I’ve had this blog planned for a couple of weeks now and it has just become even more relevant this week thanks to a slight set back with my deep vein thrombosis. It feels like my life since diagnosis has been ruled by a “Just in case” mindset. One of the really lovely things with a DVT is the fact that you can have a bit suddenly break off and travel to the heart, lungs or brain causing potentially fatal issues such as heart attacks, loss of breath and strokes. Thanks to this you’re constantly watching and wondering about any small change in your body. Whilst on anticoagulants (which make your blood less likely to clot) you’re also constantly aware of the fact that any cuts will bleed for longer than usual. This makes something simple like shaving your legs feel like an extreme sport! Ok maybe a slight exaggeration there but it is definitely on your mind.
It has become even more relevant this week because I was confident that my INR was stable and it was just a case of riding out the fact I have to be on warfarin until the end of March. No. It was not to be. I had a check up on 13th October; prior to this I’d been having weekly check ups and sometimes more frequent at the start of my treatment. As I was going to visit my parents 22nd to 29th I asked them what to do about my checks. “Well your INR seems to be nicely stable, I’d put you on monthly checks but as you haven’t done that yet we’ll be happy with 3 weeks and see you when you get back, 3rd November”. Ok great.
I get home from holiday and go for my check on the 3rd only to find my INR is down to 1.5; for it to be ‘safe’ whilst being treated for a clot it should be between 2 and 3. No problem they say, we’ll up your daily dosage of warfarin and see you again in a week. So I head back the next week and my INR has only increased by .1. Now I’m just frustrated and upset; I’ve changed nothing in my diet and they insist that the fact I’m walking a lot more again wouldn’t affect it (though some of the anecdotal stories I’ve seen floating around the internet would suggest otherwise). So they upped my dosage again, asked me to go back on Monday (only 4 days later) and have also told me I need daily injections of clexane again (another anticoagulant that they put you on until your blood first gets into the correct INR range to ‘keep you safe’). I’ve only just got rid of the bruises from the first lot 6 weeks after I stopped having them.
So a few things that I now have on my ‘just in case’ list:
- I always have my mobile phone near me – ok so a lot of people would have this anyway but I don’t. When I go to bed I leave it in another room. Most of the day it’s on silent. Since diagnosis however it has permanently been on loud ringtone and stays by my side; if someone rings me I want to be able to answer so they know I’m still ok and don’t panic. Which leads to:
- Pointless responses to messages – if someone texts me, no matter how little it requires a response, I will reply. Even if it’s just an “Ok”. That way they know again that I’m still concious/alive and I don’t get any sudden visitors checking up on me for no reason.
- Work laptop at home – when I couldn’t walk at all I was working from home and have only gone back into the office this week. I took the laptop back into the office on Tuesday (I use a desktop there) as I thought as I was ok sitting there that I wouldn’t need it anymore. I’m still going into the office but I brought it back home with me again on Friday “just in case” I suddenly find working from or getting to the office difficult.
- Crutches – I’ve had some crutches for the last 6 weeks from my original clinic. They gave me a number to call when I’m done with them and they’ll pick them up. I was considering doing that this week as they haven’t been used for 3 or 4 weeks now but I’m going to hang on to them for a while, probably until I finish my warfarin treatment. If my INR can relapse it’s very possible that my leg could just swell up again and I’ll once again be unable to walk.
- Medical tag – I bought myself a medical tag from eBay engraved with “Warfarin”. All warfarin users are given a yellow book that tracks their details and dosages which they should carry at all times but my reasoning is if I’m in a huge accident and am unconcious, bleeding, any paramedics who arrive on the scene are not going to stop to check my bag for a yellow book before treating me. If they are trying to stop me bleeding/deal with any injuries however they might just spot a dogtag round my neck.
- Unlocked doors – this was more at the start of my treatment and I now lock them again but to begin with I was leaving the bathroom door unlocked any time I went to the toilet or showered. Ours is easy to unlock from the outside if it was necessary but I wasn’t taking any risks in case I fell over from my leg not working or if I did happen to start having a heart attack.
- Dietary restrictions – the doctor tells you to keep your diet much the same but to avoid certain things. Vitamin K is the antidote to warfarin and is commonly found in leafy greens so you can have what you normally would (say you have a bit of broccoli twice a week) as the warfarin dosage will already be working with that but don’t lower or increase it. Same with alcohol. So I’m being very careful now and if I eat out I’ll avoid anything with leafy greens in. Luckily I drink maybe 2 or 3 times a year anyway so I’m quite ok with not having alcohol but the other week round my friend’s house I said no to even one drink. Just in case…
- Compression stockings – on my flight over to France to my parents I bought a pair of flight stockings from Boots because while I have my made to measure stockings for the affected left leg I didn’t want to risk getting a clot in the right leg. Highly unlikely on a flight that’s only around 1 hour 15 minutes but you never know. Wearing compression stockings on your affected leg is a doctor’s ‘just in case’; it is recommended for 2 years after diagnosis to lessen the likelihood you’ll get Post Thrombotic Syndrome which is basically lifelong pain in your leg.
- Clexane – I was so lucky in a sense with this because I had some clexane injections left over from my initial treatment and had been about to take them to the pharmacy for disposal on the day they said I needed to go back on them! So I think from now on until my entire clot treatment is over I will keep all of those medicines. I have also had to learn to do it myself and also get Niall to do them for me as before the clinic were doing it due to me not being good with needles but now I’m at the hospital clinic that isn’t an option. They won’t let me come in daily to get it done and I don’t want to go and wait for hours at the walk in centre so I am going to man up and do it myself (probably only occasionally, Niall can do most of them for me!)
- Taking my warfarin in my bedroom – warfarin is used in rat poison so I don’t want this anywhere near my degus! I won’t have it in the room they’re kept in and I make sure that on a night I feed them before I take my warfarin so no traces of it can possibly get near them.
I hate having to have this mentality as I’m a very positive, happy go lucky sort of person usually but the complications can be so severe that it’s not worth any risks and I don’t want to panic any of my friends and family if I don’t have to either. I’m sure there are plenty of other things I think of ‘just in case’ on a daily basis too.
Any other clot sufferers out there with a ‘just in case’ that I’ve missed?