29yrs - valve choice and aortic aneurysm ( difficult decision due to way of life )

[Northernlights]

I think your own valve is likely to last longer than a tissue valve, particularly if the gradient has scarcely moved in 14 years. Alberta looks to be a good hospital but I wonder if they have any specialists in valve repair / valve- sparing / ross. Surgeons make decisions based on the operations they like doing and often downplay these specialised operations because they aren't good at them! Since there is no great rush I would ask your questions, and also get a second opinion - even if it's only emailing a valve specialist in Montreal or Ottawa with your situation. Dr Macarthur seems to mainly be interested in aneurysms, though I'm sure he's a good surgeon.

Warfarin is manageable but your circumstances certainly make it extra complicated. Self-monitoring would be the only possibility and you would have to be meticulous. It's not so much bleeding with chainsaw injuries (though it wouldn't help, obviously!) as hitting your head which is particularly dangerous with warfarin.

BAVcyclist - you are fortunate to have a Ross expert. You have to be realistic and know it may fail and necessitate further surgery, but I feel personally it's an opportunity worth taking if you have a really good surgeon. In any case you know you are in good hands!

If you are interested in this, JulienDu, it would be worth contacting someone like Ismail el-Hamamsy at Montreal, who worked a lot on valve-sparing / repair / Ross under Sir Magdi Yacoub. I always think it's worth getting another opinion, if only to clarify your own feelings about what's most important to you. But once your own valve is out it's out, so I wouldn't be rushed into things, even if ultimately you do go for replacement!

 

[pellicle]

Hi

Mechanical versus tissue is always discussed here as warfarin or 'multiple' re-ops

its not just us, you'll see it also discussed that way in the medical literature.

, but if you choose repair/ tissue/ homograft or Ross now, that does not commit you next time (whenever that will be) to the same choice.

I would say ( as a homograft recipient) that neither it nor the Ross have proven durable in younger people. The homograft is a very specialised surgery (from what I have read and been told by my surgeon) and far more delicate than you may grasp. Even a faint touch to the valve sufrace will damage it. So to me the Ross is worse, because two valves are involved instead of one. I believe that the Ross remains in existance because some surgeons like doing it because of the challenge.

If minimising time on the pump and minimising scar tissue is your goal as a surgeon (and it should be) then the Ross is to me unethical. (I suspect you hold similar views as to the durability of the Ross)

There are members here who got far less time out of their Ross than they hoped. Seven Years comes to mind. I do not like to make them feel bad by mentioning them, but if you search you will find it.

A complication of the Ross from elsewhere:

Hello Everyone,

I had the Ross procedure done this past June. I've had a number of different problems after that. A few include two procedures(one for gall bladder removal the other was an ablation for AVNRT.)

Now my oxygen levels drop to 85% when sleeping. I had a number of sleep studies done, and I do not have apnea. Echo last week showed that my right ventricle is enlarged and my pulmonary arteries show an increase in pressure. My cardiologist is out of town and I am supposed to review the results with him next week. A friend of mine is a cardiologist and said what I described sounds like what some people go through with the Ross. He said they construct a conduit during the ross connecting the right ventricle to the pulmonary arteries. Sometimes scar tissue forms and interferes with blood flow causing the right ventricle to enlarge. Has anyone here heard of this or had it? What have they done to help it. Any input would be helpful. Thanks!

Best Wishes and Happy New Year

 

[Northernlights]

Pellicle

In fact the medical literature often points out that there is considerable crossover in valve choices. Besides, we're talking about real life here, and my point stands: a first tissue valve does not mean all the rest have to be tissue and 'multiple' operations.
Re the Ross, of course some people have problems with the Ross as with any surgery ( which is why the choice of surgeon is so very important) , and reoperations are definitely a possibility, as they are with tissue valves, but I do think it shows extreme prejudice to call them 'unethical'. Minimising time on the pump and scar tissue is not the surgeon's only goal. In fact one of the chief advantages of the Ross as of the homograft is quite simply that being human valves they are better working valves than either tissue or mechanical - partly because they are thin and pliable! There is a reason the Ross remains the haemodynamic gold standard of valves, with excellent survival and exercise ability. It remains in existence not because surgeons like the idea of a difficult challenge (!) but because the expert surgeons who do it believe it is a solution worth the technical complexity. Interestingly, the anaesthetist who worked with Magdi Yacoub when he perfected the Ross, chose it for his own valve surgery.
In all the statistics there is always the matter of luck, and the Ross's that failed on this site are mainly men with previous aortic regurgitation and large annulus - a known population at risk.



The anecdote you cite seems very unlikely at that stage to be pulmonary artery stenosis of the homograft as suggested, though of course you can hunt out complications of surgery, just as one can dig up brain bleeds from warfarin and mechanical surgeries that went wrong. I'm not sure of the point of such anecdotes though.

All these valves have their advantages and disadvantages and the Ross is no exception, and if avoiding absolutely any future operation is the poster's absolute priority he should go for mechanical. However some people have other priorities, and though I think your posts on warfarin management are very helpful I don't see the point of rubbishing an operation that isn't your own personal choice.

 

[MethodAir]

It is perfectly reasonable to choose a non- mechanical valve which will be easier to manage in the wilderness, and enjoy those years without warfarin, and then choose a mechanical next time, when your risks will be basically the same as the first time - minimal for someone young in good health.

Multiple (potentially superfluous) open heart surgeries are not reasonable to me. I would also be concerned about the years of declining valve performance.

Warfarin has been a pretty small factor in the scheme of things (as it should be).

 

[pellicle]

Hi

I hesitate to respond to this because it seems you are verging on character assassination of me for speaking my mind. Your denigrating tone about (your perception of my extreme prejudice) is sadly wrong and unhelpful.

I'm occasionally criticised here for being verbose, so I'll attempt to be brief:

Pellicle...
and though I think your posts on warfarin management are very helpful I don't see the point of rubbishing an operation that isn't your own personal choice.

Please write to the facts. I have had 3 valve surgeries, I do not have personal choices I only have what happened. In my life valve surgery has changed from take the advice of the surgeon to "consumers buying a washing machine". So many are instant google experts.

You will uncover when you read that Ross procedure represents a very small fraction of valve operations. Most of what is written is to establish that it is a valid alternative. So the premise in the literature is is one of supporting it as a valid alternative, rather than it being any kind of gold standard.

Besides, we're talking about real life here, and my point stands

as does mine ... its quite OK for us to disagree ... on the subject of real life I was under the impression you are still in the waiting room and so it seems to me that you have NO real life / direct experience in this matter, please correct me if I am wrong.

a first tissue valve does not mean all the rest have to be tissue and 'multiple' operations.

As you must have missed it the gentleman in question has already had one operation ... so you are in essence setting him up for a third by proposing what you have... you make the point that I am being prejudiced but I will make the point that you seem to not have read the question and indeed answered to the needs of the asker. I suspect you are answering to your own needs and your own concerns as a man of 61 when answering the questions of a man who is not yet 30.

In your earlier post you you say:

when your risks will be basically the same as the first time

this is simply wrong and while the difficulty of a reoperation has reduced over the decades it is unequivocally riskier than the first. In your rush to sledge me and defend the Ross (which would seem a good choice for your needs IMO) you missed that this man has already had his first operation this operation will be a second ... and you are counselling him to go for a third simply to kick the can perhaps 12 years down the track. Please address that point.

When you have had three OHS please post back about your perceptions of my bias; I expect your opinions may have changed.

You sir seem more interested in arguing against me for the sake of it (or perhaps for the dislike of me). Should you wish to discuss my views with data on a counterpoint I will be pleased to read it. As always I am pleased to learn.

Indeed perhaps your arguments are more about your own choices than an unbiased answer to a person half your age asking for guidance on his second operation and asking questions about alternatives.


Best Wishes and I wish you well in your surgery

PS
I get sick of being a punching bag for anyone who simply disagrees with the facts that I present. I have my own experience and that covers decades. I get sick of people with no personal experience attacking me as if what I say is some fiction. No other person here seems to be disrespected as much as me. I consistently come here to help people like Julien who seek advice and real life experience ... not to be sledged by people who have not yet gone through the wringers.

If YOU had been through half of what I've been through you'd have some sort of respect for that (even if you don't agree). If you think personal slights do not effect me then you are wrong.

 

[Seaton]

Hi Pellicle

Just to say (and apologies for going off topic on dear Julien's post), I, for one, am ever and deeply grateful for all your input here. I find it profoundly helpful and always compassionately to the point. So, thank you.

Peace.

Seaton.

 

[Northernlights]

Dear Pellicle

Your post is completely over the top. You seem unable to take the slightest objection to your arguments and opinions without flying off the handle. Any disagreement is a perceived slight at which you fire off these furious posts ( which are indeed very unpleasant to be on the other end of). I don't think anyone does attack you on this forum but you often seem to think you are. I must admit I have not responded in the past to your posts about the Ross because I feared this very reaction- I certainly don't disagree with your opinions for the sake of it! As a woman, this to me is the most unpleasant part about the internet.

I had better make it clear: of course I do not dislike you ( I don't know you ! ) and I actually have great sympathy for the difficulties and huge anxiety you went through with your infection, made even worse through the terrible tragedy of your wife's death. I have read your blog posts on your grief with enormous sympathy and admiration. I cannot imagine anything more terrible. I also feel you make a huge contribution to this forum in demystifying warfarin ( though I am sometimes feel you go a bit too far- a certain amount of fear is healthy!). We also have it in common that I love being in the Arctic wilderness! I quite understand that your infection has coloured your attitude to the prospect of surgery in your advice to others, but at the risk of bringing down more wrath on my head, it is a rare though devastating event( just like valve thrombosis), and hospitals are doing a great deal to reduce their deep sternal infections level. Obviously it was terribly unlucky, but I do wonder whether your hospital's infection precautions were as good as they might be.

But it is not 'sledging' or 'character assassination' to consider that you were expressing a blind spot and prejudice about the Ross. Of course it's not perfect - no valve operation is - but I'm afraid I do think it is unhelpful to rubbish one particular operation of which you have no experience as 'unethical' and say it only exists because surgeons like a challenge. That's not 'presenting facts' though it is a bit of character assassination of the surgeons!


I did not in fact recommend the Ross to the poster: I recognised he was in a difficult and unusual situation, and I certainly think it is a better choice than a tissue valve, which was the other alternative to mechanical he was considering. What I recommended was that he talked to an expert surgeon about the entire range of possibilities, and I stand by that. I think a second opinion from another institution is always useful, and many people are unaware of the range of possibilities (and I mentioned all of them, not just the Ross and always spoke to the poster about homograft/ valve- sparing/ repair / Ross). I do not myself consider a third surgery would be excessively risky, particularly since his first surgery was a very long time ago (though it's obviously a disadvantage, and I actually did point out that if his priority was avoiding further surgery he should go for mechanical), but I would never presume to tell him what choice to make (in fact BAVcyclist first mentioned the possibility of the Ross). Anyone who makes their choice based on what an internet forum says is an idiot! In his place ( but I'm not and neither are you or anyone else here) I would be most interested in exploring keeping my original valve, as indeed several other posters have suggested.

My second post on the Ross was purely a general one, not aimed at the poster, and was purely because I considered your criticisms of it as ' unethical' very misleading - and indeed prejudiced, and I still do, and obviously people other than the original poster read these things, like BAVCyclist. You are not the only person with a Ph.D who reads the academic literature, and I assure you I have read virtually all the literature on the Ross, and it is the accepted haemodynamic gold standard, ie it has the best haemodynamics of any valve choice (I'm lousy at computers though, and have no idea how to embed links). That certainly does not mean it is the best choice in all circumstances, which I have never, ever suggested, and it has to be entered on realistically. In fact it is more accepted as a good choice for younger patients than it is for middle-aged ones! It will always only be a niche operation confined to a few centres of excellence, as only the best surgeons can master it, and the supply of homografts is limited.

Oh, and incidentally, I have had my cardiac surgery, and know I will need more, and my husband has had three, (the last being more major than valve surgery), and was on warfarin for 14 years. I appreciate you know what you are talking about, but so do I, though I prefer not to talk about my personal history on the internet ( that is not a criticism in any way!) I hope you have calmed down a bit since your post.

 

[Northernlights]

Dear JulianDu
Sorry for all this on your thread! I wish you all the best as you make your decision, and do remember that if a mechanical valve ends up as the choice of you and your surgeon, it is manageable with care. But maybe in any case some battlefield wound powder would be a good idea to have with you in the wilderness!

Dear Pellicle
I 've decided to leave this forum for a more peaceful one and won't be visiting again, so you won't be troubled by my 'disrespect' any more. I do assure you that no disrespect was intended, though I do feel it's a rather weird modern concept and your life would be easier if you took things a little less personally and more in the spirit in which they are intended! I sincerely wish you all the best ( and more adventures in the North) and I'm really sorry you decided I disliked you. That was absolutely never the case.

 

[jumpy]

I remember coming on this forum about five years ago and the information people provided was very helpful and came from the feeling that everyone is on a personal journey. When I was faced with the decision this summer on Valve choice I found that the tone of the forum had changed significantly to being much more opinion based with Selective statistics which back up the particular thoughts. I came on looking for more information about the Ross and was immediately criticized for having a "Ross Agenda". For me it was a valid option as my surgeon had a specialty in the Ross and I was healthy enough to tolerate the additional surgery time. In the end I chose tissue and was able to look passed the very strong opinions on here about valve choice and take the path which was best for me personally. I won't be coming back on here much until I need to replace this valve but I hope that when I come back the tone has returned to where it was five years ago and will be more open to the personal journeys that everyone is on.

 

[W. Carter]

It is like this on any forum where someone asks for advice on valve choice. Most people are opinionated about the decision that they have made. They hope that they have made the right decision since it could mean life or death.There is not a good decision, just a personal decision and hope that everything works out for the best.

This is the pro's and con's on the tissue vs. mechanical valve and I don't care who likes it and who doesn't.

Mechanical Valve: Pro's: It might last a lifetime, and that is the only positive i've found in a year. Con's: It is noisy. It thumps your chest. It chops your blood (red blood cells) and causes anemia. It can fail from infection or valve thrombosis which can lead to a stroke. You have to take Warfarin for the rest of your life. You have to forego dangerous activities, impact sports etc., watch high vitamin k food intake, check every medication otc and prescribed to see if it interacts, and check your inr or have it checked every 1-4 weeks. YES it is a bad drug and it is dangerous, it is the way that we have chosen to lead our lives with a mechanical valve. Would I make the same decision today? YES-YES-YES, in hopes of not having to go through another open heart surgery again.

Tissue Valve: Pro's: It works just like your own valve. No medication needed. No noise. No thumping. You can do any sports activities you want to do. Eat any amount high vitamin k foods you want. You can take any medication without worrying about your inr or brain hemorrhage, stroke, etc. Cons: It will only last 10-15 years before you will have to have another one implanted and every operation you have there is a chance of life threatening infections.

There it is whether anyone likes it or not, I didn't slant that one way or the other, make your own mind up on the facts and your surgeon's advice. You are the only one that can decide what kind of surgery you want.

 

[dick0236]

I have been on this forum for about nine years and have learned more in that time regarding OHS than in the 40 years prior. I am very sure that the ONLY problem I have encountered would not have occurred had this forum been around in the 1970s.......but then little info and no internet was available back then. I, for one, appreciate the technical sides of our problem rather than the emotional sides. Pellicle, and several others, has the background information to make sense out of a very emotional and frightening life event.

At risk of adding to the stupid "valve choice" argument I will add that I have never been able to accept that someone will choose multiple major surgeries over taking a single pill. If you are not likely to outlive the valve....get a tissue or related procedure. If you are young and very likely to live many years get a mechanical valve and learn to deal with a very predictable drug. I find warfarin easier to manage than my BP drugs........now that I understand a few simple "ground rules".

 

[rakesh1167]

Mechanical vs tissue is not so simple as some people are pointing out. If someone guarantee me 15-20 from tissue, I would go tissue without a doubt. But I am going mechanical because there are no guarantees in tissue, it can fail in 5 years too and my age is 32. Some people are against Ross, but it works well for some. There is a member named "the thief" here, if you are following his web blog, he mentioned about his friend who got Ross in 1996, had it replaced with a mechanical in 2013 and he(friend) is dead within 2 years from a stroke. His name was Matt and I think he was a member of this forum too. So Ross worked better for him than mechanical. So this valve choice is not so simple.

 

[JulienDu]

First of all, thanks for all the feedback for now, as Dick0236 is saying, it is really helping me understand the whole problem and think about other solutions and it is giving me more data for the next meeting with my surgeon.

As for all the emotion, I think our situation has been or is difficult so we all tend to be very intense and honestly I do not mind strong point of view as it usually help develop even better argument !

Getting back on my situation, that discussion and further research are pushing me towards 2 options now :

-Keeping my actual valve as my MGradient is still mild borderline to moderate but I will definitely face another re-op but my valve will last longer than tissue or ross and I will also face the multiple years degradation of my valve
-Putting an Onyx Mechanical Valve as the dosage of anti coagulant to take will be inferior.

I am trying to now narrow more detailed situation where the Mechanical valve could be problematic to see what you think :

-When I am log building, I can carry chainsaw up to 25 pound on my left arm with all the vibration that come with it for 2-3hours non stop except gasing up. I do not think that the weight could be an issue but I am wondering about the vibration and their effects when blood is thinner

-Again, when I am log building in early winter or late winter, I am walking on frozen log wall where the risk of fall is high and it is not unusual to fall from 8 to 12 feet once or twice a year. Never fell on my head though.

-When I am out on the trapline, I am sometimes stuck for 2-3months with no solution to get out so I will be forced to manage my own INR as Pellicle does

-On the trapline Im facing very cold temperature -20 to -45 and sometimes, I can be stuck freezing my ass, I almost lost fingers once or twice. Could your fingers/ears/forefront/chins/nose becoming white-blue because of the cold could create blood issue with the anti coagulant ? This is a rare situation but possible but I can also be less crazy and more careful

-Snowmobiling in Canada is something very common so I am wondering if any people with anti coagulant therapy are still skiddoing with the impact and vibration that come with it. I guess this is the same issue with cross motorbike.

It is true that reading you guys experience, MechValve seems to be less scary than one would think but I want to make sure I am taking the best decision ( as you all do or did ) for my precise situation.

That is all I think for now

Thank you

 

[pellicle]

Hi

Getting back on my situation, that discussion and further research are pushing me towards 2 options now :
-Keeping my actual valve as my MGradient is still mild borderline to moderate but I will definitely face another re-op but my valve will last longer than tissue or ross and I will also face the multiple years degradation of my valve
-Putting an Onyx Mechanical Valve as the dosage of anti coagulant to take will be inferior.

I guess that when you hear back from the surgeon you will know more. Are you feeling / showing in imaging any symptoms of the situation? If not then wait and gather information is a good course

-When I am log building, I can carry chainsaw up to 25 pound on my left arm with all the vibration that come with it for 2-3hours non stop except gasing up. I do not think that the weight could be an issue but I am wondering about the vibration and their effects when blood is thinner

when I've done some concrete drilling on my house (foundations) here there was no observable difference on my hands or how they felt with the big hammer drill going. Same also using other power tools.

I expect that such stuff is not likely to trigger clotting anyway nor is it likely to shatter many capilaries and cause bleeding. I would expect that if you did find anything occur it would be good feedback to you that your INR may be too high (over 3) and should be dialed back towards 2

-Again, when I am log building in early winter or late winter, I am walking on frozen log wall where the risk of fall is high and it is not unusual to fall from 8 to 12 feet once or twice a year. Never fell on my head though.

falls are never desirable, you may bruise more and if you hit a bone (like your hip) hard that may bruise more too. There was a thread a while back where a fellow fell off his MTB and hit his hip ... bruised quite a bit.

-When I am out on the trapline, I am sometimes stuck for 2-3months with no solution to get out so I will be forced to manage my own INR as Pellicle does

personally I'd recommend you manage your INR all the time. Like every skillset the more you practice it the better you get at it. I would (if forced to) use a clinic and submit my data to them for their view and then (cos you have to wait) just do my own dosing and wait to see what they say as a confirmation.

One important point is that there is a temperature range for the testing stips. You can not perform a test, Coaguchek say +15° C to +32° C (59° F to 90° F)
So you can not do a test when the strips are outside that range. I hope you will have accommodation warmer than 15C when you are out on the tramp

-On the trapline Im facing very cold temperature -20 to -45 and sometimes, I can be stuck freezing my ass, I almost lost fingers once or twice. Could your fingers/ears/forefront/chins/nose becoming white-blue because of the cold could create blood issue with the anti coagulant ? This is a rare situation but possible but I can also be less crazy and more careful

well I've only had my nose go white once or twice, but when I come in from -20C skiing my face feels full of blood and my nose cavity feels burning just as it did before. I got no extra problem with my smallest toes and no extra problem with my smallest fingers. Both before and after this valve if my boots were too tight I might loose feeling in my little toe.

Anticoagulation is not "thinning" but simply the reduction of a specific compound in the blood. So your living tissue remains what it was. So your blood circulation to your extremities will be unchanged. The difference is only in the amount of clotting agent in the blood. Since your skin relies on everything else in the blood to remain able to be an effective barrier I can't see how AC would change that.

My personal experience back in Finland that last winter confirmed my suspicions.

-Snowmobiling in Canada is something very common so I am wondering if any people with anti coagulant therapy are still skiddoing with the impact and vibration that come with it. I guess this is the same issue with cross motorbike.

I have taken my father in laws Lynx out onto the lake to check the ice hole nets once or twice since my starting warfarin. I didn't notice anything different.

I hope to be back in Finland (the country where I quite want to be ...) this year. So if you have been able to delay your surgery by then I will report to you how I have fared in another winter. I am planning a sledding trip around Kebnekaise from Abisco in Sweden. and I expect that I will need a full winter in Finland t0 prepare and test gear then head out in March when there begins to be some light up there

Best Wishes

 

[pellicle]

Dear Northernlights

I 've decided to leave this forum for a more peaceful one and won't be visiting again, so you won't be troubled by my 'disrespect' any more. I do assure you that no disrespect was intended, though I do feel it's a rather weird modern concept and your life would be easier if you took things a little less personally and more in the spirit in which they are intended! I sincerely wish you all the best ( and more adventures in the North) and I'm really sorry you decided I disliked you. That was absolutely never the case.

As a "PRE Post Script" I will add that I have just gone up the thread and read your other response. Should you ever read this.

RE: the Ross I accept your points made but do not think it helpful to continue that discussion. I understand you were suggesting it as a 'curve ball' alternative. It was not that which concerned me. I'm glad your husband has done well after 3 surgeries and that your surgery went well. I however remain of the view that each subsequent surgery bring with it extra risk (based on everything I read and know).

I would suggest that if you do not know the person then your assumptions of "the spirit in which it was intended" is perhaps dangerous.

I (perhaps like you) have days which are bad. I live alone and still struggle with my losses and issues. Accordingly, when I get dissed and when I get patronised (and you did both) I get anxious and angry. I believe we are both at error in this incident (you with your words me with my temper).

I believe that people should write to the facts and not correct others unless its about the facts. I believe this is the source of conflict. I do not engage in "this valve is the best" (which you accused me of) and do my best to write to the needs of the writer.

Know that I hold no grudge against you, we all have issues, but its how we resolve them which counts, not that we don't have them.

There are many people who use this forum, each has different needs , some have strong opinions. I do my best to help new mechanical valvers come to terms with managing their INR which is of criitcal importance to their health. That managing INR is of no interest to you may be so, but accept that it is of use to others.

Shalom

 

[JulienDu]

Glad to see we have common experience, it is really helping me better understand the whole Mechanical Valve and the medication.

I also read about a woman ( between the age of 49 and 58 ) with a Mechanical valve that climbed the Everest 4 times !! (3 times she failed close to the goal and she finally succeeded). Considering that only 2000 people managed to do it and more that 200 hundred died, I feel like this example proved that the Mechanikal has a huge potential. But you guys read about that story too I m sure.

As for my immediate situation, I have no symptoms regarding the Valve but since a couple month I felt some kind of tension at the aorta, very little pain. Once or twice a day I feel something at the ascending aorta location.The firsts doctor and cardiologist I talked to told me that it could be in my head as the aorta is only 4.9 at a small location but the surgeon specialized in aneurysm and valve repair I talked, told me that this could be the sign of short term dissection. He had several patients with the same symptoms in the past that had dissection following those symptoms so now he really take that into account and suggested immediate surgery ( this january) especially knowing that in my job I often carry heavy weight.

 

[MethodAir]

It is like this on any forum where someone asks for advice on valve choice. Most people are opinionated about the decision that they have made. They hope that they have made the right decision since it could mean life or death.There is not a good decision, just a personal decision and hope that everything works out for the best.

This is the pro's and con's on the tissue vs. mechanical valve and I don't care who likes it and who doesn't.

Mechanical Valve: Pro's: It might last a lifetime, and that is the only positive i've found in a year. Con's: It is noisy. It thumps your chest. It chops your blood (red blood cells) and causes anemia. It can fail from infection or valve thrombosis which can lead to a stroke. You have to take Warfarin for the rest of your life. You have to forego dangerous activities, impact sports etc., watch high vitamin k food intake, check every medication otc and prescribed to see if it interacts, and check your inr or have it checked every 1-4 weeks. YES it is a bad drug and it is dangerous, it is the way that we have chosen to lead our lives with a mechanical valve. Would I make the same decision today? YES-YES-YES, in hopes of not having to go through another open heart surgery again.

Tissue Valve: Pro's: It works just like your own valve. No medication needed. No noise. No thumping. You can do any sports activities you want to do. Eat any amount high vitamin k foods you want. You can take any medication without worrying about your inr or brain hemorrhage, stroke, etc. Cons: It will only last 10-15 years before you will have to have another one implanted and every operation you have there is a chance of life threatening infections.

There it is whether anyone likes it or not, I didn't slant that one way or the other, make your own mind up on the facts and your surgeon's advice. You are the only one that can decide what kind of surgery you want.

Some inaccuracies here, or parts that do not reflect my experience.

Any valve type can fail from infection.

Tissue Valve It works just like your own valve. No medication needed. No noise. No thumping.

• It's dead tissue. It doesn't work as well as a well functioning native valve.
• It has a very small window of functionality, its performance is degrading year by year. When the performance degrades measurably, the heart suffers.
• Warfarin may be required.
• I have read about people reporting that their tissue valve thumped.

Mechanical Valve

• My OnX valve does not thump in my chest.
• No one has ever heard heard it apart from doctors in a quiet room. But I can hear it at night when I go to sleep.
• I eat as much Vitamin K rich foods as I want.
• I do not have anemia.
• I engage in high impact activities without issue.

 

[JulienDu]

Thanks for the feedback MethodAir

I have also read that the risk of infection is higher with a tissue valve than a mechanical valve. Can you guys confirm that ?

Method Air air, can I ask you couple questions :

-What kind of impact activity do you engage in ?
-What INR are you aiming at with your Onyx Valve ?
-How old are you ? ( I read you had the operation in 2015 ) and where did you have your operation in Canada ?

 

[W. Carter]

Some inaccuracies here, or parts that do not reflect my experience.

Any valve type can fail from infection.

Tissue Valve It works just like your own valve. No medication needed. No noise. No thumping.

• It's dead tissue. It doesn't work as well as a well functioning native valve.
• It has a very small window of functionality, its performance is degrading year by year. When the performance degrades measurably, the heart suffers.
• Warfarin may be required.
• I have read about people reporting that their tissue valve thumped.

Mechanical Valve

• My OnX valve does not thump in my chest.
• No one has ever heard heard it apart from doctors in a quiet room. But I can hear it at night when I go to sleep.
• I eat as much Vitamin K rich foods as I want.
• I do not have anemia.
• I engage in high impact activities without issue.

As far as tissue valves go...
They are proven to be less problematic due to not having to take Warfarin, It is a proven fact that Warfarin is the main factor in motality rate among people with mechanical valves. Most causes are renal failure and brain hemorrhage.
The problem lies with the tissue valve is re-operation. If they do have to take Warfarin after the first 3 months it is not due to the valve, it is due to a-fib or stroke risk which they would have to take anyways.

As far as mechanical valve you said it right, it is not problematic for you, others find themselves facing all the problems I listed. But do watch the High impact activities, I have already been in ICU for 10 days to have 2 holes drilled in my head to drain the blood from a brain bleed caused by Warfarin. And I keep hearing about all these people that consume all the vitamin k that they want. They must not be consuming very much since vitamin k is the antidote for Warfarin. Or they are taking twice as much Warfarin to counter the antidote.

 

[dick0236]

• My OnX valve does not thump in my chest.
• No one has ever heard heard it apart from doctors in a quiet room. But I can hear it at night when I go to sleep.
• I eat as much Vitamin K rich foods as I want.
• I do not have anemia.
• I engage in high impact activities without issue.

I agree with each of the above points......except:

*my valve is not an Onx, it is a early generation "ball-in-cage" that you would expect would sound like hitting a ping pong ball with a paddle....but it never has after a few months after surgery.
*I no longer engage in high impact activities(carpentry, water skiing, etc), but age not valve degradation is the reason I don't. Now it's the gym a few times each week, a few lite "honey does" and golf.