It always happens at the same time!

Just when you think it is safe to venture out? Life decides to make it just that little bit more difficult. Since the Lung doc changed my heart tablets and then made me feel so ill and throw the heart out to such an extent that I ended up in A&E and then Ambultary Care for many weeks of great treatment by a great team.

One of the legacies from all this is my blood INR levels have been unstable. I had a phone call on the afternoon of my Blood test to ask me all sorts of questions as to why I have gone from 3.5 to 5.4 in 2 weeks again! My last 4 tests have been 2.8, 5.4, 3.5, 5.4! I have a range of 2.5 to 3.5 3.0 ideal which is the higher level than most. But with the added bonus of multi conditions puts me at a greater risk? I was told to stop taking warfarin for a day and call them the following day after 13:00 to see what to take before my new paperwork arrives. The next day My sister called and reminded me it was the first year anniversary of our mothers death from leukemia. It was obvious that she was in need of a cuddle so the wife and I popped over to see her. As a result of this I ended up being late on my call to see what I should take! I took an executive decision to take 5mg and speak to them as I need to have an xray on my right knee in the morning.

Bright and early and I had the Xray with those stupid gowns that make your bum stick out no matter how well you try to do them up? Over to the Phlebotomy/warfarin rooms Pushed the buzzer and a technician came and I explained my dilemma, to be told to wait at the Warfarin room and ask their! A Lady came out so I knocked and once more explained to the Warfarin nurse what has happened who then spoke though a hatch to a more senior nurse who told me I need to speak to the people in the room I had been sent from and ask for the outpatients warfarin department?

By this time my knee is giving me more gip so off I limp back and ask for the outpatients warfarin department. Buzzer pushed and I think it is someone that knows who I need to see and takes my name and DOB and disappears to come back with a nurse. She asked what I did last night so explained I took 5 mg but she said we do not like to drop it that low? Well it was decided that I should now take 6mg a day instead of the 6 /6.5 alternative days. I would normally have an appointment time at the clinic and not wait in the normal phlebotomy room were you take a ticket and depending on the day wait and wait some more. I was promised that I should be on the list again but they have no slots next week?

What I do not get is I have been taking 4 to 4.5 for near on 30+ years and had the odd blip but now I am 50% higher and unstable?

I do wish the Lung Doc had left alone my tablets I was at least stable then!

Be Well

8 Replies

  • What a hassle for you Offcut. Your opening sentences say it all. What a faff and all in the name of helping you which I know they are trying to do.

    I hope you get some resolution which puts things on track and in better order for you. none of this is letting you get on with your life by the sound of it.

    Fingers crossed that they get you in better order very soon. Take care.


  • Fingers crossed. I have been fatigued while it has been playing up too?

  • Hi Offcut,

    The treatment you're getting from your anti-coag clinic is even worse than I was getting, back when I did attend . That was what made me get my own CoaguChek monitor and eventually do it all myself.

    One of my sisters, that was a nurse, said that one of her nursing tutors said that she thought that every nurse should have to go through an operation so they would understand what patients were going through. I think the same applies to a lot of anti-coag clinic staff. They should have to be on the receiving end so they appreciate what they are puting their patients through. I've found through the years that a lot of health care staff think their job is the most important one. They didn't seem to realise that they were often dependant on folk like me that kept a lot of their equipment working correctly. Rant over!!

    I suppose it's things like this that make folks opt for NOAC's

    Hope it all gets sorted out soon and you get back on "an even keel" again.

    Take care.


  • My veins are so tough now over the 30+ years of blood letting one of the nurse says I have rhino skin now :)

    I am sure it will get sorted over time but a real pain having to go every week for a blood test.

  • I would say you would find Coaguchek machine really useful. I do my own every 2 weeks at home but if any problems I do it whenever I think its necessary. I only go to clinic every 3 months.

    Also, have you considered the noacs?

  • My gp or hospital do not recognise them. Even though they do use them on those frightened about needles in my hospital. As for Noac's I am not 100% behind them and with my luck with them not having an antidote at the moment I do not want to use them. There does seem a growing movement to having tests with NOAC as well.

  • Really understand your dilemma.

    I didn't have approval from gp at first so got machine and bought test strips. After debate (argument) he agreed to prescribe strips.

    You can use the machine without their approval to get information about your inr and keep control. It is your heart!!

    Also I believe NICE are now in favour so that can be ammunition.

    I too have not moved to noacs but am thinking about it!!

    Good luck🍀

  • My Doctors have just grasped electricity and will not do anything that might cost to much.

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