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Soilman

Soilman

Well-known member
Joined
Aug 15, 2005
Messages
75
Location
New Bern, NC
Howdy folks,

Well, looks like my time in the waiting room has just run out. I'm tentatively scheduled for AVR on Aug. 21. Thanks to the information I've gleaned from this site for the past 2 years, I've decided to go with the On-X valve. Now comes the hard part. My surgeon has recommended that I enter the clinical trial for Plavix/aspirin or reduced coumadin. I'm 43 and in better than average shape. I've been a member of this website long enough to know that coumadin is not the "big monster" most folkes make it out to be. Even so, not having to bother with monitoring and not having to watch my diet or adjust coumadin levels to my diet IS appealing. I also understand that the effects of coumadin can be reversed in emergency situations while plavix can't.

My surgeon has also stated that were he in my shoes, he would choose the plavix regime. I could also withdraw from the trial at any time.


My questions to y'all is: If you were choosing the On-X valve and had to choose between the plavix and coumadin, which would you choose and what are your reasons for that choice?

Even if I decide to go traditional and take coumadin, I think I'd feel comfortable with the reduced coumadin and aspirin. What are your feelings on this?

Thanks,
Barry
 
Sorry, I can't answer your question, Barry except to say that as important as it is for medical knowledge that could help all, I'm not sure I would want to be part of such a medical trial, but I give you credit if you choose to do so- it's a big decision and I'm sure those with more Coumadin experience will weigh in. At any rate, I wish you the best and will put you on the calendar for August 21st.
 
Better safe than sorry?

Better safe than sorry?

WOW!!! I would like to see Al Lodwick's take on this.

Sorry, I am kind of the "dance with the one who brung you" kind of person. We know tons about Coumadin/Warfarin and we know that it works and works well for the purposes intended. The major problem with Coumadin, if it is properly regulated, is inconvenience. I just can't believe that a study that uses aspirin and Plavix has been approved for use with human subjects. From my perspective, this seems very dangerous.

But, then, I am not a medical doctor. This is what I suggest that you do...check into this very carefully and very thouroughly. Do the research. Ask the questions. Check with your cardiologist and other doctors that you know. Ask for written materials. Well before you go for surgery, check out the agreement that you must sign and get a lawyer to look it over. Check to see if there are other studies with plavix and aspirin in the works and what the adverse incident rate has been.

May I ask why you would want to be involved in a study like this?

Kind regards,
Blanche
 
Tough call, Barry. We have a member, Linda (Twinmaker), who was one of the pioneers who received a St. Jude valve during trials. She paved the way for so many of us and we are certainly very grateful to her. I, however, am not a gambler and would probably not take place in such studies.

I admire people who have the courage to take those leaps and wish you well in making whatever decision turns out to be best for you. Since I find coumadin not to be a problem, I would never participate.
 
Part of me wants to say go for it, the other does not. I feel Plavix to be more dangerous then Coumadin myself. I bled more taking it ,from my lungs. I know they need human test subjects to make this work, but I'm sorry, I can't see putting yourself at possible risk of stroke to prove a valves abilities.
 
Whereas I appreciate that experiments and trials further medical knowledge and are essential for progress, I just don't want to be part of it, nor my children. If it were some experiment for some incurable disease and I was going to die regardless but this might give me some extended quality life then fine, but I am not going to gamble with my health when current treatment could pretty well ensure a decent quality of life. I have had a stroke and I sure as heck want to avoid another if at all possible so for me, no thanks, I will stay on rat poison.
 
The conservative (i.e. SAFE) soluton is to go with Coumadin.

Did you receive the information package from On-X?

Review the South African Study where they noticed a significand DROP (not elimination) of Strokes and complications in a largely undereducated and / or non-compliant population. This is ENCOURAGING and probably one of the reasons for the Aspirin / Plavix study.

It's YOUR gamble (and a TOUGH CALL).

I agree that the On-X valve is a GOOD CHOICE regardless of what anti-coagulation protocol you choose because of the potential for reduced incidence of clot formation with or without anti-coagulation.

'AL Capshaw' (On-X is my First Choice for MVR whenever that time comes. Standard St. Jude is my Second Choice).
 
Thanks for the replys folks. Please keep them coming.

I must admit that the reason I'm interested in this is not so much for the study as it is for a chance at a more "normal" lifestyle. I am also quite impressed the the On-X valve and it's touted improvements...perhaps overly so. I think the improved flow dynamics and reduced clotting instance of the valve is fantastic, but being a rather rugged, active, outdoors person, it's not a matter of IF I get cut, brused scraped but WHEN I get cut, brused or scraped. Therefore, the specualtion and potential of this valve to work with aspirin only or even a reduced INR of coumadin is of great interest to me. Plavix is the first step in that direction.

I have a cousin who is a research pharmacist at a university who is looking into the study for me and will help me compare the effectiveness of plavix to coumadin. Yes, I'd love to live with the freedom Plavix would give me, but only if I'm convinced it is as effective as coumadin and has minimal risks all the way around.

What do all of you think about the low dose coumadin regime holding the INR around 2.0?
 
I am too old to change horses in the middle of the stream..:D but..I hope you cn make the right choice...I was wondering where is your surgeon? See you live in Henderson, N.C. Duke in Raleigh?..Also, just read on the internet news about the Basketball coach at Wake Forest dying after his noon jog yesterday..Age 53.. from a massive heart attack..Shame...Never know? Bonnie
 
Soilman said:
Thanks for the replys folks. Please keep them coming.

I must admit that the reason I'm interested in this is not so much for the study as it is for a chance at a more "normal" lifestyle. I am also quite impressed the the On-X valve and it's touted improvements...perhaps overly so. I think the improved flow dynamics and reduced clotting instance of the valve is fantastic, but being a rather rugged, active, outdoors person, it's not a matter of IF I get cut, brused scraped but WHEN I get cut, brused or scraped. Therefore, the specualtion and potential of this valve to work with aspirin only or even a reduced INR of coumadin is of great interest to me. Plavix is the first step in that direction.

I have a cousin who is a research pharmacist at a university who is looking into the study for me and will help me compare the effectiveness of plavix to coumadin. Yes, I'd love to live with the freedom Plavix would give me, but only if I'm convinced it is as effective as coumadin and has minimal risks all the way around.

What do all of you think about the low dose coumadin regime holding the INR around 2.0?
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A couple of comments.

One - I do not really know if Plavix will give you any more "normal" a life than coumadin as both carry risks. I lead a "normal" life on coumadin (have for almost 27 years).

Two - with some of the stats on the On-X, the INR around 2.0 study is something I might participate in if I had an On-X valve. I think that is a real possiblity of success and less dangerous than only Plavix and aspirin. However, I think people will find that life with an INR of 2.0 is no different than a life with an INR of 3.0 other than (perhaps) less protection against clotting.
 
Barry,

I don't know as much as most here do about this but I have had ZERO problems with coumadin. If it were me I would go with the coumadin or tissue (and hope I would not need another OHS or have to go on coumadin for another reason). But it is not me;) , we all had to decide with the help of our doctors what we would do. It may be selfish but I am not willing to be a test case.

Tom
 
My surgeon is Dr. Lance Landvater out of Wake Med in Raleigh. If I participate in the study, I must have the operation at Wake Med. If I go traditional, we can go with Rex in Raleigh. Both are top notch heart centers and use the same surgeons.
 
Guess I'd need your definition of "normal life". I haven't altered mine in anyway being on Coumadin. Lab testing and having to have bridge therapy for some other surgical procedures can be an inconvenience, but I wouldn't call it lifestyle altering.

Personal thought about 2.0 INR on Coumadin is why bother, take aspirin and forget it. No, this hasn't been studied, but there is almost no difference between an INR of 2.0 and 1.0. 1.0 being a person not on anticoagulants.

One thing that would stop me in a hurry is the price of Plavix:
Plavix - 75mg Tablets
Quantity Our Price
30 tablets $126.99 - save 16% ($24.92)
90 tablets $365.90 - save 20% ($89.83)
100 tablets $406.55 - save 20% ($99.82)
120 tablets $487.86 - save 20% ($119.78)
150 tablets $609.82 - save 20% ($149.73)
180 tablets $731.79 - save 20% ($179.67)

VS Coumadin/Warfarin

Coumadin - 5mg Tablets
Quantity Our Price
30 tablets $29.03
90 tablets $77.90
100 tablets $86.56
120 tablets $103.87
150 tablets $129.84
180 tablets $155.81


Warfarin Sodium - 5mg Tablets
Quantity Our Price
30 tablets $13.99 - save 30% ($6.00)
90 tablets $34.99 - save 42% ($24.97)
100 tablets $38.88 - save 42% ($27.74)
120 tablets $46.66 - save 42% ($33.29)
150 tablets $58.32 - save 42% ($41.61)
180 tablets $67.63 - save 44% ($52.29)
 
Soilman said:
I have a cousin who is a research pharmacist at a university who is looking into the study for me and will help me compare the effectiveness of plavix to coumadin.
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I can't offer an informed opinion on this, but glad to hear you've got somebody in your corner to take a look at this before deciding. Personally, my gut reaction would be to go the tried and true route if I were in your shoes, unless it was a situation where it was a "last resort" and I had nothing to lose.....but I've never been much of a risk taker so that's my nature. If you do decide to go the clinical trial route, I commend you for it as I suppose somebody has to be brave enough to be a pioneer.

Whatever your decision is, best wishes on your journey over the mountain.
 
Rachel,

I will be on coumadin for 3 months no matter which route I take. Also, I must be tested with the plavix to make sure I respond to it. If I don't respond to it, that will make my decision much easier.:D

My thinking is that I'd like to be tested for the plavix even if I decide to go coumadin. Five years down the road, it may be proven that plavix is the way to go. I'm not sure I can be tested for plavix while on coumadin and would therefore be out of luck to switch over. I may have to sign up for the trial to do this, then withdraw. Yeah, I know, thats being sneaky, underhanded, manipulative and just plain selfish, but when I've only got one shot at something like this, a shotgun covers the target best.
 
To offer a contrarian point of view, I probably would agree to be a part of the study if it were me. In my job, I develop and prepare for manufacture FDA-regulated Class II medical devices, which I think has given me an appreciation for how much work and pre-studies go into a particular product before the FDA will OK a product or procedure for clinical trials. That said, occasionally there are issues, but from my exeperience, there are extremely rare and the exception rather than the rule.

Just my opinion. :D
 
Since you ARE asking opinions, Justin has had a couple of experimental surgeries, BUT anything he had done, "IF" it went wrong wouldn't mean a sudden not curable in all cases condition, such as a stroke and/or increased chances of death. When he got his origonal conduit, they way they did it was experimental in hopes it woukld grow with him and wouldn't need replaced, the tried and true option would definately need replaced several times as he grew, and so worse case he would need another surgery. Which IF we tried the known conduit, he would have had a couple of anyway. We also would try a cath replacement,since he would need a cath pre op anyway, and so if it didn't work and IF we found out it wouldn't hurt him, worse case they would have to do the surgery, like they hoped to prevent. If that makes sense. Even the surgery he just had, they replaced a section of his conduit with a newer more ridgid material that isn't often used, but hopefully for HIM, it will last longer than the 18 months his last one did. To ME those are the kinds of risks I am will to gamble on and pray for the best.
But I'm not sure I could choose for myself, (and NEVER would for my child) something that if it doesn't work, could be a disaster personally. I would find out what the chances of a stroke would be if they are wrong? I personally fear a bad stroke more than dieing ,since,heck I'd be dead and my family would be sad, but if I had a bad stroke,Their lives could be changed for years if they had to care for me emotionally,financially ect..IF as others have said,the experiment was the only life saving option, I would sign up for it. But when there is a relatively good choice, that thousands of people live quite well on, I don't think I would risk it. To me not being on coum that is known to work against stroke,AND using something that "SHOULD" work, would be like waking up every morning and being happy the experiment worked for at least one more day and pray today was good too. IF I was that set against going on coumadin, and willing to take risks, I PERSONALLy would choose the risk of getting a tissue valve, probably not needing any meds for about 15 years, THEN when all the studies are in , IF they work out as hoped, getting the ON-X when the tissue valve needs replaced.
Also (since you asked lol) to me personally being on a lower dose of coum, really doesn't seem to have alot of benefits in day to day living, you still need to take meds,you still need to have the inconvience of testing ect.still need to deal with coum managers that might not understand coum. To me the only postive would be less of a chance of getting so high,you bleed bad, but as you see, not that many people run into that being a problem and as everyone says here,"Easier to replace blood cells than brain cells"
So are you sorry you asked? I've spent alot of time thinking about this,I have trouble sleeping. :) lyn

added on, I think it is a smart idea to have the plavix test done now,whileyou can,even better if itison their dime :)
 
I've been on coumadin for 34 of my 56 years because I have two mechanical valves, aortic & mitral valves. First OHS was in 1975; had Cooley-Cutter Valves implanted by the master & world renowned, Dr. Denton Cooley. Last year, March/2006 I went to Houston again to have the aortic re-replaced with a St. Jude valve. So now I have a brand new valve & the 31-yr. old mitral valve, still clicking away! There's a chance in the near future, that I may have to face a 4th OHS to have the mitral valve re-replaced but I'll cross that bridge when I come to it!

I have a home monitor to check my INR levels to make sure I keep them between 3.0-4.0 to eliminate the possibility of clotting. I have never had any big issues with coumadin other than just keep monitoring it. After surgery, it may take a few weeks to finally reach the proper INR level which may be a little inconvenient but considering what most of us have been through, what's a little inconvenience?! :)

Good luck to you & I hope you are happy with whatever choice you make. God Bless!
 
My age 61 year old sister had..2 stents put in about 5 months ago...due to blockage..1 100% and 1 75%....Had a hard recovery..due to a hematoma..in her thigh...:eek: I talk to her everyday..doing fine but told me last night at church..looked down and saw a huge knot..must have bumped it..between her elbow and wrist..also. said..she has many bruises all over. she is on the plavix/aspirin regiment for at least a year...(was in her hospital room when her surgeon told her)....He said . It was a MUST)..I hardly ever bruise/bleed..Been on coumadin for 5 years.........She works for the American Red Cross. and is on top of all health issues..and admitted to me this morning..has to be the plavix/aspirin....so she needs to be careful for the next 7 months.. I am 5 years older than her.:D Bonnie
 
VERY INTERESTING Revelation Bonnie.
Thanks for sharing.

Note to ROSS: Bonnie's post should be copied to the Anti-Coagulation Forum as well.

'AL Capshaw'

Granbonny said:
My age 61 year old sister had..2 stents put in about 5 months ago...due to blockage..1 100% and 1 75%....Had a hard recovery..due to a hematoma..in her thigh...:eek: I talk to her everyday..doing fine but told me last night at church..looked down and saw a huge knot..must have bumped it..between her elbow and wrist..also. said..she has many bruises all over. she is on the plavix/aspirin regiment for at least a year...(was in her hospital room when her surgeon told her)....He said . It was a MUST)..I hardly ever bruise/bleed..Been on coumadin for 5 years.........She works for the American Red Cross. and is on top of all health issues..and admitted to me this morning..has to be the plavix/aspirin....so she needs to be careful for the next 7 months.. I am 5 years older than her.:D Bonnie
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