Which Valve do you Have?

[Bina]

Bina and others,

How often do you need to use your machine to monitor your blood? How much of a supply of coumadin or warfarin are you prescribed? More importantly how long does it last? Is it costly?

John, here in Canada, we can test how often we like, or how often we need to.
My choice is every second week since my INR is quite stable.

I buy enough test strips for my machine to last one year. $182.00
My coumadin use is 2 prescriptions....2mg and 3mg tablets which I alternate to give me 18 mg weekly.
I can get 60 pills for about $25 it's very inexpensive ,and my husband's insurance covers 80% of that as well as the test strips.

 

[JohnCalderwood]

How long do those 60 pills last Bina? Do you get 60 at a time? Thank you. John.

 

[JohnCalderwood]

I had a "significant issue" after only seven years on the drug that was due to my own ignorance and mismanagement.


What happened dick0236?

 

[neil]

i agree with dick on this one,mech and tissue have there own set of risks, hence we have these debates,and will do until theres a valve which lasts a lifetime and doest require anti coag

 

[JohnCalderwood]

Does anyone know why Robin Williams had a bovine valve? He must have had some high priced advise coming his way?

 

[dick0236]

I had a "significant issue" after only seven years on the drug that was due to my own ignorance and mismanagement.


What happened dick0236?

John, first remember that my "significant issue" took place in 1974 (the dark ages). Doctors understood little and patients even less about Coumadin/Warfarin. I went on a several day vacation without my warfarin. I had a CVA(stroke?) on my first day back to work after that vacation. The CVA may, or may not, have been caused by my not taking the drug for the better part of a week. I do know that I have not missed taking the med since and I have had NO additional problems for the past 35 years. Warfarin only requires "due diligence", common sense and an easy, simple regimen.

Incidentally, I have taken some of the drugs you listed on a separate post without any serious interactions. You learn pretty quickly which drugs may cause problems. FWIW, warfarin is NOT a big problem. I have lived a fully normal and active life on the drug. I only preach that if your go on it you MUST develop a regimen in taking the drug as prescribed and testing INR on a regular basis. Other than that, I do what I want, eat what I like and pay little attention to the drug.

 

[Ross]

Does anyone know why Robin Williams had a bovine valve? He must have had some high priced advise coming his way?

Cleveland Clinic has been using tissue more so then mechanical, still preaching the myths of how bad Coumadin is. Yes, even a world class facility is still in the stone age as far as the drug is concerned and their knowledge of it. I'm guessing Mr. Williams was told a bunch of malarky about Coumadin, but we don't know and probably never will. The other thing is, many of the surgeons at CCF have a financial interest in the valve companies that they wish their patients would use. They now have to clearly indicate what their financial relationships are with what companies. You'll see it if you look up a particular surgeon.

Just as an example, this is Dr. Gillinov's

Industry Relationships
Cleveland Clinic physicians and scientists may collaborate with the pharmaceutical or medical device industries to help develop medical breakthroughs or provide medical education about recent trends. The collaborations are reviewed as part of the Cleveland Clinic’s procedures. The Cleveland Clinic publicly discloses payments to its physicians and scientists for speaking and consulting of $5,000 or more per year, and any equity, royalties, and fiduciary relationships in companies with which they collaborate. In publicly disclosing this information, the Cleveland Clinic tries to provide information as accurately as possible about its doctors’ connections with industry and those of their immediate family members. As of 7/31/2008, Dr. Gillinov has reported the financial relationships with the companies listed below. Patients should feel free to contact their doctor about any of the relationships and how the relationships are overseen by the Cleveland Clinic. To learn more about the Cleveland Clinic’s policies on collaborations with industry and innovation management, go to our Integrity in Innovation page.

Consulting. Dr. Gillinov receives fees of $5,000 or more per year as a paid consultant or speaker for the following companies:
•Edwards Lifesciences, LLC
•Medtronic, Inc.
•St. Jude Medical, Inc.

Royalty Payments. Dr. Gillinov has the right to receive royalty payments for inventions or discoveries related to the companies shown below:
•Kapp Surgical Instruments, Inc.

Equity. Dr. Gillinov owns stock or stock options in the following companies for activities as a founder, inventor, or consultant:
•Clear Catheter Solutions
•Viacor, Inc.

Inventor Share. Dr. Gillinov may receive future financial benefits from the Cleveland Clinic for inventions or discoveries related to the companies shown below:
•Clear Catheter Solutions


See also this page:
http://my.clevelandclinic.org/about/overview/integrity.aspx

 

[John & Joann]

Mechanical (arotic and Mitral) Working good!

 

[Bina]

How long do those 60 pills last Bina? Do you get 60 at a time? Thank you. John.

I get 60 and take one daily, so I'm good for 2 months.

 

[Bina]

Does anyone know why Robin Williams had a bovine valve? He must have had some high priced advise coming his way?

Robin is 57 yrs of age.....around that age many docs will recommend tissue valves, but I'm sure he still had a choice.

 

[Kvntoday]

What Valve do I have

What Valve do I have

Mechanical Aorta

 

[Mileena46]

I think Ross said very well in his post. Here is my problem with Valeries death....I went back and read all the post her husband wrote leading up to her death and its heartbreaking. I had a really tough time with this even though I didn't talk to her much. I was telling my own family about it and explaining that I told her it would be alright....I am 46, she was 29! I assumed and expected that everything would go well with her surgery. The guilt too....Ross was speaking of...when I think of her 2 yr old daughter now who doesn't have a mother.....my own son is grown, yet I survived...along with all of you reading this....

My one and only decision in getting a mechanical valve was the high chance that I wouldn't have to re-do this surgery. I remember the horrible fear I had when I first found out, and the relief that it was finally over, and the burden of worrying about it was behind me. I didn't want or like the idea of taking Coumadin for the rest of my life......and I haven't even gotten to the point of it being "just taking a pill" because to me, it is somewhat of a big deal...BUT compared to the worry of a re-op...I will take the worry of the drug anyday. There is no comparison.

Mileena

 

[Duff Man]

If I do in fact make it to surgery I can promise you that I will be receiving a Mechanical valve. Risk of bleeds be damned! I'd rather at least feel in control of my fate for the next forty years than face a re-op every 10 and not even have the illusion of control. I can not fathom the idea of going through this kind of anxiety and trepidation every ten to fifteen years. I've seen enough folks die on this board now to know that every single AVR is extremely serious business. The gravity of this procedure is not lost on me, the odds are real and I am not the kind of guy that has fantastic luck.

I'm also 26 years old, so I have at least 100 years left to live . At 10 years per valve, that's 10 re-operations... which I guess would basically amount to a ~30-50% risk of mortality if you add each operation up. This assumes a 3-5% risk per operation for a bentall type procedure.

Much credit to those who can stomach the idea of a re-op. I view tissue valvers as possessing some sort of super-human emotional constitution.

 

[Bridgette]

Mechanical, mitral valve.

I would be FAR more worried about being on a drug like Amiodarone for a long period of time, than I am about being on Warfarin.

Of course, I'd rather be drug free and have my own valve, but who here wouldn't?

 

[vprnet]

If I read the stats on this thread correctly there have been over 1,200 views since our dear parting sister Valerie started ita little more than a week ago. It's a testament to the contribution she has made to our community in the short time she's been with us.

I'm sure that anyone who reads our member posts contributing to her thread will appreciate the gift she has left us with.

For years to come I hope everyone who enters our community with the hope of comng to a personal decision on valve surgery choice will read the threads and posts by Valerie.

God beless you Val.

 

[tobagotwo]

This was, as I recall, a poll about how many people had which kind of valves. It had a small flaw, inthat some people didn't feel their type of valve (porcine) was included. However, this type of poll has been done before, and it's been noted that people with mechanical valves tend to stay on longer because of the Coumadin information they share, and that they probably hold the lion's share of the longer-term membership.

But...when something so dreadful and undeserved happens that an individual doesn't make it through their first surgery, it's entirely immaterial which valve choice they made. Mechanical, Tissue, Ross Procedure: when a person passes on without getting any of the added life that each of these valve solutions promises, it's nothing but tragic, nothing but sad. There is no inference to be drawn from the 1% or the 5%: there is only their loss.

 

[Superbob]

This was, as I recall, a poll about how many people had which kind of valves. It had a small flaw, inthat some people didn't feel their type of valve (porcine) was included. However, this type of poll has been done before, and it's been noted that people with mechanical valves tend to stay on longer because of the Coumadin information they share, and that they probably hold the lion's share of the longer-term membership.

But...when something so dreadful and undeserved happens that an individual doesn't make it through their first surgery, it's entirely immaterial which valve choice they made. Mechanical, Tissue, Ross Procedure: when a person passes on without getting any of the added life that each of these valve solutions promise, it's nothing but tragic, nothing but sad. There is no inference to be drawn from the 1% or the 5%: there is only their loss.

Amen, well said.

 

[pop]

i haven't done any posting, just reading. last jan. i had a bovine tissue
aortic valve installed and the mitral valve reshaped. truly a 7 day ordeal, but i survived, went thru cardio rehab and was told after a recent echo that all was well. i feel great. my surgeons (2) were well qualified ( over 2200 proceedures ).
in the first meeting i had with them, they both virtually insisted on a tissue valve,
sighting the newer figures on the life expectancy of the edwards valve along with the issues surrounding coumadin. they both were of the opinion that another replacement
sometime in the future was better than that same period of time on coumadin. as i
learned a long time ago to find the person you trust and then follow their advice, i went
with their advice. not meaning to imply that this is the only way, but it has been
my way. i am in excellent health and 71 years old.

 

[Ross]

i haven't done any posting, just reading. last jan. i had a bovine tissue
aortic valve installed and the mitral valve reshaped. truly a 7 day ordeal, but i survived, went thru cardio rehab and was told after a recent echo that all was well. i feel great. my surgeons (2) were well qualified ( over 2200 proceedures ).
in the first meeting i had with them, they both virtually insisted on a tissue valve,
sighting the newer figures on the life expectancy of the edwards valve along with the issues surrounding coumadin. they both were of the opinion that another replacement
sometime in the future was better than that same period of time on coumadin. as i
learned a long time ago to find the person you trust and then follow their advice, i went
with their advice. not meaning to imply that this is the only way, but it has been
my way. i am in excellent health and 71 years old.

Well get with the posting. Can't have you sitting on the sidelines when you've been through this surgery yourself.

 

[Read]

OnX mechanical avr on 6/13/2008..pacemaker installed a week later due to total heart block..it was as Ross has said ..a huge ordeal that I am glad is in the rearview mirror. There is not a day that has passed that i have not thought of the surgery and how amazing it is to be alive after it..Thanks and prayers to Valerie..