Aortic valve type / Warfarin Testing - British Heart Fou...

British Heart Foundation
15,824 members10,342 posts

Aortic valve type / Warfarin Testing

Colin39
Colin39

Heres that question again. I will soon have to decide which valve replacement i want. Ive been thinking about this for a while, and im very much leaning towards the mechanical valve. (I would like this to be a one time journey)

Im not bothered about the ticking and im not bothered about the lifetime on Warfarin. What i am borhered about is half a lifetime in a doctors waiting room.

So my question(s) are about self testing. I know i will have to by the tester myself but are the testing strips readily available on nhs prescription and can everyone do self testing? I would hate to find out afterwards that im not a suitable candidate.

Thanks

Colin39

21 Replies
oldestnewest

It really depends on where you live and the protocols they have in place.

When I lived in the south it was a venous sample which went off to the lab and I would get an email with dosing instructions. There was no way I could persuade the docs to prescribe testing strips so I could self test.

I moved three years ago to the north and protocols are completely different. It’s a nurse led clinic using coagucheck and dosing is given there and then.

I have now got my own coagucheck, so I self test and phone results to clinic the nurses give dosing instructions and when to test next. When I need more testing strips I phone the clinic and pop in and get some. It’s all very easy.

So, check first what is done in your area, the coagucheck machine is about £300 but saves me a lot of time and I feel I have more control.

J

Colin39
Colin39
in reply to judes

Thanks. Im also in the North so fingers crossed this is something i will be able to do. I also plan on discussing this when i meet my surgeon next month.

MichaelJH
MichaelJHHeart Star
in reply to Colin39

I suspect it is more than a north-south devide. With BG (blood glucose) meters and test strips it seems to vary between neighbouring health trusts.

MichaelJH
MichaelJHHeart Star

Hello and welcome to the forum! I am not on Warfarin myself but have many people who are. Having Type I diabetes I am used to self testing (for blood glucose levels). Being cost neutral you only have to meet a few criteria. For the self testing you need to have reasnoble visual acuity, the dexterity to take a blood sample and not faint at the sight of blood (it does happen but is extremely rare). Apart from that your INR needs to be fairly stable so initially it will be the hospital till it settles.

When do they plan your AVR?

Colin39
Colin39
in reply to MichaelJH

Thanks Michael.

This all sounds quite promising. First appointment with surgeon is next month, bit already had many appointments at local hospital, so hopefully not too long to wait.

MichaelJH
MichaelJHHeart Star
in reply to Colin39

After my first appointment with surgeon I had "fitness for surgery" (pre-op) and a number of other tests including cartoid artery scan and lung function which had not been carried out before referral.

One hint - dental health must be perfect (no decay, no loose teeth and no gum disease) for OHS (open heart surgery) as there is a risk of infection traveling to the heart. So if you have not been to the dentist recently book a check up!

Colin39
Colin39
in reply to MichaelJH

Think i must be about ready to roll. Lung function has been done, angiogram. Ct, neck arteries ulrasound. And teeth had been sorted too, luckily i had a routine appointment just at the right time, so no long waiting.

Suzy1954
Suzy1954
in reply to Colin39

Sounds like you’re all prepared for surgery Colin. Hope all goes well. Regarding the warfarin, I agree with what the others say. I self test as well as going to the anticoagulant clinic every few weeks. I have to buy my own test strips which aren’t cheap £70 for 24. My GP refuses to supply them as they say they already supply a service ie at the local hospital. I believe I do save the NHS time and money if I don’t visit the clinic as often though. Hope this helps and good luck.

Colin39
Colin39
in reply to Suzy1954

Thanks Suzi.

£70 for 24 is much more than i anticipated. If that is the route i had to take, it may push me towards the tissue value, as i really just want to carry on with a normal as possible life.

How often do you have to test?

Col

Suzy1954
Suzy1954
in reply to Colin39

It depends. Sometimes once or twice a month. If for some reason my INR goes up or down I need to test more regularly. At the moment because I’ve been on antibiotics for a chest infection which affect your INR reading I have been testing once a week. It’s either that or go to the clinic but I’ve got a life to lead! It’s difficult but I’d still have chosen the mechanical valve over maybe having to go through surgery again.

Colin39
Colin39
in reply to Suzy1954

Ok. I thought it would be much more regular than that, so even at once a week the annual cost would be worth it to avoid the regular trips to the clinic.

Thanks.

Suzy1954
Suzy1954
in reply to Colin39

I think so. I wouldn’t be without my machine. I always take it on holiday. It gives me freedom and peace of mind. With any luck your GP might provide the strips. Maybe they will all come on board one day and realise it’s the way to go for many of us 🤞

Hi Colin,

I had a mechanical AVR in 2017, I had a new generation valve which I really hardly hear, I hear it as I go to sleep and wake up. It is a wee bit noisier to start with but is quieter as you get used to it.

Regarding warfarin, I started self testing after about six months. I bought my machine but my GP practice supplies the strips and needles on prescription. Like others I test and phone in the result. My INR is relatively stable and I Have been on the same test for several months.

I should say that I am in West Lothian and the practice has been very helpful.

Thank you. It is starting to soumd more and more like this might be the right route for me.

Totally agree with Suzy1954 having your own machine gives you the freedom to do what you want when you want. I was in Russia earlier this year, now there’s no way I could get an INR done there but with my machine was easy.

Testing regime will depend on your INR results sometimes weekly sometimes less often.

Another thing that crossed my mind, a lot of people say avoid green leafy veg due to the VitK levels. What a load of rubbish as long as you are consistent your fine.

I’ve been on warfarin for 20 years so have worked out what’s what.

J

My clinic supports home testing so I got a machine straight away. Unfortunately my surgery doesn’t prescribe the test strips or lancets, but it varies from authority to authority, depends on their budget. My INR levels have been very steady since I got home after my AVR and I now only have to test every eight weeks. I can always test in between if I’ve eaten something that may have changed my levels. I do have to go to the clinic every six months or so to get my machine checked against the clinics.

Wendy

Colin39
Colin39
in reply to Fredders

Thanks Wendy.

After reading all the comments today, i still feel that self testing would be best for me. Even if i have to cover the costs myself.

Colin

Then there is the question of who does the dosing. Frankly, self-dosing, most of the time, is easy, and I do not understand reluctance of health professionals to allow this. I have been self-dosing for over 25 years. How do you feel about that?

Colin39
Colin39
in reply to ILowe

Sounds good knowing its possible. Im sure than more than capable and confident to make that decision once i get settled in. Just really dont want to be spending too much time at the docs. I wouldnt mind having to make a regular phone call though.

It depends what you can negotiate and what you are comfortable with. You do not need a prescription to get the strips and needles, though you may find a pharmacist disagrees with you. Roche website sells the strips direct. You will probably have to submit to an annual check on your performance and machine. You may be able to negotiate a way of texting them the result and they give you the new dosage. The trouble with that is the fact that the best answers look at the whole picture and not just at the last figure.

25 years ago I was given two minutes discussion as training, and then left to it. I was told that dosage was rather like charging a paintbrush then keeping it charged. That was enough for me.

The best advice I have found comes from this paper: Kim YK, Nieuwlaat R. Connolly SJ, Schulman S, Meijer K, Raju N, Kaatz S. and Eikelboom JW. Effect of a simple two-step warfarin dosing algorithm on anticoagulant control as measured by time in therapeutic range: a pilot study. Journal of Thrombosis and Haemostasis 2010 vol 8: p101-106 . I have published something similar, in a small, peer reviewed paper. Lowe I. 2017. Warfarin self-dosing, a case study on long term self-management of anticoagulation. Journal of Observation Pain Medicine Vol 6 pp 31-40. joopm.com -- click on volume 6.

Hi,

I don’t know if this helps but I had to make a similar decision a few months ago before my ascending aorta replacement. Like you, I wanted it to be a one-time gig.

There is an alternative to the “normal” tissue valve and that is the new Inspiris valve although not every hospital fits them. In theory, the Inspiris is supposed to last twice as long as the regular tissue valves.

Best of luck,

You may also like...