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rufus

Well-known member
Joined
Sep 27, 2008
Messages
48
Location
Brighton, UK
Hi,

I would like peoples worldly advice for a friend of mine, i have a mechanical aortic valve and have had nothing but problems with warfarin and i know very little about other procedures so any help would be greatly appreciated as my experience of mechanical valve isn't the most positive. Others opinions would be greatly appreciated.

He has been given the option of a mechcanical valve, pigs valve or the ross procedure. He is very active late 30's, enjoys the gym (weights etc) and is a tutor in self defence / control and restraint techniques working as a Corrections Officer (prison Officer).

Hopefully he will be getting access to a computer soon so he can look more in depth to some of the great advice on here, however in the meantime i look forward to some comments i can pass on to him.

Thanks
 
I've been around the forum long enough to know this post will probably cause a stir, lol. But that's ok, it's a great place to hear from lots of folks about their opinion. Just keep in mind there are passionate people on both sides of the argument, and noone is "wrong" - just have differences of opinions. Just didn't want you to be surprised if this stirs up some passionate replies - on both sides. I think most people agree, it's a personal choice, so as long as you know what you're signing up for with either choice, mechanical or tissue, there is no bad choice. Both have pros and cons. But the key is making SURE you understand what you're signing up for.

With that said, I'd be interested in the problems you've had with your valve and warfarin. It's one of the few times I've heard from someone who had issues with either. Granted I'm still early in the process (7 wks after surgery) but so far I'd echo the experiences of the majority who say that neither the mechanical valve (including it's noise) nor the warfarin have been a problem for me. But I would be interested to see what issues you've run into.

I'm not a medical professional, and keep in mind the following is based on the opinion of just one surgeon (i.e. other surgeons may feel differently) but when I asked about the Ross procedure before surgery, my surgeon said if I wanted one of those, to go somewhere else. He explained why, although I've forgotten the details now (I think that's where he brought up the story about a surgeon buddy of his who did a Ross procedure for the Govenator out in California - and it didn't work well - they had to re-do it I think). He's not in favor of them at all, except in some rare cases where he feels they are warranted (kids if I remember right). Keep in mind, that's only one surgeon's opinion, there may be others who would disagree.

While that same surgeon said he WOULD do a tissue valve if I really, really wanted one (as I was leaning towards at first) he talked me out of it pretty quickly due to my relatively young age. My cardiologist and many in this forum echoed his sentiments, and the main reason was because of the certainty of another surgery or two down the road if I went that direction. It seems to be pretty well documented (and many on this forum will give their experiences which seem to back this up) that tissue valves in younger people (30's or 40's) often only last closer to 7 years than the 10-20 I was hearing initially.

Lastly, I'd suggest your friend read through the active lifestyles forum on here. There are quite a few weight-lifters and otherwise active folks on here who went mechanical. And I have talked to my docs many times about how I want to start lifting again and playing basketball again and they've told me neither will be an issue. My understanding is I'll be able to lift as much as before once I'm past the 3 month mark. The prison officer thing might require additional thinking, I'm not sure what all kinds of things that entails. A knife fight with a prisoner might be a little scary if on Coumadin, but as I think many will be quick to point out, that would be scary even if not on Coumadin. But as far as being active, lifting, tutoring self defense, etc. I don't think those should be a problem at all.
 
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I have to agree with Andy and ask just what kind of problems you've had with warfarin. I had a problem initially because of another medication I was taking, but the last several months have been totally trouble-free for me. I've never met a vegetable I don't like, and freely eat vegetables and salads with no problems. So, if diet is a concern, it really need not be.

If your friend doesn't mind having several more surgeries, than a tissue valve would be great. I wouldn't hold faith in the hope that sometime soon valves will be replaced via the femoral artery rather than surgery; I think it's better to decide based on the here and now rather than what might be possible someday. Another downside of the tissue valve is that they tend to need to be replaced sooner in younger people. Your friend may need to have it replaced in 5 to 7 years, or it may last him 10 years or longer. There's a lot of talk about tissue valves lasting longer, but there really is no set amount of years to rely on. To me, it seems too much like a crap shoot.
 
Rufus -

You need to know that The Most Common Reason for "Problems with Coumadin" is P*** Poor Management by the person managing the Testing and Dosing.

Avoiding vitamin K vegetables is often an inviation to wild fluctions in INR since a relatively small increase (from Zero) can cause a change. Maintaining a "consistent" level of Vitamin K has been Proven (by Tests in a Study) to help maintain more consistent INR levels.

Over-Reacting to slightly High INR readings by HOLDING Doses is an invitation to a Roller Coaster Ride in INR results.

Those a just a few of the things we see from Out Of Date Managers.

'AL Capshaw'
 
If you want to go through the op again in a few years or maybe less then have a non mechanical valve. In the UK mechanical valves are recommended for anyone under 60 and your friend certainly is way under that. The mechanical valves do tend to attract blood clots hence the need for warfarin. Warfarin can cause problems and can inhibit your lifestyle but compared to the alternative they are minor problems. I have had my mechanical valve for 20 weeks now and it does tick sometimes, I am coping with the warfarin and getting used to it and the change in lifestyle that isinvolved. It is also not unusual for those with tissue valves to need warfarin too. I cannot think that an active lifestyle is in any way harmed by the type of valve you have and in most cases would help recovery. The heart being a muscle needs exercise to function properly and I do know that an exercise regime is necessary for ones recovery. It may be that the heart has been damaged due to the original valve not functioning properly and in this case medical advice is needed. It is a difficult choice to make but we all have made it and hopefully with few regrets.
 
Hi, I'm sorry you are still having problems this many years (3?) later. My father wasa prison warden, so could understand the concern being a prison guard, depending on his job. If he teaches restraint, I'm guessing he problably works with getting the combative prisoners under control, which can be pretty tough. To answer your question about tissue valves and Ross, do you know if he has a bicuspid valve? Sometimes because of the connective tissue problems that can go along with BAV, many doctors do not recomend them.BUT IF he isinterested in getting a Ross, I would suggest having a surgeon that has alot of experience in doing them. I don't know much abot pig valves, the tissue valves that have the longest proven track record are the CE perimount bovine in the Us They (any tissue valve) will not last as long in someone in their 30s as 60s, (this is the valve many centers including the Cleveland clinic , use in most of their patients 40 and up) and the St Jude Biocor (pretty new in US but 20 year record in Europe ) which is a mixed grill cow/pig.
 
Guess it boils down to reoperation versus popping a pill. Generally speaking, the basic advantage with tissue valves is avoiding anticoagulant medication. The downside with tissue valves is having to have periodic reoperations to replace the tissue valve, which generally last 12 - 20 years or so. Generally speaking, the advantage with mechanical valves is avoiding reoperations. The downside with mechanicals is having to take anticoagulant medication. I'd recommend that your friend have his doctor give him a prescription for Coumadin (aka Warfarin) and have him try it out well before his operation to see how he likes or dislikes it. He needs to be off the Coumadin for at least several days before the operation. He should also research the Coumadin side effects and get as much information as he can about Coumadin. Then too, he should think about whether he wants to go under the knife again at 12 - 20 year intervals if he goes with a tissue valve.

Pop a pill vs. get cut open periodically. That's the choice.

Good luck.
 
Agree with Dtread with one caveat. The 12-20 years seems pretty optimistic for someone in their 30's based on what I've heard. Again, I'm not an expert, but based on what I've read, and it seems to be backed up by a few on here that have experienced this, tissue valves apparently tend to last shorter periods of time in younger folks (30's & 40's). So, while early on in my research I was hearing 12-20 years for re-op timeframe with tissue, towards the end of my research, it was sounding a lot more likely it would be 7-10 years for someone like me that was pre-60. Perhaps something to weigh into the decision.
 
Agree with Dtread with one caveat. The 12-20 years seems pretty optimistic for someone in their 30's based on what I've heard. Again, I'm not an expert, but based on what I've read, and it seems to be backed up by a few on here that have experienced this, tissue valves apparently tend to last shorter periods of time in younger folks (30's & 40's). So, while early on in my research I was hearing 12-20 years for re-op timeframe with tissue, towards the end of my research, it was sounding a lot more likely it would be 7-10 years for someone like me that was pre-60. Perhaps something to weigh into the decision.

The research I've seen studying bovine valves in younger patients have been along the lines of CCF http://my.clevelandclinic.org/heart/disorders/valve/youngvalve.aspx
"Drawbacks: Studies on the PERIMOUNT pericardial valve have shown that in a 40-year-old patient, these valves have a 50 percent chance of lasting 15 years or longer, without decline in function. In younger patients, these valves will not last as long, but will still last longer than previous generations of bioprostheses. In older patients they will last longer"
Also coumadin is more than just "popping a pill", there ARE risks to coumadin. The small chances of dieing from surgery and REDO are about the same asthe small dieing from mechanical valves/coumadin. In the end the chances of having a long happy life are about equal no matter which risk you rather live with.
Which is why valve choice is such a personal choice and many younger people choose mechanical and cumadin and many others choose to have a tissue valve knowing they will have one or more REDO. and most are VERY happy with what choice they made and don't understand why everyone doesn't make they same choice they did.
 
I think it important in any conversation about warfarin to mention the difficulties that sometimes arise when other medical/dental procedures require bridging off of coumadin, having the procedure and then getting INR back to therapeutic anti-coagulation levels. While it often is done in a safe, relatively smooth experience, there sometimes are less than desirable episodes. Bridging is something that always has to be considered as well as any other medical conditions and general health of the patient.
 
Choices

Choices

Hi Rufus,

Your friend's occupation may be a determining factor in his valve choice. Sure, someone with an artificial valve can engage in contact sports and activities. We occasionally hear from folks who engage in full contact marshall arts activities and are no worse for wear. Someone even reported continuing his avid pursuit of rugby despite getting an artificial valve and taking coumadin a couple of years ago. A question your friend needs to pose to his employers involves whether or not his duties would remain the same if he is taking coumadin.

Often you'll hear some of us say that there's no such thing as a bad choice when valve replacement is necessary. That comment is sincere. Even if the choice that is made presents some challenges, it's better than beig dead.

You're certainly not the first to comment that dealing with coumadin is a pain. While members like myself haven't had negative experiences with coumadin management, perspectives and personal experiences obviously vary.

-Philip
 
FWIW, I am very glad I have a mechanical valve, as there is very little chance that I would need it to be replaced. The Coumadin issue has not been a problem either, so am now kind of curious what kind of problems the OP (original poster) is having with that? I was worried about that ahead of time, but it is basically a non-issue/non-event kind of thing, I was happy to discover.
 
I'd recommend that your friend have his doctor give him a prescription for Coumadin (aka Warfarin) and have him try it out well before his operation to see how he likes or dislikes it. He should also research the Coumadin side effects and get as much information as he can about Coumadin. Then too, he should think about whether he wants to go under the knife again at 12 - 20 year intervals if he goes with a tissue valve.
Good luck.

I disagree with the first part because so many people are mismanaged that a trial is likely NOT to show the person what it's really like. If you have a pee poor manager, your going to have problems from the get go and it doesn't need to be that way.

As for the second part, I fully agree. Everyone should make learning about Coumadin part of their decision making process.

I was once Coumadin free. All the things I heard about the drug had me feeling sorry for those that were on it. Then one day, I found myself on it and have found that I listened to more BS, then truth about the drug. I now know what it's all about and it's nothing to be feared as so many others would lead you to believe.

Your body wasn't meant to be cut open again and again. Each time your opened, another little piece of you goes missing and it does add up. After my last, I've got so many problems that I didn't have before, that I cannot, in good conscience, tell someone young to resign themselves to more surgeries.
 
I agree with Andy.....since i spent agonizing weeks researching the choice in valves......Ive never second guessed my decision to go with a ST JUDE mechanical valve. Ive watched numerous health videos and also agree that the majority of problems with coumadin is either the fault of the patients vigilance or the lack of FREQUENT INR testing. ( its not a set and forget type thing that only requires once a month testing across the board with ALL patients) Its like anything else....the more you put into it...the more positive results you will get out of it. And people are different and need to be monitored based on their own individual circumstances. That's just one persons opinion, but i am happy with my choice and find coumadin has not been a life altering situation. Mike
 
I had a Homograph put in when I was 29 and wasn't phased by the idea of having multiple surgeries.
It lasted 11 years for me.At 40, I was faced with AVR again and decided I didn't want to go through any more surgeries if possible.

I don't regret the choice that let me avoid coumadin for 11 years but neither do I regret being on coumadin now.
Mind you , I have only been on ACT for 10 weeks now.
 
My guess would be that there is a higher percentage of us who've had 2 or more surgeries that decided on mechanical the second time to try and avoid a third, than there are who went with another tissue. I know there are exceptions but once youv'e had 1 surgery and are looking at a 2nd, a third doesn't sound like a real good idea.

Armed with that knowledge I would have made a different decision 8 years ago and gone mechanical the first time.
 
Had a Homograft installed at age 34 in 1998. Just over 12 years later and expect it to be replace in the next couple months. I do a lot of bicycling (approx 3,000 miles a year) and have been concerned about Coumadin if I had an accident (and I do). I am sure that I would do a bio valve again. I'll be better able to answer that after the re-op.
 
Hi All,

Many thanks for all your comments - its certainly helping my friend with believing he has to go with what he feels comfortable and gives positives for all the options. Keep the opinions coming though.....very interesting and helpful.

In relation to me i had valve replacement december 2007 (aortic valve) - previously undiagnosed problems of a heart murmur that was only identified when i went to the doctor with a cold!! No symptoms up to the day i was operated on (approx 3 months later), i was not given a choice of valve , informed i was having a mechanical one and that was that.

Having read some of your comments i've come to the conclusion that the majority of my problems is due to piss poor management by my clinic in relation to my dosage (as stated by a few of you !). The warfarin doesn't particularly agree with me, when first out of hospital after op was on 2.5mg daily, i am currently on 12mg daily. My diet doesn't change, my lifestyle doesn't change yet my INR can go from 1.3 some weeks to 5.1 other weeks - no identified reason yet the clinic obviously adjust the dosage depending on INR. I was additionally diagnosed with an over-active thyroid Jan 2010 which means more meds and potential pitfalls.

I was hopeful in the beginning, having the vision that within 6-8 months i would be allowed to home test, however my INR range has to be stabilised for at least 3 months (between tests) before they will even consider it ! At least if i could home-test i could 'play around' and let my lifestyle dictate my dosage rather than the other way round. Maybe i will get there someday but i still have frequent occasions where i am having clexan injections as well as warfarin. The longest i have ever gone in between blood tests is 3 weeks - which is frustrating after 2 1/2 years. :O(

I like my friend work as a prison officer and have tried where possible to not let my 'down-heartedness' effect my work but it can be difficult when im either in hospital to get my INR above 2 or extra cautious because it has shot up to 4 or 5 bearing in mind the sometimes volatile situations i can find myself in.

Anyway enough waffle - keep the comments coming please.

Thanks

Rufus
 
Rufus come down to the anticoag forum and post all the meds your on, your current INR, how often your tested, current dose and such, and we'll be able to tell if we can get you squared away and stable. I think just about all of us have had the same experiences until we grabbed the bull by the horns and started doing things for ourselves. It's hard to believe that a drug that's been around for 50 years, still cannot be managed properly by most so called experts. It's not rocket science. We figured it out, why can't they?
 
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