Thought I had My Mind Made Up...Confused

[Karlynn]

One of the issues I have with the thought of Coumadin having cumulative bleeding risk (or clot risk - but if there's a cumulative risk for clots, then this also applies to tissue valves because tissue valves have the same risk for clot as a properly anticoagulated - which most are- mechanical valve) is that it implies that Coumadin users are at risk for spontaneous bleeding. Coumadin does not cause spontaneous bleeding unless you get into the very high INR ranges - 10 or above. To say that the risk of bleeding is cumulative is to imply that spontaneous bleeding occurs due to Coumadin.

If Coumadin causes bleeding, it is because something else is wrong with whatever is experiencing the bleeding and the Coumadin causes it to bleed sooner. Al Lodwick has spoken of one or more of his clinic's patients being diagnosed with cancer earlier than they would have normally because being on warfarin caused the cancer to bleed sooner, thus allowing for earlier treatment.

To say that risk of bleeding is cumulative also implies that there is only a certain amount of time that one should be on Coumadin because of the risk. If there was a toxicity issue of long-term Coumadin users - Coumadin would not be one of the top 5 prescribed drugs in the US, nor would it justify the use ofmechanical valves in people (particularly younger adults) in order to avoid additional surgery. There are drugs that we are told are absolutely not long term drugs (Amiodarone for example) because of the side-effect issues. Coumadin is not considered a short-term drug.

To say it is cumulative - also implies that Coumadin builds up in a person's blood, or body organs. It does not. Warfarin leaves the body in 3 days and a person's PT is returned to 1.0 - that of a non-ACT individual. If Coumadin is increasing my risk for bleeding, I shouldn't have to worry as much about clotting at 16 years post surgery, as I did at 1 year and I shouldn't have to keep my INR as high. Again - not the case.

The only reason I can think of that this individual who wrote the article is thinking was that if you're on the drug long enough, chances are you'll have an issue with a bleeding event at some point in time. It's kind of like saying, if you drive long enough, you'll have an accident eventually. But your risk of having an accident does not increase with each trip in the car. You start with a clean slate every time you leave your driveway.

 

[Ross]

This thread is being railroaded. Lorie is a big girl and can arrive at which ever conclusion she draws. Move on to other things.

 

[dick0236]

AMEN to Ross's post

 

[greg]

Lorrie, here's my 2 cents worth.. I've had a St Judes Regent AV for 4 years and taken anti-coag for the same time. The valve is good and I can survive on coumadin without much problem. However, if I had it to do again, I'd be oinking or mooing. If you want more of my opinion PM me please. Hang in there Susan, it's really fun.

greg

 

[tobagotwo]

The risks of warfarin are not cumulative, but are relatively steady. They do increase slightly with age, relative to the risks of biological valves, mostly due to the naturally increasing fragility of some people's intercranial and alimentary blood vessels. But it's not much of an increase, and not for everyone - it's in the genes. I feel it's not enough that it should raise your level of concern.

The risks of multiple reoperations are slightly greater in younger people than the risks of Coumadin, because of the increased number of resurgeries that may be required over a lifetime.

So, at 41, if you choose a biological valve, you begin with a slightly greater risk than the 41-year-old next to you who received a mechanical valve. At 65, your tissue valve would give you a slightly lower risk than the 65-year-old next to you with the pyrolytic carbon model.

To quote Frost, "..though as for that, the passing there had worn them nearly both the same."

So who dies earlier? The unlucky ones, the ones with greater heart damage, and the genetically challenged. The statistics seem to show the life expectancy being about a wash for either choice, most other factors considered.

I would note that I have not seen anything (science) that would lead me to believe that a 41-year-old should expect 20 years out of any biological valve at this time. Likely not 15 years, either. I would entirely expect a reoperation in your early fifties, and another down the road near 70.

Note that the statements above are not implying that you should go either direction. They're simply to put likelihoods on the table, as I see them. You need to determine for yourself which sullen companion you will be able to live with best - the knife or the pill.

Best wishes,

 

[MajorHart]

I have a bovine valve

I have a bovine valve

Hi there, many of you already know my story...i am a 41 year old recently diagnosed with aortic aneurysm at about 5 cm and looking and imminent surgery, most likely in January or February of next year. Oh yeah, I have the classic precursor to most aneurysms which is the dreaded bicuspid valve. I just had another consult today with a surgeon here locally. Although I am not considering him for my surgery (he admittedly only does about 5 surgeries like mine a year) my cardio wanted me to meet with him to possibly to my post surgery case, especially since I may be travelling out of area for the surgery. Anyway, great guy and answered a lot of my questions but also brought up some new issues. At my age, the initial recommendation of most seems to be mechanical valve but my objections to mechanical are mainly lifestyle. Specifically, dietary changes and not being able to drink alcohol. I know, you can eat and drink what you want in moderation and as long as you are consistent, but honestly I am not a very consistent person and I like being spontaneous. I like, also, to drink in excess and really enjoy myself....particularly when I am travelling, on a cruise, etc. I am definitely not an alcoholic and honestly haven't drank more than a few glasses of wine in the last couple of months. But, I have been know to "tie one on" and I enjoy that from time to time. That being said, my primary dilemna now is this. One surgeon told me bovine valves are the way to go...the one today said pig valves are the way to go in terms of how long they last. Since I am assured a replacement, God willing, I want to chose the one that has the best track record, pig or cow. Also, the surgeon today said that the complications from Coumadin accumulate 1% a year so if I lived another 40 years I would have a 40% chance of complications from Coumadin, so perhaps tissue would be the way to go regardless. Not sure if I understand this. Also, I have a history of kidney stones and they bleed like heck....and they are very likely to recur...wouldn't this be a contraindication to mechanical anyway? I was really hoping to be able to salveage my native valve but the general consensus now is that the valve has to go so a decision is in order. I guess the surgeon I eventually choose is going to have a preference anyway, right? Thanks in advance for any advice you can give me...perhaps there is a website or study that compare bovine and porcine tissue valves?

Bovine valves are said to be much better than they use to be - in terms of long life. I just got one 2.5 weeks ago and am walking 1 mile a day on my treadmill now and have been for over a week. At your age you might need another valve 15 years down the road but if you health is still good (I'm 69) you should do okay with that.

I like beer too but have cut it way down. I understand I couldn't drink at all with a mechanical valve and blood thinners.

Wishing you the best - keep us posted.
MajorHart

 

[MajorHart]

I just got a bovine valve.

I just got a bovine valve.

The ON-X website www.heartvalvechoice.com has an interesting chart comparing Porcine, Bovine, and Mechanical Valves.

It was interesting to note that the Stentless Porcine Valve has a Gradient about HALF that of the Bovine Pericardial Tissue Valve but still about 50% higher than for the On-X mechanical valve. Clearly the Stentless Porcine Tissue Valve would be the best Tissue Valve choice for EXERTION tolerance.

I see claims for Extended Lifetimes for the Stentless Porcine Valve but NO ONE has provided the BASIS for these claims (and I have asked). It is my 'understanding' that this valve was introduced in the mid 1990's so there is only about 12 years of history for it (same as On-X).

Standard Unmodified Porcine Tissue Valves (straight from the Pig, NO treatments) typically last 8 to 12 years in ELDERLY patients, LESS in younger patients.

The Bovine Pericardial Tissue Valves that were installed in (mostly elderly) patients in the 1980's are approaching 20 years durability (at 90%?). The latest versions with anti-calcification treatments are "HOPED" to last for 25 years or so. The Cleveland Clinic is a Big Proponent of Bovine Pericardial Tissue Valves.

It is also a KNOWN FACT that Tissue Valves *Wear Out* Faster the younger you are when the valve is replaced. Unfortunately, there is NO PERFECT Artificial Valve to date, Mechanical or Tissue.

It's always a Tough Choice that usually comes down to which set of negative attributes do you think you can best live with.

Good Luck making that choice!

'AL Capshaw'

They just implanted a bovine aortic valve in me 3 weeks ago - the surgeon said 1/4 aspirin once a day. He said they last a lot longer than the did and the cleveland heart clinic is recommending they be installed in younger people as well.

I have lifted weights and run for over 50 years - they said I just wore it out and everything else was fine - including having a strong heart.

I might wear it out - If so I hope to be in shape to get it replaced again.

Best Wishes
MajorHart

 

[MajorHart]

bovine is what I have

bovine is what I have

It was interesting to note that the Stentless Porcine Valve has a Gradient about HALF that of the Bovine Pericardial Tissue Valve but still about 50% higher than for the On-X mechanical valve. Clearly the Stentless Porcine Tissue Valve would be the best Tissue Valve choice for EXERTION tolerance.

Hi Al,
I'm curious about this issue of exertion tolerance. Basically, this information suggests that someone with a bovine valve has significantly less ability to exert themselves than people with the other two types of valves. Yet, I have a bovine valve and can run a 5k race with 12 minute miles - not super fast, granted, but good physical endurance by most people's standards.

What level of exertion would cause one to run into the physical wall caused by my valve's higher gradient? It seems to me that no one besides a very serious athelete or hard physical laborer is likely to ever approach it. What do you think? Kate

At 2.5 weeks home - I walk 1 miles a day on my treadmill and have for a week. I lifted weights over 50 years and ran and they know I'm going back to doing that at 69.

So - I doubt the bovine will limit me much if at all..
MajorHart

 

[geebee]

I like beer too but have cut it way down. I understand I couldn't drink at all with a mechanical valve and blood thinners.

Glad all is going well for you. However, I do need to point out (sorry) that this information is just not true - although I do believe people are still being told this.

 

[dick0236]

I had a 12oz can of beer (Schlitz as I recall) prescribed once daily while I was in the hospital post op (Aortic valve replacement). My docs said it would help me not to retain water in by body. My philosophy is everything is OK in moderation. The problem is in defining "moderation".

 

[harleygirl528]

Hello Everyone,
First let me say WOW! I had no idea I would get this many responses so quickly but I do realize in the short time I have been on this site that valve selection is a hot topic. Just to clarify a few things: First of all the surgeon who made the comment about the cumulative risks of Coumadin use is NOT the surgeon who will be operating on me?he is someone that I consulted with who practices locally to potentially do my follow up care following surgery. He said that the risk of complication due to Coumadin goes up by 1% per year?so unless someone lives 100 years past starting Coumadin my mathematic skills wouldn?t ever show a 100% risk of complications. I think it is fairly well understood by ALL that Coumadin does have it?s risks but all of us, due to the nature of our heart conditions, are going to deal with risks of some sort for the rest of our lives so believe me when I say, I do keep this in perspective. My illustrious task is simply to decide which risk is the most acceptable for my lifestyle right now. To say that I feel that I have received clarification?well that simply wouldn?t be the truth! In some ways I feel more confused than ever.

Lance and Greg: First of all, let me say thank you so much for your honesty regarding your valve selection. You two are absolutely the first people I have heard on the site say that if they had it to do over again, they would have decided against mechanical and gone tissue. I appreciate your frankness!

Ross: I an NOT a big partier?.but I do like to party from time to time?I rode my harley to Sturgis this year and every single night I was there I ?partied.? Then I went a month without a drink at all. I went on a cruise a few years ago and every night (and day) I drank?probably in excess. But then came home and didn?t drink for weeks. I guess you would say that WHEN I party?I like to do it BIG. I realize the priority is getting it fixed soon?and I am moving as fast as I possibly can now within the confines of surgeon?s schedules etc. My goal is early next year. My decision for valve choice will not be based solely on the ability to drink or ?party? indiscriminately but on an evaluation of all factors. Frankly, I was a bit confused by the prescribing information from the Coumadin drug that you shared. What?s the bottom line here, as you understand it? Also, why do you think that an institution as reputable as Johns Hopkins would publish false information?

Susan: Thanks for your input and your quote from Johns Hopkins?it is my understanding that Johns Hopkins is one of the most reputable medical establishments in the World so I would safely assume that any information published by that institution could be considered reliable, wouldn?t you? I am very appreciative of the fact that you shared this information with me and I consider any quote from Johns Hopkins to be reliable and valuable. Thanks!

Al: Thanks for clarifying the ?cumulative risk? issue?I agree, the risk of use from ?any? drug usually does increase the longer you are on that drug and since you are on Coumadin for life it just makes sense that the risk of suffering some side effect at some point would increase with time, right?

Lyn: Thanks for your input. Pain is better?my back is the biggest issue for me now and my inability to pursue any physical therapy or chronic pain management via anesthesiologist etc. until the aneurysm is taken care of. My orthopedic said ?no one is going to touch you until you get that aneurysm taken care of. I?m scared even having you here in my office.? So, in the meantime, I am taking pain meds when the pain in unbearable and trying to stay positive and focused on what?s at hand. Thanks for your concern!

MajorHart: Wow, sounds like you are doing great with your bovine valve?that?s fantastic. I am glad to hear it! As Cleveland Clinic is the #1 rated heart surgery center in US I guess the fact that they are using bovine and even on younger patient means that there is a belief that they are going to last longer than previous tissue valves. Aren?t they treated with certain chemicals that make them last longer now? I know that bbb recently had aneurysm and valve repair at CC and she was given a tissue valve and she is in her 40?s?.hmmm?.maybe these world-class surgeons at CC know a thing or two?

Tobagotwo: Thanks, as always, for your insightful perspective. You did note that Warafin risks do increase with age so isn?t that the same thing as saying the risks are ?cumulative? meaning that they get greater with time? I?m a little confused by the definition of ?cumulative??.

Karlyn: I did not interpret cumulative risk in regard to Coumadin use to mean that it builds up in your system..I think that is a separate issue. I interpreted cumulative in terms of risks of the use of Coumadin to mean that the longer you are on Coumadin the more likely you are to develop some risk factor. It does encourage me greatly to hear how well you have done on Coumadin, however, and I appreciate your input.

Thanks to all?.I think that at this point I will simply continue to weigh all the information from reputable medical establishments, such as Cleveland Clinic, Johns Hopkins, etc. and to continue to weigh the personal evidence presented by all you wonderful folks too?.and in the end just make the decision the seems right to me?along with my selected surgeon?s input! Thanks for the lively debate and, honestly, this is what makes this site so wonderful and valuable!

 

[tobagotwo]

I had a PM with a similar take on what I wrote, so I'm going to borrow from my reply to help respond here.

No, what I wrote doesn't support the "cumulative" statement about warfarin risk. I can disagree with an expert's statement because the writer is a doctor, not a statistician. He knows his medicine, but is less persuasive with his math. Several excellent statisticians on the site have debunked the cumulative risk statement quite convincingly - on principles of math, not a leaning toward one valve type or another.

It's also not borne out in the numbers. He says that there is a greater risk when one is over 65, and I agree. However, he describes it as cumulative, meaning it builds via addition over time. I disagree, and attribute the added risk to easily noted changes in the aging human condition, largely in the increasing fragility of the intercranial, alimentary, and other blood vessels, that are more a slower, straighter line rise in risk.

If it were truly cumulative, starting around 60 or so, the difference in death rates would be quite significant with age, advancing up into an alarming incline (remember, it has to be an increase on top of the general death rate to qualify as added risk). Everyone who favors tissue valves would be pointing to that graph and saying, "See? If you're on Coumadin, that's what will happen to you." But they're not. Because there is no such graph.

Instead, it appears to be only a slight rise in relative risk that increases quite slowly with age and eventually plateaus in the absence of comorbid factors. It's measurable, but not enough to be of great concern, especially when taken over the total range of risk over a lifetime, including the earlier risks avoided. It is, after all, risk over time, and it balances over a lifetime.

I would point out that "being over 65, high blood pressure, cerebrovascular disease, severe heart disease, renal insufficiency, and cancer" are increased risk factors for everyone in every case, warfarin entirely aside.

I'm predisposed to tissue valves for myself. Have been from the start. For me, it's a quality of life issue. I've chronicled many of my personal concerns about warfarin over the years. There are a number of things that go along with Coumadin use that I would have great difficulty dealing with, not the least of which is dealing with so much of the medical community from a large disadvantage. But some things that disturb me greatly don't bother some others. Again, the risks over time are the same, so the considerations can be more encompassing of the valve recipient's personality.

And it's plain that mechanical valves do work for those who choose to go that route. One of my main concerns is the raised risk of multiple operations with warfarin. But look at RCB. He is the personification of multiple operations and long-term warfarin use. How can you argue the warfarin point with someone who's been through all that and is still here to argue back?

You may have a hard time with your OHS, and be horrified that you will have to go through it again some time in your future. You may have an easy time, and decry yourself for having signed up for a lifetime of pills and blood tests. You must determine to be unsympathetic to yourself after OHS about your choice. You must simply accept that you made the best choice you could divine, and move ahead into the life given back to you.

We presuppose no comorbid conditions (other current illnesses) for this discussion. The life expectancy numbers after age 40 or so are so similar, that it boils down to how you like to take your risk. You can have the smaller, more continuous risks and impositions of Coumadin, or the higher, but infrequent, punctuating risks of reop, with nearly nonexistent risk in between. It's all in how you like to take the dose.

I had written this earlier (and better), but it didn't post, and was unrecoverable. Now it's late, I'm grumpy and frustrated, and I feel it's missing some points I had made before. And it really needs to be edited. But I'm going to post anyway, to get the main points out. Please forgive its unpolished state, and I hope I didn't miss any major gaffes.

Best wishes,

 

[ALCapshaw2]

It was interesting to note that the Stentless Porcine Valve has a Gradient about HALF that of the Bovine Pericardial Tissue Valve but still about 50% higher than for the On-X mechanical valve. Clearly the Stentless Porcine Tissue Valve would be the best Tissue Valve choice for EXERTION tolerance.

Hi Al,
I'm curious about this issue of exertion tolerance. Basically, this information suggests that someone with a bovine valve has significantly less ability to exert themselves than people with the other two types of valves. Yet, I have a bovine valve and can run a 5k race with 12 minute miles - not super fast, granted, but good physical endurance by most people's standards.

What level of exertion would cause one to run into the physical wall caused by my valve's higher gradient? It seems to me that no one besides a very serious athelete or hard physical laborer is likely to ever approach it. What do you think? Kate

Astute Observation Kate!

Hopefully one's Cardiologist or Surgeon could shed some light on performance or exertion vs. Effective Valve Area (or Valve Gradient).

I'm a Big Believer in the notion of "Good Enough".
Once something is "Good Enough" there is
little or NO benefit in having something "Better".

The problem with that philosophy is DEFINING "Good Enough" and that can take a LOT more time, effort, and understanding of all the factors involved. Engineers do a lot of this type of Cost - Benefit Analysis during Product Development!

'AL Capshaw'

 

[Ross]

Ross: I an NOT a big partier….but I do like to party from time to time…I rode my harley to Sturgis this year and every single night I was there I “partied.” Then I went a month without a drink at all. I went on a cruise a few years ago and every night (and day) I drank…probably in excess. But then came home and didn’t drink for weeks. I guess you would say that WHEN I party…I like to do it BIG. I realize the priority is getting it fixed soon…and I am moving as fast as I possibly can now within the confines of surgeon’s schedules etc. My goal is early next year. My decision for valve choice will not be based solely on the ability to drink or “party” indiscriminately but on an evaluation of all factors. Frankly, I was a bit confused by the prescribing information from the Coumadin drug that you shared. What’s the bottom line here, as you understand it? Also, why do you think that an institution as reputable as Johns Hopkins would publish false information?

As I said in the post with the prescribing information, without additional information as to how these tests were conducted and knowing what variables come into play, they are just numbers. We need the physicians own assessment or definition of Cumulative Risk. As it appears in the article, it's dead wrong. I would urge you to travel the internet in search of this particular answer and you'll find more then one article saying it isn't so.

Where things get hairy in these threads is, someone who is not on Coumadin posting misleading information about the drug regardless of where the information comes from. Big names do make mistakes. Sometimes Big Names make Big Mistakes.

Lorie in all honesty, I would be worried about you developing stomach ulcers at some point in time. It may never happen, but until your ready to slow down and keep it in moderation, tissue is probably a better scenario for you. This is only my opinion.

 

[Ross]

The "cumulative risk" of coumadin has been well discussed above and elsewhere, and I do not think I can add anything to that.

Yes it has, anything further will be deleted.

 

[Bina]

Why not have the best of both worlds?
If you go with tissue and it lasts for 10-15 years, you will then be in your fifties which is a good age for a mechanical.
I chose mechanical because I do very badly with surgery.
Best wishes, we are all here for you!

 

[njean]

Sorry, I don't mean to post this thread to death.......

Back in 1975 when I underwent my AVR & MVR, I was NOT given the choice of mechanical or tissue valve. This choice was made strictly by my surgeon. I was 24 years old & I am now 56 years old. I have been on coumadin all these years & have had 2 serious operations for other things since. Coumadin has never really been an issue for me, just a way of life!
In fact, next week, Dec. 11th, is my 32-yr. anniversary for my 2nd OHS.

And unfortunately, nothing lasts forever!! Just last year, I had to have the mechanical aortic valve re-replaced. It was replaced with another mechanical valve (St. Jude). So for anyone to think that you will never need another OHS if you go mechanical, well, look at my case!

I'm sure that whatever choice you make, will be the right choice for you. Best of luck to you & take care!

 

[ShezaGirlie]

Taken from Lorie's post above: Lance and Greg: First of all, let me say thank you so much for your honesty regarding your valve selection. You two are absolutely the first people I have heard on the site say that if they had it to do over again, they would have decided against mechanical and gone tissue. I appreciate your frankness!

Lorie--add me to the list with Lance and Greg. I'd most definitely go tissue if I had to do it again. If you're interested as to why, just send me a PM.

 

[Karlynn]

If people are regretting their choice and post that they are, I think it would be advantageous for those making choices to understand the reasons. It can further help others decide, not just those who start a thread. Maybe the issues that those who regret their choice would be something that would strike a common chord with those trying to make a decision. Or maybe they will look at the reasons and think "Valid reasons, but not something that I would find to be a significant factor personally."

Unless the reasons are intensely personal, I think it would help, and we're here to help by using our own experiences. I don't think any of us can kid ourselves into believing that every single person is happy with their valve choice. We've had people come from each valve option: Ross, Repair, Tissue and Mechanical that have expressed their disappointment in that choice (whether it was theirs or their doctors') It leaves too much to the reader's imagination to just say "I love my valve" or "I hate my valve". What follows those statements is important information to those making choices. I think the rest of us can be adult enough to deal with differing opinions respectfully.

Remember - we have many people coming here looking for information, anecdotal stories or advice that don't bother to join, or to post. We get people who visit for months and don't join until after their surgeries and find out that what they read here helped.

 

[njean]

If people are regretting their choice and post that they are, I think it would be advantageous for those making choices to understand the reasons.

I should have added to my previous post, that I DO NOT REGRET my surgeon making the decision to go mechanical. I'm forever grateful that he did. And if I have to have the Mitral valve re-replaced, I will NOT hesitate to go with a mechanical valve again even though there is no guarantee that it won't fail sometime in the future.

Valves don't come with guarantees, whether tissue or mechanical but I do think that whatever decision a person makes, after viewing all the pros & cons, will in the end, be the best choice for them!