MVR what valve type to choose

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rnff2

Well-known member
Joined
Oct 2, 2009
Messages
121
Location
Illinois
Looking at MVR in Jan. I’m 43 and have had 2 previous open heart surgeries. I assumed that due to my surgeries and age I would be given a mechanical valve with no other option. When I sat down with my surgeon and he went over both bioprosthetic tissue valve and mechanical valves and told me that he feels it is a 50/50 decision on which way to go. He gave me info about anticoagulant therapy, lifestyle changes and the risk of strokes if I go mechanical and then the risk of reoperation in 10+ years if I go with the bioprosthetic tissue valve. He also believes that a reoperation will be low as mitral valve replacements via catheter will be happening in the next few years.
I am an ER nurse and also have a lot of cardiac experience. Coumadin is not a drug that I care to be on, the risk of strokes involved and the possibility of the clicking valve makes mechanical less appealing. But not knowing what the future may bring and possibly having another surgery in 10 years is also not appealing. I really do feel it is a 50/50 split choice considering my history, my lifestyle and knowledge of medicine after talking with my doctor and his staff. I sort of wish he wouldn’t have given me an option I had resigned myself that that wasn’t an option and was going to have to do what I have to do and get mechanical and just deal with it. Now…I’m more confused than ever.
 
It has to be tough to make a decision when your surgeon and your own professional experience says "it's a 50/50 choice". All you can do is make your educated choice and then go about living your life.
 
What does your gut tell you? For me it was tissue for the reasons you cited for not wanting mechanical. Also, how was your recovery from your previous surgeries. I'm a bit surprised your surgeon isn't cautioning you against a fourth surgery in 10 years. I'm m not counting on TAVR when the time comes to replace my AV. I don't know about the future for MVR but I wouldn't take it as a given that it would led be an option.

You will make the right decision for you.
 
Hi there

first let me say that I agree with the points raised by dick and honeybunny: its a tough decision and you should go with your gut feelings.

Let me also say that I'd had 2 OHS for my Aortic before my 2011 operation when I was 48, so there is some similarity between us (although valves vary)


rnff2;n860987 said:
Looking at MVR in Jan. I’m 43 and have had 2 previous open heart surgeries. I assumed that due to my surgeries and age I would be given a mechanical valve with no other option.

I would have agreed. with that sentiment.

He gave me info about anticoagulant therapy, lifestyle changes and the risk of strokes if I go mechanical and then the risk of reoperation in 10+ years if I go with the bioprosthetic tissue valve.

well this is where I'd perhaps offer some input. Without knowing what he said I'd say that there is a very good possibility he's given you false / outdated data (through no direct fault of his own as AC therapy is not really his speciality).

Firstly most of the information on AC therapy is derived from elderly patients who are the vast bulk of AC therapy recipients. This is not directly transferable to you. If you take the time to carefully critically read the journal articles which form the basis for AC therapy you will find that most are old, few (except for the very latest) focus on valve recipients, and many are on AC therapy because they have a history of stroke. This last point of course raises their disposition to stroke (which is why they are on AC therapy).

The next point is AC Therapy Management ... the USA is quite tardy in adopting the modern methods of AC therapy management (especially for younger more mentally competent people). If you ast dick0236 he will likely agree that he has no problem in testing his INR using a fingerstick PoC (Point of Care {I know, its such a wanky term innit}) machine. So if you feel competent mentally (and that you are able to post here puts you well outside of the mean of those who form the basis for AC stats) you are likely quite competent to deal with this. Medical professionals (in my experience the worst performers in technical areas of science and maths when I did my Biochemistry degree) make mistakes in understanding and even writing about statistics. Much is written on this. For instance:
https://www.newscientist.com/article...bers-you-read/


The next point is the myths about AC therapy which persist in the upper levels of medicine (especially surgeons and cardiologists) because they are simply not motivated to learn the answers. I wasn't before I was given my choice. As a person with extensive science background (and a wife with the same) we began researching the reality of AC therapy. There is much bullshit written out there which people accept. I encourage you to read this article about critical thiinking
https://www.newscientist.com/article...st-in-science/
Allow me to quote a point from that (incase you can't read that without subscription)
We have a long tradition of allowing civic affairs to be settled by persuasive rhetoric. That is inadequate for our modern society. But many of the tools used to make science-heavy decisions are also needed to properly evaluate a much broader range of subjects: in particular, critical thinking and numerical analysis. A basic grasp of statistics and probability, for instance, is key to judging the risk from terrorism, say, or how to invest your money (see “How to outsmart your irrational brain“).
But the desired combination of scientific literacy and critical thinking remains rare in public discourse. Perhaps that is because we hope children will learn to evaluate claims rationally if we teach them science. That works for some, but all too often the reaction is: “I’ll never need to use this once I’ve left school.”

With respect to diet, my own findings (and that of many others who are on AC therapy and post here) is that being on Warfarin (known also by trade name of Coumadin) is not anything like the main stream "website" information. There is precious little written in a scientific manner about the effect of diet on INR, less so on active healthy people who perhaps represent 5% of the people on AC therapy. What I have found (and is echoed here dozens of times) is that diet makes precious little difference to INR and perhaps most importantly I believe makes zero difference to your risk of bleed or stroke. There have been cases here of INR = 9 due to distorted consumption of Grapefruit juice without injury or event. You will not find this written about in the literature, and thus is not under the view of Surgeons and Cardiologists.

He also believes that a reoperation will be low as mitral valve replacements via catheter will be happening in the next few years.

I think that this is wishful thinking. Its been the same words for over the last 10 years ... there are many threads here where people took up a tissue valve only to find that they needed it replaced and TAVI was not yet mature ... so its up to you which way you choose to weight this point. Myself I put it into the arugments about Electric Cars ... which for over 100 years have had the same following of "one day they'll replace petrol" but remain equally expensive relatively as they were in the early 20th Century
http://cjeastwd.blogspot.com/2011/05...-of-being.html

It is true that you may need surgery for another issue, thus a mechanical valve is not a "the buck stops here" operation. However if you had a tissue valve the same would be true, as the operations are normally about something other than valve problems. However the chance of your tissue valve lasting the rest of your life is nil (unless you die soon) but the possibility of the mechanical lasting your life is high.

Its also true that making the choice of AC therapy complicates other medical issues. If you currently have any (diabetes for instance, diverticulitis perhaps) then you will need to manage the treatment of that. But you can manage it. There is no management strategy for failing tissue prosthesis other than another surgery to replace it.

So please, I encourage you to consider all these points when you are making your informed decision.

Best Wishes

PS: I'd like to quote another segment from that article on critical thinking (underline mine):
more recent polls suggest that US scientific literacy has improved greatly. A Pew survey released in September concluded that “most Americans can answer basic questions about several scientific terms and concepts”: that Earth’s core is its hottest part, for example, or that uranium is needed for nuclear energy and weapons.
But mastery of facts alone is not enough for the internet age. Much of the copious online rhetoric is more viral than factual, so it is just as important that we know how to evaluate sources of information, and how to tell correlation from causation, and opinion from fact – in matters both obviously scientific and otherwise.
This is where we’re falling short of the tail end of PISA’s definition. Kids who don’t see the point of science often lack chances to hone their critical thinking toolkits, particularly their numerical sides. And textbook knowledge doesn’t translate easily to practice: cell biology can seem very remote when deciding who’s really worth listening to about vaccination.

The author does not mention "veracity" which is verified truth ... not only by the peer reviewers but by you. The peer review process is better than Fox News, but still they will not correct assertions which can be supported by the data in their methods. If you read their methods and ask yourself (be critical) is this the only way to interpret that data?, then you are on the way to getting the stuff which is what journals are really all about.
 
First off i'm not making this post to try and sway your decision one way or the other. That is a decision only you can make. My one year anniversary is coming up on Dec. 18 and I have had a subdural hematoma (brain bleed) from warfarin use. I was in the hospital (icu) for 15 days, they drilled 2 holes in my head and had drain tubes inserted to drain blood. The doc's at the warfarin clinic simply said "well it happens sometimes" when asked about it. I have also been in ER for uncontrollable nose bleeds twice early on to have them stopped. Would I get the mechanical valve again? Yes I would. OHS is not a pleasant experience at all, and recovery takes what feels like forever to begin feeling better again. Now one year post op my body has become use the warfarin and I don't have anymore problems. I go into the V.A. Hospital once a month and have my blood drawn since I have become a "stable warfarin user". The clinic will call me at home later with the results. If there needs to be an adjustment on dose they will make it over the phone. It comes down to... do I want to be on the operating table again and spend months recovering again (tissue)... or do I want to go through the hassles of warfarin use, and ticking sound the rest of my life (mechanical). Have I painted a picture of one being better than the other? No, neither one is ideal, it's just the cards life has dealt us. :)
 
Hi

very interesting post, thank you for sharing that. As a motorcycle rider, skier and bicycle rider (where a whack on the head is likely) I'm quite interested in this.

W. Carter;n860994 said:
... and I have had a subdural hematoma (brain bleed) from warfarin use. I was in the hospital (icu) for 15 days, they drilled 2 holes in my head and had drain tubes inserted to drain blood. The doc's at the warfarin clinic simply said "well it happens sometimes" when asked about it.....

First off I'm very glad (not as glad as you I'm sure) that you have not suffered any brain damage. While it "happens some times" I'm always one to ask questions like "why" and "was there a factor" ... so if I may ask;
- do you know what your INR was before and around that bleed?
- have you ever had a propensity for nose bleeds or other hematoma?

Now one year post op my body has become use the warfarin and I don't have anymore problems. I go into the V.A. Hospital once a month and have my blood drawn since I have become a "stable warfarin user". The clinic will call me at home later with the results. If there needs to be an adjustment on dose they will make it over the phone.

Even with being "stable on warfarin" now, I will point out that there are often wiggles in the line, and that home monitoring with a PoC machine (like the Coaguchek) weekly can help you identify and do something about those wiggles. For instance skigirl here had an INR of 9, from consuming a large amount of grapefruit juice (which she bought on special at the supermarket). If she'd been checking her INR weekly she may have noted that it was ramping up and asked questions earlier. I've written a lot here about my experiences and I guess that it comes down to how much effort each person sees fit in putting into learning how to manage this aspect of their ongoing health.

It comes down to... do I want to be on the operating table again and spend months recovering again (tissue)... or do I want to go through the hassles of warfarin use, and ticking sound the rest of my life (mechanical). Have I painted a picture of one being better than the other? No, neither one is ideal, it's just the cards life has dealt us. :)

I agree with your sentiment, I myself am glad that you posted things like this as its all really part of the learning we all need. I think its well phrased in the Journal: http://circ.ahajournals.org/content/119/7/1034.full
Despite the marked improvements in prosthetic valve design and surgical procedures over the past decades, valve replacement does not provide a definitive cure to the patient. Instead, native valve disease is traded for “prosthetic valve disease

Best Wishes

PS: rnff2 I would say that there is always a lot involved in "making an informed decision" I guess that without training in analysis of complex systems its almost impossible to make an "fully informed decision" ... however I'll quote an old British Army adage: A quick decision is always the best decision: if it happens to be the right decision that's even better.

As has been said here many times: Tissue or Mechanical, neither are wrong decisions.

Shalom
 
Thank you all for your thoughts and insite you have given me a lot to ponder. It's tough because the patient side of me says one thing and my nurse side says another. I also think I'm almost to my breaking point of frustration and just want this to go away, knowing that it never will, but from time to time knowing I need a "mental health day".
Being an ER nurse for almost 20 years and seeing things I have seen makes this even more difficult. Sometimes knowing too much is just as bad as not knowing enough.
 
Hi

rnff2;n861002 said:
Being an ER nurse for almost 20 years and seeing things I have seen makes this even more difficult. Sometimes knowing too much is just as bad as not knowing enough.

I can only say, leaverage off that experience and ask yourself this question:
would YOU have done things better / differently and thus not been in that situation?

we can only control so much, after that its just down to "fate" ... anyway, there are no wrong decisions only decisions we don't make. Flip a coin, if you don't like the answer then that tells you what your choice was.

PS: if you feel like blithering out things with someone verbally by (say skype) email me at hotmail ([email protected]) Don't wrack yourself too much :)

Best Wishes
 
pellicle My inr shot to 7.0 for no apparent reason. My bp shot to 180/120 at the same time and I take 3 different blood pressure meds. My blood pressure is usually 110/70 or lower. They accused me of taking too much Warfarin but I know I didn't. I take my meds the same time every day out of a pill box. I had a bad bad headache for 3 days straight until I couldn't take it anymore and went to ER.

As far as monthly testing now, my inr stays between 2.7 and 3.5 with no problems. I did ask them why my inr shot to 7.0 with no change in diet or meds and they couldn't say. That happened in June and since that incident my inr has been stable. I was getting tested every two weeks but the inr is so stable now they don't want to test but every 4 weeks now which is alright with me.

As far as nosebleeds, I would get a few drops now and again when I took aspirin daily. They would stop fast but on Warfarin I couldn't get them to stop. I haven't had a nosebleed in about 6 mo. now. Like I said my dose is the same so I just think it took time for my body to accept the Warfarin dosing.
 
pellicle. Thank you!

And thanks to everyone else for their thoughts. It's nice to know there is a place to come an talk with people who really do appreciate what this is all about.
 
Be sure you consider that MVR via catheter is quite a bit behind AVR. The very first attempt at this in the US was done just this year in April 2015 (my cardiologist was the principal investigator). Yep, N=1 and I don't even know if it worked. For contrast, I think the first TAVR was in 2002 and they are still only doing that sucker on high-risk patients (hopefully not you) due to the higher risk of trans-catheter vs OHS for most patients. And as you know the mitral valve is a much more complex thing than the aortic so it might take even longer to figure out. Here is a link about that:

http://www.mdtmag.com/news/2015/04/f...c-mitral-valve

If I had to get my MV replaced today (I am 48) I would definitely choose mechanical in the absence of new info (who knows what my cardiologist will say when I next see him, now that he accomplished this feat). In addition to being skeptical about the timeline for transcatheter MVR, I have multiple risk factors for low mileage on a tissue valve including youth, being female, and rheumatic heart disease. I definitely do not want to be looking at another surgery in 5-7 years, and then again and again . . . . and that could for sure happen. I'd rather run the risks associated with Coumadin and get on with my life. We all have to think about what's the best mix of risks for us I guess.
 
At 43 with a bio valve you probably would have to have at least one replacement. That would be your fourth open heart surgery. You may need more information about the risks involved with the replacement operations. Personally, I would not bet on any future advancements in valve replacement. You may need your replacement in 20 years or 5.

I chose mechanical because of the uncertainty in my finances, fear of future life disruption and my strong desire to minimize any and all surgeries. I had 3 other surgeries before my OHS.

To me the worst part about a mechanical valve is not being able to take NSIDS for arthritis. At your age you probably don't know if the future holds that for you. However, my GP says NSIDS are the easy way out :) and not that good for you and I'm somewhat lucky not to have that option and decision to make.

Both choices are good, that's why it's hard to chose...
 
Tom,

I asked my surgeon about a possible 4th surgery and he said that vs the percentage of stroke risk of Coumadin over time basically weight each other out. I'm not holding out for future advancements if they happen it's just an extra perk. I don't want to have another surgery that's for sure...but I don't want to have to deal with a lifetime coumadin either.


We have also been watching my Aortic regurgitation and at this time they feel not need to replace it, but may need to in the future so that also brings another piece into the decision. I asked if I do mechanical now would my Aortic have to be mechanical later...thus another surgery.


Actually I do have arthritis and spinal stenosis in my back. I had a successful spinal injection in March that has helped alot and reduced my need for NSAIDS. My concern is will I be able to have another spinal injection in the future if I'm on coumadin. From my research most doctors want you off the coumadin for 5-7 days prior, as we know that not an option and I've read most still feel it's too high of a risk to bridge the coumadin. I'm thinking of calling the doctor that did my injection to see if he will do future injections if I'm on coumadin. At least I know where I stand with that when I do make my final decision.


One other thing I have to consider is the percentage of mitral valves replacements that develop atrial fibrillation, which I'm told is @ 30%. Well I already have a pacemaker for second degree heart block, so does have conduction problems already put me more at risk for arrhythmias? If I choose tissue and get A-fib I end up on coumadin anyway...that would be my luck.


I have an appointment Tuesday with my cardiologist in my home town to see what he thinks, although I think I already know what he will say. I'm also waiting for a call from my cardiologist that is at the hospital I am having surgery at to discuss things with him.


Thanks again everyone you are so very helpful. I believe that eventually I will have that moment or thought when I'm like OK this is what I need to do.
 
Hi

I see your sitiation is complex, so please understand that my response is not exclusively to you, as many lurk here and ask this question.

rnff2;n861277 said:
I asked my surgeon about a possible 4th surgery and he said that vs the percentage of stroke risk of Coumadin over time basically weight each other out.
.

This is the most vexing thing prople say. The evidence supporting it is highly biased and misleading. For a start the primary group (the overwhelming majority) on warfarin are not valvers. They are people suffering from other issues, usually compounded. They are not usually "healthy active people" and the age spread is significantly older. This makes it unreliable to compare (say me) and them.

Secondly the study group on warfarin are usually not well managed in accordance with modern Point of Care machines and best practice, further compounding the apparent rates of bleed events. You will find many are having events associated with high INR - caused by (you guessed it) crappy INR management)

Lastly the stats contrasting mechanical + Warfarin VS tissue prosthetic do not examine anything other than death as an outcome. They do not address e inevitable erosion of health and the chipping away slowly of what you have ("oh, during surgery your AV node nerve was damaged due to it being buried beneath scar tissue, and you will be on a pacemaker now" or "oh, during surgery the heavy scar tissue made anideal environment for an infection, which progressed and we have had to completely remove your sternum bone").

Simplifications remove information and reduce things to minimise decision making. Thus simplifications are used to obscure that an argument may be biased by a preference.

If you search here you will find time and time again a theme emerge: I thought being on warfarin would be a nightmare, now that i am on it i find its really nothing.

So for you rnff2 the management of warfarin may be more complex. I see that you have a few issues already. None the less i still feel that it can be managed more under your control than the outcomes of subsequent surgeries, which are completly a dice roll.

I will leave you with a simplification of my own: if someone gives you a bunch of flowers they will die and require replacing in time, you can influence to a small degree how long they last. If someone gives you pottted flowers they can be planted in the ground and continue to grow indefinitely. Sure a "brown thumb" person will probably kill them, but there is a very good chance they can remain in your garden forever , it you manage them properly.

Best wishes
 
hi there, some very advice given already, which ever you pick will be a good choice, for me I listened more to what the experts told me than anything else, and they didn't agree lol, sometimes you gotta go with your gut feeling,
 
@pellicule, the complexity of my situation is what is making this a difficult decision. I have no doubt that I can manage being on coumadin and maintain relatively good control. It's the other things that go along with it. Just being on coumadin increases your risk of stroke whether your well controlled or not. It complicates simple procedures and also many meds are contraindicated with coumadin. And of course it's a life long commitment.

From past discussions with my doctors I never thought I'd even be given a choice of valve type and now that I have that choice I'd be doing a disservice to myself if I didn't look into all of my possibilities.

@ neil, your exactly right...if the experts can't agree then how am I supposed to figure it out. I see my local cardiologist Tuesday so I'm hoping to gain some more insite, although I think I know what he is going to say.

Thanks again everyone for your comments. It nice hearing from people who understand.
I'm hoping that eventually I will experience a moment of clarity when I just know what I'm going to do...at least I'm hoping that happens...lol.
 
Hi

rnff2;n861292 said:
@pellicule, the complexity of my situation is what is making this a difficult decision.

Indeed, i recalled your biography when typing.


i have no doubt that I can manage being on coumadin and maintain relatively good control. It's the other things that go along with it. Just being on coumadin increases your risk of stroke whether your well controlled or not. It complicates simple procedures and also many meds are contraindicated with coumadin. And of course it's a life long commitment.

Agreed, all points. Especially the fact that complexity may not suit all people and their temperament nor their surrounding medical team.

From past discussions with my doctors I never thought I'd even be given a choice of valve type and now that I have that choice I'd be doing a disservice to myself if I didn't look into all of my possibilities.


To support this and to fit in with complexities, I have a probability that my post surgically gifted infection remains. You can find my post thread here on that. The medical opinion is forming up that i will likely remain on antibiotics for the remainder of my life. The possibility that the infection remains is significant and the outcome of another recurrenc of it would be a subsequent OHS / valve and graft replacement and perhaps my death.

Treatment with rifampicin with penicillin is complicated by me being on warfarin. If we choose that path then during administration of rifampicin i will need to self inject heparin daily for about three months.

Unpalatable but perhaps needed.

Best Wishes with oyur decision making. I strongly suggest a spreadsheet for all points and a weighting criteria.
 
Well it's been and busy couple of weeks. I have seen my local cardiologist, my cardiomyopathy specialist and my surgeon's nurse practitioner. I had pre-op testing done last Thursday and if all goes as planned I'm scheduled for MVR and possible AVR next Tuesday. I have still not convinced myself that a mechanical valve is what I really want, but I have decided after much discussion with my doctors that it is the best choice for me at this point in my life. So that's where I'm at...I can't decide if I want the next 7 days to drag by or fly by.
 
you have made your choice so no looking back just look forward now, 7 days will pass quickly and you will find you get calmer as the time approaches, before you know it will all be over and you will wonder what all the fuss was about lol, you will be just fine you see
 
@ neil
Thank you for your words of encouragement, I'm sure you are absolutely right. Now, if I could only learn to be the patient and not the nurse, I think I'd be off. Lol.
 
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