My own self tester

I've decided to spend £299 and buy a Roche Coagucheck XS machine.  The consumable strips for this machine are available on prescription (at the GP's discretion) making them affordable.  The alternative would be £120 for 24 tests, which is damn expensive!

The machine has arrived and looks good, simple enough to use by the looks of things.  Time to leave it in the box until after the operation.

How to manage my drugs?

In the run-up to the surgery I have read everything I can about Warfarin on the internet, and have started thinking about how I will deal with it.

I'm not the sort of person to just sit back and trust health professionals.  I always back up what they say with my own research and I'm not afraid to ask questions and challenge what i'm told.  The older I get, the more I notice inconsistencies, and the more I feel I need to watch my own back.

One other factor of relevance is that I travel quite a lot.  I'm impatient, hate hospitals, hate waiting around, and don't want to feel like a patient, I just want to get on with my life.

In summary, it's clear that I need to be independent, and need to control my own drug.  This means I need to own my own self testing machine.

The antiquated law in the UK is that I am allowed to test my own blood, but I'm not allowed to adjust my own dose.  In addition, there's nobody I can phone for advice, and nobody I could give my results to in order that they adjust my dose.  Even if I could, they wouldn't be allowed to take my result as meaning anything unless they did it themselves.  Pretty useless then!

Even before being on the drug I've already made the decision that I will take all of this with a pinch of salt, and just manage my own dosing.  This will obviously require lying to the faces of professionals, which is uncomfortable, but necessary.

About INR

INR is the measure of how quickly your blood clots.  It naturally varies amongst different people but a normal person will have an INR around about 1.0.  If you take anti-coagulation, then your INR will get higher so that if, for example, it is 2.0 then your blood will clot precisely twice as slowly as a normal person.

My INR target is slightly lower than other mechanical valve owners due to my surgeon having confidence in the natural anti-clotting properties of the On-X valve that has been installed.  I'm recommended to stay between 2.5 and 3.0.  I should never allow it to fall below 2.0.

If INR goes low, say below 2.0, then I run the risk of a blood clot forming somewhere around the valve and shooting up into my brain.  This would cause a TIA or even a full stroke - causing partial paralysis and all measure of other horrible things.  This is not good AT ALL.

If INR goes high, say over 4.0, then I run the risk of bleeding events.  Simplest of these might be seeing blood on the toothbrush, and more complex ones could be bleeding from rectum or if very high, even in the brain.  In addition, when high, I'm essentially more vulnerable to injury particularly from Blunt Force Trauma, which can lead to unexpected or exaggerated bruising, or even worse hematomas (like bubbles of blood forming inside a muscle, etc).

In summary, it's MUCH worse to have a low INR than a high one, so if in doubt, aim high.

About Warfarin

In the knowledge that I'm going to be on the drug for the rest of my life, its time to research the drug.  Here's my understanding:

Warfarin is often called a blood thinner, which is a ridiculous misnomer.   No matter how much you take, your blood stays exactly the same consistency, looks the same, and largely acts the same.  This concept is very misleading and has caused patients to make incorrect decisions through fear of the drug.

I thought that I would have to be more careful with knives after being on the drug, because if I cut myself i would keep bleeding longer than before.  Mostly nonsense!  I can report that cutting myself heals in more or less the same time as anyone else.

Quite simply, Warfarin inhibits the clotting of the blood.  It does this by slowing the Liver's production of an enzyme that clots the blood.  It's sort of "antodote" is vitamin K.  This means that the drug takes time to work - if you take a dose now, it will be several days before it's done much.

The thing is... the blood actually has more than one technique up its sleeve for repairing damage.  One is called "Platelets".  I think of these as little sticking plasters in the blood.  These only work when shown oxygen - essentially if you cut yourself these little guys patch up the hole.  This differs to the clotting that Warfarin inhibits, which doesn't require outside exposure.

This means that when on Warfarin you are more vulnerable to internal injury, bruising, hematomas, and that kind of thing - much more so than cuts.

Welcome to the Blog!

Since age 6 I have been diagnosed with Aortic Stenosis, a condition that causes narrowing of the aortic valve and means the heart has to work harder than usual to shift blood.  I always knew I'd need the operation eventually.  I've been largely symptom free, but after age 30 I started to occasionally notice that I was out of breath after doing only a small thing.  I was also suffering with regular visual migraines, but wasn't sure if this was related or not at the time.

In March 2011 during an regular checkup, the cardiologist announced that it was about time to have the operation.... this was quite a shock!  He said "No rush, you can do it any time in the next couple of months".  Sounds like a rush to me!  This somewhat destabilised me and caused me to write my will!

In this time I was lucky enough to be put in touch with a girl who had a very similar operation a couple of years ago.  I had many long emails with her discussing everything from the surgery, recovery and the warfarin.  Amongst other things, she helped me to initially develop a watchful mistrust for "believing everything you read" about Warfarin.  She also helped me form my own strategy for dealing with the drug long term.

2 Months later, I had an OnX mechanical AVR (Aortic Valve Replacement) and Dacron Aortic Graft.  The operation was a complete success.  This means I'm on anticoagulants for the rest of my life. Until something better comes along this means Warfarin (Or Coumadin Brand in many countries).

This blog charts my experience on the drug, and attempts to expose the nonsense that exists amongst medical professionals.  As I write this I firmly believe that the whole system is wrong, professionals are trained incorrectly, patients are given bad advice, and generally the drug is misunderstood.  This leads to problems ranging from seriously inconvenient through to life threatening.

To tell you the truth, I'm actually writing this in January 2012 after I have already gained lots of experience and feel I have something to share.... I am writing this in Diary form in this blog.