mechanical valve is a no-brainer
Yes the surgeon and my familty doc told me to stop working out lifting anything heavt ext.
Yes I am very fortunate to have my wife to be around and my mother and wifes family to assist with me during and after surgery.
Another crazy thing is i found out the week before surgery that my wife is pregenant for the 1st time w twins! how crazy id that? so im also worried about her stress levels she has also had good and bad days with this.

My fears seem to come from articles i have read on google about infections and tears ext i just dont want to live my life always worrying about my health everyday. I have always had a high level of anxiety when it came to my health and just having problems visualizing how to cope day in and out.

i went for my physical pre op on last thusday and results do far good, oxygen was 100%, hemogloben was 155, they found a staph infection in my nostril swap which they gave me an anti-biotic to use this week before surgery.

Anyways sorry for the long post just overwhelmed but again thank you all so much i have never used chat boards before and ive been tearing up a little reading your post and the the fact that you guys responded with the information and questions the way you did. I hope I can do the same for someone else after my surgery.

Clydesdale

 

[Marguerite53]

I have many questions and I hope some of you can help me because I am sometimes scared, sometimes reassured and mostly confused.

Clydesdale

Welcome to our wonderful community. I pulled this one piece out of your opening thread to let you know -- in this group of people -- you are normal!! :wink2:

This will be a time when you are going to have to trust the professionals. You will want to call upon your personal strength and personal confidence to allow you to sail right through this. It certainly can be done smoothly!!

You will be drenching yourself with information for the next few days as you try to put this massive puzzle together in your mind. Your brain and your emotions will wreak havoc on your normalcy. Don't worry. This is heady stuff and at some point you will manage to get your arms around it enough to walk confidently into that hospital and get the work done that your heart -- that beautiful, amazing, pumping, life-giving thing deep in your chest -- so desperately needs. It is working too hard right now. It needs some help. By some grace, you have been counseled to have surgery and it is something you must do for the benefit of your beating heart.

Use us to help you in any way. There isn't much we haven't felt, been asked, seen or heard or wondered about ourselves. Don't be shy!! But please do start a new thread with descriptive title so that more of us (and there are a lot of us here!! did you see? well over 1,000) can jump in and give you our opinion.

Please remember though, we are just people. No medical professionals here (at least none using that profession to post answers), just people who have gone through what you are about to and who really understand what you are feeling.

You will be fine. It's a blow to get news like this at such a young age. And while it won't be a walk in the park, you'll be amazed at how manageable it all really is.

Best wishes!!

Marguerite

 

[Greg a]

Hi there fellow Southwest Ontario resident if ever you want to talk callor we can meet for lunch i am the worst case scenerio but when people meet me are amazed at how "normal" I am today I have PMd you contact info

 

[Duffey]

Hi, and welcome! I'm sure you'd rather not be meeting under these circumstances, but you are now a member of a group of people who know exactly what you're experiencing.
I put your surgery on the calendar so we will all have you in our thoughts and prayers on the 1st. Until then, best wishes.

 

[Marguerite53]

I just read your second post (must've been writing mine while you were!). Congrats on the twins!! Yay!!! Good thing you are having this surgery so early in her pregnancy. She will be able to help you during your recovery and then your sternum will be healed up completely so that you can carry those babies around when they arrive and help her!! I know it seems odd, but hey! I see that as GOOD timing!!

Please invite your wife to read these forum posts. Or, of course, she may join as a "Significant Other" and post her own concerns and seek support. Or she can just chime in on your posts. Many of us have decided that it was our spouse who had the raunchy end of things; worrying, waiting, watching..... It is hard on them! It really is!

If you think you are getting stressed about articles on google about bad outcomes for heart surgeries, wait until your wife's pregnancy starts showing and strangers come up to her and tell them all their bad news stories!! It's incredible what is "out there" to hear. But here's what you do about those. Listen to me. You take a deep breath. You hold up your head so your chin is strong and eyes are bold. You throw your shoulders back. And you say to yourself: these stories are not about me. They are not. My story will be one of success. My life is about to be improved by the wonders of medical science. I have been given a gift. All is well and as it should be.

Okay. Got it? Now rehearse! :smile2: :thumbup:

Marguerite

 

[heartdoc]

Clydesdale - You had excellent advice and counseling from this forum and from your heart surgeon. I know it is scary and confusing but it is clear that surgery is in your best interest. Keep always in mind that surgery is not the problem. It's the solution to give you back your life. If you want a more detailed discussion on valve choices and their implications, I'd suggest this link: www.bigappleheartsurgery.com/page7.php

 

[Sbullock]

Hello I can't answer your valve questions but I had an ascending aortic aneurysm fixed at St Michaels on June 28th after living with the knowledge of my bicuspid valve for 12 yrs. My surgery was scheduled quickly after a ct scan found it had grown to 5.6 cm. I was anxious to have the surgery after my surgeon told me in the pre op exam that they like to do this procedure at 5.0 cms.
You will find the cardiac team at St Michaels
to be quite amazing and I was overwhelmed by the level of care I received.
I had no complications and woke up feeling quite well after surgery. After the first night you will be put into a regular room and you'll get a visit from the physio and she'll ask you to go for a little walk. The amazing thing is you'll be able to do it. Things improve quickly from there. I was home on the fifth day and out walking on the sixth.
Make sure you do walk as it seems like a tonic for your body and you will start to heal very quickly.
I'm just 4 months post op and feeling just fine. You'll have a few odd aches and pains as you heal but after such a serious surgery you'll be surprised at how good you feel.
I'm the panicky type but looking back I had no need to worry. You have a super cardiac team to get you through this.

Steve

 

[Bina]

Hey Clydesdale, do you have horses?
Anyway, you are in a great city and province to have heart surgery. Very skilled surgeons at zero cost.
My mechanical valve was implanted in Montreal when I was 46 and has caused no problems during the past 5 years.
Congrats on your upcoming babies....get yourself fixed up soon so that you can enjoy them and life to the fullest.

 

[Greg a]

By the way I have just met up with three other "zipper club" members from IBM who have dinner approx every six mos .....one is in Toronto one is Burlington one London and I am Kitchener ,,,the others were already meeting here in Kitchener and as I said I have just started going. let me know if you are interested in joining us for a Christmas dinner.....it is an evening out

 

[Praline]

Clydesdale,
I had OHS almost 5 years ago. Mine was a mitral valve,different problem from yours. But like you the problem showed up in a routine check-up. I walked in the doctor office for a yearly check up that I had missed a couple of months before due to hurricane Katrina and walked out needing Open Heart Surgery. I was never so scared in my whole life. The people on this forum saved my sanity.
You are lucky that the problem was discovered on time to fix it. I feel the sooner the surgery, the better. A few years ago, my husband's son from a previous marriage was hanging drywall one day and he sat down to eat dinner. He said he did not feel good and ...that was it. He had an aortic dissection. He was 27 years old. Is not having the surgery an option? No, definitely not
Keep posting here. But remember everyone who has had OHS will tell you that the waiting and worrying before the surgery was worse than the surgery itself. I know that is how it was for me. When I had the surgery, I was 60+,a lot more chance of having complications than at your age. It has been almost 5 years and I am still working.

 

[Mentu]

Clydesdale, welcome to VR where everyone knows just how you are feeling about now. Just be assured that things are likely to go better than you expect. The younger and healthier you are at the time of your surgery, the better your outcome should be. This is not something that you want to wait about. You need to also keep in mind that your heart is working very hard to keep you going right now. The time it spends doing that takes its own toll and can bring on other problems later. Getting your surgery out of the way will leave you with a healthy valve, a healthy aorta and will limit the stress your heart is now working under. You have two degenerative disorders that are both terminal if you choose to ignore them, however, you are fortunate enough to live in a time and place where surgery can repair these problems with little risk and leave you to live a normal life with a normal life span.

Few things are certain in our lives; start from there. No surgeon, no cardiologist, no one can tell you how long you can live with your valve or what kind of complications may develop in the future. What is certain is that without these repairs you will die sooner than you should. We all live with uncertainty. It is part of the human condition. After your valve is replaced and your aorta repaired, you may one day develop complications but it is very unlikely they will be as bad or as dangerous as what you are living with right now.

You really will be surprised at how rapidly you are back on your feet and recovering. At the age of 60, my recovery has been pretty uneventful. In all likelihood your recovery will be even better. By the time your children are born, your scar will already be fading and you will be back to a normal routine; who wouldn't choose that? I would urge you to decide now to work on having the best recovery. This means that you cannot neglect yourself and you must try hard to avoid carelessly re injuring yourself. Manage your recovery and take advantage of the opportunities you have to heal properly the first time.

I will now step off of my soapbox. As you have other questions, let us know how we can be of help and if you need to know the questions, well, we can help with that, too.

Larry