Coumadin Valve choice questions

[Karlynn]

It's easy to poo poo things.

My question and observation was a sincere one. Not one to poo poo any choice, nor to get into the tissue/mechanical debate. My question would be the same on this issue regardless if it was the tissue or mechanical that they were saying they could implant via catheter. Scar tissue is problematic when doing any repeat surgeries from c-sections to heart surgeries. Thanks Bob for answering my questions. I always appreciate the information and thoughts you so graciously provide. Keep 'em coming.

It's my very humble opinion, but I believe valve choice should be made based first on what is known now about the valve and procedure being selected. To consider future enhancements or progress that may occur should be secondary. Once again, it's just MHO. I would offer the same opinion to someone if they were primarily selecting a tissue valve because future surgery will be through catheter, or a mechanical valve because there will be a better alternative to Coumadin in the future. Both things may be true. But we also know that not all solutions will apply to all people at any given time and that should be weighed carefully.

All I'm suggesting to our younger soon-to-be valve recipients is to make sure that the plus column has more in it than the negative column. Make your big pluses what is known now about your choice and the minor ones the "may bes".

 

[Ross]

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

Oh Tom, if only I could agree. I won't get started or things will get heated and stuff with start getting deleted. I do believe if everyone went through what I did, no one would be brazen enough to ever want to this surgery again.

 

[Old clicker]

I do believe if everyone went through what I did, no one would be brazen enough to ever want to this surgery again.

My surgery was uneventful,and certainly not what Ross went through. I hope I never have to got through it again

 

[Ross]

There's a wonderful line in the movie "Jurassic Park" where Jeff Goldblum's character says "Life finds a way" in reference to how evolution is amazingly ingenious at making things happen. I am a believer that medical technology is similar. It's easy to poo poo things. But 3 international patients and one in Detroit , Mi have already had their lives saved by catheter delivered aortic heart valves. Peter Jennings-ABC did a special on it. These patients had EF's under 30, severly dysfunctional LV's, were considered inoperable by traditional surgery, and would be dead right now were it not for this technology having already "found a way". It's not a big leap in thinking even by conservative standards to assume that in 15 years (maybe 10 or 12), this will be standard art, or at least a therapy option for 10 or 15% of the populace that opts for it. I do agree that 2nd or 3rd reops pose a technical challenge for already mentioned reasons, and this will have to be addressed....but when options expand, patients benefit...indeed, technology, like those dinosaurs, finds a way....time and time again...

So Hottie, when is your surgery scheduled? Is it your first? What's your story? Feel like introducing yourself? I'm just full of questions.

 

[Guest]

Another thing to consider - it the valve is mased up against the wall like a stent, then there is a good chance that warfarin (or whatever its replacement will be by that time) will be a necessity. The stents that are being used now cause minimal blockage of the artery, so only short term anticoagulation is needed. But there is a good possibility that pushing something as big as a valve up against the wall will set up eddy currents allowing the blood to stagnate and form clots. These could get thrown into the brain.

When they first started valve replacements, they were not sure that people needed warfarin (and if so for how long), so some people did not get it until they noticed that many people were having strokes and then they started giving it to everyone.

When Exanta was being considered as a warfarin replacement it was not even being tested in people with heart valves. Dabigatran seems to be the next drug on the horizon as a warfarin replacement. I just did a search of the National Library of Medicine for any journal article with the keywords dabigatran AND heart and got one article returned and it was a review not original research. Therefore, you have to conclude that there will be no replacement for warfarin for heart valve patients for at least the next 10 years.

Gall bladder surgery used to be nearly as traumatic as heart surgery is now. Then they came up with the keyhole procedure. I can remember sending cases of irrigating solution to the floors when a man was having prostate surgery. They would bleed for days - at least when certain surgeons were involved. Now I had my surgery and was home in 14 hours. (It would have been 12 hours but my grandkids were fussing that they were hungry so my son took them to eat before taking me home.) So I think that keyhole surgery will be perfected for valve replacements before too long.

 

[Dennis S]

Warfarin questions

Warfarin questions

I am starting to lean pretty strongly toward the choice of a syntetic valve. I think I understand what either option has to offer, but there is one important blank spot in my knowledge. I spent some "quality time" with my insurance provider today. I can get a prescription for up to 93 days at a time for Coumindin. I will have to pay $30.00 of the cost each time, which is very do-able. I live 80 miles from the nearest doctor. I am confident that if other people have mastered home testing, I will be able to do it. I have such basic questions. 1. Is Coumadin taken by injection, or in some other way? 2. If I can home test, what is a ball-park figure for purchasing a machine to do the testing? 3. When the test results are forwarded to be read, is this expense the type of thing insurance companies call "lab work" ? 4. if it is "lab work" my insurance (based in Minnesota) will cover all the cost IF I can send the test to a "lab" in their "network" in Minnesota. Minneapolis is a pretty big and medically advanced place. Do you think it is reasonable to expect there would be the type of lab needed to read my results? Thanks for any help from anyone on these questions. I look forward to the time when I will have some knowledge and experiences of my own, and have hepful hints and opinions, instead of simply one question after another. Thanks so much to everyone that takes the time to reply. The one thing I do without fail several times a day is check this site for your encouragment and support!

Another thing to consider - it the valve is mased up against the wall like a stent, then there is a good chance that warfarin (or whatever its replacement will be by that time) will be a necessity. The stents that are being used now cause minimal blockage of the artery, so only short term anticoagulation is needed. But there is a good possibility that pushing something as big as a valve up against the wall will set up eddy currents allowing the blood to stagnate and form clots. These could get thrown into the brain.

When they first started valve replacements, they were not sure that people needed warfarin (and if so for how long), so some people did not get it until they noticed that many people were having strokes and then they started giving it to everyone.

When Exanta was being considered as a warfarin replacement it was not even being tested in people with heart valves. Dabigatran seems to be the next drug on the horizon as a warfarin replacement. I just did a search of the National Library of Medicine for any journal article with the keywords dabigatran AND heart and got one article returned and it was a review not original research. Therefore, you have to conclude that there will be no replacement for warfarin for heart valve patients for at least the next 10 years.

Gall bladder surgery used to be nearly as traumatic as heart surgery is now. Then they came up with the keyhole procedure. I can remember sending cases of irrigating solution to the floors when a man was having prostate surgery. They would bleed for days - at least when certain surgeons were involved. Now I had my surgery and was home in 14 hours. (It would have been 12 hours but my grandkids were fussing that they were hungry so my son took them to eat before taking me home.) So I think that keyhole surgery will be perfected for valve replacements before too long.

 

[Guest]

1. By mouth

2. About $2,000 but insurance may help

3. If you have a home tester you don't need to forward the results to anyone, you can adjust your own dose.

4. Sending them to Minneapolis is not good. If you have to go to a lab to have blood drawn it has to be tested within (I think 4 hours) or else it has to be frozen to dry ice temp and shipped on dry ice. It also has to be centrifuged and the plasma drawn off of the red cells before it is frozen.

 

[geebee]

Coumadin is taken in pill form.
The cost of a home tester is about $2200. My insurance paid all but $300 on mine (I have the INRatio monitor). I pay $18 for a 3-month supply of test strips and about $15 every 6 months for other supplies.
You should be able to simply communicate with your cardio by phone to give him the results. He can then adjust your dosage if necessary. In a fairly short time, you will be able to adjust your own dosage and simply keep him informed of where things are.
The tester is a finger stick test - little pain and easy to use.

Good luck and keep on asking.

 

[Dennis S]

Coumidin questions

Coumidin questions

Thanks for the quick reply. Wow, am I glad to hear you take it by mouth. I won't even tell you what bad information I was given about that (not on this site, but from some guy who thought he knew something).

1. By mouth

2. About $2,000 but insurance may help

3. If you have a home tester you don't need to forward the results to anyone, you can adjust your own dose.

4. Sending them to Minneapolis is not good. If you have to go to a lab to have blood drawn it has to be tested within (I think 4 hours) or else it has to be frozen to dry ice temp and shipped on dry ice.

 

[geebee]

One of the things you will come to realize is there are so many horror stories out there about coumadin but none of them are true. Although there are things that need to be handled while on coumadin, there is no life disruption.

 

[Ross]

Hello All...

I guess I should introduce myself..you're right...

Recently I was diagnosed with what my cardio calls "asymptomatic hemodynamically significant AS" meaning he's noticed a higher than normal mean transvalvular gradient across my aortic valve. This was after I could not longer keep up with the 18 year olds at the gym and was getting tired earlier than usual. I'm under 40 with a famil history of congestive heart disease. He says that there is a 25-33% chance that within 5 years I will become symptomatic and require surgery, and that since aortic valve disease is progressive, the sooner the better. LVMI is fairly normal, and good EF. He also is of the ilk that does not normally refer non-symptomatc patients for OHS, and prefers to medically manage me with Plavix for awhile and follow me for a few weeks, months.

In the meantime, I listen what the family here has to say, and lean on folks wisdom, because its very helpful and calming at the same time...so until I go for OHS, this is a great help. I thank you all for the gift you bestow on folks with your advice.

I assume you've worked or still do work in the medical field. Your too well versed in this stuff for someone that hasn't been there yet. When you've actually had the surgery, then your a vet and then things make sense. I guess I'm seeking info on where all this information and statistics are coming from. All of this sounds really familiar to me and I'm sure, a few others as well.
I'm used to new people coming in scared and asking questions, not hopping right in and giving advice, especially when they haven't had surgery yet.

People don't need to go through this as many times as they can. They are lucky if they can make it once and for some, that's too much. I would suggest if your young, go mechanical and hope that you won't have to have another surgery. If you go tissue when your young, your setting yourself up for additional surgeries down the road that your body may or may not take. Remember folks, your statistics are coming from those that have not had the surgery themselves!

 

[Karlynn]

Qtson,
When you first start on Coumadin, you will want some guidance on dosage adjustment. After a short while, you will get the hang of it, or you may still prefer to home test and then phone in your results for a Coumadin manager, or doctor to make adjustment.

Your dosage will most likely change as you heal from your surgery and your body begins functioning better.

Once again, I'm plugging our wonderful Al Lodwick's site www.warfarinfo.com as something that will be a huge help for you. I would recommend getting his book "Warfarin: Rat Poison to Wonder Drug, A Guide to It's Use and Interactions" ($34.95, which includes s&h). I would also recommend getting his Warfarin Dosing Algorithms ($4.95). This is a chart that shows you how to adjust your dosage when your INR is not in range.

Coumadin (warfarin) users do have to be diligent in it's management. But IMHO we have a much easier time and have much less intrusion into our normal lives than diabetics do. But I think there's a lot more (unecessary) fear when somone finds out they need to take Coumadin, than if they find out they are diabetic.

It's all a bit overwhelming at first (but so is OHS ). You will adjust quickly to the routine and become a master.

Use VR as a good benchmark tool. Post what you are being told about Coumadin management and we can tell you if you're being given the correct information.

Best wishes.

 

[Karlynn]

He also is of the ilk that does not normally refer non-symptomatc patients for OHS, and prefers to medically manage me with Plavix for awhile and follow me for a few weeks, months.

Welcome Hottie,
Make sure your doctor continues to monitor you with echos etc. We have many members who were asymptomatic, but had severe valve disease. Some went into surgery and were told their valve only had days left on it. Lack of symptoms don't always mean that your disease isn't progressing. Nor do symptoms mean that someone's disease has reached the surgery point. Regular diagnostics are key.

 

[Mary]

Hello All...

I guess I should introduce myself..you're right...

Recently I was diagnosed with what my cardio calls "asymptomatic hemodynamically significant AS" meaning he's noticed a higher than normal mean transvalvular gradient across my aortic valve. This was after I could not longer keep up with the 18 year olds at the gym and was getting tired earlier than usual. I'm under 40 with a famil history of congestive heart disease. He says that there is a 25-33% chance that within 5 years I will become symptomatic and require surgery, and that since aortic valve disease is progressive, the sooner the better. LVMI is fairly normal, and good EF. He also is of the ilk that does not normally refer non-symptomatc patients for OHS, and prefers to medically manage me with Plavix for awhile and follow me for a few weeks, months.

Hottie,
I'm confused about what your cardio is suggesting; can you elaborate if I ask you some questions?
What tests did he run (if you don't mind responding?) If you had an echo, what numbers are they quoting?
He says that "since aortic valve disease is progressive, the sooner the better". Your cardio is making a statement that we rarely hear around here, especially with a 25-33% chance of becoming symptomatic.
Finally, why are you on Plavix? I had a nationally reknown surgeon tell me that Plavix is frequently prescribed but very often not effective in valve patients. My local cardio had prescribed it after a TIA episode that he thought was related to the calcium being thrown off from my stenotic valve.
If you can answer some of these questions, maybe we can help you sort some of your issues out.
Thanks-
Mary

 

[ALCapshaw2]

QTson:

I'll bet someone told you about the (Lovenox) injections to your abdomen used for BRIDGE Therapy when going OFF Coumadin for invasive procedures or surgery. That's only necessary for a few days before and after the procedure to 'cover' you while the Coumadin level drops and then builds back up (this can take 3 to 5 day each way).

You may want to wear some kind of Helmet when walking around on those rocks. I bought a pair of 'chain saw chaps' from Sears which are supposed to 'stall' the engine if the chain engages the chaps. ($50) You can also get special gloves to protect your hands.

 

[ALCapshaw2]

HOTIE:

Be aware that MANY (most?) Cardiologists prefer to 'medicate' Aortic Stenosis as long as possible. This is OK for a while BUT as the valve closes off, the heart compensates by 'pumping harder' which causes the heart muscle to 'strengthen' and ENLARGE. At some point, this becomes PERMANENT MUSCLE DAMAGE.

SURGEONS typically like to operate BEFORE there is any permanent damage to your heart muscles / walls. I side with the surgeons on this issue.

Watch BOTH your Chamber Dimensions for signs of enlargement (chart YOUR Echo numbers to look for CHANGES, don't just rely on 'normal' limits as the Cardio's do) and Effective Valve Area. Surgery is usually recommended when the effective valve area drops to 0.8 cm sq. but be aware that enlargement can occur BEFORE this area is reached.

One of the VR.com 'famous sayings' is
"The worse it gets, the faster it gets worse"
so it's good to have regular Echo's (preferably every 6 months if things are changing).

'AL Capshaw'

 

[cocoalab]

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???

That is a very good point. Andrew had his second replacement and I worried about even getting into the chest as that can take hours for some. I know from the surgeon that even removing the old one was difficult and that was fully opened. Andrew's surgery took about 10 hours I believe, and they got him open fairly rapidly. I remember saying he may be done sooner than they thought. Not!

The other thing is that the US tends to be the last to get new things approved so time will be a major factor for all of us. I know they will not be doing minimally invasive surgery on Andrew anywhere in the near future. maybe in his 70"S? He is 15 now.

Wendy

 

[Mary]

I agree with both Ross and ACapshaw. Good points.

I am slightly versed in the "lingo" as my step dad's (raised since 12) a heart surgeon, and uncle is an actuarial guy who has pumped for for years on believing statistics. I am admittedly biased gang, and use stats to calm me in most cases. But it's true that stats are just stats. When it affects you personally, stats go out the window. If the odds are 1 in 1000 that you get in a fender bender tomorrow, if you are that 1, you will have an understandably biased opinion from then on about the "1 in 1000" statistic. I understand that, Ross. ;-)

I did a stress test and my gradient was a 25, and only on rigourous exercise does it appear I have an issue. Surgeons apear to agree that the sooner LVH is addressed when it appears, the better chances are of doing better after OHS. Plavix was shown in some studies to retard progression of native valve disease, and thus if I can delay it a bit, then I'm ok with that. But not all agree on its effectiveness in that specific area...I also have high colestorol/..

I didn't think a stress test alone could determine a valve problem. 25 is a pretty low gradient, so I'm surprised that a cardiologist would say surgery in possibly 5 years. I would think your next step would be to get an echo.
Many members have NO problems with high cholesterol.
I wouldn't be taking Plavix unless I knew with certainity that I had a valve issue.

 

[Ross]

I agree with both Ross and ACapshaw. Good points.

I am slightly versed in the "lingo" as my step dad's (raised since 12) a heart surgeon, and uncle is an actuarial guy who has pumped for for years on believing statistics. I am admittedly biased gang, and use stats to calm me in most cases. But it's true that stats are just stats. When it affects you personally, stats go out the window. If the odds are 1 in 1000 that you get in a fender bender tomorrow, if you are that 1, you will have an understandably biased opinion from then on about the "1 in 1000" statistic. I understand that, Ross. ;-)

I did a stress test and my gradient was a 25, and only on rigourous exercise does it appear I have an issue. Surgeons apear to agree that the sooner LVH is addressed when it appears, the better chances are of doing better after OHS. Plavix was shown in some studies to retard progression of native valve disease, and thus if I can delay it a bit, then I'm ok with that. But not all agree on its effectiveness in that specific area...I also have high colestorol/..

Well, well, well, I knew I saw you before. Last time it was Smoothie, Cutiepie, and 4 others. Keep trying. I'll keep banning.

 

[Barry]

I chose a metallic valve because I'm neither so young that I knew that I could survive a second OHS to replace it, nor so old that I knew I'd be dead by the time I would need a second OHS.

One thing to consider is that if you've got a-fib you're likely to be put on Coumadin for that, anyway.

I'm among the school of those who consider having to deal with being on Coumadin to be merely an annoyance.