Vanderbilt University and 'Blood Thinner' Dosing......

[Jkm7]

I just heard an advertisement on Fox News that 'substantially' said the following:

"I am so glad I am a cardiologist. I see people at their most vulnerable. So many take blood thinners and are on the same dose. We know that isn't right so it's good we have DNA testing and we can determine the right dose".

This is paraphrased but what in the world.........

Has anyone here who is on ACT ever had a DNA test to determine their correct dose of -blood thinners- ?

 

[kfay]

I would guess this is what he was referring to: http://www.mc.vanderbilt.edu/reporter/index.html?ID=6215

 

[normofthenorth]

Since the reality still seems solidly in the range of Science Fiction and such, one would HOPE that the ad on Fox was very carefully worded, so's it was merely misleading, rather than outright false!!

Interesting potential, though.

I just read about a weird and fascinating (and potentially dangerous) characteristic of Warfarin/Coumadin: In the first ~2-3 days of W/C administration, it very significantly PROMOTES clotting!! Basically, W/C inhibits the effects of Vit. K, and Vit. K includes maybe 6 different "factors"(?), ~4 of which have Roman-numeral labels like II and VII and promote clotting, and the other 2 of which have different labels (Arabic numbers? letters? I forget now, sorry!) and inhibit clotting. The various factors have different biological "half-lives" in the body, so the contradictory impacts of Warfarin/Coumadin (inhibiting clot-promoters AND clot-inhibitors) takes place in different time-frames. At "steady state", after several days of W/C ingestion, the NET effect is to inhibit clot formation. But for the first 2-3 days, W/C does almost nothing to inhibit the clot-promoters, but it quickly reaches its full strength in inhibiting the clot-inhibitors, which very strongly promotes clot formation.

The researchers refer to this as a "paradoxical" impact, and it's caused at least a few well-documented clots, maybe including fatal ones. It's also the reason it's so important that Cardiac hospitals begin administering W/C orally to patients who are still in the hospital, AND administer something like Heparin (which inhibits clotting with a different mechanism) during the first 2-3 days of oral W/C administration.

I don't THINK that this "paradoxical" impact would be important for people who "drop" (= skip) a day or two of W/C when their INR is too high (then start up again), but it's possible that it could matter for people who are having trouble finding their correct dose and jump from (say) 2mg/day to 5mg/day to try to find it. Mostly, as long as the hospitals do it right, this should just be a curiosity.

 

[Jkm7]

I would guess this is what he was referring to: http://www.mc.vanderbilt.edu/reporter/index.html?ID=6215

Thanks, Kfay.
I'm sure that is it.

Seeing how much coumadin I took for the brief time and never reached desired range, this might have been a factor for me.

 

[Bina]

I was one of those people who was started on 5 mg per day in hospital along with Heparin IV and i ended up staying in hospital for a total of 16 days while the docs stabilized my INR....I ended up leaving on a dose of alternating 3mg and 2mg which surprised them that I was on such a low dose. The good part of it was that since they had gotten me solidly stable, I stayed stable, no waffling around, no roller coaster ride for me.

 

[Jkm7]

My neighbor takes coumadin for afib and her dose to keep her in 2.00 - 3.00 range is 1 mg alternating daily with 1.5 mg each week.

I was taking almost 100 mg /week and never got to 2.0 before my surgeon had me stop taking warfarin earlier than he initially intended.

Such a wide variance in metabolising this drug.

 

[Protimenow]

I didn't check out the Vanderbilt study, but I recently read one that indicated that certain ethnic groups metabolize warfarin differently from other groups. If I recall Asians needed less (or more?) than Caucasians. It IS a genetic thing. I'm not sure exactly what type of genetic testing would show the ability to metabolize warfarin - I suspect there may be certain genetic markers - but it seems as if they can't tell your ethnic origin from looking at you - that a genetic test for certain markers could help the medical professionals to start you on a more accurate dosage 'guess' than jsut prescribing the same starting dose for everyone.

 

[Jkm7]

I'm Caucasian so that theory is not applicable to me.
There are some cases (and I appear to one of them) that do not easily and smoothly handle coumadin. This is not 'knowable' before surgery unless one takes a 'test course' to determine how they adjust. This is one of the reasons the Vandervbilt ad caught my attention.

How lucky for me I opted for tissue valve.

 

[Protimenow]

I think that each of us responds to coumadin in a way that is unique to them. This is why not everyone can take the same dose and have the same INRs. For some (like you, perhaps), the response is different from many others. In a way, this is nature protecting the species. (For example, warfarin was used in the past as a rat poison. However, not all rats bled to death -- those that didn't, survived to reproduce and eventually a large population of warfarin resistant rats developed, so other poisons became necessary).

The new drugs under development (and one, Pradaxa, available for a-fib and being tested for mechanical valve patients) supposedly use a different method of anticoagulation that should work the same in everyone (perhaps it's a dosage based on body size - I don't know) and presumably one or two daily doses prevent the clotting sometimes seen with mechanical valves.

I don't want to knock tissue valves - and I hope yours lasts for decades - but the long term track record for mechanicals is considerably better than for tissue. OTOH - tissue valves are getting better, and non-invasive surgeries to repair the tissue valves may extend their lifetime even further. (When I got my valve replaced - in 1991 - I went with mechanical. 'How lucky for me.' At that time, tissue valves didn't last long - had I gotten a tissue valve, I would have anticipated one or more repeat OHS by now. Although I had a rough spot a few years ago when I wasn't tested for a while, warfarin/coumadin hasn't been a major issue in my life -- and being able to monitor and manage my INR has made it even better.)

 

[ALCapshaw2]

Since the reality still seems solidly in the range of Science Fiction and such, one would HOPE that the ad on Fox was very carefully worded, so's it was merely misleading, rather than outright false!!

Interesting potential, though.

I just read about a weird and fascinating (and potentially dangerous) characteristic of Warfarin/Coumadin: In the first ~2-3 days of W/C administration, it very significantly PROMOTES clotting!! Basically, W/C inhibits the effects of Vit. K, and Vit. K includes maybe 6 different "factors"(?), ~4 of which have Roman-numeral labels like II and VII and promote clotting, and the other 2 of which have different labels (Arabic numbers? letters? I forget now, sorry!) and inhibit clotting. The various factors have different biological "half-lives" in the body, so the contradictory impacts of Warfarin/Coumadin (inhibiting clot-promoters AND clot-inhibitors) takes place in different time-frames. At "steady state", after several days of W/C ingestion, the NET effect is to inhibit clot formation. But for the first 2-3 days, W/C does almost nothing to inhibit the clot-promoters, but it quickly reaches its full strength in inhibiting the clot-inhibitors, which very strongly promotes clot formation.

The researchers refer to this as a "paradoxical" impact, and it's caused at least a few well-documented clots, maybe including fatal ones. It's also the reason it's so important that Cardiac hospitals begin administering W/C orally to patients who are still in the hospital, AND administer something like Heparin (which inhibits clotting with a different mechanism) during the first 2-3 days of oral W/C administration.

I don't THINK that this "paradoxical" impact would be important for people who "drop" (= skip) a day or two of W/C when their INR is too high (then start up again), but it's possible that it could matter for people who are having trouble finding their correct dose and jump from (say) 2mg/day to 5mg/day to try to find it. Mostly, as long as the hospitals do it right, this should just be a curiosity.

Interesting information Norm.

When patients are required to go OFF Coumadin / Warfarin, they are often "Bridged" with Low Molecular Weight Heparin (a.k.a. Lovenox which has a very short Half-Life) while the Coumadin / Warfarin effects 'drop off' before the procedure and then build up after the procedure.

Bridging with Lovenox Injections or a Heparin-IV drip After OHS while beginning Coumadin / Warfarin 'should' prevent (or greatly reduce) the risk of clotting while the C/W medication metabolizes and stabilizes.

'AL Capshaw'

 

[Jkm7]

Protimenow......

You do me and others a disservice to constantly tell us what you project to be longevity for our tissue valves.
There are so many variables that can affect how long our tissue valves will be viable that you have no way of knowing for any of us on an individual basis. You cannot know how we feel it impacts our personal choices, way of life, other medical conditions we may or may not have and our tolerance for the untrained ACT professionals some here constantly rant about. Choice of valve is a very personal choice (most of us agree) and NO ONE in my opinion should steamroll their choice as the best choice. The best choice for each of us is the one we choose for ourselves after careful gathering and processing of information.

I'm so happy for you that coumadin is a non-issue. It is not such an easy road for everyone whether you care to take notice of that or not. May it always be that way for you and everyone who takes that life saving medication. May you never have medical procedures which require you to suspend ACT and have negative experience doing so. I hope you never have to cope with such a situation.

Please wish the same for us tissue valvers. I took my advice and valve/heart education from my learned MD's and professionals in the field. They really do learn something a bit more than us 'internet MD's' while they spend all those years in Medical School, Internships, Residencies, Fellowships and years and years of surgical experience. This forum is a hugely helpful, very, very, very good resource and I am tremendously grateful for it. I learned so much here and was able to make an informed and educated choice for my valve using this site in conjunction with what my doctors told/taught me.

NO ONE (including me or you) knows how long my tissue valve will last but, for that matter, NO ONE (including me or you) know what my life expectancy is for all reasons not only being a prosthetic heart valve. I well may die of something unrelated long before my valve would fail.

No ONE comes with any guarantees....... including those with mechanical valves.

 

[kfay]

Protimenow......

You do me and others a disservice to constantly tell us what you project to be longevity for our tissue valves.
There are so many variables that can affect how long our tissue valves will be viable that you have no way of knowing for any of us on an individual basis. You cannot know how we feel it impacts our personal choices, way of life, other medical conditions we may or may not have and our tolerance for the untrained ACT professionals some here constantly rant about. Choice of valve is a very personal choice (most of us agree) and NO ONE in my opinion should steamroll their choice as the best choice. The best choice for each of us is the one we choose for ourselves after careful gathering and processing of information.

I'm so happy for you that coumadin is a non-issue. It is not such an easy road for everyone whether you care to take notice of that or not. May it always be that way for you and everyone who takes that life saving medication. May you never have medical procedures which require you to suspend ACT and have negative experience doing so. I hope you never have to cope with such a situation.

Please wish the same for us tissue valvers. I took my advice and valve/heart education from my learned MD's and professionals in the field. They really do learn something a bit more than us 'internet MD's' while they spend all those years in Medical School, Internships, Residencies, Fellowships and years and years of surgical experience. This forum is a hugely helpful, very, very, very good resource and I am tremendously grateful for it. I learned so much here and was able to make an informed and educated choice for my valve using this site in conjunction with what my doctors told/taught me.

NO ONE (including me or you) knows how long my tissue valve will last but, for that matter, NO ONE (including me or you) know what my life expectancy is for all reasons not only being a prosthetic heart valve. I well may die of something unrelated long before my valve would fail.

No ONE comes with any guarantees....... including those with mechanical valves.

AMEN! Couldn't have said it any better.

 

[Bina]

My neighbor takes coumadin for afib and her dose to keep her in 2.00 - 3.00 range is 1 mg alternating daily with 1.5 mg each week.

I was taking almost 100 mg /week and never got to 2.0 before my surgeon had me stop taking warfarin earlier than he initially intended.

Such a wide variance in metabolising this drug.

J, I'm curious about your "low dose" neighbour. Is she a small woman? Any other medical issues?
My system has always been super sensitive to meds of any sort. I'm petite, very fair ( northern European),
with no other medical issues (that I know of).

 

[Jkm7]

She is of Irish descent, about 5'8" tall, when she started this dosage she was about a size 12-14 but is now slimmer and on the same dose. As she has aged, she has developed 'other conditions' but her coumadin dose has remained stable despite adding new meds and less activity.

I think there is a chance her dose might have been reduced but because of new meds perhaps they balanced what could have been a higher INR as her activity level decreased somewhat. She eats extremely healthy and always has. Has her share of greens/veggies.

 

[Bina]

My dose was very steady for the past couple of years at 18 mg weekly.
Two weeks ago I have had to reduce to 17 mg/week
because of a creeping up INR despite all the broccoli that I eat.
Tested yesterday...INR is 3.2 yay.

 

[Gail in Ca]

I think Jkm7 is being a bit harsh on Protimenow. Why are you so sensitive on your valve choice? Be very happy that you don't take coumadin, that you can get totally back to your normal self, (except for the scar that reminds you of your surgery), that you can do what ever you want and not worry about contusions or brain bleeds. I have had it both ways, and I can tell you that of course we would all choose tissue if we could.
I wonder about people being in denial about the length of time they will get out of their tissue valves. My expert surgeon said expect about 10 yrs, and I believed him. However, even he would've given me a tissue valve if I had really wanted one and it would've worked out that I could have had one. Surely, we all hope that people who get tissue will get 20 yrs out of their valves! But, redo surgery is no piece of cake. I have survived 3 of them, and each one is getting riskier, due to internal scar tissue and my age, I suppose.
Anyway, lets all try to get along. We are alive, and that's a great thing!!!

 

[Protimenow]

Protimenow......

You do me and others a disservice to constantly tell us what you project to be longevity for our tissue valves.
There are so many variables that can affect how long our tissue valves will be viable that you have no way of knowing for any of us on an individual basis. You cannot know how we feel it impacts our personal choices, way of life, other medical conditions we may or may not have and our tolerance for the untrained ACT professionals some here constantly rant about. Choice of valve is a very personal choice (most of us agree) and NO ONE in my opinion should steamroll their choice as the best choice. The best choice for each of us is the one we choose for ourselves after careful gathering and processing of information.

I'm so happy for you that coumadin is a non-issue. It is not such an easy road for everyone whether you care to take notice of that or not. May it always be that way for you and everyone who takes that life saving medication. May you never have medical procedures which require you to suspend ACT and have negative experience doing so. I hope you never have to cope with such a situation.

Please wish the same for us tissue valvers. I took my advice and valve/heart education from my learned MD's and professionals in the field. They really do learn something a bit more than us 'internet MD's' while they spend all those years in Medical School, Internships, Residencies, Fellowships and years and years of surgical experience. This forum is a hugely helpful, very, very, very good resource and I am tremendously grateful for it. I learned so much here and was able to make an informed and educated choice for my valve using this site in conjunction with what my doctors told/taught me.

NO ONE (including me or you) knows how long my tissue valve will last but, for that matter, NO ONE (including me or you) know what my life expectancy is for all reasons not only being a prosthetic heart valve. I well may die of something unrelated long before my valve would fail.

No ONE comes with any guarantees....... including those with mechanical valves.

I'm in agreement with you -- in fact, in my message, I noted that tissue valves seem to be getting better and that they're working on procedures that may extend the life of the valves even further. At the time I got my surgery, there wasn't much choice - and this is what I was referring to. I do not, and have not, recommended a valve of either type to any of those here -- it's a personal choice between the patient, his or her family, and the surgeon. I'm sure that everyone who has chosen a valve has been comfortable (or fairly so) with their decision. As far as MDs knowing more than us 'internet MDs' - I've known doctors who haven't really done much learning since the time they were licensed. I've seen one whose pre-tests before the continuing medical education courses were DISMAL. Only after taking a refresher course was he able to pass his CME exam. I doubt that he retained much of he had to cram to retain his license. Not all doctors are good - some are no damned good - but we all assume that the advice we receive is based on the latest knowledge. (Just as many of us assume that our doctors or anticoagulant clinics know what they're doing - be we've seen a lot of terrible advice from these 'experts' reported on these forums.)

You've got a tissue valve. Good for you. I'm glad you're happy with your decision. You don't have to worry about warfarin unless you get a-fib. I hope your valve can outlast you - however many years you have left.

As for me -- yes, I've had to reduce my dosages for procedures. It's been a bit worrisome. So far, I've survived. I have to things coming up where I'll probably have to stop warfarin for a few days. I think I'll survive it.

 

[Jkm7]

I think Jkm7 is being a bit harsh on Protimenow. Why are you so sensitive on your valve choice? Be very happy that you don't take coumadin, that you can get totally back to your normal self, (except for the scar that reminds you of your surgery), that you can do what ever you want and not worry about contusions or brain bleeds. I have had it both ways, and I can tell you that of course we would all choose tissue if we could.
I wonder about people being in denial about the length of time they will get out of their tissue valves. My expert surgeon said expect about 10 yrs, and I believed him. However, even he would've given me a tissue valve if I had really wanted one and it would've worked out that I could have had one. Surely, we all hope that people who get tissue will get 20 yrs out of their valves! But, redo surgery is no piece of cake. I have survived 3 of them, and each one is getting riskier, due to internal scar tissue and my age, I suppose.
Anyway, lets all try to get along. We are alive, and that's a great thing!!!

If you feel I am sensitive about my valve choice, then I have expressed myself poorly. My comments weren't 'about me'. I've made my valve choice, thankfully. My comments were meant as benefit to those who come now to begin their process of making their choice.
I feel there are sometimes messges that are too strongly worded being very close to inaccurate. Just because someone says it again and again it does not make it true. Sometimes they state info as fact when, indeed, it is speculation. I don't think it fair to those who have yet to make their valve choice for posters here to be so assertive that what they say is true and accurate and this is what the medical community expects from certain valves. They don't know that to be true. They should not be stating as fact what is so much just speculation.

My Mass General physicians aren't there because they are not current and capable. That hospital, year after year, ranks among the top five heart centers in the U.S. Those surgeons are among the best of the best and frankly what they told me about tissue valves carries far more weight than an 'internet MD' . Many of start to think we are the professionals but we don't come close.

I want for this forum to provide accurate info to the best of our ability and support and empathy and understanding and helpfulness to those who come here when they need the help so badly. I came here after my first heart surgery and was grateful I had found this place when I had to undergo a second OHS four years later. I want for others to have the same opportunity without the forcefulness sometimes expressed..... sometimes with inaccurate and unknowable presumed facts. How does Protimenow think he can know how long any individual's valve will last? My excellent doctors state they don't know but he does? What does he know of anyone's specific condition/situation? It does an injustice IMO

If I get 15 - 17 years from my valve, I'll be delighted. Remember, any of us here only know so much about any other poster by what we share. I doubt any of us share 'everything' about ourselves.

I wish I was a better writer and could express myself more clearly. I am frustrated with this message as it does not convey the full picture I would have liked to post.

Just my opinion. We all have one.

 

[Cris N]

Protimenow......

You do me and others a disservice to constantly tell us what you project to be longevity for our tissue valves.
There are so many variables that can affect how long our tissue valves will be viable that you have no way of knowing for any of us on an individual basis. You cannot know how we feel it impacts our personal choices, way of life, other medical conditions we may or may not have and our tolerance for the untrained ACT professionals some here constantly rant about. Choice of valve is a very personal choice (most of us agree) and NO ONE in my opinion should steamroll their choice as the best choice. The best choice for each of us is the one we choose for ourselves after careful gathering and processing of information.

I'm so happy for you that coumadin is a non-issue. It is not such an easy road for everyone whether you care to take notice of that or not. May it always be that way for you and everyone who takes that life saving medication. May you never have medical procedures which require you to suspend ACT and have negative experience doing so. I hope you never have to cope with such a situation.

Please wish the same for us tissue valvers. I took my advice and valve/heart education from my learned MD's and professionals in the field. They really do learn something a bit more than us 'internet MD's' while they spend all those years in Medical School, Internships, Residencies, Fellowships and years and years of surgical experience. This forum is a hugely helpful, very, very, very good resource and I am tremendously grateful for it. I learned so much here and was able to make an informed and educated choice for my valve using this site in conjunction with what my doctors told/taught me.

NO ONE (including me or you) knows how long my tissue valve will last but, for that matter, NO ONE (including me or you) know what my life expectancy is for all reasons not only being a prosthetic heart valve. I well may die of something unrelated long before my valve would fail.

No ONE comes with any guarantees....... including those with mechanical valves.

Very well said. After all, if mechanical valves were right for everyone, there wouldn't be tissue valves.

 

[Gail in Ca]

I guess I am just trying to help people who have to make a choice to be realistic about their future. I loved my tissue valve for 11 yrs, and for those years I felt as if I had never had OHS. Then, at 46, I had to have a redo and got mechanical. It's a jolt, to say the least. You have to get used to coumadin and the dosing and how it affects you. You have to get over getting upset when your INR goes out of range, as the medical people made it sound like it was life or death when mine went to, say, 4, or down to 2. You have to mourn not being able to water or snow ski, and being extra careful about cutting yourself, but when you do, be ready for it to bleed for longer than you thought, and take longer to heal. You have to get used to the huge bruises you find on all parts of your body. You don't even remember how you could've gotten such big ones.Oh, and let's not forget the noise of the valve at night. So, that's just some of what changes when you go from tissue to mechanical. Most people eventually have to go with mechanical. Some can't due to existing problems. I just remember that my life really changed when I started living with a mechanical valve. Of course, over time, I became one with my valve! Only to get endocarditis, and to have to get another, larger, louder one. Arghhhh! But, it's only been almost 2 yrs, so I'm certain that I will be one again with this valve.
So, when you are told by your cardio that your tissue is going to have to be replaced, and you are going to get a mechanical, be ready to shed a tear in mourning for your tissue valve.