Newbie here

[Martin1962]

Hi, just out of hospital in the UK following mitral valve replacement with a mechanical one 2.5 weeks ago. Lengthy stay due to developing heart block and having to have a pacemaker fitted as well. Disappointed not to have had a valve repair as originally planned since I was considered to be an excellent candidate. The surgeon tried unsuccessfully to effect a repair but ended up taking it out and replacing with a mechanical one.

I agonised for months before surgery on the decision whether to opt for a tissue or mechanical valve if repair wasn't viable, and really didn't know what to do. In the end I went for mechanical based mainly on my age (I'm 59), most likely favourable long term prognosis, and not wanting further procedures or replacements in my old age! However I keep having doubts now on whether I made the right decision especially as I start getting into the full implications of a lifetime on warfarin and INR testing (the prospect of possibly severely curtailing my moderate alcohol intake I find particularly depressing - although I'm getting conflicting advice on this!).

Of course there's no point now in worrying over it, it's done and I have to get on and the make the best of it.

 

[vitdoc]

As one of many on this site who has been on warfarin for many years (39) it is not that big a deal. With home testing it is easy to follow the INR without having to get blood tests and go into a clinic. As far as what you can eat or drink most of us eat or drink pretty much normally. If you markedly change your eating habits then a careful evaluation of your INR might be needed. But normal alcohol consumption is not a big deal at all. Usually if there is a moderate fluctuation where your INR is at the end of the range or beyond the range an adjustment is made in the warfarin dose for a day or two.
So get your home testing equipment and continue to eat or drink as you have. Clearly if someone is an alcoholic then there can be liver damage and a prolonged INR just from the liver disease, then being on warfarin might be an issue.
I don't think there is a consensus on the frequency of testing. Some believe once a week others every two weeks and others something else. Personally I tend to be pretty stable so I probably fall into a two to four week or so pattern. When I was younger and there was no home testing I was very lax on checking my INR. I hated getting stuck and I probably went 6 months between testing. In retrospect that was not too smart but as a young person I felt invincible.
Good luck.

 

[Chuck C]

Welcome to the forum Martin!

I would not second guess your decision. There is no perfect valve choice, both have pros and cons, but at 59, you are certainly in that gray area where either valve is a reasonable choice. As Vitdoc mentioned, warfarin is not that big of a deal for most people. I've been on it almost 11 months now and live a very active life. I run up and and down mountain trails and will be doing Brazilian Jiu Jitsu tonight, all on warfarin, so I have only had to make minor changes to my life in terms of activity- no more hard boxing.

the prospect of possibly severely curtailing my moderate alcohol intake I find particularly depressing

There are several threads on this forum on this very topic and I hope that you take the time to read them. The vast majority of people have no problems with drinking moderate alcohol. I drink moderately and occasionally I drink a lot on days when I watch the UFC. My INR moves very little- does not move at all when I drink moderately and it only moves a little if I have 5+ drinks in one day. Now, I don't do that often, but just so you know. The main risk in drinking is drinking so much that you fall down and hit your head causing a head injury, which can be severe when on warfarin. I would encourage you to consider home testing. This makes it very easy to know how your INR responds to moderate drinking. Reading dozens of folks on warfarin on this forum, I only recall one member indicating that they get a significant INR move from alcohol. There is a genetic condition that is rare which could cause a very small % of the population to get big INR movement from INR. It is easy enough, with the feedback from home testing, to see if you are one of these rare individuals.

Anyway, as they say with respect to warfarin and your INR; Know thyself. I think you'll find that as far as eating and drinking, you can probably do exactly as you did before warfarin. That has been the case for me.

Here is a lenghthy thread in which alcohol use on warfarin is discussed.

https://www.valvereplacement.org/threads/drinking-alcohol-on-warfarin.887658/
Best of luck and please keep us posted.

 

[tom in MO]

Hi, just out of hospital in the UK following mitral valve replacement with a mechanical one 2.5 weeks ago. Lengthy stay due to developing heart block and having to have a pacemaker fitted as well. Disappointed not to have had a valve repair as originally planned since I was considered to be an excellent candidate. The surgeon tried unsuccessfully to effect a repair but ended up taking it out and replacing with a mechanical one.

I agonised for months before surgery on the decision whether to opt for a tissue or mechanical valve if repair wasn't viable, and really didn't know what to do. In the end I went for mechanical based mainly on my age (I'm 59), most likely favourable long term prognosis, and not wanting further procedures or replacements in my old age! However I keep having doubts now on whether I made the right decision especially as I start getting into the full implications of a lifetime on warfarin and INR testing (the prospect of possibly severely curtailing my moderate alcohol intake I find particularly depressing - although I'm getting conflicting advice on this!).

Of course there's no point now in worrying over it, it's done and I have to get on and the make the best of it.

Welcome to this forum. Congratulations on your new valve. Look at this way, repairs can fail in the future, but mechanical valves usually do not.

Second guessing is normal but counterproductive. We all do it. Kind of like why didn't I go into plumbing when I got out of high school.

No need to curtail alcohol unless you are prone to drinking in excess, thus vomiting up your warfarin and getting into major bleeding accidents. You can drink and get drunk just like before.

INR testing and warfarin taking is easy if you can follow a schedule. If not have your phone do it for you. For me the worst thing about warfarin is not being able to take NSAIDs for arthritis, but some doctors say you shouldn't take them anyway. I still have acetaminophen and percocet

 

[dick0236]

Hi, just out of hospital in the UK following mitral valve replacement with a mechanical one 2.5 weeks ago.

I agonised for months before surgery on the decision whether to opt for a tissue or mechanical valve if repair wasn't viable, and really didn't know what to do. In the end I went for mechanical based mainly on my age (I'm 59), most likely favourable long term prognosis, and not wanting further procedures or replacements in my old age! However I keep having doubts now on whether I made the right decision especially as I start getting into the full implications of a lifetime on warfarin and INR testing (the prospect of possibly severely curtailing my moderate alcohol intake I find particularly depressing - although I'm getting conflicting advice on this!).

Of course there's no point now in worrying over it, it's done and I have to get on and the make the best of it.

Welcome Martin. I like your closing sentence..."make lemonade outa the lemon.

There is a lot to be said about NOT having OHS in old age. I'm in old age now and, believe me, I would not want to go thru it at my current age (86). Warfarin has been a small price to pay in order to keep me off an operating table for all these years.

FWIW. They gave me a beer a day whille I was in the hospital.....it was the only diuretic available back when I had my surgery. Everything is OK in moderation and I've been known to even abuse alchohol a time or two over the years.

 

[Superman]

Welcome to the forum. Can’t imagine being put under hoping for one thing and waking up with something different. At least it sounds like you were well informed of the possibility, so that’s good.

As far as living on warfarin, I’m 10 years younger than you and I’ve been on Warfarin for over 30 of those years. Since I was a teenager. I can’t think of anything outside of routine testing and taking my medication that I did or did not do specifically because of warfarin. When I was younger I had to go into the lab for testing. Once a month or so. That was a bit of a pain. When I was putting myself through college and working full time, just making the time to get to the lab was a hassle. So I’d sometimes go weeks between tests. The last decade or so, home testing has been great. Every week or two. Just a finger poke. Super easy.
I enjoy the occasional adult beverage or two these days and a lot more than “or two” when I was in my 20’s. Never really noticed an issue with INR. But I was a light weight on bar nights. Saved some coin I guess.

 

[Martin1962]

Many thanks for your replies. It's reassuring to know that many of you have been on warfarin for so long without any problems. I will have to look into the home testing, not sure what the situation is here in the UK.

The alcohol thing isn't a massive issue in the scheme of things, I just found the conflicting information really annoying. Most of what I read before my op and the advice from the pharmacists in the hospital was that moderate drinking should be ok. But then when I went for my first INR test at my local clinic yesterday the nurse was quite insistent that I should not drink any alcohol at all as it would send my INR "through the roof". When I challenged her she said I at least shouldn't drink any alcohol in the 3 days before an INR test. Even that contradicted what I had read which said it was best to drink smaller amounts consistently and regularly instead of infrequently to avoid any possible spikes in INR.

My next INR test is tomorrow. I guess the best thing is to slowly re-introduce small quantities of alcohol and see how my body / INR reacts.

 

[Chuck C]

the nurse was quite insistent that I should not drink any alcohol at all as it would send my INR "through the roof". When I challenged her she said I at least shouldn't drink any alcohol in the 3 days before an INR test.

She is clueless. And her information does not make sense, even if it did send your INR through the roof. Think about what she is telling you: If it did send it through the roof, not drinking 3 days before testing would make you oblivious to those obstensibly danderous "through the roof" numbers. If it was sending it through the roof, you would want to have that information, rather than be oblivious to it by stopping your behavior to satisfy your INR number. The purpose of taking INR is to make sure that we are in a safe range.
Let's say that you have the rare genetic type that causes your INR to "go through the roof" when you drink. You would certainly want to know that, which you might never know if you always stopped drinking 3 days before the INR test.

And let's say that moderate drinking, 1-2 drinks per day, moves your INR needle a few decimal points. Well, you'd want to know that too, so that you could make adjustments to your warfarin accordingly. If you changed your drinking pattern 3 days prior to the test, it would mostly mask this incremental movement in your INR.

Anyway, if you self test you will be able to see first hand how much it changes, if at all, in response to alcohol.

 

[carolinemc]

She is clueless. And her information does not make sense, even if it did send your INR through the roof. Think about what she is telling you: If it did send it through the roof, not drinking 3 days before testing would make you oblivious to those obstensibly danderous "through the roof" numbers. If it was sending it through the roof, you would want to have that information, rather than be oblivious to it by stopping your behavior to satisfy your INR number. The purpose of taking INR is to make sure that we are in a safe range.
Let's say that you have the rare genetic type that causes your INR to "go through the roof" when you drink. You would certainly want to know that, which you might never know if you always stopped drinking 3 days before the INR test.

And let's say that moderate drinking, 1-2 drinks per day, moves your INR needle a few decimal points. Well, you'd want to know that too, so that you could make adjustments to your warfarin accordingly. If you changed your drinking pattern 3 days prior to the test, it would mostly mask this incremental movement in your INR.

Anyway, if you self test you will be able to see first hand how much it changes, if at all, in response to alcohol.

wrong chuck

 

[Superman]

It’ll take a bit, but eventually you’ll get to a point to where you’re comfortable enough with your own responses to things that you can just politely smile and nod and ignore clinicians like that. There are still a few out there who don’t know what they’re doing, but I think things are better on the balance than they were 25-30 years ago when I started. It took a while for me to find someone who didn’t over-manage and start the roller coaster response (test too high, test too low, rinse, repeat).

 

[pellicle]

Hey Martin and welcome

I fully concur with everyone above.

You won't need to adjust your drinking and indeed if your like me having a regular intake (usually 1 or 2 glasses of red, or beer or scotches or gin and tonic) daily my INR is within range >90% or the time.

As it happens I help a few others learn to self manage their INR, this guy is just one

https://www.valvereplacement.org/threads/in-all-the-excitement-i-clean-forgot.888413/
He also enjoys a few and it's incidental.

If you haven't read my blog post on self management I recommend it as a good start, and as a reference (Its very detailed)

http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
Feel free to reach out if you want a hand in steering towards understanding what's going on.

Best Wishes

 

[AZATADINE]

Getting the dose right initially was a pain in the neck for me too. The first 3 weeks were the worst of it but it dialled in after that and I get a blood test every couple of weeks now.

I also have a beer or two a few nights a week and my INR is stable. I've abstained for a few days pre INR test and also drank a couple of beers for a few days prior to INR test. No big differences in INR (as in its always in the 1.8-2.5 range). Having a beer or two doesn't seem to impact INR for me. I've not drank more than a beer or two though but I was half petrified to have a beer initially too!

 

[pellicle]

Getting the dose right initially was a pain in the neck for me too. The first 3 weeks were the worst of it but it dialled in after that and I get a blood test every couple of weeks now.

this reminds me of a paper I found recently

now, no cheating, tell me when you think that was published? There are a few give aways in that and indeed some interesting phrases in there for the historical academically interested too.

How far has clinical practice lagged behind (esp in the USA) eh?

 

[Martin1962]

Quite some time ago I guess, 1980's? Doesn't seem that things have moved on a great deal.

 

[Chuck C]

wrong chuck

I see.

Rather than giving someone an angry face and telling them that they are wrong, why not give some context to your disagreement?

How am I wrong? Are you saying that you agree with the nurse who told him that drinking any alcohol at all will send his INR "through the roof" ? Has that been your experience?

 

[tom in MO]

this reminds me of a paper I found recently
View attachment 888405

now, no cheating, tell me when you think that was published? There are a few give aways in that and indeed some interesting phrases in there for the historical academically interested too.

How far has clinical practice lagged behind (esp in the USA) eh?

Which "place" is "ahead"? What clinical practice...warfarin dosing.?

Not sure how this snippet shows the US has lagged behind any place. Why do you enjoy putting down the US health care providers?

 

[pellicle]

Quite some time ago I guess, 1980's? Doesn't seem that things have moved on a great deal.

Cigar: March 1984

This shows how quickly using actual data a patient can be brought into theraputic range. Yet many times I read here about how "my release from hospital was delayed because they couldn't get my INR to raise"

The patient is led to believe its everything under the sun except incompetent clinical practice. Yet this study is 38 years old! Just one more piece of evidence in my collection supporting my view that clinical practice is frequently largely unaware of what is happening in the literature : NB they are not interested in best practice.

 

[paulk]

I second guess a little myself (I went tissue at 60), thinking about how long it might last, though I’m at peace with it. Your choice has a significant upside!

 

[Daniel758]

Which "place" is "ahead"? What clinical practice...warfarin dosing.?

Not sure how this snippet shows the US has lagged behind any place. Why do you enjoy putting down the US health care providers?

The reason is that he has "issues" and isn't at all "in real life" what he pretends to be here.

I've read your posts over the last few years, this isn't news to you.