Coumadin Valve choice questions

[Dennis S]

This is my first post, and it seems like one of the most important things I have ever written. And I hate the fact that this last statement seems so true to me right now. I have a bicuspid right aortal valve that will be replaced, and this is scheduled to happen right around August 1st. I have spent many hours researching the questions I want to post here, (including a lot of time reading postings on this site) and I hope to escape the controversy that seems to surround my primary question. I normally live at 7,200 feet elevation, in a home on the rim of a canyon with a river below, and a mountain on the other side. I am 58 years old, and it is this is the place my wife and I have planned and worked to achieve for many years. These facts important to understanding my questions, as I want to stay here, and, as much as possible, go back to my old life when my surgery is over. I live 80 miles from the nearest doctor. I spend a lot of time with my chain saw, and I spend a lot of time on steep rocky ground, sometimes hiking on foot, and sometimes on my ATV. I think I am very careful already, but I seldom go a year without a small cut or a serious bruise (as big as the lid on your garbage can) from falling on rocks, rocks falling on me, trailers gone wild, etc.

Our kids have grown and moved on. My wife is smart, strong and committed. I am not in this by myself. I have researched my choice of surgeon. He says he does all these types of surgery ?off the machine?. That sounds good to me, but I would be interested in any comments. I have a sober minded, trusted engineer friend in a position to know a lot about heart valves. I can tell he would definitely go with the tissue valve, and expects current tissue valves to go 20 years or so. But he doesn?t really know that, and can?t know that for another 10 to 15 years. I have good friends who are doctors, and they push the synthetic valve. I normally have no particular awe in the presence of doctors, but now that push comes to shove, it is going to be hard for me to go against their recommendation. My health insurance is great in Minnesota, where I will have the surgery. But in New Mexico, where I live now, I have only 80% coverage for any ongoing drug or testing expenses.

I am interested to read any advice about tissue/synthetic valves, but doubt there is much that hasn?t been said already. What I most need to know in making my choice is whether I can really live the life I described on blood-thinners, and if so, how dangerous/expensive/inconvenient is that going to be? Thanks for any help you can give.

 

[Karlynn]

Welcome! First of all, I'm very jealous of where you live. What a beautiful description - sounds like a place I'd love to live in.

We do get into our tissue vs. mechanical debates here. But rest assured - we all are pretty secure in our own choice, so that speaks well for both options. We get into the "who does Mom love the most" type of arguments on valves, but that's just family squabbling, not a war between political parties.

I've had my mechanical mitral valve for over 13 years. I manage my own Coumadin and home test. If you are considering mechanical (synthetic as you refered to it) I would highly recommend looking into home testing given where you live. This might be something you may want to check on with your insurance company. Many insurance companies pay for part to all of the cost of the machine and the testing supplies don't amount to too much of an expense, particularly if you have 80% coverage.

In the 13 years, I've given myself some pretty good injuries. I've nearly sliced knuckles off in the kitchen, I've broken toes, fallen on ice, had my 120lb puppy put some good scratches on my leg trying to get attention. We have marathoners, triathletes, bikers and various kinds of athletes here who take coumadin, so I don't see your type of activity making a big difference on Coumadin. Head injury is the big thing to avoid and you may want to wear a helmet when on your ATV (and you should already be doing that - from this mother's point of view! )

At 58, you are in the gray area of valve choice. It's a tough decision - but either decision is going to save your life!

Best Wishes.

 

[ALCapshaw2]

QT

I was 58 when I was diagnosed with Aortic Stenosis. After long consideration and consultation with my Primary Care Physician who knows my lifestyle, concerns, and extensive medical history, we both felt that a Bovine Pericardial Valve best suited my needs.

The surgeon who did my Bypass told me that at 58 I was also in a 'gray' area and good arguments could be made for either the mechanical valve or Bovine Valve and that he could / would do either.

Long story short: My cardio thought I could get some more time on medication but one year later there was no question, it was time for surgery. He referred me to a Heart Transplant Surgeon at the University of Alabama who agreed to the Bovine Valve but after opening me up, decided that a mechanical was needed due to radiation damage I had received many years earlier.

I live in the country and engage in a number of activities that are considered 'risky' for Coumadin patients. I've had some nasty bruises (dog pulled me into a tree) but for the most part, I do as I please. Going OFF Coumadin for invasive procedures worries me. There are still times that I would have been happy to have had the Bovine Valve and cavilerly proclaim that I'd even have been happy to get "15 years and out". Of course there are NO guarantees that I would have gotten the 15 years.

There are some who will tell you that you would have to be "out of your mind" to go through this surgery twice. My AVR was my second surgery and while it took me 18 months to be able to get back to HARD physical labor, it wasn't the 'horrible' experience some have had. Even with my mechanical valve, it appears that I will need a (high risk) 3rd surgery as my Mitral Valve is now deteriorating so there are NO guarantees with either valve.

I would not fault you for making EITHER choice. When given the choice, many of us choose the valve whose negative attributes we feel we can best live with.

My recommendation to you is to choose what "feels best" to YOU, be happy with that choice, and don't regret it.

If you do choose to go mechanical, by all means, get a HOME TEST unit and do your own monitoring and dosing. See Al Lodwick's website www.warfarinfo.com and order one of his Dosing Guides ($5).

'AL Capshaw'

 

[Perrybucsdad]

A warm welcome to you

A warm welcome to you

QT

I was to have the Ross done when I had my surgery done back in 1997. When I discussed my choices the surgeon gave me three. Tissue, Mechanical and then the Ross. He said he would do whatever I decided on but reserved the right to change that based upon what he saw when he opened me up.

When I had the surgery done, I picked the Ross as my 1st choice, St Jude as my second. Unfortunatly, the anulus of the aortic root was out of whack and prevented the Ross from being done. Because of that, the St Jude was implanted.

I was really ticked because at that point I thought I would have to change my life style drasticly. That was not the case thankfully.

Now, I'm glad that I didn;t get the Ross. One of the other guys on the floor who I became friends with had the Ross done a day after I had my surgery. After the surgery, we kept in touch often. A few years back, he had to go back infor surgery as his Aortic valve was failing. Unfortunatly, he died on the table from complications. I don;t think it had anything to do with the Ross, but the fact that he had to be operated on again. That could happen to any of us regardless of our choice.

I too would sugest you home test if given the opportunity. It is very easy, painless, and most insurance companies will cover you based upon certain requirements (live far from a testing facility, high risk valve, etc)

Best of luck and welcome to our family,

John

 

[Nancy]

Hi and welcome-

Hy husband Joe has had three valve surgeries. He has an aortic and mitral mechanical and had a repair on the mitral.

He's been on Coumadin for 28 years. I'm going to say this and I know that others will STRONGLY disagree with me, but this is JOE'S experience with Coumadin. He feels it's no big deal. He has many medical problems, and takes a lot of medication, so one more pill or two are nothing in his life. Some of his other medications require testing as well, so even that aspect doesn't phase him one little bit.

Yes, there are considerations when you have to have invasive procedures. There is a whole regimen of going off Coumadin and doing what is called bridge therapy, which means that you have some form of Heparin which covers you during that time, and then you go back on Coumadin after the procedure is finished.

As far as side effects of Coumadin, this is the least troublesome drug that Joe takes.

During his 28 years on Coumadin, many things have happened. He's fallen several times with varying degrees of bruising. Last Feb. he fell on some ice, and he was bruised from his kidney area to his foot on one side. Yes, he did bleed more because of his Coumadin, but with the fall he took, even without Coumadin, he would have been in terrible shape. He was very lucky that he didn't break something. He's broken one of his toes, he's had multiple surgeries, he gets scratches from our dog, cats and whatever. They heal up the same as any other person. Blood does clot, it might take a tad longer to clot, but not bad.

Regarding your chainsaw, I'm quite sure, if you were to cut yourself seriously even without Coumadin, you would rush to the hospital.

Home testing is great. Joe doesn't want to do it. We could, but he's happy with his doctor doing it. The doctor's office uses a ProTime unit, which is the same one that many who hometesters use, it's a finger-stick machine, and the results are right there in a couple of minutes.

You must weigh having reoperations versus being on anti-coagulation. Those are about the two major issues. However, even with a mechanical valve, you could still need another surgery, and even with a tissue valve, you could still end up on Coumadin, if atrial fibrillation were to rear its ugly head. That is something that many who have open heart surgery get.

So, there are NO guarantees, either way.

Make your choice with your eyes wide open and do your research, and discuss it with the surgeon. But please be flexible. As others have said, things can change once they open you up.

 

[bvdr]

Welcome, QT.

IMHO you are in that gray area. My area wasn't quite so gray as yours so the choice was easier. I was already in atrial fib and on coumadin before surgery.
The one thing that sticks out in your post to me is the chain saw use. I worked as an RN in a busy ER for many years and for a period of time we were part of a study of chain saw injuries. I don't remember the detailed results but I do remember some of the injuries and that it wasn't novices who had the injuries but rather people (mostly men) who were very familiar with chainsaws and used them often. I seem to remember several very nasty injuries to anterior thighs as that seemed to be the place chain saws like to land when they are jerked through a knot on a tree........and I remember lots of blood. Given your situation a nice bio-prosthetic valve may be a good choice.

Whatever you do I hope it works out well for you. Just do keep in mind there are no guarantees whichever way you choose.

I love the description of your homestead and if things go as anticipated you can probably look forward to enjoying many more years there.

 

[Dennis S]

Thanks so much for your reply

Thanks so much for your reply

QT - Welcome! We also live at a high elevation and are pretty rural, so my husband is just getting into home testing. Luckily, our insurance covers quite a bit of the cost.

From you posting your altitude and where you live (which sounds gorgeous by the way), I get the feeling those are worrying you. Don't let it. The only thing that our altitude (7500) made different through Mike's recovery was that he had to have oxygen for the first couple of weeks at home, just in case. We live on the border of Rocky Mountain National Park so we're always hiking and biking, doing a little rock climbing and a lot of heavy yard work to keep our acreage beautiful. Mike's had some pretty good tumbles and some spectacular bruising but we keep it in context. If it doesn't stop bleeding, then we take a little drive to the ER. It's all about not panicking if something happens.

Good luck.

I hope this is the right procedure for a reply. Thank you so much for your reply. It is especially helpful because our living conditions seem so similar. I don't know where else I could go for such helpful information. Thanks to everyone, and I will be glued to the screen for a while as I get ready to make this choice.

 

[Guest]

I'm in Pueblo and I've learned that people who live in places like Jemez Springs are willing to make trade-offs. One of these is that they become fairly independent when it comes to medical care. I have someone now who comes to me from Raton and have had people from as far as 160 miles.

Look at www.hometestmed.com and see about getting your own tester.

You have three top notch warfarin experts in ABQ. They are all MDs and familiar with ther problems people in rural NM face. Alex Spyropolous (Dr. Spy) at Lovelace. David Garcia at UNM and Ed Libby at UNM also. Ed is a cardiologist who recently added hematology as a subspeciality. They don't do the oncology part, they concentrate on clotting and bleeding disorders.

 

[tobagotwo]

When given the choice, many of us choose the valve whose negative attributes we feel we can best live with.

A sobering and salient observation, Al. I submit that it belongs in our "VR Quotable Quotes, Axioms, and Mantras" file.

Qtson, at 58, you are looking for a no-repeat solution. Statistically, a bovine tissue valve, before anticalcification treatments were developed, had a 90% chance of bringing you to the age of 76. With the recent anticalcification treatments and nondamaging fixation techniques, those numbers should improve still further. Treated porcine valves, both thin-stented and stentless are also available, but their pretreatment numbers fall more into the 15-year range, making them less proven candidates for your age.

There is also some consideration of the possible future of catheter-implanted valves that are in clinical testing for delicate or aged patients, which may be more fully developed in twenty years. That might be the replacement vehicle at 78 or 80, should you not meet your end in a rockslide by then. Realistically, the maturation of this technology can't yet be relied on, as the percutaneous valves have no long-term record to consider, but the technology is not necessarily to be summarily dismissed, either.

If you anticipate rolling over your ATV, sliding head-down onto boulders in an uncontroller manner, or offering your pate as an LZ for fist-sized rocks, you might consider that at least headgear would be reasonable for your jaunts, if you went on warfarin. Maybe even if you didn't go on Coumadin.

I don't know how far you would have to travel to renew your Coumadin at a pharmacy, but that eighty miles might seem like a very long haul to a doctor, if you had problems with an injury or a prescription. I am assuming that you could set up at-home testing on your plan, as clinical testing sounds impractical.

In the end, you must feel comfortable with your choice. You don't get to do without.

Best wishes,

 

[geebee]

QT,

I, too, am jealous of the description of your paradise. It sounds like you have found the perfect spot to live your dreams.

As many have said, valve choices are so very personal. I am a prime example that, even if you choose mechanical thinking that it will be the only surgery you will need, you may find there are other plans for you. I had a mechanical implanted during my first OHS and I ended up with 2 more OHS for other reasons.

I have had no issues with coumadin and have been on it for almost 25 years. The biggest problem was when I broke my foot and the bruising was so bad that the swelling prevented a fixed cast. However, I had a removable cast that worked fine and got through it OK.

I have my share of cuts and bruises and have taken a number of falls. I tend to bump into corners a lot so I always look like someone is beating me but have some laughs over it and move on. Nothing has ever come of these issues other than cosmetic.

I lead a fairly active life. I swim, scuba dive, ride motorcycles, etc. I have not changed my lifestyle due to coumadin.

Would I have preferred a life without coumadin - definitely. I would have preferred a life without OHS and other medications but I prefer a life so I do what is necessary to stick around.

My feeling is too make a choice that will require as few OHS as possible. Each surgery is more difficult and more dangerous. I wish you well and urge you to be happy with whatever choice you make and not second guess it. We never know the future and make the best choices for ourselves each day.

 

[Rain]

My neighbor!

My neighbor!

QT...

Jemez Springs, NM?!! My boys used to wrestle kids from Jemez Springs when they were in Peewee wrestling. That?s been a while.... they?ve both graduated from college and ?moved on? as you say.

Good luck on your valve choice. I?m telling you... this choosing a valve and the time between now and the actual surgery is absolutely the worst part of the whole deal. I'm really not kidding.

Best wishes in your decision.... each valve has it's good points and bad. Sounds like you've done your own research... which is a very, very good thing.

 

[Dennis S]

Chainsaw

Chainsaw

Welcome, QT.

IMHO you are in that gray area. My area wasn't quite so gray as yours so the choice was easier. I was already in atrial fib and on coumadin before surgery.
The one thing that sticks out in your post to me is the chain saw use. I worked as an RN in a busy ER for many years and for a period of time we were part of a study of chain saw injuries. I don't remember the detailed results but I do remember some of the injuries and that it wasn't novices who had the injuries but rather people (mostly men) who were very familiar with chainsaws and used them often. I seem to remember several very nasty injuries to anterior thighs as that seemed to be the place chain saws like to land when they are jerked through a knot on a tree........and I remember lots of blood. Given your situation a nice bio-prosthetic valve may be a good choice.

Whatever you do I hope it works out well for you. Just do keep in mind there are no guarantees whichever way you choose.

I love the description of your homestead and if things go as anticipated you can probably look forward to enjoying many more years there.

I have read of special clothing manufactured by Stihl and others that is supposed to mimimize cuts. I may be looking for some new duds when this is over.

 

[Dennis S]

Home monitoring

Home monitoring

QT - Welcome! We also live at a high elevation and are pretty rural, so my husband is just getting into home testing. Luckily, our insurance covers quite a bit of the cost.

From you posting your altitude and where you live (which sounds gorgeous by the way), I get the feeling those are worrying you. Don't let it. The only thing that our altitude (7500) made different through Mike's recovery was that he had to have oxygen for the first couple of weeks at home, just in case. We live on the border of Rocky Mountain National Park so we're always hiking and biking, doing a little rock climbing and a lot of heavy yard work to keep our acreage beautiful. Mike's had some pretty good tumbles and some spectacular bruising but we keep it in context. If it doesn't stop bleeding, then we take a little drive to the ER. It's all about not panicking if something happens.

Good luck.

Can you tell me anymore about the cost, and what you are required to do for home monitoring? I sure would appreciate it.

 

[Ross]

then catheter will give him next valve by then if needed..

Don't count on it!

 

[Karlynn]

then catheter will give him next valve by then if needed..

I asked this question in another thread a little while back and didn't get any takers that had information. We hear a lot about valve replacement via catheter. I'm just wondering how "do-able" this will be when replacing a replacement. For 1st time valve replacements they wouldn't be encountering scar tissue. But for 2nd timers, there will be scar tissue - how much depends on the individual person. We hear that 2nd replacement surgeries are harder due to scar tissue, so this makes me wonder whether a catheter surgery could adequately deal with scar tissue. The reason this thought comes up is that I have an aquaintance who's 2nd heart surgery was attempted through the Heart Port, but they had to fully open him up because scar tissue was making it difficult to repair his issue through the Port.

Tobagotwo - any info on this???

 

[tobagotwo]

It's an interesting concern, Karlynn, and I have also turned it over in my mind from time to time, but have no specific information from the manufacturers.

While keloids do occasionally develop around a new valve, they would be noticeable on the echo, and the patient would likely be disqualified for the percutaneous procedure. The scar tissue they're most often referring to regarding reoperations is scar tissue on the heart itself or the pericardium, from being cut and healing. That shouldn't be an issue with catheter-placed valves. Arguably, there might also be fewer arrhythmias created with catheter valve placement, as the heart muscle - and its nerve networks - would not be cut to access the valve.

However, the techniques I've seen described so far involve basically mashing the old valve against the aortic wall, and expanding the new valve in its place, like a stent. The new valves have hooks or prongs that anchor them until the scar tissue forms on them to hold them in place.

This would eliminate the possibility of replacing a mechanical valve that way. It might also limit the annulus size that can be used. And it would seem reasonable that it might be more difficult or impossible to do a second cath valve, as the detritus would seem to build up and be in the way. Perhaps a process for removal of the old valve is in the offing.

There can only be so much done during this procedure, as this is beating-heart stuff, and there is a time limit on how long the heart can provide blood to the brain effectively without its critical aortic valve. Maybe a method will be devised to allow more time by providing some of the valve's function while the rest of the work is being done.

At least one of the percutaneous aortic valves in trials is a tissue version, by the way.

Best wishes,

 

[Karlynn]

And it would seem reasonable that it might be more difficult or impossible to do a second cath valve, as the detritus would seem to build up and be in the way. Perhaps a process for removal of the old valve is in the offing.

So if this is the case (and I realize you are just making educated guesses here) then younger VR prospects would be wise to be somewhat skeptical when being told of the possiblity of valves being replaced via catheter when they could be looking at more than 2 replacements in their lifetime, given their age. A 50 year old could possibly still look on the possibility of a cathetar procedure as a very good thing. A 25 year old may need to reconsider - if the catheter idea is what is driving their decision. I just say this because I know there are so many reasons that drive our valve choice, but we all tend to have a #1 reason.

Thanks Bob!

 

[tobagotwo]

It is also possible, Karlynn, that it could be collapsed like a stent as well. But if it's held to the aortic wall by scar tissue, how would you get it loose without damaging the aortic wall or creating a snowstorm of dangerous loose material?

I have to spend time again looking for the procedure, as it must be delineated somewhere by now.

Best wishes,

 

[Mary]

So if this is the case (and I realize you are just making educated guesses here) then younger VR prospects would be wise to be somewhat skeptical when being told of the possiblity of valves being replaced via catheter when they could be looking at more than 2 replacements in their lifetime, given their age. A 50 year old could possibly still look on the possibility of a cathetar procedure as a very good thing. A 25 year old may need to reconsider - if the catheter idea is what is driving their decision. I just say this because I know there are so many reasons that drive our valve choice, but we all tend to have a #1 reason.

Thanks Bob!

Karlynn,
I don't think that the younger crowd would necessarily have to be skeptical about valve replacement via catheter at this juncture of their life. After their first valve replacement, if they had a tissue implanted, or if their mechanical had failed for some reason, then it seems that would be the time to consider the technology available.

One thing I've learned throughout this process is that it is futile and a waste of time to worry about "what ifs" until presented with a time frame that makes it necessary. When my bovine valve plays out, then I'll decide what to do about replacing it.

Right now it seems foolish to me to either rely upon, or ignore, the new advancements that are being tested. I am also hopeful that anticoagulation therapy and home testing advancements will make great strides so the difference between choosing a mechanical or tissue valve is greatly reduced by the time I need to make that decision.

 

[TjCarpenter]

This is my first post, and it seems like one of the most important things I have ever written. And I hate the fact that this last statement seems so true to me right now. I have a bicuspid right aortal valve that will be replaced, and this is scheduled to happen right around August 1st. I have spent many hours researching the questions I want to post here, (including a lot of time reading postings on this site) and I hope to escape the controversy that seems to surround my primary question. I normally live at 7,200 feet elevation, in a home on the rim of a canyon with a river below, and a mountain on the other side. I am 58 years old, and it is this is the place my wife and I have planned and worked to achieve for many years. These facts important to understanding my questions, as I want to stay here, and, as much as possible, go back to my old life when my surgery is over. I live 80 miles from the nearest doctor. I spend a lot of time with my chain saw, and I spend a lot of time on steep rocky ground, sometimes hiking on foot, and sometimes on my ATV. I think I am very careful already, but I seldom go a year without a small cut or a serious bruise (as big as the lid on your garbage can) from falling on rocks, rocks falling on me, trailers gone wild, etc.

Our kids have grown and moved on. My wife is smart, strong and committed. I am not in this by myself. I have researched my choice of surgeon. He says he does all these types of surgery ?off the machine?. That sounds good to me, but I would be interested in any comments. I have a sober minded, trusted engineer friend in a position to know a lot about heart valves. I can tell he would definitely go with the tissue valve, and expects current tissue valves to go 20 years or so. But he doesn?t really know that, and can?t know that for another 10 to 15 years. I have good friends who are doctors, and they push the synthetic valve. I normally have no particular awe in the presence of doctors, but now that push comes to shove, it is going to be hard for me to go against their recommendation. My health insurance is great in Minnesota, where I will have the surgery. But in New Mexico, where I live now, I have only 80% coverage for any ongoing drug or testing expenses.

I am interested to read any advice about tissue/synthetic valves, but doubt there is much that hasn?t been said already. What I most need to know in making my choice is whether I can really live the life I described on blood-thinners, and if so, how dangerous/expensive/inconvenient is that going to be? Thanks for any help you can give.

My two cents... simplify your life. Go tissue. In twenty years, I am confident that process and technology will make our next go'round less invasive and eventful. THIS IS MY THINKING! I got to this place after serious thoughts and prayers. God speed in your journey. Your going to be great!

Tom