29yrs - valve choice and aortic aneurysm ( difficult decision due to way of life )

[Superman]

What a fun thread! Love a good debate.

JulienDu,

First off - welcome to the waiting room. I read most of the posts in the thread before responding.

Regarding your specific situation - I would likely be seeking a second opinion (and maybe 3rd). A couple of reasons for that. One of which is that you state you have a fairly normal functioning valve right now. Of all the options - keeping your native valve is probably the best one if the other component (aneurysm) of your situation didn't exist. By "definition", your aneurysm isn't technically in the operational window yet. Did I read correctly that you haven't had an echo or other test in some time? Have you had a CT scan or MRI to verify the measurement (might have missed that)?

Without regular checkups - it's unfortunate that you don't really have a baseline to measure your rate of change on the aneurysm. My surgeon indicated that he was following patients for years in the 4 - 5 cm range with little to no change. That being said - mine went from 2.6 cm to 3.2 cm to 4.9 cm in three successive annual appointments. I didn't want to wait 6 months to a year for a follow up to see where it would end up. Knowing a baseline would be helpful for this. Tough spot to be in. I don't envy you. Dissecting in the high 4's is not unheard of.

I have had two OHS's. Went mechanical both times. I don't regret that choice - but regret is often outcome driven. Mechanical did not prevent re-op because of my aneurysm. But it did get me from my late teens to my late 30's. I stuck with mechanical (one piece St. Jude conduit graft) for my second go round. I've been on warfarin for over 25 years now. It has had an impact on my life as it is something that needs to be managed and planned around.

Things impacted:
- Discovered cranberry juice just doesn't work for me (drives INR way up), and others have said grapefruit juice. Had an INR over 8 and detected this due to blood in urine. This was before home management and weekly testing. Likely would be picked up much earlier today. Other then that - dietary consistency is a good thing, but not a life or death thing. As long as you're testing regularly, dietary impacts can be managed through dosing easily enough.
- Invasive procedures require some planning around INR, and many Dr's are more afraid of warfarin than we are. I had my gallbladder removed and had to talk to quite a few Dr's to get to what I felt was appropriate warfarin management given the nature of the procedure. Not everyone is as well informed as the posters on here, and may not know when to push back. It wasn't even that what they were doing was "wrong" per se. It's just that I was being stubborn and refused to sign to accept frozen plasma as part of the procedure. If it's life or death, fine - but I don't want it if it can be avoided. I know they test for blood born illnesses, but they can only test for what they know about. I don't want to be the patient that has a new blood born illness named after me because I accepted a bad batch that I didn't need.
- Finally, I had a 5th child because of warfarin. Pretty expensive side effect, but well worth it so far (4 years on). My INR did not get down to a range that the Dr (or I in this case) was comfortable performing the procedure - so we rescheduled a couple months down the road. Oops.

Other then those - it's been take med / test regularly / rinse / repeat. I've only home monitored for the past three or four years. Prior to, having a convenient lab around was fairly important.

My concern in your position would be access to a pharmacy if you have dosing volatility. You can only split pills so many ways, and while I like to dose weekly vs. daily - I'm not a fan of big adjustments to daily doses (2.5 and 5's alternating vs 4 mg daily for example). Pellicle appears to plan for longer periods with limited pharmacy access - so I'm sure it can be done.

I'll steer clear of the Ross debate.

Good luck in your decision. Typically we say at this point that regardless of what you choose - it is better than what you have now. But I'm not certain of that in your case.

Regards,

Superman

 

[Superman]

If they do have to take Warfarin after the first 3 months it is not due to the valve, it is due to a-fib or stroke risk which they would have to take anyways.

If I understand correctly, it can be the surgery itself that increases the incidence of a-fib due in part to the impact on the "wiring" of the heart because of cutting into it. So I don't know that it is accurate to say that they would have had to take warfarin anyway (assuming you mean without surgery). Stroke risk is driven in part by a-fib, no?

Probably a nit-pick, and as always, I reserve the right to be wrong.

And I keep hearing about all these people that consume all the vitamin k that they want. They must not be consuming very much since vitamin k is the antidote for Warfarin. Or they are taking twice as much Warfarin to counter the antidote.

I know that in 1990 when I first got my mechanical valve I was told to avoid 'leafy greens', as they put it. This was because vitamin K was perceived as bad for warfarin management. I think the reason people emphasize that they can "consume all they want" now is because we've learned that it is something that can be managed as part of a regular dietary intake. I suppose in theory, one could consume a bowl of spinach daily and dose accordingly. More reasonably - I take it to mean that I don't have to opt for soup before dinner if I want the dinner salad, and green bean casserole with my holiday dinner is just fine. I'm testing every Wednesday as it is and will be able to adjust for any impact.

 

[W. Carter]

Thanks Superman, I forgot to add Bridging Lovenox to the cons of Warfarin therapy. I have had to bridge 10 days for a Inguinal Hernia surgery (5 days prior, and 5 days post) and I have a Colonoscopy coming up Feb. 3 where I will have to bridge 10 days. It is no fun and causes a bunch of bruising. Just another downside to Warfarin therapy.

Edit to add.
I agree a little vitamin k veggies a week on a consistant basis is alright. Some say I eat all I want, I used to make a big pot of turnip greens prior to Warfarin and ate all I could handle 3 or 4 days in a row. If I did that now my inr would be 1.0.

 

[dick0236]

.........More reasonably - I take it to mean that I don't have to opt for soup before dinner if I want the dinner salad, and green bean casserole with my holiday dinner is just fine. I'm testing every Wednesday as it is and will be able to adjust for any impact.

Very well put.

 

[dick0236]

Thanks Superman, I forgot to add Bridging Lovenox to the cons of Warfarin therapy. I have had to bridge 10 days for a Inguinal Hernia surgery (5 days prior, and 5 days post) and I have a Colonoscopy coming up Feb. 3 where I will have to bridge 10 days. It is no fun and causes a bunch of bruising. Just another downside to Warfarin therapy.

I agree that Bridging w/Lovenox seems to be a pain in the a-- and fortunately I have never had to do it.

I was kinda old when colonoscopies became routine and my docs never pressed me to get one......and I haven't. There are a number of posts on this forum where doctors do not require bridging prior to a colonoscopy. It seems that bridging may be primarily for the convenience of the doctor.

 

[W. Carter]

I agree that Bridging w/Lovenox seems to be a pain in the a-- and fortunately I have never had to do it.

I was kinda old when colonoscopies became routine and my docs never pressed me to get one......and I haven't. There are a number of posts on this forum where doctors do not require bridging prior to a colonoscopy. It seems that bridging may be primarily for the convenience of the doctor.

I'm like you when it comes to Warfarin I would rather err on the safe side, so i'm glad that the V.A. Cardiology and Pro-Time clinics are adamant about safe inr stability.

 

[Superman]

I agree that Bridging w/Lovenox seems to be a pain in the a-- / ...when colonoscopies became routine.

I love unintentional humor.

 

[JulienDu]

@ Superman

Thanks for sharing your experience. I was surprised to see that you had a Mechanical Valve when you were a teenager, I thought they would only put a tissue valve to people that are still growing up. But I guess it was not an issue for you.

As for my aneurysm, it is unfortunate that I do not have a history, however, people with BAV are more at risk with aneurysm as the growth is faster than the normal population, and the wall are more fragile. At 4.9, as you said, dissection are not impossible and considering my very rough way of life ( lots of heavy lifting at work, lots of intense physical effort), I do not want to take the risk so I think it is wise to operate now. As for the valve, I also agree that keeping it would be the best although I will be required another operation and will also have to live trough the slow declining of it. Hard decision.

@ W. Carter

It is great to be aware of the problem that you had at the beginning. It reminds me that the risk is here although most of you guys seems to be manage your INR pretty well. As far as I can see, the hardest part of AC therapy is the first months. I appreciate that you insist on the negative effect despite the fact that you have a Mechanikal valve yourself

However, after reading a lot of research ( including people comment here ), I am not sure that Tissue Valve is less problematic as many research have proven that :

-Mortality is higher with a tissue than Mechanical
-Thrombosis happens as often with tissue than with Mecha
-You have to live through the decline of your tissue valve, with the risk of damaging the Heart

Only the risk of bleeding has proven to be higher with the Mechanikal ( although most of the research was done before the Onyx)

dick0236

I am always impressed by your story and how you made it through alright despite the fact that it was really rough for you back in the eighties.

 

[pellicle]

Hi

... And I keep hearing about all these people that consume all the vitamin k that they want. They must not be consuming very much since vitamin k is the antidote for Warfarin. Or they are taking twice as much Warfarin to counter the antidote.

well it depends ... if you look at Spinach which is the highest levels of Vitamin K in a food you'll find that its not sufficient to really impact INR if eaten "normally.

this link (US Food and Drug) shows that 100g (that's 3.5Oz which of course means nothing to me) of fresh unprepared Spinach has about 373 micro grams of Vitamin K

this link (American Heart Association) suggests that guidelines for reducing INR are something like this:

For most warfarin-treated patients who are not bleeding and whose INR is >4.0, oral vitamin K (in doses between 1 and 2.5 mg) will lower the INR to between 1.8 and 4.0 within 24 hours

and for patients about to have a surgery (to get their INR down low) they write this:

For patients whose INR was 1.4 to 1.9 the day before surgery, 1 mg of oral vitamin K was given. Thirty-nine (90.7%) of the 43 individuals in this cohort had an INR <1.5 the next day, and there was no difficulty reestablishing anticoagulation with warfarin after the procedure

So to see a clinically significant drop in INR you need at least 1mg of Vitamin K

Its a thousand micro grams to a milligram (mg) which means that to get your INR down to between 1.8 and 4 from over 4 you'll need 300g of fresh spinach or 13Oz .... in one sitting. Simmilarly (from above) if your INR was quite low already (1.4 ~ 1.9) then the same amount will only get you down to a bit under 1.5

I think its worth mentioning lettuce - it has about 126 micrograms / 100g of Vit K so you'll need 1Kg (about 2.2 pounds) of Lettuce in a sitting.

I'm often accused of over thinking things, but I always believe that if you going to do it, then do it right ... so either over think it like mad (go hard or go home right?) or just don't worry and measure weekly and learn that its all good and you can eat your salad and have little to worry about.

 

[W. Carter]

Pellicle,
When I talk about high vitamin k veggies I am referring to collard, mustard, and turnip greens not spinach. I am from the south so when we eat greens, we will get a big bowl of them. That will be the main meal except for pork that is cooked in the pot with the greens and cornbread. Of course those days are over. Its hard enough to get your inr stable without trying to sabotage it. As far as boiled cabbage or cole slaw, iceberg lettuce, green beans, broccoli, and foods like that, they are very low in vitamin k and I eat them every day. so naturally when guys say they eat all the HIGH vitamin k veggies they can handle, I think b.s. because there is no way to stabilize Warfarin that way.

I have done my fair share of study on Warfarin the last year and I know it is a very dangerous drug even when it is in the so-called threraputical range. I also know that it kills more people with mechanical valves than the vales themselves, mostly by renal failure and hemorrhage.

Your turn, argue on........

http://nutritiondata.self.com/foods-...0000000-1.html

 

[pellicle]

... so naturally when guys say they eat all the HIGH vitamin k veggies they can handle, I think b.s. because there is no way to stabilize Warfarin that way.
...
I have done my fair share of study on Warfarin the last year and I know it is a very dangerous drug even when it is in the so-called threraputical range. I also know that it kills more people with mechanical valves than the vales themselves, mostly by renal failure and hemorrhage.

I didn't say eat all the high vit K you can handle, just that you don't need to worry about it when you eat sensibly. But I see that there is no point in trying to assist an expert ... I mean its not like any of "us guys" actually have any experience in this or manage ourselves

Best Wishes I will not trouble you again

 

[dick0236]

Pellicle,
When I talk about high vitamin k veggies I am referring to collard, mustard, and turnip greens not spinach. I am from the south so when we eat greens, we will get a big bowl of them. That will be the main meal except for pork that is cooked in the pot with the greens and cornbread. Of course those days are over. Its hard enough to get your inr stable without trying to sabotage it. As far as cabbage boiled or cole slaw, lettuce, green beans, broccoli, and foods like that, they are very low in vitamin k and I eat them every day. so naturally when guys say they eat all the HIGH vitamin k veggies they can handle, I think b.s. because there is no way to stabilize Warfarin that way.

Your turn, argue on........

Aw...c'mon, let me in too. I'm also from the south, but I am a northern southerner(the southern bank of the Ohio River). Not crazy 'bout collard, mustard and turnip greens but I can eat my weight in kale, hocks and cornbread. When we talk about vit K foods we are answering questions from new folks who have been scared silly about consuming ANY vit K........even the lower vit K foods you referred to. It's all about balance. I seldom "eat all the vit K I can handle".....but I always "eat all the vit K I want" at a sitting........and self-test once per week and never seem to have INR problems due to diet.

 

[Duffey]

JulienDu, I've read this thread with interest and the exchange of information has been informative. However your assertion in your last reply that one has to live through the decline of a tissue valve with possible resultant heart damage is not one that I have seen proof of. On the contrary, what I've read is that there is frequently no indication that a tissue valve is failing in terms of symptoms and the necessity of replacement comes to light with the periodic echo we undergo. I have had an Edwards perimount since 2005 and asked my cardiologist if there were symptoms, such as those I experienced the first time around, that I should look for. She said not really which is why they do annual echos after the 10 year replacement mark. Good luck going forward.

 

[W. Carter]

pellicle, Thank you.. Do as you please.

dick0236. When you live in Texas anybody north of the Red River is considered a Yankee.

 

[MethodAir]

Thanks for the feedback MethodAir

No problem, man.

-What kind of impact activity do you engage in ?

Drumming (drum set). I like to hit hard. No issues.

-What INR are you aiming at with your Onyx Valve ?

I shoot for around 2. But I'm ok with a range (around 1.8 to 2.8).

-How old are you ?

44. Was 43 at the time of surgery.

 

[MethodAir]

As far as tissue valves go...
They are proven to be less problematic due to not having to take Warfarin, It is a proven fact that Warfarin is the main factor in motality rate among people with mechanical valves. Most causes are renal failure and brain hemorrhage.
The problem lies with the tissue valve is re-operation. If they do have to take Warfarin after the first 3 months it is not due to the valve, it is due to a-fib or stroke risk which they would have to take anyways.

Tissue valves become MORE problematic because of their short 'lifespan', and relatively rapid deterioration. If you're under 30 and choose tissue, the odds of acquiring AFib are increased.

Warfarin is kind of like the oil which keeps the machine running. Mismanagement is the main risk factor (in the same way insulin is for diabetics).

 

[MethodAir]

JulienDu, your assertion in your last reply that one has to live through the decline of a tissue valve with possible resultant heart damage is not one that I have seen proof of. On the contrary, what I've read is that there is frequently no indication that a tissue valve is failing in terms of symptoms and the necessity of replacement comes to light with the periodic echo we undergo. I

I've read several reports about severly stenotic and/or regurgitant tissue valves at the end of their life cycle (sometimes less than 5 years), causing left ventricular dilation and/or hypertrophy.

 

[MethodAir]

Aw...c'mon, let me in too. I'm also from the south, but I am a northern southerner(the southern bank of the Ohio River). Not crazy 'bout collard, mustard and turnip greens but I can eat my weight in kale, hocks and cornbread. When we talk about vit K foods we are answering questions from new folks who have been scared silly about consuming ANY vit K........even the lower vit K foods you referred to. It's all about balance. I seldom "eat all the vit K I can handle".....but I always "eat all the vit K I want" at a sitting........and self-test once per week and never seem to have INR problems due to diet.

I don't have issues with greens and vitamin k. I do take large amounts of fish oil (Carlsons) and for me, that does affect Warfarin metabolism (lowering my INR).

 

[almost_hectic]

Pellicle,

I have done my fair share of study on Warfarin the last year and I know it is a very dangerous drug even when it is in the so-called threraputical range. I also know that it kills more people with mechanical valves than the vales themselves, mostly by renal failure and hemorrhage.

Your turn, argue on........

http://nutritiondata.self.com/foods-...0000000-1.html

Very dangerous drug? Where does you research take you too? Seriously just curious. It's only dangerous for someone who's not well managed on it. For many of us it's very easy to manage. Especially if you remain on a consistent diet, then your INR stays pretty stable and you just have to remember to take your pills. I'll opt for that any time over choosing an option where I'll knowingly have to have another open heart surgery some day, maybe more than once even, no thanks, not me. Hand me the pills!

 

[Superman]

I don't know that it's completely fair to dismiss concerns about Warfarin. Well managed, and it's pretty safe. But like anything - all it takes is a few mistakes and it can turn. I went too long without testing once, and ended up with an INR over 8 (as previously mentioned). Maybe I'm just lucky no significant bleeding events occurred during this time (but I did have blood in my urine). This was in the days before home testing. I don't know many of us long timers who can honestly say they've never missed a dose, or gone through too long a period without testing. I also learned to keep my warfarin under better guard when one of my kids got into it. They had to move a chair, climb onto a counter, get into an upper cabinet, and remove a child safety cap. I don't know what drew them to it other than the pretty blue color and seeing that Daddy likes it, but we ended up in the hospital getting their INR tested and getting them a vitamin K shot. I imagine most of the negative outcomes W. Carter is referring to are driven by poor management. But it's naïve to say that poor management can't or won't happen to any of us.

Even with that - we all have stories of our surgeries and recoveries that would make anyone want to avoid another one if at all possible. Pancreatitis, fluid in the chest cavity, endocarditis, we've had posters that we've lost within months of their surgeries, etc. Regardless of how frequently it's done successfully, it's still an extremely invasive procedure and very taxing physically.

There really isn't a "good" option here. It's better not to have to go through this at all, for anyone. But since we must, we pick the most palatable option that we can live with. (man - I'm a downer this morning)

Thanks for the response, JulienDu. I appreciate your circumstances. I know the exact feeling of finding out you have this balloon in your chest and have no idea if or when it will pop. With no growth history - it puts you in an even tougher spot. If I were in your shoes - I'd opt to get it fixed as soon as possible too. What do I mean if? I was in your situation, and I did get it fixed as soon as possible! What I didn't have was a relatively "good" valve that would likely go bad in the future, but not knowing when. Makes it even harder. As far as being a teenager, I turned 18 two days after my first surgery, and was already 6' 4". They waited as long as they felt was safe to put in an "adult" sized valve.

Whatever your decision - I wish your a speedy and uneventful recovery.