Bicuspid Aortic Valve Replacement - Tissue vs. Mechanical for a young guy

[bethanne]

Hi Eddie,
I too am new to the site and just beginning to consider "the decision".

I apologize in advance, but I had too laugh because when I first found out about my bi-cuspid aortic valve and my only symptom was fatigue. My cardio at the time didn't even want me to go up the stairs. He said I should always take an elevator. He had me so uptight I had several trips to the emergency room thinking I was having a heart attack, but they were only anxiety attacks.... no wonder. I have changed cardios 4? years ago. And have had a much better quality of life with exercise a part of it.
The point is this would be a good place to ask how many people on caumadin have had to limit their activities and how they have handled any serious injuries that have come up.

The beauty of this forum is getting to ask real people who are living with valve replacment versus "opinions out there" it may have already been asked and talked about you can do a search on the topics.

Probably what will make the biggest difference to me is what the surgeon suggest. It is my guess that surgeons develop a preference of valves to work with for whatever reasons. I like to think that successfull previous surgeries will influence their suggestion. My biggest concern about repeating the surgery is what is involved with removing the previous "sewn in" valve. I don't know the significane of that question but plan to ask my surgeon when i get one.

Keep us posted on your progress and remember the decision you make is yours to make! It is awesome that we do have choices

 

[KathyH]

About the aortic valve repairs, I saw Dr Cohn in Boston and he plans on trying to repair my aortic. He told me that if it won't last for my life, he won't fix it. He sounded pretty confident, so I assume he is pretty good at it.The hospital is rated #3 so I have decided on mechanical if he can't do the repair, because at 49, once will be enough for me. As for the clicking- the music of the 70's has caused some hearing loss, so I may not be able to hear it anyway.
Kathy H.

 

[JonS]

Tissue Valve

Tissue Valve

Eddie,

I had aortic stenosis with a bicuspid valve since birth. Like you, I had a balloon angioplasty when I was 15 years old. Every year I went for an echo and in 2002 my cardiologist said the time was near to get aortic valve replacment surgery. In February 2003, when I was 32 years old, I had the surgery and got a Carpentier-Edwards bovine tissue valve.

I kept going back and forth between getting the mechanical and tissue valves. I snow ski, go camping, bicycle and felt I didn't want to be on Coumadin either. Just over a year after the surgery I feel great and only take an aspirin and toprol. It was a very difficult decision for me to go with the tissue valve, but after talking with my surgeon, I felt like it was right choice for me. The surgeon told me that even mechanical valves may need replacing because of tissue growth around the valve. I figure in 15-20 years (hopefully) I'll get a mechanical valve and be on Coumadin then when I'm a little older.

It is difficult to think about another surgery, but you have to be hopeful with advancing surgical techniques and valve technology. I just enjoy every day and am grateful that my surgery went well, and try not to think about the next surgery.

Jon

 

[Hank]

Valve Noise

Valve Noise

I heard my valve once when I took my first bath in a silent bathroom after my surgery, but haven't heard it since. I have a St. Jude aortic mechanical valve.

 

[RayinSF]

Hey there Eddie {and eveyone else here}


I have been lurking around here for a few weeks, and when I saw your post, I had to reply. I have the EXACT same diagnois as you, and am also a young guy. {35} My surgery is tentatively scheduled for July 1st. I also have the Exact same concerns as you. In fact I am meeting w/ the surgeon this Fri to discuss my valve options. I am leaning towards a tissue valve vs. mechanical because of my concerns about blood thinners. I am a mechanic, and am cutting my hands constantly. I am also an avid snowborder and mountainbiker and am unsure if the medication will alow me to continue with these activities. Another concern I have, {and maybe those of you who are on blood thinners can answer this for me } is alchol. Can you drink {in moderation, of course} when you are on blood thinners?? I know my concerns may sound petty, when it comes to life or death, but changing my life style is what really worries me about this surgery.

I cant tell you all how stoked I was when I found this website. It is so nice to know that there are other people out there who have dealt with this! Anyways, thanks for letting me babble on here, and I look foward to asking you all a TON of questions as my surgery nears! And Eddie, any info I get about valve options, Ill be sure to pass on!
~Ray

 

[edjspi]

Hey Ray and Jon - I think you just won the award for 'closest to my own situation' Thanks very much for posting your thoughts...


another thing I wanted to expand on is what is my biggest fear with this, and what is influencing my decision the most with t valve choice: I play drums in a rock band. this is my second full-time job. I am VERY physical when I play. very UNLIKE Ringo Starr while drumming, more like Keith Moon or Dave Grohl when playing. We will be potentially touring a LOT more than we already do the rest of this year - so what kind of valve would be best for me if I am going to be on the road a lot? and how long will this surgery put me out from playing drums - either at home or live with the band? REALISTICALLY!


I have the first appt and meeting scheduled with the surgeon that my cardiologist suggested: Thurs. at 11:30 am. I think I will learn a lot there... I'm VERY interested to know what the surgeon's opinon is on what I should do. and I want to know what all the options are from his standpoint. I think this will influence my decision a lot...

I will be sure to post here after the appointment, and let everyone know what happens. Honestly though I believe my surgery will be scheduled for early-mid april. if it is completely up to me, I will do it on April 12 or that week

anxiously awaiting.....

-eddie

 

[mike shields]

Hi Eddie
I've had four OHS, the 1st one at 12yrs, 2nd at 18yrs, 3rd at 39 and 4th at 42. The first 3 were for the pulmonary and the last one was for the aortic valve. The first 3 were pig valves for the pulmonary valve, aslo had TOF repairs with those three. I chose a mechanical valve for the aortic valve. I can tell you each time it takes longer to recover as you get older.

 

[ALCapshaw2]

Welcome to Our World Eddie !

As you have probably figured out, you have hit THE HOT TOPIC on VR.com. There is a whole FORUM devoted to Valve Selection and I strongly encourage you to look it over. You should be able to find all sides of the issue therein (actually, the responses to your question come close to covering all the issues, but reading more opinions from slightly different perspectives may help you decide which you are most comfortable with).

You REALLY need to understand about the ROSS Procedure and it's potential benefits and risks. If that approach appeals to you, then you need to find a surgeon who has CONSIDERABLE EXPERIENCE with at that procedure. The same applies to the various types of Tissue Valves. ANY Heart Surgeon who does Valve Jobs should be familiar with the St. Jude Mechanical Valve but NOT every surgeon does all or even several Tissue Valves so it is often best to first decide on your valve preference and THEN look for an experienced surgeon.

There is a New Mechanical Valve that has VERY promising benefits made by On-X which has been discussed on the VR.com. You can find it by doing a SEARCH and typing in On-X.

I suspect the noise issue primarily stems from older valves and / or valves made by some other company than St. Jude. St. Jude also has an improved Mechanical Valve with better 'flow' characteristics that may be worth looking into.

For Tissue Valves, I like the Bovine Pericardial Tissue Valve which is made from the pericardium of a Cow's Heart and shaped to resemble a human valve. This is the Valve of Choice for Dr. Cosgrove at the Cleveland Clinic which is the #1 rated Heart Hospital in the world. Actually, this was my first choice, even though I had had OHS previously for Bypass Surgery. Unfortunately, my surgeon did not feel that was a good choice once he 'opened me up' and installed a St. Jude Mechanical Valve instead. I rarely hear it and even when I do, it is a 'soft click' which I do not find irritating (as I thought I would before my surgery).

Bottom Line: EVERY valve has it's positive aspects and it's negative aspects. It appears to me that most of us select the valve whose negative aspects we feel we can best live with.

Keep on doing your research and you will most likely come to a 'comfortable place' and then know where you want to go.

'AL'

 

[Gnusgal]

Hey, guys. I know you haven't heard from me in awhile. I've just been focused on other things in my life right now (namely these blasted headaches I've been having for the last several weeks!). The woman who posted to Eddie on the other board was me. Yes, I regret not having a choice, but right now I am also HATING my mechanical valve. But maybe that's the headaches with a constant clicking in my head talking... (And my clicking is loud. I can hear it even in a room full of people. One doc (my neurologist) even figured out I had a mechanical valve just by walking into the room and sitting across the table from me!

Later all,

 

[Gemma]

Hi Eddie and everybody!
My boyfriend Jim had a mechanical AVR in December, he's 27 and had a bicuspid aortic valve which was leaking.
I think everyone's pretty much answered your questions already, but here's a couple of things I thought of -
1 - Look in the Active Lifestyles forum - there are a couple of threads on water and snow ski-ing at the moment I think, if you can't find them change the length of time at the bottom to more than 30 days.
2 - drinking on coumadin - 2 drinks apparently has little effect, any more and you run the risk of serious bleeding (have a look at Al Lodwick's site www.warfarinfo.com for more info).
3 - I can hear Jim's valve, especially if I put my ear to his chest. The rest of the time it sounds like a watch ticking, and I think I'm the only person who can hear it really - but I do have hyper-sensitive hearing The cardiologist asked if Jim could hear it ticking and although I was further away than him I pointed out I could hear it from where I was! Don't think this is a bad thing though - before the op his whole chest shook every time his heart beat. I know which I prefer.
4- Really the choice is up to you, personally having seen how it affected Jim, I think if I had to have a valve replaced I'd go for a mechanical one - wouldn't fancy having OHS more than once unless totally necessary.
5- as you said about coumadin Eddie, if you had a tissue valve and continued to have A-Fib, you may end up on coumadin anyway - not definite I know but it's something to consider I suppose!
Nice to see so many new people, can't believe how many newbies there have been since I joined in October
Gemma

 

[Gnusgal]

For the record. I have a St. Jude's valve that was placed in 2002.

 

[RonP]

How have you been making it with your valve? Has it been recalled? Mine has and it does worry me but they are watching it. It's leaking some, but not substantial. They say it's their job to do the worrying so I leave that to them.

Have a good day.

Ron P.

 

[Shelba]

I had valve replacement surgery (mitral) on March 3, just a little over a week ago.

I went with the mechancial valve, and I'm glad that I did because I do not want to do this again in another 10 years. That is me though. I really struggled with the mechancial vs. tissue valve issue, and I almost went with the tissue valve, so I feel for you. This is not an easy decision.

I am 31.

I can hear my valve when I am in a quiet room...and only if I open my mouth. As soon as I close my mouth....the clicking goes away. The clicking I hear isn't loud, it is very soft.

Good luck, you'll make the right choice for you.

 

[RonP]

Hang In There Shelba

Hang In There Shelba

Shelba:

The worst is over with now that you have the surgery behind you. Just continue to make a little progress each day and you'll do fine.

I will most certainly keep you in my daily prayers and that will make a world of difference.

As I very well remember, those first several days are sure painful ones, but the meds controlled the pain. I was glad to finally get rid of those for they made me sleep all the time. It got much better after they allowed me to drive again.

Hand in there and the good times are just around the corner. Once your strength returns, you'll be amazed at the improvement the new valve will make. You'll have more stanima and more endurance and this makes a world of difference.

Have a great week.

Ron P.

 

[MarkU]

Just a couple of comments to add after scanning through some of the previous posts:

1. There are different versions and sizes of St. Jude valve. You can get a lot of info on their website. The size is related to the diameter of the opening, which in determines the amount of blood flow. Generally surgeons try to install the largest one they can.

2. As my INR stabilized, my cardiologist has lengthened the time between checks to 6-8 weeks at my descretion. I also sometime travel with my job so this gives me some flexibility in getting tested. He does advise me to get checked before and after any extended travel, or if I go out of the country.

3. Regarding valve noise, one of the things mentioned to me was the effect of muscle and tissue in absorbing the sound. My surgeon told me that older patients who have little upper body muscle tone tend to hear their valves more than someone like me who lifted weight for years and has a thick 46" chest.

4. I work on my cars, do yard work, work out, do triathlons and very seldom, if ever, give my Coumadin a second thought. (The only real injury that I've had while working on my cars was when I was checking the oil and my Medic Alert bracelet shorted out on a live wire from the battery - the braclet exploded off my wrist. About a dozen of the links were "welded" together. I got a nice 1st & 2nd deg burn around my wrist that I had to sheepishly explain to people for a couple of weeks...)

Mark

 

[RonP]

Congential Biscuspid Aortic Valve

Congential Biscuspid Aortic Valve

Mark:

Is the congential biscuspid aortic valve the one you had replaced with the St. Jude Mechanical Aortic Valve? Are you getting along with it alright?

That's what I had put in me.

 

[MarkU]

Yep, They found my bicuspid valve when I was about 5 years old - they told me I would probably be okay until I was "really old" - in my mid-to-late 40's...
No real problems at all since my surgery in December of 2000. It took me about nine months to fully recover from my surgery - my sternum was sore for a long time. Since then I've had a very active lifestyle, including my first triathlon last month. The Coumadin has not been a problem at all...
Mark

 

[edjspi]

Hey Everyone

update:
I met with the surgeon last Thursday, and we had very informative conversation about my options, surgery and recovery specifics, his opinions, etc. and all of the information I've gotten from this site was VERY userful

yesterday I scheduled my surgery. it is happening on 4/13. I have not definitely decided on mech vs. tissue valve yet, but right now I am leaning toward a bovine tissue valve.... by suggestion of my surgeon. He is COMPLETELY leaving the decision up to me, but when I asked him 'what would YOU choose if you were me?', he answered with a slight hesitation - 'the tissue valve'. He thought the guaranteed need for repeat surgery was worth it to not have the coumadin. He talked about how even with a mechanical valve, you are not guaranteed not to have a repeat surgery. He said in fact last week he had to replace a mechanical valve because of tissue in growth I think... He also gave an example of a 65-year old man he just did FOURTH valve replacement on!! the guy had VR at age 30, 40, 50 and 65, and he still chose to have a tissue valve the fourth time. THAT sounds a little crazy to me...

So like I said, I'm leaning toward that now. Although he DID tell me that the valve click on mechanical valves he rarely sees anyone complain about. I can decide even only a few days before though. there are SO many pros and cons to both, I just keep going back and forth with it! but hearing everyone's story is very helpful...


Shelba: glad to hear you are done with the surgery!! how are you feeling only a week post-operation? what can you tell me about the whole experience? this is mostly what I've been questioning recently. they have told me that I can expect 4-6 weeks of no working, driving, or heavy lifting. 10 weeks for the sternum to heal completely, so no lifting more than 50 lbs until after that. they are mostly concerned about the breaking of wires holding the sternum together before it heals.. did this happen to anyone on here or has anyone herad about it? they said there are no external stitches, only internal that dissolve on their own. I asked him about the removal of the chest tube, he said I will still be somewhat sedated for that, and numbed up very well.... he said about 1 in 10 people complain about pain with that...

most people with mech valves tell me that a life with coumadin is much better than repeated surgery, but some have told me that the surgery 'wasn't that bad'. why is the surgery expereience so drastically different for people (other than age)? maybe I'm naieve since I haven't done it, but I feel OK with a repeat surgery in 10 years if I can 'forget about my heart problem' for 10 years, like I have done for most of the first 29 years of my life!

thanks,
eddie

 

[bvdr]

Eddie,

Not to sway you one way or the other but also know that a tissue valve is no guarantee you won't be on coumadin long term. Atrial fib is a possible complication and that requires coumadin.

 

[SJJ]

Eddie,
I know it seems like a contradiction that many of us have claimed that the surgery wasn't that bad, but at the same time, we wouldn't want to go through it again. If it helps to clarify a bit, there was about a 48 hr period of my time in the hospital that was very uncomfortable. No, I wasn't awake an /or alert all of that time but it was decidedly unpleasant. Once you're through that part and can put it into some kind of perspective, you realize it really wasn't as bad as you'd anticipated. I CAN tell you this; had I awakened from my surgery and known that I'd have to go through it again, even 15 years hence, I would have been very depressed by that realization and continue to feel so 3 weeks post-op tomorrow. For me, this would not merely be a matter of going through the whole surgery/recovery process again, but also the slow deterioration that would precede the next surgery and the fact that my older body would not recover so quickly. I hasten to say, and underscore as well, that this is MY personal response and other's experiences and decisions are equally valid and sound, just different from my own owing to a myriad of influencing factors. There simply is no general right or wrong decision as to valve choice. Do the homework, make an informed decision based on objective data and your own self knowledge (what you do and don't handle well and the lifestyle you seek) and once you've made a decision, embrace it as the life saving choice that it is and it therefore becomes the "right" decision for you. Or at any rate, that's my take on it.
Cheers to having a surgery date. Many of us experienced that as a real relief.
My best,
Sue