I'm only 24!

[mmarshall]

boomer,
Since you are in Tulsa, look up Dr. William Ryan out of Dallas, Tx. He mainly works out of Presby. of Dallas. He is one of the top surgeons and does many Ross Procedures and valve replacements. I was going in for a RP and once he was in there he felt that a tissue valve is the way to go at the time. Look at my threads around that time of my surgery and it will give you an idea of the different things I heard from different surgeons. Coming from a Longhorn, I highly recommend you contact Dr. Ryan...I will ignore the fact that you are a boomer sooner for now.

 

[Bradley White]

That is exactly correct Susan. If the chance was 3% they would win the lottery the first year, regardless of whether they won the lottery or not it would be a 3% chance the next year. This is the case with discrete events that either occur or don't occur in a finite amount of time.

If your odds of having a stroke are 1% and you have stroke, the next year you still have a 1% chance. If you don't have one, the chance is still 1%.

This can be different for events that are not discrete. For instance, valve deterioration. The deterioration of a tissue valve is a progressive, slow PROCESS. This would be a cumulative process and the odds of failure would increase each year although it is unlikely they would increase in a ADDITIVE fashion like 3% per year. It would be something like 1% year 1, 5% year 2, 25% year 10, etc etc. Once the valve fails it is done, unlike with a stroke where you can have more than one. Probabilities like these cannot be calculated on a per annum basis. They are based strictly on observation from patients.

Bleeding events and blood clots are not progressive processes. The are discrete events that occur and then are done. Not the case with such things as valve deterioration. That is why the probabilites are handled differently.

Brad

 

[Bradley White]

I thought of another good example. In vegas, if the roulette ball falls on red quite a few times in a row (4 or more) you see people start throwing money at black. They mistakenly believe that the history of where the ball has landed effects where it will next fall. They think it more likely to fall on black the next time. This is not true of course. Each time the ball has a 50% chance to land on red and a 50% on black, history is irrelevant. It is the same basic principle that applies to ACT and mechanical valves.

7 reds in a row is just as likely as the following string -- red, black, red, black, red, black, red. Both have a .5^7 chance of occuring or .7% or 7 out of 1000 times. It is true, although it is hard for people to get their mind around. That is why so many novice gamblers lose loads of money playing roulette.

Brad

 

[StretchL]

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.

OK...

"Uncle"

 

[StretchL]

Again I will disagree. If it were cumulative we'd all have been in big trouble by now and it's not happening.

OK...

Uncle again.

But I'm going to look into this one day...

 

[Susan BAV]

That is exactly correct Susan. If the chance was 3% they would win the lottery the first year, regardless of whether they won the lottery or not it would be a 3% chance the next year. This is the case with discrete events that either occur or don't occur in a finite amount of time.

If your odds of having a stroke are 1% and you have stroke, the next year you still have a 1% chance. If you don't have one, the chance is still 1%.

This can be different for events that are not discrete. For instance, valve deterioration. The deterioration of a tissue valve is a progressive, slow PROCESS. This would be a cumulative process and the odds of failure would increase each year although it is unlikely they would increase in a ADDITIVE fashion like 3% per year. It would be something like 1% year 1, 5% year 2, 25% year 10, etc etc. Once the valve fails it is done, unlike with a stroke where you can have more than one. Probabilities like these cannot be calculated on a per annum basis. They are based strictly on observation from patients.

Bleeding events and blood clots are not progressive processes. The are discrete events that occur and then are done. Not the case with such things as valve deterioration. That is why the probabilites are handled differently.

Brad

Interesting explanation.

So a person aging would be a progressive process, do I have that right? Their bodies would develop and compound various degress of deterioration. Wouldn't the possible Coumadin complications then accelerate and compound to some degree? Perhaps to a measurable degree? What about to a projected degree based on averages or something?

I was also thinking about compounded head injuries among athletes, where each hit does not just cause gradually worse brain injury; but rather, dramatically worse brain injury.

Perhaps I'm having a bit of trouble getting my mind around it?

 

[PJmomrunner]

So, let's say I have 50 years to live on ACT. The chance I'll have an incident in those 50 is 39.5%, but if I live for 30 years with no incident my chance of having one is only 18.2% for my remaining 20 years, right? And that number diminishes for each incident-free year, right? Then we have to figure in Susan's age/deterioration factor--I believe I have read the risks do increase with age because of compliance, fragility, not sure what/if anything else...


0 YEARS = 9.6%

20 YEARS = 18.2%

30 YEARS = 26%

40 YEARS = 33.1%

50 YEARS = 39.5%

 

[Bradley White]

Interesting point Susan. Perhaps it is possible, but I bet the long term use of coumadin does not increase the likelihood of getting a stroke or a bleed. I don't think it is a process that occurs over time, I tend to think that it is an event that happens in a quick time.

However, you make a good point that as one ages perhaps they will be more likely for an adverse event for whatever reason. In that case, you would just change the chance of an event from 1% to 2 or 3% per annum for persons over age 60 or something like that.

However, I think that the amount of time on coumadin would not have any effect on the adverse effect rate. Other variable factors like compliance, lifestyle, diet, and individual body chemistries would influence the event rate. Many of these factors do likely have a correlation with age. Thus, I think it is possible that your rate per annum increases as you age, but it is still not cumulative, just a higer risk per year.

I have heard of something called long term "coumadin poisoning." I know nothing about it, but imagine that it could be an event that should be factored in for people who have been on the drug for a long time. Although I believe that it is very rare....

PJ -- if you have gone thirty years without an event then yes you have only an 18.2% chance to have an event in the next 20 years. Perhaps the per annum event rate is slightly higher, like you suggest, if you are older. In that case, just take the probability for the 2 or 3% event rates over 20 years which would be 33 or 45% respectively.

Brad

 

[Karlynn]

I think this is starting to get very confusing for people who are really trying to decide what the real risk of ACT (Anti-Coagulation Therapy ? Coumadin therapy) entails.

I have been told by very well-respected physicians in the field of cardiology that event risk is not cumulative. Most everything I read says 1-3% per year. And with the inception of home testing, the risk continues to go down. I believe the numbers will reflect that once more time has passed and those of us that home test will have numbers reflected in the statistics. ACT has improved and changed greatly in the last 10 years.

My risk for a stroke or bleeding event is 1-3% per year. The previous year bears no weight. And something that is rarely mentioned is that the bioprosthetic valve carries virtually the same risk of stroke as a properly anticoagulated mechanical valve. So the crunching of these numbers can apply to more than just our ACT members.

The point of installing a mechanical valve is to keep the patient surgery-free for as many years as possible, and hopefully for life. (Obviously this is not always possible.) However, it does not stand to reason that the ACC and the AHA would recommend mechanical valves for younger demographics if the medication they must take to keep the valve functioning properly, in itself presents an increasingly greater risk as each year goes by. This is a valve that is installed with the intent of it lasting for many many years.

I understand how Brad arrived at his numbers and I appreciate his last post explaining his thoughts. I'm afraid people are going to look at the percentages in previous posts and freak out. I know I would if I wasn't informed. It looks like we?re telling people that by year 10 of their mechanical valve they will have experienced anywhere from 9.6 to 26.2% of having had an event in those 10 years. Who would want to consider an option that gave them a 1 in 4 chance of having a stroke or serious bleeding even within 10 years? What doctor would sign up their patient for that kind of risk when the intention is to keep them healthy for much longer than that? Don?t forget ? Tobagotwo reminds us that statistically the risk of reoperations and ACT are basically the same. This also tells me that the medical field doesn?t see the calculations presented in this thread as being impactful.

Yes, the elderly are at a greater risk for events (bleeding) because the vessels become more fragile. But surgical risk also increases as well with the elderly. Maybe Bob has information on that demographic.

 

[Bradley White]

To me this raises an interesting question of what would be considered to be a serious bleeding event. I imagine it depends on the definitions given by those conducting the study...furthermore, do they only record serious bleeds directly related to coumadin usage?

We must remember that the general population with no mechanical valves have strokes and serious bleeds. These are not things solely experienced by people on ACT with mechanical valves. They are both just part of the risk of living. I don't know the rate the general population experiences either of these -- I imagine it would be extremely dependent on health and lifestyle -- but it would be interesting to know the risk for the heart healthy of the world. I can understand how the uninformed might find the numbers I gave high, but to me they seem to be an very acceptable risk, but maybe I am just looking on the sunny side.

Brad

 

[TenPly]

Hey Jared, like most of the wonderful people on here have said, you aren't alone in how you feel. All of us have asked the same kinds of questions at one time or another.

I was 21 when I had my mitral valve and aortic valve replaced (back in 2005). It was an incredible experience in a number of ways. I was in disbelief at first, but as my surgery date drew near, and after lots of research, prayer and of course the support from the folks here, I was ready to face it. And I did. Now I'm 23 and living my life. Only now I live it like there's no tomorrow.

I'm drummer by trade, and I'm always out playing shows and recording. It's a very physical job being a drummer, but it's my passion and I love it. I'm also gonna be skydiving very soon.

I think the best advice is to simply educate yourself and definitely ask as many questions as you need to in order to prepare yourself. I wish you the best!

 

[ALCapshaw2]

I think this is starting to get very confusing for people who are really trying to decide what the real risk of ACT (Anti-Coagulation Therapy – Coumadin therapy) entails.

I have been told by very well-respected physicians in the field of cardiology that event risk is not cumulative. Most everything I read says 1-3% per year. And with the inception of home testing, the risk continues to go down. I believe the numbers will reflect that once more time has passed and those of us that home test will have numbers reflected in the statistics. ACT has improved and changed greatly in the last 10 years.

My risk for a stroke or bleeding event is 1-3% per year. The previous year bears no weight. And something that is rarely mentioned is that the bioprosthetic valve carries virtually the same risk of stroke as a properly anticoagulated mechanical valve. So the crunching of these numbers can apply to more than just our ACT members.

The point of installing a mechanical valve is to keep the patient surgery-free for as many years as possible, and hopefully for life. (Obviously this is not always possible.) However, it does not stand to reason that the ACC and the AHA would recommend mechanical valves for younger demographics if the medication they must take to keep the valve functioning properly, in itself presents an increasingly greater risk as each year goes by. This is a valve that is installed with the intent of it lasting for many many years.

I understand how Brad arrived at his numbers and I appreciate his last post explaining his thoughts. I'm afraid people are going to look at the percentages in previous posts and freak out. I know I would if I wasn't informed. It looks like we’re telling people that by year 10 of their mechanical valve they will have experienced anywhere from 9.6 to 26.2% of having had an event in those 10 years. Who would want to consider an option that gave them a 1 in 4 chance of having a stroke or serious bleeding even within 10 years? What doctor would sign up their patient for that kind of risk when the intention is to keep them healthy for much longer than that? Don’t forget – Tobagotwo reminds us that statistically the risk of reoperations and ACT are basically the same. This also tells me that the medical field doesn’t see the calculations presented in this thread as being impactful.

Yes, the elderly are at a greater risk for events (bleeding) because the vessels become more fragile. But surgical risk also increases as well with the elderly. Maybe Bob has information on that demographic.

WELL SAID Karlynn. This has to be one of your BEST EVER posts, among many.

It needs to be noted that BEFORE the concept of INR was developed, AntiCoagulation Management was CRUDE at best with WIDE variances in results due to variiations in reagent chemistry.

INR testing uses the RATIO between an anti-coagulated patients clotting time and a test sample using the SAME reagents, thus canceling out the effect due to reagent chemistry.

FINGER TEST instruments, and especially Home Test Instruments have GREATLY reduced the discomfort and vein damaging results associated with veinous draws, not to mention the inconvenience and waiting time for results. Bottom Line: Anti-coagulation management by educated professionals and / or trained patients has improved GREATLY over the last decade or so.

Note to ROSS: I think Karlynn's post above and Brad's post listing the REAL Coumadin Risk rates need to go into the Reference Forum and / or be flagged as MUST READS in the Anti-Coagulation Forum.

'AL Capshaw'

 

[ALCapshaw2]

Jared,

If you are still interested in considering the ROSS Procedure, it would behoove you to consult with someone who is an EXPERT in the procedure. Surgeons are very concerned with their results and reputations so it would seem unlikely to me that they would recommend an RP unless they felt confident in a successful outcome.

Note that the Ross Procedure is considered more technically challenging than a Heart Transplant. Only a FEW surgeons even attempt the RP and surgeons who do NOT do RP's are highly unlikely to have a high opinion of them.

You have been given some very interesting opinions about the risks of an RP for given conditions. I suggest you print them out, write a list of YOUR questions, and contact some of the known RP surgeons offices. You may even be able to get a tentative idea over the telephone. Sending your test results would of course allow for a more detailed assessment.

Also note that StretchL spent several HOURS interviewing Dr. Stelzer in NY over a holiday weekend before deciding to proceed with the RP performed by Dr. Stelzer. I also urge you to review StretchL posts detailing his research process and results.

'AL Capshaw'

 

[Karlynn]

To me this raises an interesting question of what would be considered to be a serious bleeding event. I imagine it depends on the definitions given by those conducting the study...furthermore, do they only record serious bleeds directly related to coumadin usage?

Al Lodwick, our ACT expert and owner, operator of his own Coumadin clinic and www.warfarinfo.com, has described being able to lose 2 pints of blood before getting into trouble. Spill a quart of milk on your kitchen floor and it will give you an idea of what that looks like. This is what many of us feel describes a bleeding event. But it's not official!

Yes,"bleeding event" is a very subjective term and it's always a guess as to how each study applies it.

It's underlying medical causes that really pose the most concern. Stomach or intestinal ulcers are things that can irritate bleeding. People aren't just going to start bleeding spontaneously without there being a reason for the bleed. There are actually instances where cancer has been diagnosed earlier because it caused an area in the body (bladder for example) to bleed earlier than would be expected in the non-ACT person. This isn't to say ACT should be used as an early detection for cancer, it's just a weird benefit that some people experienced.

The vast majority of us on ACT do not place bleeding as our biggest concern. Some doctors obscess on it. Maybe when I'm 75 or older it will be a greater concern.

(Thanks Al! Some days my brain works better than others. )

 

[alex c.]

Wow Jared, I hope we aren't confusing you here. Get a couple of opinions from the surgeons you are considering for your operation and see what they think. I will have to say though, the members here are pretty damn smart and way up to date on what's going on in the heart surgery world. I was told by my surgeon I couldn't get On-x valves because they only made it for the mitral and I needed mitral & aortic. Well I got them both replaced with On-x thanks to the info here. I was the first patient implanted with On-x by my surgeon and so far it looks like he did a great job. I am a very active person too. Weightlifting (we'll see how I manage now) basketball, football, track, cycling and therefore chose mechanical. The On-x is fantastic for the Coumadin, which has not been as bad as I thought. I take a 5 mg pill each day and have my inr level checked every 2-3 weeks. I really wish you luck with this and ask as many questions as you want. We are here for you! Oh! btw, my lifestyle hasn't changed and I will have 2 or 3 beers when I go out with friends.

 

[boomersooner]

Well, I also argued with my surgeon when he told me that about the blood thinner and told him that it statistically did not make sense. Now that I have gotten every ones opinion on it it makes me think that the surgeon I was going to use is a total idiot. He was voted the best heart surgeon in Tulsa so now I am thinking of looking at other hospitals. He was also very pushy and I just did not feel comfortable around him.

 

[geebee]

Well, I also argued with my surgeon when he told me that about the blood thinner and told him that it statistically did not make sense. Now that I have gotten every ones opinion on it it makes me think that the surgeon I was going to use is a total idiot. He was voted the best heart surgeon in Tulsa so now I am thinking of looking at other hospitals. He was also very pushy and I just did not feel comfortable around him.

Just forget about his talk on the coumadin issue. The fact that you even mention not being comfortable around him indicates that he is not the person to trust with your heart.

I know it is a lot of work but you really should look for another.

 

[Susan BAV]

Hi Boomersooner -

You should probably go with your gut instinct regarding your choice of surgeon, although I have noticed that some of the best surgeons (of other types at least) sometimes have poor bedside manners.

That said, all three of the highly recommended heart surgeons that we consulted seemed approachable, yet confident, and also seemed to have a compassionate air.

A second opinion, or even a third, is probably a good idea.

 

[Bradley White]

Jared,

Definitely don't go with the surgeon if you don't feel comfortable around him. Our instincts are usually correct. You need to be at ease at the time of your surgery. Good luck finding a more compatible surgeon.

Brad

 

[LUVMyBirman]

Welcome! Sounds like you are on the right track.

Adding my two cents. Your risks increase considerably with each surgery. Unfortunately, your third can be "end all". So much scar tissue to contend with. Each time they go in....your heart takes assault. My reason at age 30 to take a mechanical. My card stated my valve should last 30 years. Simple math. Age 60. Hopefully that will be the last. Yes, there is a small risk with Coumadin. As there are risks that even with a tissue valve you will end up on Coumadin regardless at one time or another. Just because you go tissue...does not mean you are free from the risk of stroke. People have them every day without the complication of a valve.

I enjoy life fully. Very active and particpate in protected contact sports. Risky yes...but I am not half dead because of the Coumadin. I also noted a comment about enjoying wine. Ummmm, yes! Do enjoy my wine and yearly trips to Napa. Coumadin has not stopped me yet! 8 years in March and counting!

Very personal choice. It's a difficult one. And it should be yours.
Happy you found us. Please continue to stop by and keep us posted!
Take care