Needing some suggestions to sitting for hours in hospital

[Pefki]

I am 26 and on warfarin for a mechanical aortic valve inserted in April 23. I need to be tested very regularly, normally every 2 weeks atleast. It must be a blood test as the pin prick tests proved unreliable in my case. I spend hours and hours waiting at St Barts for a blood test which is where I am registered at the anticoagulant clinic. I just can't deal with hours of waiting around. I also have the flu at the moment which I can't shake and it makes matters worse. Can anyone suggest a better way?

[Becky1222]

I had the same operation over 25 years ago. I can't understand why they say the pin prick blood test is unreliable, as test is done straight away so if anything I would think it more reliable. Would it not be possible to get your blood test done at your local GP . When I first went on warfarin after my operation my results were all over the place for months and like you had to be tested every two weeks. It did settle down eventually. I found taking the warfarin just before going to bed helped for some reason.

[GillyA]

Hi there, like you I can’t do pin prick tests ☹️. I have been very fortunate that I’ve been out of the U.K. and able to walk into my GP equivalent as the working day starts and only be a few minutes late to work. I’m dreading managing this at home - my job is incredibly demanding and I just don’t know how I’m going to manage the time to do this.

You might see if you can go onto one of the new drugs (DOACs) that don’t need testing. It might also be worth asking to be tested for Antiphospholipid Syndrome which can cause clotting unexpectedly (having this sort of event so young is unexpected) and can also cause problems with pin prick test - I have APS and have to be tested every couple of weeks.

My plan is to talk to both my GP and my consultant to see if I can find a walk in solution both in London (where I work) and at home. I’ve looked at private options too, but can’t find one that will do a quick walk in blood test without a private consultation’ which suddenly puts what should be a cheap test into the hundred pound bill.

The U.K. system does seem to assume you aren’t working and are only being tested every couple of months.

If anyone has any bright ideas or experience do let us both know.

[Pefki in reply to GillyA]

Thankyou for expressing your similar concerns. While I was with family over summer, it was a 10euro blood test at a diagnostic centre in the neighbourhood and 10minutes in and out. It has been almost 7 months and I havn't found the formula to keep the INR steady and I don't understand why the pin prick test is unreliable in my case. I was retrenched from my job weeks after my return to work following 6 weeks recovery from the heart surgery. Since then I have been constantly interviewing without an offer to date. I am studying for my Masters and working part time as a research assistant. With a demanding full time job aswell, this testing schedule will not be sustainable. Although surgery this year was completely unexpected, I was born with a congenital issue so it was not a surprise to the cardiologists who were finally able to see me and surgery was scheduled 3 weeks later. Doctors will not offer alternative to warfarin yet, for fear of blood clots. No other drug has proved to be as safe with mechanical valves.

[ILowe in reply to GillyA]

People with mechanical valves are usually on warfarin -- it gives better protection.

[Deejay62]

If you have the flu just call them and let them know. When I was on warfarin I changed my appointment all the time. You can’t possibly go out if your unwell.

[Bakery40]

Hi Pefki , I'm sorry you are going through this. I feel you as I was in similar situation myself. I had pulmonary embolism twice and after the second one, there you go the good old warfarin was introduced to me for the rest of my life. I was almost getting depressed going to the clinic every week. Until I bought the self testing little machine ,which wasn't cheap. From that time no more stress and whenever they ask me I check my INR. The difficulty situation you have if the finger priks are not reliable for you. Did you ask if maybe the community nurse could help you when you are poorly ? I hope you feel better soon and find a solution. All the best. x

[Hidden]

Do you have to be on Warfarin? I mean, obviously you need to be on some kind of anticoagulant, but maybe one of the more modern ones (rivaroxaban, apixiban, etc) that you only have to have a blod test once a year? It is well worth asking, especially if you explain that you simply can't spare the time to sit and wait for hours.

[Midnight_Voice]

Consider a Coaguchek from Roche. You have to buy it, it costs about £500, but once you have it, you can get the test strips on the NHS.

This device, or rather its bigger brother, is reliable enough for clinical use in a doctor’s surgery, so no worries there.

I got one after being tested with one in Spain (long before they got taken up by the NHS in the UK), so I could do my weekly blood tests no matter where I was - a six week stay in the US with my device, rather than local clinical tests, let me more than break even on it.

And it’s been invaluable on a couple of 90-day world cruises.

The anti-coagulation clinic at my local hospital even taught me how to self-dose, so I can adjust my warfarin according to what the Coaguchek says, without even having to phone in the reading for my practice to do it.

[GillyA]

Thanks Midnight, I used this originally and it was brilliant, a couple of minutes and done, as you say even better when travelling. Unfortunately there’s a small number of us where these machines don’t work, neither the one in the clinic nor at home (in my case a difference of anything between 0.5 and 1.6 between the machine and venous testing). Combine with an unstable INR and it just doesn’t do the job. They simply won’t let me use them anymore as this level of discrepancy is dangerous. So that’s it at the moment, like Pefki until there’s another solution full on blood draws every week or two for life ☹️

[Pefki]

That's me too but I'd like to atleast try again to see whether it was maybe just too soon when they tried the pin pricks, after being released from hospital. One of the anticoag team said that they could try again once I am more stable- wondering when that might be.

[Jennifer53]

Talk to your anticoagulant clinic. My hospital set up a special warfarin clinic during COVID-19. It was so successful, it is still running. It's in a much smaller medical facility, even has specific parking for warfarin patients. Can your community nurse help.

[Suebo2 Moderator]

So sorry that you are having problems.

Please be aware that you cannot change to a newer tablet as there have been trials ,stopped early, as incidents of clogged mechanical valves.

If you cannot have a finger prick test, then you cannot do home testing.

How about getting your INR done at your GP? Bloods tend to go to the hospital for analysis and your GP will get the results. I used to run an Anticoagulation clinic in Bristol, but all blood tests done at GP surgeries as more convenient to patients.

Try not to get tested too often and dise change each time. You will have an idea of your required dose and this if going slightly out of range, dose adjust a wee bit and leave a couple of weeks for the dose change to embed.

Take care, and I hope that it all works out.

Sue

[Pefki in reply to Suebo2]

Thank you for your reply. They will retest by pin prick and blood on Friday. Let's see if things are any more aligned. I will try and see if it is possible to do INR blood tests at GP. Anticoag clinic not keen to change dosage if swinging within range. You probably understand that protocol. I know that warfarin is currently the only choice. All other drugs have failed during trials. My 6 month post op check up went well. Doc said 'stop thinking about your heart and live your life'.

[Bloodredroses]

yep it’s hell . Take lunch , coffee thermos . Ear buds. Pain killers . Got to be done . Try doing it if us oldies , with painful arthritis, getting there and the actual sitting is hell . Hope that makes you feel better . How about private blood testing , ( by post ) if that exists .