Warfarin, stomach, and questions

[Catie]

In an effort to clarify. I'm not raising a question here.

Throughout the 40+ years I've been monitoring the BAV with cardiologists, I have been fully persuaded when the day came, that I would have a mechanical valve to replace my stenotic one. I have personally always been in the camp of wanting one surgery only and to go mechanical. Now the aneurysm has caused the need for surgery, which must include replacing the valve.

In 2010-11 I went through hellacious months of suffering with my stomach and since then almost every medication I have tried, including OTC, burns intolerably. For example, if I ever have to take a course of antibiotic again, it will probably have to be IV infused. At this time, my ability to take Warfarin is in question. This is a primary question that will take time to get answered experientially. I have two appointments in July and I hope one of these physicians will help me get an answer. If I can't tolerate warfarin, mechanical valves are a no-go. I can't intelligently make a decision without that information.

This is secondary, but does concern me: my mother's passing in late 2014 from a massive coumadin-induced internal hemorrhage. Candidly, her 30 days suffering in ICU and passing -- that has shaken me.

 

[pellicle]

Catie

In an effort to clarify. I'm not raising a question here.

Throughout the 40+ years I've been monitoring the BAV with cardiologists, I have been fully persuaded when the day came, that I would have a mechanical valve to replace my stenotic one. I have personally always been in the camp of wanting one surgery only and to go mechanical. Now the aneurysm has caused the need for surgery, which must include replacing the valve.

this has indeed clarified your questioning approach and I think that there are actually significant questions in your mind even if you perhaps aren't aware of them.

You would seem to be at about 50 (given an inference from the above and from your bio. This is actually an important point in consideration, because (as you may well know) in the intervening 40 years some things have changed on both sides of the fence. I suspect that a few factors have changed underneath you that you should in good conscience give fair consideration.

A unifying premise to all your haystack of questions is clearly "should I have a tissue valve or a mechanical". All the other questions are actually related to side effects of that choice.

To me given your age your right on the cusp of a mechanical valve being of marginal benefit. Its entirely likely that a tissue valve will do well. Were you 10 years younger and were this 10 years ago I would not say that. Indeed probably some people out there reading my words will have just dropped their coffee cup or some such (however such reactions are a misreading of who I am and what I believe in). I would say that the developments I am seeing in TAVI and valve in valve possibilities would (with todays technology) see a tissue valve life extended by catheter by another 5 to 7 years. I understand that valve in valve can be done twice.

These things bear consideration

As you are probably well aware no valve is a certainty that you will not need a reoperation. All is down to likelihoods. However as I see it you do have genuine issues to contend with, and as I've discussed above I encourage you strongly to resolve that warfarin one in your own mind for that is the keystone for this decision).

However I'd also counsel you that if you are nearly 50 (or over it) then a tissue prosthetic will also enable you to consider a valve in valve if you find that the tissue prosthetic has calcified.

There may be more factors to which I'm not privy here (such as you having a metabolism which has been clearly shown to render a tissue valve calcified in short order) but I do believe that this question deserves a proper discussion. An adult discussion and not a 'screaming match' of the various passions of personal choice others have made for themselves, but a mature discussion to enable them to help you.

I am certainly up for that, and I believe that it would be beneficial to others (who lurk here) to have that thread in a single place, rather than higgledy piggledy all over the site in a question here and a response there. Ultimately (as you know) I've got a mechanical and I've had a number of surgeries and I will be the last person to say that you should take redo operations lightly. You may have read of my traumas with infections from my last 'redo'

... now, let me go back and answer better the question you asked over here

 

[Agian]

Duplicate

 

[Catie]

Again, Pellicle, a great big thank you for all you have shared with me here and elsewhere on the board. Eventually, I'll come to know the culture of the forum. In the past, I've been part of online groups where the preferred MO was for members to keep starting new threads. Perhaps that explains my higgledy tendencies.

Sure. Of course, the question of what kind of valve looms large. No question that that's the case.

I see a local surgeon & new cardiologist next week and maybe I can convince one of them to give me a brief trial on warfarin to see how my stomach does.

The Cleveland Clinic cardiothoracic surgeon who did my remote consult suggested if I go up there, I should have a GI consult before surgery to see if someone can figure out what's going on. I had a consult locally a year ago with one of the supposedly "top" GI docs who's been in practice 35 years. Upper endoscopy and two tests later, he had zero answers for how to deal with my inability to take meds.

I will be 58 at the end of the year. If I choose tissue, I'd want to reserve TAVR as last resort, since I've seen a study that those valves start to decline structurally at around 8 yrs. (Maybe that's a faulty study or that info is flawed. I feel like my ignorance shines here.) I would hope I'd be healthy enough at the time the first bio valve failed, for another open procedure. But it does seem TAVR has changed the landscape.

If I understand correctly, with a bio valve, most people take low-dose aspirin daily. That's concerning to me, since Ibuprophen launched earlier years of stomach problems and I haven't touched an NSAID in at least two decades. . With a history of gastric erosions, esophagitis, etc., I would think I should steer clear of aspirin for the sake of my stomach lining.

The added complexity with my stomach issues makes an already stressful matter more stressful.

 

[Catie]

I'm still trying to solve this puzzle in my mind and I'm stuck on an issue I raised in my last post. If I can't take aspirin, does that take away the option of a tissue valve?

 

[pellicle]

I'm still trying to solve this puzzle in my mind and I'm stuck on an issue I raised in my last post. If I can't take aspirin, does that take away the option of a tissue valve?

no it does not ... aspirin is just a "preventative" and if you look around you'll find that quite a many don't. I never did after my homograft and even the literature is divided as to if it does anything.

Then there is the point that its "suggested" for mechanical valves too ... so you may only need it (and I was on it with my mechanical) for a few months post surgery

secondly its a TINY TINY dose .. its usually 70mg ... a more "normal" dose of aspirin is something like 700mg or even 2000mg

 

[Paleowoman]

I'm still trying to solve this puzzle in my mind and I'm stuck on an issue I raised in my last post. If I can't take aspirin, does that take away the option of a tissue valve?

I can't take aspirin and it was never prescribed to me. It was never even suggested to me (tissue valver) !

 

[Catie]

Thanks, Pellicle and Paleogirl.

Maybe it's different in the UK and Australia. I have searched and searched online and all US sites I've found indicate current guidelines to be the 81 mg/day of aspirin w/ bio valves. I won't subject you guys to the complicated ordeals I've been through with my stomach, but it's been truly hellacious, and this is concerning. As little as 10 mg of aspirin/day can damage gastric mucosa. Aspirin's effects are systemic, so it makes no difference whether it's enteric coated, buffered or even topical. The last gastro doctor had zero suggestions for the intolerance of my stomach to meds. He had no idea what's wrong with me.

 

[neil]

ho catie, you say you seen a study that says a tissue can decline after 8 yrs? the thing is you can find another study which says different that is the trouble with studies and stats they do vary, ive had mine 8 yrs and its still going strong, nobody knows how long any valve will last but data is usefull in gaining some insite, good luck and keep us informed catie

 

[Paleowoman]

Hi Catie - I quite believe there may be different prescribing protocols after bioprosthetic valve replacement in the US from the UK, there certainly are diffferent indicators for surgery in the US than there are in Europe BUT whatever the general prescribing protocols in the US, you should be able to find a good cardiac surgeon who prescribes for YOU and not just to the usual protocols. There will be many patients who are unable to take this or that medication, and aspirin is certainly a medication contraindicated in patients with history of stomach ulcer so I cannot believe you will be prescribed something that is going to cause you harm. Obviously do let any cardiac surgeon know the problems you have with various meds - steer clear of that surgeon if they say they're going to ignore what you say !

 

[pellicle]

Catie

I find your thinking on this too rigid ... you say:

..all US sites I've found indicate current guidelines to be the 81 mg/day of aspirin w/ bio valves.

the key word is GUIDELINE ... it does not say "unyeilding laws of the universe" ... we are not talking about gravity or thermodynamics, just surgical guidelines.

Its a guideline ... not EVERYTHING fits within that guideline.

Now if you are uncommonly sensitive to aspirin that it would cause you great distress THERE ARE OTHER WAYS and the same goes for warfarin too.

Yes its a GUIDELINE but its not the only way.

As Paleogirl has said DO LET YOUR SURGEON KNOW about these issues. If they can't comprehend it, change surgeon!

Remember that we are talking living or dying if you don't have any valve surgery, if you choose a tissue valve THERE IS NO REASON YOU MUST HAVE ASPIRIN and the guidelines of AC therapy for the first 3 months are exactly that. Guidelines for AC therapy. Warfarin is not the only AC therapy on the planetand there are other choices, such as injected heparins which will not effect your stomach lining.

I URGE YOU IN THE STRONGEST POSSIBLE TERMS TO GET OUT AND SEE A Dr AND COMMENCE A TRIAL OF WARFARIN TO TEST IF IT CAUSES HARM TO YOU,

Without that all else is just anxious agitation ... data data data ... gather the data, and leave the rest of the conjecture alone. Formulate a plan and TEST IT

PS: the caps and bold are because I don't think you've been reading my posts, looking at them and seeing words yes, but understanding the meanings no. Go back to my first reply to you and I put forward tests on drugs. Every day you waste agitating about this or that and not actually testing to obtain FACTS is a day wasted.

 

[Catie]

I appreciate you all. You guys are solid.

Neil, I must have miscommunicated. What I was trying to say was about TAVR valves and some changes noted with them, not failure. I shouldn't have brought that up.

Paleogirl, thank you for your observations and your common-sense expectation that the physicians will be flexible.

Ah, Pellicle. so guidelines aren't imutable? And there will be alternatives? Imagine that... : )

In my first post, and reiterated in a later one, I said I had to ask for a trial run on warfarin, and this I will do. It has taken weeks for these appointments to come to fruition--I scheduled promptly but have had to wait for the hands of time--the calendar!--to move forward. I thought I'd mentioned that I'd set up those appointments. Anyhoo, takes awhile to get in with surgeons and cardiologists of good repute in this metro area.

I'll see one of each this week and allllll the stomach issues/concerns and a plethora of questions will be duly explored. One might hope one of these guys will know a stellar gastroenterologist. The last one (did a full work up on me a year ago) couldn't help with the ridiculous sensitivity to meds. Not sure if anyone can, but it's worth taking another stab at it.

As you observed a few posts back, my previous cardiologist made a moronic comment about my wishing to consult with a surgeon, so after hounding his staff for days to get the recent echo,, I've left his "care."

Unfortunately I've encountered rigidity and many worse things with past medical professionals. Sorry that my lack of trust is on display.

And you are certainly right, there are some people who take heparin long term.

Hoping for the best from the upcoming consultations.

 

[pellicle]

Ah, Pellicle. so guidelines aren't imutable? And there will be alternatives? Imagine that... : )

sorry if I misunderstood, but your writing implied that "you had to take X Y Z because it was a guideline" ... I wanted to make it clear that you don't have to do anything as its all really "customisable" if you get involved. There is always another approach and you can always seek another surgeon.

Get a suit that fits I say

Myself I'd go to a GP and get a prescription for warfarin for DVT or something and start with 1mg daily and test your own INR. Easy...

 

[Catie]

Pellicle, you understood perfectly that I was viewing the recommendations/guidelines as law and was anxious. With my reply, I was trying respond playfully and lighten the intensity. : )

What you may not have understood was that many weeks ago I determined I'll need to try warfarin and that I've been waiting on appointments to be able to make that request. As for my GP, he takes even longer to see. I'm on his schedule for 8/11.

 

[pellicle]

...With my reply, I was trying respond playfully and lighten the intensity. : )

that's good , levity is always good and laughter is the best medicine

What you may not have understood was that many weeks ago I determined I'll need to try warfarin and that I've been waiting on appointments to be able to make that request. As for my GP, he takes even longer to see. I'm on his schedule for 8/11.

so you are unable to visit any doctor who may be able to listen and write you a script? Have no friends on warfarin who could get you a bit?

I mean people buy heroin and crack every day but you can't get a few mg of warfarin?

 

[Paleowoman]

Crickey - that was a joke wasn't it pellicle ?