Personal experiences of self-monitoring >

Travelling and self-testing

Max Crompton

Travelling around the world with a CoaguChek self-test system is easy! There - that's the main point I wanted to make. Making the break from clinic controlled coagulant management is the hard part - but it is well worth the effort.

I am 23 and travelled through South Africa, Australia and New Zealand with my girlfriend. I was away for around seven months. I self-tested and self-dosed the whole time. It was so successful that I am continuing to control my own coagulant, even though I have now returned home.

I bought my CoaguChek system a few months before I left. I contacted my local coagulant clinic to enquire if they would manage my coagulant whilst I was away. I thought that I could email my results to them and they could reply with the required dosage. They could not do this, because they could not take on that responsibility whilst I was out of the country. I therefore contacted my consultants at the heart hospital - I'm on warfarin because of a heart valve replacement - and they tried to help me. They contacted my G.P, local clinic and Kings College hospital; who might have been able to help. But despite this, no medical professional would take on the responsibility of setting my dosage whilst I was away. If I wanted to travel, there was only one option - self-management.

Initially my consultants and local clinic strongly disapproved of me taking on my own dosing responsibilities. It was this reaction that confused me and really made me question whether I could - or indeed should - go travelling around the world. Through their reaction, I doubted my capability of embarking on this adventure. This is where Anticoagulation Europe came in and helped me. Their advise was very reassuring and they posted to me King's College research based upon patients self-testing and self-dosing. The research proved that patients stayed within their allocated INR range for a greater degree of time when they self-managed their own coagulant. ACE also suggested about using a computer software program called R.A.T to help me. It is a computer program that would calculate your new dose, should your INR fall out of range. I downloaded this from the Internet and tried it for a few weeks as well.

After talking to ACE I re-contacted my clinic and consultants and said that I would self-test and self-dose. The Nurse specialist at the Heart hospital supported me in this action and managed to secure me a secondary back up, whilst I was away. I would email every INR reading and new dose to the group email address at the G.U.C.H heart unit that I am with. They would check what dose I have decided upon and - if they disagreed - they would reply with what they recommended. This was an incredibly supportive and helpful arrangement for me which initially set a lot of my worries at ease. However, throughout the whole time they did not need to alter the dose I set for myself; therefore I no longer email them my results for checking.

The most helpful and useful aspect of preparation for my self-management was to visit my local clinic's coagulation nurse. I spent over an hour with her and learnt more about warfarin that I ever knew before. Learning all of this information gave me more confidence in self-management. I was also put in contact - through ACE - with a girl who had travelled and self-dosed before. I spoke to her for about 40 minutes; that also increased my confidence.

There are lots of practical things I learnt whilst sorting out my coagulant testing. First, I had to have my blood tested at my clinic and then with the CoaguChek machine. I repeated this comparison six times to make sure that the results correlated. My machine compared well with my INR always being around 0.5 below that which my clinic stated. At first I thought that my machine was broke and that I had done something wrong, but having discussed it with my coagulant nurse, I understood that INR is not an exact science. Your blood changes from hour to hour and two different clinics would get two different results. It even depends on the competency of the person who measures the blood.

I should have started to self-test and dose before I went away, but I didn't conceive that it would take the time it did to sort out, so I was rushed for time before my departure. In hind site I would have gone for more blood tests to correlate my machine and would have started self-managing prior to leaving. As it turned out though my self-managing started the day I flew away from Heathrow on the 10th of May 2005.

Good advice I received from Roche, my clinic and ACE helped me immensely. The machine has to be carried as hand luggage on aeroplanes as the temperature drops very low in the baggage hold and can damage the unit. I was told to take boxes of twelve test strips, rather than a 48 pack, because if you lose one pack of twelve, you have your other boxes; however, if you lose the 48 pack you'll be completely out of strips. I also bought from the Internet two, green, hand sized, first aid bags. I put my test strips in them and wrote my name and email address on the outside in marker pen. Therefore when I put them in the fridges at the countless hostels we stayed in, no-one ever touched them, or threw them out when they were clearing the communal kitchens.

I thought that travelling around, whilst always needing to keep the test strips refrigerated, would be limiting. But it just simply is not. There was nowhere I wanted to go that I couldn't because of my CoaguChek system and test strips! The strips can stay un-refrigerated for a maximum of 60 days, which is a very long time. So even if you have a 48 hour bus ride - Alice Springs to Sydney - or a four day camping trip - Safari - the strips will still be fine. I made a tally chart on the test strip box with how many days it had spent out of the fridge and it never got close to 60 days. Of course I had to remember to put the strips in the fridge as soon as I arrived at a new place and then remember them on my departure. I had a couple of urgent taxi rides from the bus stop back to the hostel when I forgot to retrieve them from the communal fridges. Luckily though, I never left them and moved on to a completely new town!

Using the machine abroad was easy. I just tested my blood either on the floor in the dorm, or on a dresser table or a dining table in the hostel. Once I got my result, I would write it down on a notepad and keep it in the CoaguChek case. I would then put the case back into my backpack and that was my INR done for another week. I was advised to test my blood weekly, because constantly changing diet, altitude, temperature and so on would affect my warfarin. Also, measuring weekly made me feel safer, as I knew that if my INR moved heavily, then it would have only of been for a short amount of time.

I did not take any vials of vitamin K around with me - which thickens the blood - but the nurse said you could do if you wanted. This is where knowing your own body is so important. I know that my INR is generally quite stable. I have been on holidays in completely different temperatures and eaten completely different foods, but had still been within my INR range upon my return. This is why I didn't take a vile of vitamin K. If my INR had the tendency to rise sharply as a result of changes in diet, or climate, then I would have taken them.

When my blood went out of range travelling I adjusted my dose up, or down and kept my records. I didn't have any problems and did not need to see a doctor or go into hospital once. For the seven months I was away I stayed within my INR range for two thirds of the time; which is higher than my ratio at my local clinic.

It is a big responsibility taking on your own coagulation management and one that should not be taken lightly. However, having said that - if properly prepared and informed - it is not very difficult. I agreed with my local clinic that if my INR went over 7.0 then I should seek medical attention as soon as possible; anything under that I would manage myself. However, the highest my INR reached was 4.6 and that was mainly because I started to take anti-malaria tablets which affected my warfarin.

I had to buy more test strips in Australia which was very simple. I called Roche Australia and ordered them over the phone. I asked the local pharmacy if they would take delivery of them and they very kindly obliged.

The whole travelling experience - for me - was simply without parallel. And that was made possible by Roche, the GUCH heart unit, my local clinic and ACE. Now I have made the change to self-management, I have been in range for a greater degree of time and I have the freedom of not having to go for weekly blood tests.

All in all I think that moving to self-management is the best thing to do and a necessity if travelling is on the agenda. I hope that this might help anyone who is considering travelling. Especially if you fear that taking oral anticoagulation will stop you from experiencing the world.

Please feel free to contact me any time to discuss any aspect of travelling with a CoaguChek system.

Max Crompton