GP Appointment

A GP Appointment was necessary to get me on my regular repeat prescriptions for Warfarin, so I attended.  He duly prescribed a selection of 5,3,1 and 0.5 tablets.

I then started to discuss the self testing.  He said "I have never heard of such a thing" and "it doesn't sound a good idea to me".  After much pleading and negotiating, I eventually got through to him when I said that I make regular trips abroad (for a month at a time in some cases) and on these trips I would be unable to test.  He agreed to write me a prescription for the test scripts for use on holiday ONLY.  He reaffirmed that I should never alter my own dosage, and its pointless to test myself because the hospital will manage it.  What a load of nonsense, I'm not sure he spoke a true or accurate word.

Anyway, i got all the tablets, plus 2 boxes of the Coagucheck strips, priced at a cool £120 a pack.

First hospital test

After 2 weeks of independence, time to go to the hospital.

I'm still very anemic, and feeling light headed and cold most of the time.  Still suffering from terrible night sweating and other issues, so the last thing I want to do is leave the house.  Regardless, I have to travel a distance to the hospital.

On arrival at the warfarin clinic, the enormity of the warfarin problem in this country becomes evident.  There are literally hundreds of, mostly 60+ year olds, queuing up for their appointment.

After the obligatory 30 minute wait, i get called up, and receive a full test tube blood draw.  In the context of my finger tester, this seems a fragrant waste of my precious blood.

I then get sent home.  No test results?  How odd.

Results don't arrive in the post for 2 days on an old fashioned "pay slip" type letter which also contains your dosage change and next appointment time.  I noticed the first two... and missed the next appointment time.  What a poorly designed document!

It said that I should adjust my dose to 8.5 based on a single test snapshot of 3.1 and the fact they believe my range should be 2.5 to 3.5 instead of the correct 2.5 to 3.0.  This is because their computer system didn't have a setting for 2.5 to 3.0.  So... they sent me home with a dose that was almost certain to send me on an INR high within only a few days.  However, they didn't want me back for another test for 2 weeks.

First 2 Weeks

Due to some administrative screw-ups, i went for the first 2 weeks without anyone on my case.  Eventually the hospital caught up with me and issued me a warrant to go to their blood testing department!

During these 2 weeks I was managing my own dose. Due to massive changes in my metabolism, energy levels, exercise, and drugs - the INR was going all over the place, and went up to 3.4 for a couple of days.  Not critical, but too high nonetheless.  I was of course finding my feet with drug adjustments and working out how quickly they take affect.

By the end of the 2 weeks, it was not a bad result, only out of range for 2 days, and that was only 3.4 - never low.  I have already learned one teaching to be false - they said that it takes 7 days for a dose change to take affect.... and this is clearly not the case, its reacting much faster than that - some possible reaction the immediate next day, and some definite reaction the day after that.  I now understand that most literature talks about 3 days, but I was told seven!

Here are the results and doses for the period:

Leaving Hospital

Just before leaving hospital, it's time for a consult with the pharmacist.  She's sending me home with a bagful of drugs to stop sickness, constipation, headaches and all manner of other ailments i'm feeling, but more importantly the Warfarin drug itself, and pack of information.

We chatted through how things will work and she told me that I will need to check in to my local hospital for blood tests.  These are likely to be weekly at first, and once stable move to 3 weekly, or even longer.  What a pain in the neck this feels.

I discussed with her my self testing and she was completely dismissive.  She said "You won't need that", and was rather patronising about my efforts towards independence.  Once stable, she said, I won't need a test more often than every few weeks, and the drug just stays in balance.

I chose to smile and not discuss any further :)

First time using Coagucheck

My first time using the coagucheck was just 6 days after the operation at home.  I'm somewhat disabled and I've got a pounding headache, so this isn't the best recipe for concentrating!

This is how it works:

1. Insert strip.  It gives you a 3 digit number to confirm.  It must be the same number as on the side of the strips packet.  You confirm it.
2. Wait around 20 seconds for it to warm up.
3. It beeps and starts counting down from 180 seconds.  This is how long you have to draw blood.
4. Prick your finger, squeeze out blood, get it onto the right place on the strip
5. Wait 30 seconds for the result.

Sounds simple? Well in the first few days I wasted 10 strips.  The most common mistake was not getting enough blood, the guidelines in the manual were very vague on this.  Turns out you need a ladybird sized blob.  Second mistake was missing the strip and getting blood everywhere else!  The technique I later found is that you should sort of wipe the strip across the finger, picking up the blood.

After a week i was getting a near to 100% success rate, with just the occasional mistake.

Surgeon's Opinion

Now my brain is back to normal working order, it's time for a consult with the surgeon.

My surgeon is Christopher Young of London St Thomas' or London Bridge hospital.  From the moment I met him I have had nothing but respect and admiration for him, his style, his knowledge, and his caring approach to me as an individual.  Unlike others I met he's interested in me, my lifestyle, my skill set, and used this individual information to formulate a plan to fit in with my life.

I told him about the self testing and he said it was "The only way to go".  How often should I test?  He said every 2 days if it was him, and acknowledged that most others would disagree with him on this point!

Starting on Warfarin

The day after surgery, the Warfarin starts.  They started me on 8mg in the belief that this level of the drug should be higher than my regular dose will settle at, and should bump start the therapy.

INR is the measure used to state how quickly the blood clots, and it can be tested either in a hospital lab or on a 'finger prick' machine like the one I own.  My target INR is between 2.5 and 3.0 and needs to stay in this range.   If too low I have a risk of stroking, and if too high of bleeding and being very susceptible to bruising, and worse.

The first three days continued at 8mg, and then they decided to cut it back to 5mg.  Immediately following this the rise in INR stopped and fell back.  The next day they realised the mistake and fixed it by going to 9mg for a day then back to 8mg.  This meant that my warfarin didn't get "Into Range" for 8 days which is disappointing!

Here are my test results, and doses, for the first few days: