Alternatives to Warfarin?

[Tickertalker]

Hi all, My surgery was cancelled just before the lockdown and I've just been given a new date. It's been a tough few months for us all. I've been told that, along with a repair for a thoracic aortic aneurysm, that my aortic valve needs replacing and the surgeon has strongly recommended that I go mechanical. Obviously this means a lifetime on blood thinners. Someone recently told me that there are now alternatives to Warfarin that don't need constant monitoring. That sounds like a huge plus. I have no idea if I will be offered a choice but it would be good to know the pros and cons of the different medications. Any feedback would be great.

[Shar28]

Hello. My husband had an AVR a couple of years ago and opted for a mechanical valve, along with a lifetime on Warfarin. Although there are “novel anticoagulants” such as Apixaban they’re not tested for mechanical valves and so only Warfarin is available at the moment.

For my husband, Warfarin is ok. Monitoring started off quite frequently but had dropped to once every couple of months and he bought his own testing machine. He gets the test strips and finger prickers on prescription via the anticoagulant clinic. I think the most useful piece of advice he was given was to adjust the dose to his diet, so he eats what he wants rather than missing out on broccoli, cabbage etc.

There’s lots of good information on the AF website (link below) and their forum on here.

heartrhythmalliance.org/afa...

All the best to you and your loved ones.

[Tickertalker in reply to Shar28]

Thanks, that's really helpful information. I have a few questions that I want to ask my surgeon so it's good to be able to cross one off the list. Warfarin it is.

[Mikedabike]

Hello there. Good luck with your new date. There is a new drug out there for warfarin patients. I know it as Rivoraxaban. I asked my warfarin nurse about this drug as apparently those on it don’t need to be tested as often. I was informed that the drug hasn’t yet been cleared for use with heart valve replacements as yet, which I guess makes sense if it is a new-ish drug. I have a mechanical valve and I am very happy with it. It is a tried and tested procedure over many, many years now. I am lucky to be retired now, so my visits to the warfarin clinic are not a hassle, especially since my levels appear to have now settled down. I only have to go every 4 weeks. I met a chap in hospital who tests his own levels with a machine (he gets the test strips on prescription) and purchased the machine himself. He then just emails the results to the warfarin nurse and they get back with his next dosage. This seems an ideal solution, especially if you lead a busy life, or you have difficulties visiting the warfarin clinic. However not all health authorities seem to be enlightened enough to allow self-testing. Good luck.

[ToffeeT in reply to Mikedabike]

I've had a TAVI procedure to replace my aeortic valve. I then a few months later had an ICD fitted. I'm on Rivaroxiban.

[Mikedabike in reply to ToffeeT]

Thanks for reply. Just out if interest is it mechanical or animal valve.

[ToffeeT in reply to Mikedabike]

I believe neither, I belive it's synthetic.

[Tickertalker in reply to Mikedabike]

Thanks for your feedback Mike. I used to know someone called Mike the bike and he rode a large motorbike. I don't know if you ride a motor or a push bike but I've been quite concerned that, once I've started on my Warfarin, I'll have to spend the rest of my days wrapped in cotton wool to reduce the risk of cuts and bruses. Is that your experience?

[Mikedabike in reply to Tickertalker]

Hi, I’m a keen cyclist. As I’m nearly 63 I’ve given up worrying about cuts and bruises etc. Don’t get me wrong I try to be sensible and careful. I have all my medical and contact details on my phone screensaver. I always wear ‘one life id’ bracelet when I’m riding or out in the hills walking. I may be the exception as I was very fit before my operation (my valve problem was congenital). I’m walking anything from 6 to 18 miles on my local hills. I’m up to cycling 40 to 50 miles steadily on my bike. This isn’t showing off, it’s just to show what can be achieved. I try and be as careful as possible when out. No more rock scrambling and no more speeding downhill on my bike. I can’t recommend the cardiac rehab teams enough after your operation and once things have settled down. You will find you go through whole ranges of emotions and fears after your operation. Just take your time, take it really steadily. I literally just started off with very slow, short gentle walking. I would even say that for the first few months that is all you need to do. Give time for your body to heal. One day at a time as they say.

[Tickertalker in reply to Mikedabike]

You're an inspiration Mike. I'm 66 and can't claim to be anything like as fit as you although I did go trekking in the Borneo jungle two years ago. Right at the top of my bucket list is learning to paraplane. They say it is safer than motorcycling but that certainly doesn't mean that it isn't without its dangers. Anyway, that is for another day. As you say I'll have to learn to walk before I can fly.

[Mikedabike in reply to Tickertalker]

Just in addition to my last reply. I forgot to add I have now got into the habit when on my travels of a carrying a small first aid kit. In particular items like sterastrips, antiseptic wipes etc.

[Hannah-Hay]

I have been on warfarin for past 20 years following a heart attack. I actually like the fact that it is a tried & tested drug rather than a new one. I like that you get to know how thin or thick your blood is & the dose of warfarin can be taken to reflect that INR Reading. I also don’t bruise on warfarin. I have friends on the newer blood thinners & they seem to always be covered in bruises. As there is no check up on these new drugs you have no idea if your blood is thin enough or too thick. I was offered new anti coagulant recently & declined for the above reasons. My reasons were acceptable to the doctor & I am carrying on with warfarin. Just my opinion - we all have opinions & they aren’t always the same.

[Tickertalker in reply to Hannah-Hay]

Thanks for your feedback Hannah. Yes, better the devil you know although I can't see why anyone would market a new drug unless it was an improvement on what went before. I must admit I find the whole idea of monitoring everything I eat to be quite daunting but I guess I'll get the hang of it.

[Hidden]

Hi there, I was only on warfarin just under a year, but didn’t find it too bad. Agree, amend dose to suit diet, not diet to suit dose, or you’ll end up low on certain vitamins & veggies. I didn’t monitor everything I ate, far from it. I just tried to keep certain foods a bit consistent week to week, eg once I decided I wanted to include spinach, I decided to eat it every week on Saturday ! And my summer dose tweaked for lots of salad. It didn’t need too much tweaking and I didn’t monitor diet.

If you’re interested in self-testing (I would have been if life-long), ask your GP about strips, as I hear not all locations will issue test strips on prescription, you may have to buy.

I found a pill box invaluable, and take extra pills if you go away (I once dropped a batch in the mud !). Set up re-order reminders, i did electronic ones via my pharmacy, who requested from the Gp/hospital for me, reducing my time & effort. Consider a pre-payment certificate for your prescriptions (£27 per quarter, for as many prescriptions as needed that quarter, so worthwhile if more than 1 a month). Warfarin does have a few other drug interactions, ask if relevant.

And I know someone who still does mountain climbing on warfarin! He chose a mech valve to minimise chance of another heart surgery (non-mech ones wear out).

All the best

[Cliff_G]

Hi, Tickertalker , hope your new date works out ok.

As someone who had an emergency aortic dissection, I know you are in a great place to have an elective procedure and hence avoid what I went through. Where will you be going?

As far as valves go, there are tissue valves available but they have a limited lifespan, so depending on your age your surgeon might recommend against them. And I'm 99+% sure the alternative anti-coags are *not* suitable for metal valves.

Myself, I have a metal valve and am on warfarin for life (I'm 65). The warfarin isn't so bad, I think it's sometimes made out to be a big problem, but I don't find it so. One of the main things is not to vary your diet hugely, particularly green veg, buckets of spinach one week, nothing the next. You don't have to avoid foods, just keep the intake roughly similar over time.

I am not particularly stable on my INR and end up having to go to the docs every 1 or 2 weeks, it rarely gets above 2 weeks, but I also have a narrow range. Our warf clinic uses the Coagucheck machine, so you only need a finger-prick test, which is no big deal.

I think there would be more of a problem if your testers needed a full blood sample, as after months or years, they might start finding it very difficult to find a vein. Mine are not great, due to giving blood many times in the past. As an alternative, you can get a Coagucheck for home use, and can often get the finger-pricker and test strips on the NHS. I know people in my Aortic Dissection Awareness FB group who use this and swear by it. It's also particularly good if you want to go away for a while.

Best of luck and let us know how you get on.