Valve Choice for 30 Yr. Old

[masterji]

Hi All,

I was hoping to get your guidance on my situation. I am a 30 year old and was diagnosed with a bicuspid aortic valve with severe regurge. My heart is showing signs of mild enlargement.

Given the longevity of a metallic valve, I was getting ready to go for a metallic valve. After doing some research, including a lot of help from this forum, I was prepared to take coumadin for the rest of my life. The inconvenience of taking it seemed o.k.

However, I was recently told by a doctor that the issue with coumadin is not just about the inconvenience of taking it. The exact quote he used was that the risk of a stroke with coumadin increases by 1%/per year. So, at 2 years it would be 2% and in 15 years it would be 15%.

This was very surprising for me. Have you heard of a similar stat - does this seem correct? Should I be rethinking my valve choice based on this?

I would appreciate your help.

Masterji.

 

[WayneGM]

Welcome to the VR community, Masterji. Sorry for the circumstances but glad you found us. I had a repair, so can't provide any personal insights on valve choice, but I hadn't heard these stats before. Hopefully somebody with more knowledge on this will come along soon with some information. Good luck and best wishes.

 

[JimL]

Hi and welcome. I suppose that means I'm now at 6% risk, since I've had my mechanical valve almost 6 years, but I don't feel at risk.
I think what your doctor is saying would apply to all of life. If you are a safe driver, what is the risk that you will have an accident this year? He might answer, 1%. What, then, is the risk that you will have an accident in the next 40 years of driving? He might answer, 40%. (Since you live in Chicago, and I grew up south of there, I would put the risk slightly higher.)
I don't think he means to say that your risk of trouble is 1% the first year, and 10% the tenth year. Your risk of trouble the tenth year would still be 1%, if he's right in putting the risk in those terms.
Good luck on your surgery!

 

[Ross]

Your Doctor is WRONG! The risk is NOT CUMULATIVE. At 15years + the risk is still 1 to 2%.

Keep in mind that many in the medical field do not know how to manage Coumadin. It's appalling, but it's true. If everyone were on the same page, I think that risk could be brought very close to 0%. To this day, we have Doctors telling patients to hold their Coumadin for some procedures, when no hold is necessary at all. You also have some patients that are noncompliant in being followed for proper INR range.

Check with Al Lodwick, he runs his own clinic and is a professional anticoag expert. He's touted his numbers a few times, but I cannot for the life of me, remember them. It's something like 1 bad event for every 2000 people.

http://www.warfarinfo.com/experiences.htm

This page details some of the experiences with the pharmacist-directed Anticoagulation Clinic where Mr. Lodwick is employed. These are not just stories about patients but, statistically-analyzed values.
During 1999, 345 people made 2,542 visits to the clinic. This accounted for 181.7 patient years. During this time there were 159 minor and 1 major bleeding incidents. There were eight events when patients had real of suspected blood clots but all turned out to be minor. The patients made an average of 14 visits to the clinic during the year. Thus they were monitored just slightly more frequently than once per month on average. The patients had their INRs in the therapeutic range at 58.7 % of all visits.

 

[Karlynn]

I suggest you get a new doctor. If he screws up information as important as that, what else is he wrong about? Seriously, I'd be concerned. He has demonstrated his lack of knowledge and a bias that is harmful.

Think about what he's saying - if it were true, what would be the point of installing a valve in a patient with the hopes of it lasting the rest of their life, if the increase of stroke increased with each year?

We have a member here who has had their mechanical valve for 40 years. His risk of stroke is the same as mine (at almost 16 years) and the same as someone who had it installed a year ago. The risk of stroke in a properly anticoagulated mechanical valve is the same as a tissue valve. So if what he were saying was correct - the same would hold true for a tissue valve.

Simply put - risk of stroke for replaced valves (either tissue or mechanical) is not cumulative.

 

[PeggyM]

Hi and welcome. I was 34 when I had to make a choice of valves for my first surgery. Since I was assured that it would last a lifetime and didn't want to go through with the surgery ever again, I chose a mechanical valve. Of course, things didn't turn out that way and it failed 3 years later, supposedly because it was too small.

I would still choose a mechanical valve if it was my first time today because I'm pretty sure statistically, the chances of a reoperation are low for most people.

And I agree, your doctor is wrong and you need to find a better one.

Best of luck to you.

 

[masterji]

Hi All,

Thank you very much for your responses. I am so glad I found you guys. Such helpful responses in such a small time - I am amazed. I have a few more questions that I will try and get your help on ( I will try and post them on the appropriate forums within this site).

Given your responses, I am now wondering whether I made a mistake in understanding the surgeon's point (although, I am pretty sure I didn't....my wife who was with me corroborates my story ). I am only doubting myself because he is very highly reputed. However, after reading your comments, I am convinced that the risk is not cumulative.

Again, so glad to have found you. Someday, when I hope to help others with my experiences as well.

Thanks,
Masterji

 

[Karlynn]

Hmm, now I'm really curious as to who the doctor is, seeing that you're in the Chicago area. Can I ask what hospital he is from?

Keep in mind that all cardiologists are not experts at valve disease. Sometimes they are so geared into seeing so many CAD (coronary artery disease) patients that they don't deal a lot with valve issues. Just something to check out.

Please read up on BAV (Bicuspid Aortic Valve) here. Look for posts by Arlyss in particular, she is quite well-read on the subject. With BAV they should also be taking a look at whether you have an aortic aneurysm. A CT scan is usually the way they check for that. Echos will often not show an aneurysm.

I'm glad you found us and know you look forward to being on the answering end of the question process for new members.

 

[ALCapshaw2]

Hi All,

I was hoping to get your guidance on my situation. I am a 30 year old and was diagnosed with a bicuspid aortic valve with severe regurge. My heart is showing signs of mild enlargement.

Given the longevity of a metallic valve, I was getting ready to go for a metallic valve. After doing some research, including a lot of help from this forum, I was prepared to take coumadin for the rest of my life. The inconvenience of taking it seemed o.k.

However, I was recently told by a doctor that the issue with coumadin is not just about the inconvenience of taking it. The exact quote he used was that the risk of a stroke with coumadin increases by 1%/per year. So, at 2 years it would be 2% and in 15 years it would be 15%.

This was very surprising for me. Have you heard of a similar stat - does this seem correct? Should I be rethinking my valve choice based on this?

I would appreciate your help.

Masterji.

Welcome JL,

MANY Doctors and even Surgeons seem to believe the (apparent) myth that Coumadin Risk is Cumulative.

There was a Long Discussion about whether Coumadin Risk was Cumulative back in February 2007 in the Valve Selection Forum under the thread "I'm only 24" which is worth reading.

Below is a copy of the most pertinent reply from Bradley White who teaches statistics. He concludes that many medical students and even practicing physicians do NOT have a good understanding of Statistics. Show that to your Docs and see what they have to say (about the statistical analysis, not the expressed opinion about medical students and doctors

'AL Capshaw'

QUOTE from Bradley White, Feb 13, 2007

I cannot stress that when risk for ACT complications is given on a "per annum" basis it is not to be taken as cumulative. This is true of any statistic which is laid out as "the risk per patient year is X%". This is a quite basic principle in all biological sciences, especially medicine. I find it astounding that any surgeon would try to say the risk is cumulative!!!! It just makes no sense.
Scary how little medical professionels understand about basic statistics.

If risk were cumulative then that would imply at a risk rate of 3% at 35 years of anti-coagulation the risk would be greater than 100%. This simply isn't true or possible, it is not how statistics works. These risk events are always observed in patient years, one could not reasonable extract that data and attempt to add it up and say that after 35 years everyone would have had an event. That's simply not how statistics works. Anything whose risk is finite in a per year basis will never be 100% over any course of time. It will approach 100% but never reach it.

The cumulative nature of anti-coagulation risk is that every year there is a 3% risk. That means that every year there is a 97% chance of not having an event. As time goes on the chances that you won't have experienced an event decrease due to the recurring risk of 3% per year. You can calculate this risk by taking .97 and using the amount of years you are interested in as the exponent and then subtracting that number from 1 to figure out your chances of HAVING an event in X years:

I have made the following calculations based on a 1%, 2%, and 3% risk at 10 thrugh 50 years. The number represents the chances that you WOULD experience an event by this year if you were on ACT for mechanical valve.

AT THE 1% RISK LEVEL

10 YEARS = 9.6%

20 YEARS = 18.2%

30 YEARS = 26%

40 YEARS = 33.1%

50 YEARS = 39.5%

AT THE 2% RISK LEVEL

10 YEARS = 18.3%

20 YEARS = 33.2%

30 YEARS = 45.5%

40 YEARS = 55.4%

50 YEARS = 63.6%

AT THE 3% RISK LEVEL

10 YEARS = 26.2%

20 YEARS = 45.6%

30 YEARS = 59.9%

40 YEARS = 70.4%

50 YEARS = 78.2%

If anyone doesn't understand how I calculated those risks I can send them the excel file. The thing that stands out the most is the huge long term risk change when one goes from a 1% per annum event rate to a 3% per annum event rate. At 30 years, less than half of those at 3% per annum event rate will have not experienced an event, while at the 1% per annum event rate 74% of individuals should not have experience an event. This a significant reduction in the long term risk of anti-coagulation and represents the major medical reason why self-testing is such a huge advance since it has been shown to decrease the event rate from the 2-3% per annum category to around 1% per annum.

Trust me surgeons and doctors are not infallible, especially when it comes to math. I teach pre-med students a 300-level Fundamentals of Genetics course (decent working knowledge of statistics) at Nortre Dame and it scares me to death to think that some of them could one day be my doctor based on their complete incomprehension of statistics (among other things) at this point in their eduction.

Brad
__________________
Ross Procedure, Dr. Quintessenza, All Children's Hospital, St. Petersburg, FL -- 9/12/2000

Aortic Root and Valve Replacement with 23 mm Homograft, Dr. Joseph Dearani, Mayo Clinic, Rochester, MN -- 12/7/2006

 

[briansmom]

Hopefully the link below will work. This was a thread from a few months ago in which one of our members (Bradley White) give his opinion of the stats that your doctor gave you. did I mention that Bradley teaches math at some prestigious university?

Oh, never mind, I see that Al just posted this info!

I think that you should consider another doctor. My son is 17. We chose an On-X valve for him and he now takes coumadin. He was an off-road motorcycle racer before all this so there has been some changes to his lifestyle. He now drives an off-road car. The coumadin is really not an issue for him (unfortunately, the continued heart failure is).



http://valvereplacement.com/forums/showthread.php?t=19796

 

[Susan BAV]

Here is part of an article published by the American Academy of Family Physicians:

Warfarin Therapy: Evolving Strategies in Anticoagulation
JON D. HORTON, PHARM.D., and BRUCE M. BUSHWICK, M.D.
York Hospital
York, Pennsylvania
"Warfarin is the oral anticoagulant most frequently used to control and prevent thromboembolic disorders. Prescribing the dose that both avoids hemorrhagic complications and achieves sufficient suppression of thrombosis requires a thorough understanding of the drug's unique pharmacology. Warfarin has a complex dose-response relationship that makes safe and effective use a challenge. For most indications, the dose is adjusted to maintain the patient's International Normalized Ratio (INR) at 2 to 3. Because of the delay in factor II (prothrombin) suppression, heparin is administered concurrently for four to five days to prevent thrombus propagation. Loading doses of warfarin are not warranted and may result in bleeding complications. Interactions with other drugs must be considered, and therapy in elderly patients requires careful management. Current dosing recommendations are reviewed, and practical guidelines for the optimal use of warfarin are provided.

Warfarin (Coumadin) is the most frequently prescribed oral anticoagulant, the fourth most prescribed cardiovascular agent and the overall eleventh most prescribed drug in the United States,1 with annual sales of approximately $500 million.2 Nonetheless, in 1995 the Agency for Healthcare Policy and Research (AHCPR)3 reported that warfarin is greatly underutilized for stroke prevention. The AHCPR noted that physicians are reluctant to prescribe warfarin, in part because they are not familiar with techniques for administering the drug safely and fear that the drug will cause bleeding. Patients treated with warfarin do require close monitoring to avoid bleeding, but it has been shown that the drug prevents 20 strokes for every bleeding episode that it causes.3...

...Hemorrhagic Complications

The most common complication of warfarin therapy is bleeding, which occurs in 6 to 39 percent of recipients annually.4,21 The incidence of bleeding is directly related to the intensity of anticoagulation. With the reductions in anticoagulation intensity that have evolved over the past 20 years, the incidence of hemorrhagic complications has decreased dramatically.

In patients receiving warfarin therapy, the median annual rate of major bleeding ranges from 0.9 to 2.7 percent, and the median annual rate of fatal bleeding ranges from 0.07 to 0.7 percent. The incidence of complications varies within the ranges, depending on the clinical indication and the intensity of anticoagulation. Intracranial hemorrhage accounts for approximately 2 percent of the reported hemorrhagic complications of warfarin therapy and is associated with a mortality rate of 10 to 68 percent.22

Patient characteristics associated with a major risk of hemorrhage have been identified in a number of randomized studies (Table 2).4,20,23-27 Bleeding that occurs with an INR of less than 3 is often associated with an underlying occult gastrointestinal or renal lesion.4

If bleeding occurs during warfarin therapy, the physician should immediately consider the severity of bleeding, the intensity of anticoagulation at the time of the bleeding episode and whether the patient has completed most of the prescribed course of therapy. Recommendations for the reversal of high INR values in patients with or without bleeding are summarized in Figure 4.4

Warfarin resistance is common after the administration of large doses of vitamin K. If anticoagulation therapy must be continued, heparin therapy should be initiated until the effects of vitamin K have been reversed and the patient is again responsive to warfarin.

Anticoagulation Therapy in the Elderly

One of the physician's most difficult tasks is to decide whether the risk of anticoagulation outweighs the potential benefit of warfarin therapy in an elderly patient. One study28 found that the risk of intracranial hemorrhage among the elderly is highest in patients with poor control (large variations in INR), patients receiving high-intensity therapy (INR greater than 4) and patients older than 80 years. Data from the Stroke Prevention in Atrial Fibrillation (SPAF II) trial29 suggest that the safety of anticoagulation in the elderly can be maximized through careful monitoring and maintenance of an INR between 2 and 3.

Another recent study30 investigated the incidence of ischemic stroke in elderly patients with atrial fibrillation who were receiving anticoagulant therapy. This study found that subtherapeutic INRs (i.e., those below 2) have associated risks of thrombotic events. For example, the relative risk of ischemic stroke is 3.3 times higher (95 percent confidence interval 2.4 to 4.6) in a patient with an INR of 1.5 than in a patient with an INR of 2. The study findings suggest that tighter control of therapy at an INR range of 2 to 3 is superior to the use of lower levels of anticoagulation...."

The complete article, published 2/1/99 and corrected in 2002 and 2006, can be found here: www.aafp.org/afp/990201ap/635.html The extra numbers within the text refer to the footnotes and can be found by clicking on the link.

 

[briansmom]

Also, want to point out that the incidence of "adverse events" drops dramatically for home testers. My son home tests so we can test him any time he gets a medication change, takes a new supplement, gets more or less active, etc. It is very easy to manage your own coumadin and that will keep you in your therapeutic range. You do not need to worry about normal bleeding like a cut. The only bleeding that you really have to worry about is internal bleeding, which for most people is pretty rare.
I certainly am not against tissue valves, I wish that my son had been a candidate and that he didn't have to worry about coumadin; but now that he has been on it a year, it is not a big deal and I REALLY don't want him to have another OHS anytime soon.

 

[Karlynn]

I'll say Amen to this: The AHCPR noted that physicians are reluctant to prescribe warfarin, in part because they are not familiar with techniques for administering the drug safely and fear that the drug will cause bleeding.

Not only that some physicians don't bother to educate themselves on current protocol and operate off of information over a decade old, but that they fear bleeding.

I believe this article is in our References section. It's one I often refer new members to for dosing guidelines. Just wish the doctors would read it.

The only thing I haven't liked about the article is the 6-39% bleeding. This leads the reader to believe that bleeding is a major problem and it's not. What is the percentage for bleeding in the general population? We all scrape and cut ourselves from time to time, causing bleeding. It only takes me a few seconds longer to stop a bleeding cut, than someone not on warfarin. This is the only article I've seen that has that large a percentage associated with bleeding.

People who take warfarin wil not just start spontaneously bleeding for no reason. If bleeding is occurring in properly managed warfarin, it usually signals another health issue that needs to be addressed.

 

[Susan BAV]

...I believe this article is in our References section. It's one I often refer new members to for dosing guidelines. Just wish the doctors would read it...

I just checked to see if the Reference section article was the same article and version as what I stumbled across on the Web today--most recently corrected and updated version--and it is.

Intelligent and informed home testing sure seems like the best way to go for long term anticoagulation therapy. And this site is a tremendous support for that.

 

[masterji]

Thanks all. This definitely gives a better idea about the risks involved. I just want to confirm that my interpretation is correct. If we go with the 1% scenario , it appears that while it may not be cumulative, the risk still increases with time.

10 YEARS = 9.6%

20 YEARS = 18.2%

30 YEARS = 26%

Is that correct? I understand that it is still important to note that the risk is not cumulative, but just wanted to see if I was understanding the article correctly.

Thanks.
Masterji.

 

[Ross]

Nope. It does not increase in time. It will increase as you enter your geriatric phase of life, but not before then.

This is precisely why I wish people would not play with statistics. If you are compliant, home test, self dose and continue with proper follow up, your not going to have figures like what your hearing and seeing. They post about the Coumadin user, but they fail to give age, compliance with testing, whether they self dose or are managed etc... It's a proven fact that a home tester and self doser has far less events then one that is managed by some clinic.

 

[Ross]

The only thing I haven't liked about the article is the 6-39% bleeding. This leads the reader to believe that bleeding is a major problem and it's not. What is the percentage for bleeding in the general population? We all scrape and cut ourselves from time to time, causing bleeding. It only takes me a few seconds longer to stop a bleeding cut, than someone not on warfarin. This is the only article I've seen that has that large a percentage associated with bleeding.

They shouldn't have put it in there and then follow with this line, which makes much more sense:

"In patients receiving warfarin therapy, the median annual rate of major bleeding ranges from 0.9 to 2.7 percent, and the median annual rate of fatal bleeding ranges from 0.07 to 0.7 percent. The incidence of complications varies within the ranges, depending on the clinical indication and the intensity of anticoagulation. Intracranial hemorrhage accounts for approximately 2 percent of the reported hemorrhagic complications of warfarin therapy and is associated with a mortality rate of 10 to 68 percent."22

And here again, nothing about the age, compliance, dosing or anything else of the reported events.

 

[Karlynn]

No, it doesn't increase over time. If it did, there wouldn't be much sense in recommending mechanical valves to younger patients who hope to have it for years and years.

Ross is correct in that the risk increases with geriatric patients. But if you're getting a mechanical at 30, you have the same risk at 30 as you do at 50 or 60. It is not cumulative.

 

[ALCapshaw2]

Thanks all. This definitely gives a better idea about the risks involved. I just want to confirm that my interpretation is correct. If we go with the 1% scenario , it appears that while it may not be cumulative, the risk still increases with time.

10 YEARS = 9.6%

20 YEARS = 18.2%

30 YEARS = 26%

Is that correct? I understand that it is still important to note that the risk is not cumulative, but just wanted to see if I was understanding the article correctly.

Thanks.
Masterji.

The risk of an event in any given year does NOT increase until Old Age (over 60, maybe even into the 70's).

Quoting from the article: "The number represents the chances that you WOULD experience an event by this year if you were on ACT for mechanical valve."

This means that the likelihood of having had ONE event in the Time Period cited is greater as the time period gets longer as one would expect. It does NOT mean the the risk is greater in any one year than any other year.

Statistics requires careful attention to detail (and an understanding of the underlying mathematics) for proper and accurate interpretation.

I hope this helps to clarify the interpretation of the data.

'AL Capshaw'

 

[Philip B]

Coumadin Risks

Coumadin Risks

Few things in life are a sure thing. Valve replacement choices and one's willingness to take the meds recommended by his/her doctor are a issues related to personal choices. It's a good thing to make sure the information you are getting from your doctor is accurate. As has been stated by other folks who've responded to your thread, there is a lot of misunderstanding and misimformation out there about the risks associated with coumadin.

My grandfather, who lived well into his 90's, was on a very low dosage of coumadin during the last ten years of his life. Coumadin reduced the chances of blood clots developing in his legs. While he only took 2.5 mg a day, he was trerrified that he would bleed out and die if he sustained any kind of cut (no matter how small). Where he got this notion I don't know, but it was a worry he shouldn't have had to deal with. If he were alive today, I'm sure he would be concerned about my welfare as I take 7.5 mg daily.

Unfortunately, those of us who've had valve replacement surgery resulting in mechanical implants get to deal with coumadin. Opting for a tissue valve implant reduces the chances of the individaul needing coumadin, but some of our members who have tissue valve implants have found themselves placed on coumadin.

Speaking personally, I'm not hugely concerned with the risks associated with Coumadin. The drug is necessary for me and dealing with it is simply a fact of life. The only real major challenge for me is remembering to take my meds. I feel so good that I sometimes have to be reminded to take my pills.

-Philip