New Member who is confused !

[JMCEWAN]

Hi All,

I am a new member and have been reading the forum and site for a week or so. All I can say is that I am very thankful that there is a site like this in existence.

I am 39 year old from England and have just been diagnosed with aortic regurgitation caused by a congenital bicuspid aortic valve. As I have read many times on the site this can be something that you know nothing about until a routine visit to the doctor discovers a heart murmur or palpitation which you get checked out.

I visited the GP in February who discovered that I had a slightly irregular heartbeat and reffered me to the A & E unit at my local hospital. They ran ECG's etc and set up a consultation with a cardiologist for 4 weeks later. He discovered the BAV . I had a TEE recently and my valve is moderate to severe requiring surgery in 9 -12 months in his estimation. Obviously this has come completely out of the blue and I was shocked as I am otherwised very healthy and very active.

I am confused and scared at the moment and I need as much information as possible as to which course of action I should take and what I need to know to move forward.

I am going through the normal questions is my mind and would appreciate any advice inthe following areas :

1) What do I need to know from my cardiologist in terms of how bad my BAV and insufficiency is at the moment ? I have regularly read on the site of measurements of the valve, the flow rate etc and I am sure I need to know this but I am unsure what to ask my cardiologist and my next consulation.

2) What type of valve ? I know this is the standard question but it is so difficult. Mechanical = hopefully one surgery but just how difficult is it to live with Coudamin and keep my INR in range ? I have a very active lifestyle and social life and I am very worried of the impacts on this .Tissue valve = more surgeries but how long could they last and is the general consensus that technology may have improved substantially in the next 10 years to have mechanical valve that doesn't require anti-coagulants for life ? Is there anybody that has a tissue value that isn't on any medication at all ? I know in the end it will be my choice but I am trying to weigh up a second surgery against taking medication and being monitored for the rest of my life.

3) What can I expect from surgery ? Is it really as bad as I think it is ? How bad is the scar ?

I know I should be thankful that I have been diagnosed early and it is something that it is treatable but it doesn't feel like that at the moment. My life is currently on hold as I am so unsure and confused. The site has been a great help so far. Thanks in advance.

Thanks
John McEwan

 

[hensylee]

Hey, John. Welcome to VR. Scared? Who, us? You bet!

The only question I can answer is #3. It's MAJOR surgery and will take you awhile to get over it. As you read from our members, it is almost never as bad as we imagine it beforehand. Nobody is exactly the same, but we got through as you will. Possibly just before surgery time you will become calm as many of our members say that happened to them.

There will be many of us who will be along soon to answer all your questions. You will be well educated and may be able to answer some of your physicians questions! We are a wealth of information here in VR.

 

[Kate]

Hi John!
Sorry you have to face this, but welcome to our site! I'm also 39 and had my aortic valve replaced last year with a biological valve (bovine). In my case, neither the surgery nor the scar was as bad as I thought it would be - being relatively young and in decent shape tends to help with that.

Regarding valve choice, this is a difficult and very personal decision. I chose biological largely because I live in a rural area with little medical support for Coumadin management, had access to really experienced surgeons at the Cleveland Clinic (which makes a difference when looking at multiple surgeries - a bovine heart valve in someone our age wil fail in 10 - 15 years) and because I felt it fit my personality and lifestyle better. However, there are many people of a variety of ages who have chosen mechanical and are very happy with their choice as well. I recommend you go to the valve choice section and read through past threads. Tobagotwo has some posts on this that were so good they are in the reference section! Learn all you can, think about your own life and priorities. In time, you'll know what the right choice is for you. Best of luck, Kate

 

[Ross]

Hi John and welcome aboard.

First off, take a big deep breath and relax. Your amongst friends here that have been through it, some multiple times. You'll get the honest answers to the hard questions here.

The funny thing about the human body is that it compensates for it's shortcomings. You may well have symptoms that you don't think you have and wont' realize it until after surgery.

Get copies of all your medical reports and keep them. They shouldn't give you any grief over copies of your own records. This is the best way to go about it.

Valve choice is highly personal. Given your age, I wouldn't consider anything other Mechanical and Coumadin. I'm for anything that is going to keep you from hopefully having to repeat surgery again. Don't make the mistake of betting on what the future holds. How can you bet on something that you cannot see today? Coumadin is not as bad as people and some medical professionals make it sound. You can learn more about it and I encourage you to do so as part of the learning process. Check the anticoagulation forum and www.warfarinfo.com which is a site run by our resident anticoagulation expert and pharmacist, Al Lodwick. His site will dispell huge myths and provide needed information. Having a tissue valve does not mean that you won't be on Coumadin. There is the possibility of chronic AFIB after surgery and if you have it, you'll be on it anyway.

Surgery is rough, but it's nothing you can't handle and no, it's not nearly as bad as your imagining in your mind. First 3 days a pretty rough, but then things start to settle down pretty quickly afterwards. It will take 6 months to a full year to completely recover.

I'll let the others fill in what I've missed, but welcome to the forum.

 

[Marguerite53]

Hello, John. Welcome to our wonderful, supportive, informed community. I know that there will be many ways we can help you, so take a deep breath and know that you will learn how to get through this event just fine, and continue to live the life you are accustomed to.

Do remember that except for the gentleman Ross mentioned, most of us are not medical professionals. We are just people who've gone through this experience and have suggestions to offer.

My BAV was just replaced with a Bovine tissue valve 3.5 months ago. I'm a 52 year old female in very good health but not very good shape (kind of a foodie). I came through the surgery just wonderfully! The drugs are magnificent. The technology is such that my scar is only 5 inches long, stitches on the inside, time on the pump was minimal, less than 4 hour surgery. Of course, everyone is different. Some people react to the drugs in a less than expected way. They just have a more difficult ride. To spend much time thinking about the surgery itself or the scar is really not terribly useful. Just ask the surgeon (the best you can find, of course) (we can help you with some ideas on that...) what technique he uses for closing up. And, prior to surgery, let them know if you've had an adverse reactions to anesthesia (I'd had so little in my life I just went in blind faith and it was fine!!). Then, if you don't want to experience the first 24 hours, which involve the dreaded (but not really that awful, I'm told) breathing tube, they can probably keep you in la-la land and you won't remember any of it. I only remember feeling laughingly stoned as I reached for some ice chips. And I vaguely remember my husband and daughter leaning over me and smiling. Then I was wheeling down into the cardiac ward with smiles and phenomenal helpers all around. I was up and around very soon, and recovery has been (knock on wood) very smoothe.

While you are in The Waiting Room you can gather your statistics. Here in the states, you can request your echocardiogram reports. At first the numbers are confusing, but there are select measurements which we can help you decipher. Please get a copy of your report, with measurements, and start a new thread about them so we can help you there.

The best thing I did as I was waiting (which seemed endless) was to ask my cardiologist specifically when do you call in a surgeon ? At what measurement, from what list of symptoms....what is it that will make you (the cardiologist) decide when it is my time. You will find many here who say that waiting too long is dangerous. Timing can be critical. The heart responds badly, over time, to these conditions, and it is best to catch things before the heart works itself into permanent damage. However, this is often a very very very slow process and that can become somewhat aggravating. I never had a TEE before surgery. I believe that is the best diagnostic procedure for measurements. Great that you had that.

Valve choice is very personal. At 52, I was on the young side of choosing a tissue and not mechanical. My reasons are fairly personal and wouldn't apply to a male your age. It is very important to try to educate yourself as deeply as you can in this time you have before your surgery. You should get information from professional and reliable places, and go to several places (doctors?) so that you get varied and unbiased opinions. At some point, if you're lucky, you will get an instinctive nod inside your head as to which type suits you best. My suggestion is to go with your instinct (a very well educated one!!) and then never look back. "Buyer's remorse" is not a luxury you should allow yourself! You are just going to have to choose and be done with it! But again, that's just my little opinion.

It's a lot to know, but please, be grateful that you have the time to educate yourself. If it starts to get too pressure-filled emotionally, just step away from it (from us, even) for awhile and give it a rest. You will get through this just fine.

Nice to have you aboard. Keep those questions coming!

Marguerite

 

[MrP]

John,
Sorry you also have BAV. I found out I had BAV when I was little but only in recent years became better educated. If you haven't already found the Bicuspid Foundation website at www.bicuspidfoundation.com, you will find very valuable information there including suggested questions to ask your cardiologist. There are many excellent articles to be found at the bicuspidfoundation website and also in threads throughout this website.

With respect to your upcoming consultation with your cardiologist, you'll want to learn details of the echo test. Regurgitation or insuffiency is rated subjectively on a scale of 1 to 5, with 5 being the most severe. You'll want to learn about LV size and other parameters described so well by many on this forum and in the literature. Also ask whether or not any aortic dilations were observed by echo tests. You'll want to especially know the size of the aortic root and ascending aorta as measured by echo tests. I strongly recommend a CT scan to compare the diameter of your ascending aorta with the rest of your entire aorta. A CT scan with contrast is more accurate than echo for determining the size of the aorta.

I strongly encourage you consider a mechanical valve given your age, and also you may want to seriously consider a composite mechanical valve with Dacron graft for your ascending aorta to avoid a redo operation.

The surgery sucks....the scar is bad at first but heals over time.

My aortic valve insufficiency was also moderate to severe, but my large ascending aortic aneurysm was of most concern to me. Although you'll want to take care of your valve before significant damage results to your heart (LV enlargement especially), you should have plenty of time to get second and third opinions and get educated. You may be able to wait years. No need to feel like you have to rush into this surgery, unless of course you have a huge aneurysm. Best advice I can give is to use the best surgeon with the most experience in the world...you may have to travel for this and spend the money... well worth the results.

All my best,
MrP

 

[Karlynn]

Welcome John. I'm glad you found us. We have many BAV members.

A few of us that are long-time Coumadin users put together a thread for new members just like yourself who are unsure of Coumadin. It gives basic information and does a little separating of fact from fiction. It's not meant to sway your valve choice, just give you correct information. It also meantions the www.warfarinfo.com web site first because it's such an important site.

http://valvereplacement.com/forums/showthread.php?t=17116

I'm sure your pretty scared right now. Just rest assured that this forum is full of people who are successfully living life after valve replacement and repair.

 

[pipersmith]

John,
I could have written your post myself; thank you for sharing, as I have learned a great deal from reading the responses.
I wish you the best of luck - and know that you are beginning this mysterious journey with others.

 

[JMCEWAN]

Wow, many many thanks for all the quick replies. Really nice to know you are all out there. I'm sure I will have many more questions over the next few months.

Thanks
John

 

[Lynlw]

Welcome The only question I can answer if my son has a bovine valve and is on no meds at all, not even aspirin, Lyn

 

[rbl1999]

Hi, John, I would also like to add my welcome to you. You are amongst some very good and caring people, I felt I got so much support before and after my AVR. I am older than you , 60, and chose a bovine tissue valve. It just seemed right for me, and I still feel comfortable with my decision. The only thing I take is a baby aspirin a day and I feel really good. It took a while for recovery,about 6 months before I really started to feel like "normal".. All the best to you.. Rose

 

[Cooker]

Hi John,

Just wanted to say welcome. This is a great place with many great folks to help you over the mountain. I am new (6 months post op) so Iw ill not give advice. I will say that I agree with those you say it is not as bad as you might think. And I agree with Ross on the mechanical valve choice. I'm with anything that will most likely keep me off the table. No coumadin problems and feeling great!!

I know all will go well for you. Ask, ask and ask. These wonderful folks will always be ready to help.

God Speed,

Cooker

 

[JohnnyV_46]

Glad you found the board. Sorry you have a problem...Bovine Tissue valve here. I'll take another surgery over not having to worry about INR everyday of my life. No one knows how much time they have left anyways...the surgery was not bad enough for me to worry about putting up with it again and the recovery.

 

[RossGurlie]

I can help!

I can help!

Hey John! I was also born with aortic stenosis and a bicuspid aortic valve!! Like you I went a while with no symptoms and I knew it was coming, but I was surprised when they stopped letting me run during athletics because of it. I went to the doctor when I was 12 and he said I had aortic regurtitation, leakage, and insuffiency in addition to what I was born with. And I was confused too! I pretty much had no clue what was going on. But I went to the hospital numerous times and was told my options. #1 - Repair , #2 - Mechanical, and #3 - Ross Procedure. I didn't want mechanical because I wouldn't be able to have kids. The other two were up for grabs. The surgeon said he'd have to decide when he went in. So on June 29, 2005 I went in for surgery. Before surgery I was kinda scared, but not really scared I would die or anything, just kinda freaked because I wouldn't be able to take a shower, and I had to have a catheter and I would be exposed...if you know whatI mean. And, if you know me, all these reasons will not surprise you. But as it got closer and closer to surgery time, I did get a lil nervous. I wasn't really sure what I was nervous about, I was just nervous. For me, personally, surgery, although 11-hours long (the surgeon went in and first tried repair and then was not satisfied, so he proceded with the Ross Procedure) was not that bad. I had surgery Wednesday, was in the CVICU that night, then woke up around 4 am Thursday and had the breathing tube removed. That afternoon I left the ICu and headed up to another room. Then, Satuday morning, I left the hospital. Recovery was long and boring, cuz I couldn't go to Astroworld, or run, or bowling, or batting cages, but I got through it. So, surgery went really well for me. If you are elligable for the Ross Procedure, that's definately the way I'd go!!! I've been side-effect free for the most part and by the next time I got back to the cardiologist, it will have been 9 months since my last visit. I pretty much can do anything I want -- excersize wise, and am living an active life!! Yups....so I don't really know anything about the measurement stuff...cuz the Dr. told that to my dad, but I would just listen to other people on here's advice. Everyone is willing to help and so nice!

 

[Tam]

hi John

I live in Fife in Scotland and I'm awaiting surgery in the next few months too. Like you, my aortic valve problem was discovered purely by chance - I'm 48 and have been healthy al my life so the news came like a bolt from the blue. I will have another echo scan in October and then an angiogram to follow before discussing imminent surgery. I have no obvious symptoms and this has made things a little harder to accept but the folks on here have been very reassuring about everything.

It is very scary, but you are right to focus on the idea that your condition is very treatable. At the moment I'm tending towards the idea of a mechanical valve as the idea of reoperation down the line is not too appealing. I have a wife and teenage daughter and I intend to live a full life for them - I'm going for it big style!

I'll keep in touch via the site here and let you know how I'm getting on. Where abouts in England are you?

Keep in touch
Tam

 

[JMCEWAN]

Hi Tam,

Very confusing time isn't it. Be good to try and keep in touch via the site so that we can have a chat about how things are progressing for us both. Leaning towards mechanical aswell but just need to be sure of anti-coagulation before deciding. I'm sure thats what my surgeon will recommend based of my age. Have a few onths to decide and have changed my mind many times already !!

I live in a village called Bubbenhall which is just south of Coventry in Warwickshire.

Thanks for posting. I think this site and it's members are going to be worth their weight in gold over the next few months / years.

John


PS thanks to everyone again for replying. Warms the heart.

 

[Nan]

Hi John, just wanted to welcome you to the site and wish you well as you begin your journey along the road to a healthier heart. I don't think I can add anything more than what has already been suggested to you, just wanted to say "Hi".

Take care,

 

[Jan]

Welcome

Welcome

Hi John

Welcome to VR Its great to have another UK member onboard.

I was diagnosed about 1984 ( my GP heard a whoosh when he listened to my heart ) and refered me to a cardiologist, who told me that my Aortic Valve had a slight narrowing. and that I would need AVR in 15 to 20 years time,I too had no symptoms and was leading a full and active life. So I was not too concerned as 15 to 20 years seemed a long way off.

I saw the Cardiologist once a year and had an Echo done yearly until 2001 when I was told the valve had became extremly calcified and I would need surgery within the year, I cried for a week while they arranged an appointment with a surgeon, and an appointment for a Angiogram.
when I look back I had became breathless, but as it was gradual I did not realise it was due to the valve ( I was being treated for asthma )

When I saw the surgeon he more or less told me that I would be having a mechanical valve ( no other options were offered or explained to me, nor was warfarin mentioned ) as my AVR was getting done on the NHS I just accepted all he told me.

Then I found VR and all my questions were answered, the pro's and con's of each valve type, what to expect before, during and after surgery and all about warfarin. I was even advised to make a list of questions to ask the surgeon at the next appointment, which I did and the Dr was flabagasted that I was questioning him, after a long discussion I decided that a mechanical valve was the valve I wanted,for me taking warfarin needed only minor lifestyle changes, and I thought I could cope with that rather than face another surgery ( I was 47 at the time)

My surgery was schduled for Nov 6th 2001 and I was all prepared then on Nov 5th the cancelled it ( no reason given )
I rang the hospital every week and was re-scheduled for Jan 2 2002
so you can imagine the Christmas and New Year we had.
I was so afraid that they would cancel again that we made a decision to go private if they did cancel, but It all went ahead, and thankfully I no no problems.

I remember very little about the time in ICU following the surgery as they keep you pretty much sedated which is a good thing while the breathing tube is in place. I was back on the ward about 36 hours after surgery and apart from my chest wound being sore I felt fine, I was walking and my recovery was quite uneventful, I was home about the 8th day,and went to Cardio R-hab which was a great help.

I have no problems with Warfarin ( I have an occaisional alcoholic beverage and still ride pillion on my husbands motorcycle ) In fact taking warfarin is no big deal for me, I have a blood test each month and my INR is pretty stable.

I can relate to how you are feeling, and believe me most of us here have been in the same position,but ask all the questions you can think of and You will receive honest answers from our members.

Remember Its Your Choice,

If one good thing came out of having AVR its having met all the wonderful people on this site, who offer fantastic support to everyone who joins

keep in touch

Jan

 

[BDMc]

Welcome!

Welcome!

Hey John! You are one of us now! I found this site when I was 21years post op, and still find it tremendously valuable. I think some of the girls have given excellent reasons for choosing a tissue valve, and certainly really respect their choices. Back in the old days of 1984 I didn't get a choice. I am however quite happy with how things have turned out! I take my warfarin every night, and, thanks to this site now home test every week I'm still fairly active, going to sail potentially 40 miles on a 16 ft. catamaran this Saturday. Believe me it'll be a workout! I went for a second opinion, and was advised by that cardiologist to wait, take Lopressor, and quit my job. I knew I had a time bomb in my chest, and wasn't comfortable waiting. Although I've lived with anxiety about my recalled valve, which I wouldn't have gotten had I waited, I am here! And I'm still at the same job! Life is good! Do what you feel most comfortable with to prolong it, and enjoy it! Keep us posted! All the best, Brian

 

[tobagotwo]

My two cents' worth...

1) What do I need to know from my cardiologist in terms of how bad my BAV and insufficiency is at the moment ? I have regularly read on the site of measurements of the valve, the flow rate etc and I am sure I need to know this but I am unsure what to ask my cardiologist and my next consulation.

Your real concern is more likely any symptoms you may be feeling, and the size of your left ventricle. Watch for growth of it in your echoes, even if the doctor doesn't rate it as enlarged.

2) What type of valve ? I know this is the standard question but it is so difficult. Mechanical = hopefully one surgery but just how difficult is it to live with Coudamin and keep my INR in range ? I have a very active lifestyle and social life and I am very worried of the impacts on this .Tissue valve = more surgeries but how long could they last and is the general consensus that technology may have improved substantially in the next 10 years to have mechanical valve that doesn't require anti-coagulants for life ? Is there anybody that has a tissue value that isn't on any medication at all ? I know in the end it will be my choice but I am trying to weigh up a second surgery against taking medication and being monitored for the rest of my life.

This is a highly personal choice, and you'll find many responses to it on the site. In short, the life statistics are pretty close for both kinds, with some edge for mechanicals in younger people, tissue in older folks. But not a lot. Coumadin is no big deal for most folks, but a trial for some others. Do a search for valve type and go through some of other people's thoughts, and see how they go along with yours. Your personality plays into the choice a lot.

3) What can I expect from surgery ? Is it really as bad as I think it is ? How bad is the scar ?

The surgery's effects depend on your age, general physical condition, and then the luck factor. For me and quite a few others, a piece of cake. For some, a painful and slow recovery process. Forget the scar: women love the scar.

Best wishes,