Back to work...

Returned to work today after a month away due to clots etc... Was nice to see some familiar faces but a little weird returning to the same old same old... Not that I'm complaining, things getting back to normal is all part of recovery I believe.

Although somethings are not quite the same.

I'm still having a problem with the clot on my sternum. I went to get my INR done again today and when at the anti-coag clinic I popped in to see the senior anti-coag nurse. (Super person she is. Very helpful and very friendly.) I pointed out that there seems to be some clot clearing near the top, but at the same time it appears to be growing at the bottom. This doesn't seem to make sense since my INR has been above 2 for well over a week now. I mentioned it to my GP on Monday, she admitted it was a little bit past her medical knowledge on haematology. I appreciated her honesty. So, I have another appointment next Monday with the haematologist at the main hospital. It's the same guy I saw a few weeks ago. Last time we discussed it he suggested that it was probably a further development of the collateral veins to the sides of my ribs and kidney area. This I took as gospel at the time without considering that the collateral veins I already have are soft, this thing on my sternum is very hard and bobbly. When I wrote about it last I said it was about 5 inches long. Now the top three inches seem to have broken down and a further three inches have added to the bottom. It now sits just above my navel. aaarrrggghhhh. I hope to get a more detailed answer on Monday.

The other thing that was a little different today was my stamina. Prior to being off work I used to take my self for brisk 30 minute walk around the hospital I work at each lunch time. I did this again today. Phew did the leg ache.... I guess I need to take it a little easier tomorrow.

All in all I am feeling a lot better than I have for weeks. Baby will be here end of next month, some builders are coming to build a porch this month and the baby room will be sorted in the next couple of weeks too. Lets just hope this chest thing is not anything more serious. :-)

INR up to 2.... hooray I think...

Had my INR done again this morning. Finally up to 2. So no more stomach injections, at least for the moment. Currently on 9mg of warfarin a day in 3 x 3mg tablets.

I have noticed something this time around. I don't seem to be feeling any sickness shortly after taking the warfarin like I remember from the last time I was taking the drug. I am now not sure how much of it was psychosomatic back then...

Anyway, have had an ok weekend. Some friends I have known for years popped over yesterday for dinner. I knew the girl of the couple when I had my first DVT's 8 years ago. She very much remembered my previous episode so there was no need to go through the whole story with her. Which reminds me. In my last post I mentioned about re-telling DVT or warfarin stories, and how it would be easier to say you broke you leg. Well, a funny thing happened this morning at the hospital. I bumped into a colleague/friend from my work (I work in the hospital where I have my INR managed). Had a quick chat, and told him about my basic condition without going into too much detail. He replied with 'wow, would be a whole lot easier if you simply broke your arm or something'. I rest my case.

I'm still off work at the moment. Not sure how I feel about it. I'm very much appreciating the R&R but starting to go a little stir crazy I think. The pain in my leg and chest has eased greatly, although too much activity brings a throbbing in both places. Doctor has signed me off until the start of next week but I had hoped our occupational health department might see me sooner and ok me for an earlier return. Will need to call in to the office a bit later and see what the score is.

For the past week or so I have been feeling very much my self again without too much of the anxiety I suffered for the first two weeks. That is apart from last night for about 2 minutes. I very much hope this was just a case of me being a little bit of a hypocondriac, but I started to feel little sharp pains in my chest. As soon as they started I could feel my breath becoming a little short then slight panic set in. I gave it a few moments to properly assess how I was feeling. Sharp pain passed and breath same back to normal. Not sure if I should act upon it or not. Feel totally fine this morning.

Oh and last point for today, the bumpy clot on my sternum feels like it is starting to breakdown. Still quite lumpy but smaller for certain. Lets hope it clears totally. I don't think I like the idea of a lumpy sternum for life.

INR number 3=1.5

I had my INR measured again today. Still at 1.5! same as it was on Tuesday. So still on the lovely stomach injections for the weekend a higher dose of the old warfarin and back in Monday morning for another reading.

They managed to get my results back to me within the hour today which was good. It took over two hours on Tuesday this week. Still need to look into the self management option. As soon as my INR seems to be stable I think I'll start with the questions and the saving of the £400 for the machine.

I tell you I have never read so many magazines in my life. The anti-coag clinc has loads of them. Some new and some from 8 or 9 years ago. Today I was reading about ex b list celebs in a copy of Hello! magazine from November 2001. That was the year I had my first DVT's.

I also went to see a good friend today who had a knowledge of my DVT history but new nothing of the the past few weeks. It was good to talk over coffee and tell her the issues at hand. Made me feel a little more comfortable about it.

But its a strange process. I don't like having to tell the same story over and over to all people. Its fine when it's the first few people like today, or onto this blog, but I know a week from now when I'm back at work and wanting to get on with life again I'm going to be blighted with people asking if I'm ok and what happened? I know its because they do sincerly care but it would be so much easier to say I broke my leg and was in traction for three weeks. Instead you need to give just that little more detail about what is wrong in the long term, taking the warfarin etc.. at which point some smart alec shouts 'oh you mean rat poison, thats what they give rats you know' as if that helps. I know that's what they use to kill rats, why do you think the amounts in my body have to be monitored so carefully? and really, do you think saying that to someone who has been told they need to take this particular drug for years if not for life is going to make them feel any better? As you can tell I have been through this process before...

I'll stop the rant....

The first days of the rest of my life...

Stomach looks like its had several rounds with a boxer. I've started getting used to the haparin injections, sometimes I get it just right and feel virtually nothing other times I seem to hit a tender spot which flippin hurts. That's when the bruises start. Oh well, it's worth it for the piece of mind while they try to sort out my INR levels.

I'm still off work at the moment due to being quite uncomfortable in both my leg and across my chest. Although each day is better than the last.

Had my second INR reading yesterday. Started at 1.1, now at 1.5 after several days on both heparin and warfarin. Whilst at the clinic I spotted that the anti-coag nurse had a INR self monitor on her desk. I've done a little research over the past few weeks and have discovered that there are at least two different machines that cost around £400 and allow you to test your own INR levels at home. So when I spotted one on her desk I took the opportunity to ask her about NHS support and for tips on getting hold of one. She gave me the address of a website called anticoagulationeurope. Here I found all sorts of info on anticoagulation, using home machines as well as some interesting testimonials from people who have been using the home testers for months if not years. She also mentioned that she thinks the local PCT does support the use of the machines and will provide test strips under prescription.

It's really motivated me to look into it further. One of things that has been bringing me down was the thought of getting my INR checked at the hospital possibly every week for the rest of my life. Thats quite a big chunk out of your life sat in the anti-coag clinic waiting to give your sample, then waiting to get the results. What I really want to be able to do is self manage under guidance if at all possible.

It seems the most popular machine is manufactured by Roche and is called the CoaguChek System. Click here for more information and details about supplies etc... . Seemingly lots of people have opted to talk about the CoaguChek system online. A quick Google search provides many many links to discussion forums and reports on trials of the system.

p.s. I need to remember to take the pills at a regular time. I haven't missed a dose, but keep forgetting around 6-7ish in the evening and only remembering after the little lad has gone to bed. I guess that is what is vastly different this time to last. We have a kid and one on the way. We had a chat with our son about syringes and medicine and what to do if he finds any lying around the house. I was very pleased to hear him say immediately that he would tell Mum or Dad. Even still, both the syringes and the warfarin are in the highest cupboard in the kitchen.

The last few weeks...

So here is the crunch. Here is why I started this blog. It has taken a little while to get here but I think the back story is relevant to help understand what happened at the start of September 2008.

It started with a cramp feeling in my right leg. Nothing too serious, thought I could walk it off, but this stayed for over a week and was getting more and more painful. Then came the swelling in the inside of my calf muscle. Then came the realisation that this could be a clot.

I made a promise to my wife several years ago that if anything ever happened to me that I thought was related to a blood clot, that I would seek immediate medical attention and not do the 'bloke' thing of 'sitting it out cause it will make its self better eventually'. (Didn't do that with the ulcer admittedly, but that was a skin alignment and not clot related.) So one evening I told my wife I would make an appointment with the GP for the following day. The next morning the swelling was worse, noticeably red, more painful and hot to the touch. I then decided to call NHS Direct to ask if I should see my GP or go to A&E. NHS Direct advised me to get a blood test done at a local clinic and by-pass the 4 hour wait in A&E. This I did. The next 3 hours I spent waiting to hear what the results were. I went back to work but could not concentrate at all. Eventually the phone rang and I was told the test suggested that I had a clot. I actually broke down in tears in the office for a moment. The tears totally took me by surprise, although its maybe not that surprising when you consider what has happened in our family over the past 6 months. (More on that later I think).

I actually work in our local hospital and was in a position to go straight to the anti-coagulation clinic. I was seen within 20 minutes and had taken my first low molecular heparin injection to the stomach. The anti-coag nurse gave me a box with several more syringes in and sent me on my way with an appointment for an ultrasound and with the haematologist to follow. She also at this time advised me that warfarin for life was almost certainly on the cards.

The ultrasound confirmed that there was indeed a clot in one of my collateral veins in my leg.

I administered the injections as advised which took me up to the weekend, then on the Friday evening I noticed a lump on my chest towards the bottom on my sternum. Thought it a bit weird and decided to keep a watchful eye on it over the weekend. By the Monday morning it had grown to 5 inches long at least, from about nipple height downwards and was considerably painful. I had not mentioned anything to my wife at this point as I wanted to get more information about what it was and what could be done to fix it before I spoke to her.

On the Monday I called in to work and said that I was taking my self to the anti-coagulation clinic first thing and would give them an update as soon as I could. I was extremely anxious and to be honest had started to think negative thoughts about the possible outcome. Back in April this year my Dad died suddenly from a massive pulmonary embolism. So developing new clots myself so soon after his death was not helping. Developing clots in other places other than my legs had sent my imagination haywire. I really did start worrying about what my wife would do if the worst happened. Oh and just to add to the tension, we are expecting our second child in November this year. So as you can imagine I was not at my best.

The anti-coagulation nurse kindly negotiated a consultation with a haematologist that afternoon. He reassured me that the clot in my chest was not something to be too worried about since I was now back on the heparin injections nothing more was likely to happen with it. We discussed the use and risks of warfarin as well as the new drugs that are expected to be on the market within the next couple of years. This reassured me a little as I know there is a 3% risk per year that you may suffer from a large bleed of one kind or another whilst on warfarin. I left feeling concerned but reassured. The doctor was extremely blunt, factual and to the point which is how I need to take these things on board.

I went home immediately to speak to my wife. I told her all the news, apologised for not telling her about the chest clot and discussed lightly how the warfarin will stop this happening again and that other drugs will be available soon. There were tears and hugs. The memory of what happened to my Dad is still far to strong for this to not have a serious impact on all of our emotions.

The following day I went back to the clinic to have my first INR measurement for over 5 years. The first of no doubt hundreds and hundreds of measurement's during rest of my life.

GP's, Ulcers and Compression Dressings

So why all the fuss all of a sudden? Whats been going on over the last 5 years with regards to my 'bad legs'. Well some stuff did start going a bit wrong 3 years ago. I had a scab that had not totally healed for nearly two years. It stemmed from a tick bite in Botswana. One day I picked it. Oh boy, what a mistake to make. It soon started to fester and become a bit of a hole in my leg. I lived with it for a couple of weeks and tried to self treat with clean dressings, antiseptic wipes etc... but over the coming weeks it became incredibly painful. I ended up going to my GP's, (my regular GP was not there at the time, so I was seen by a trainee GP) who advised me to see the nurse for a clean dressing and return in a couple of days. I continued to do trips to the GP practice for fresh dressing from the nurse for several weeks. At no point did anyone mention ulcer to me. Eventually, after one of the nurses applied too much of a particular compound and caused serious maceration of the tissue, I was referred to the local ulcer clinic.


I waited, and waited and waited to be seen but no appointment came. By this time my ulcer had grown to about 6cm across. I was off work and had been taking large amounts of over the counter pain killers for months just to get by.


The first image shows the ulcer in late April two weeks after my initial visit to the GP. The second was at the end of May. It continued to get worse and worse until eventually in August 2005 I was seen by the ulcer clinic, some 5 months after my initial consultation with the trainee GP. 5 MONTHS. In that time a small wound the size of 5p coin grew to the size of tangerine. The ulcer clinic started me on compression bandages and amazingly within a couple of days the pain had all but gone and I was able to return to work. All in all it took the best part of 3 years for the ulcer to heal. If it had been correctly treated in the first place it may have taken weeks instead. I now have a huge scar on my right leg as a result of this episode.

Life after DVT - Prologue Part 3

Having come back after a few days and re-read my last two posts, it has dawned on me that they are quite lengthy. If you managed to get this far, then thank you for taking the time to hear my story. My story is important to me since those 6 weeks back in 2001 changed my life for ever.

Every single day I get glum feelings when I think about how DVT has changed my physicality, energy, appearance and functionality. I try not to dwell on it at the time. I simply think sod it and get on with what I was doing.

Any way, I digress a little. I'll also try and wrap up the back story as best as I can.

So, now being at the point where I can walk again I was then able to return to work. I was fortunate to have very understanding management who supported my returning to work when I felt ready. If I remember correctly they allowed me to come back on half days for the first week followed by full time again from then on.

It was around this time that my wife informed me that we needed to attend a medical prior to our leaving for Botswana. My wife was due to start working as a teacher in Botswana in the September after my DVT's. We had been working towards and looking forward to the move for almost a year. Anyway, my heart sank. Of course a medical would be required, but I honestly did not think I would be allowed to accompany my wife considering the seriousness of my illness just months before. So I attended the medical and the report was sent to the British Council who were organising the UK end of the teaching post placements. The British Council got back in touch wanting to know more about the condition and asking for an opinion from my haematologist as to whether they thought a move to Botswana would be possible?

I remember speaking to my haematologist about how important this trip was for my wife and I and how much we had been looking forward to it. But non the less, it was ultimately going to be her medical opinion that would change the direction of our lives. The haematologist send an email to all clinical staff asking if anyone had any experience of life in Botswana and what level of medical care would be available? Apparently she received a couple of replies from medical staff who were from Botswana. The answers they gave convinced my haematologist that the move would be risky but could be managed if I found an appropriate place for INR checks. For me this was an amazing step to take. She could have simply said no, the move would be too risky, at which point the British Council would have pulled the plug for both of us.

Shortly before we left for Botswana I recieved a letter in the post from the hospital. Apparently one of my blood samples had been taken for genetic testing. Results had come back and apparently I have a genetic condition that makes me slightly moore prone to clotting. It's called 'Heterozygous Prothrombin Gene Mutation' or 'Prothrombin 20210 Mutation (Factor II Mutation)'. Click here for an interesting article on all aspects of this condition.

From that point on we never looked back. We moved to Botswana in the September and set up a new life in small village called Mathangwane near Francistown. I would get me INR checked once in a while in the local clinic, but to honest I did not at the time understand the variability of warfarin. I think I was tested about 6 times in the two years I was there. I now think I was lucky that nothing untoward happened.

During our time in Botswana I never really had cause to struggle due to damage to my legs. On the odd occasion I would find myself needing to climb a steep hill or walk up dunes. It was really only then that I felt any discomfort.

In April 2003 we returned to the UK 6 months pregnant. It was at this time I stopped taking the warfarin. I had been advised to take warfarin for at least two years. I think I took it for two years and a few days. To be honest I simply stopped doing anything related to reducing the risk of a repeat episode. I got on with my life, worked hard at my new job and enjoyed bringing up our son. I kind of secretly knew that in the furture, maybe when I was in my 50's that further complications might arise. But I was certainly kidding myself at the time that I needed to do nothing.

If you happen to have a question about what happened to me and the process of recovery I went through, please feel free to post as a comment. I will endeavour to get back to you as soon as I can.

Life after DVT - Prologue Part 2

So having eventually managed to get my self in the right place to be treated and after ultrasound being diagnosed with the bi-lateral DVT's I then started on the long recovery process. Bearing in mind I could not walk more than 3 or 4 steps without crippling agony bringing me to the floor.

I remember the haematologist telling me the morning after my arrival to the hospital in Liverpool, that I would be right as rain again in just a couple of days. When a week had past and I had seen no improvement I really did start to worry.

I was still on the low molecular heparin injections in the stomach. (They are not nice, and don't half leave a bruise if not done well.) I was sat in bed at home feeling mighty sorry for myself. My wife had returned to work and a guy who we house shared with was looking after me when he wasn't in University.

I started to fall into a bit of a depression. My wife and I were supposed to be moving to Botswana the coming September, this was now the end of April and I still could not walk. I had just married the love of my life and believed I may be crippled for life. How crap was that going to be for her. I had always been fairly active, martial arts, jogging, archery, now I was pissing in a jar at the side of my bed because I could not bear the pain of taking myself to the toilet. I also could not get out of my mind the fact that I was still at high risk for a PE (Pulmonary Embolism - Blood clot of the lung). To be honest this was without doubt the worst time in my life. I had been married two weeks, was due to move abroad for a new life. This should have been the best times of my life.

On one particular low day I ended up calling my Dad and in a very tearful state I dictated to him what I would want for my funeral. I mean for goodness sake, what must that have been like for him.

It was really around this time I came to realise that the depression was not going to help me. It was the realisation that all these people around me who loved and cared for me were doing all they could to make me comfortable, relaxed, fed, toileted, shaved etc... It just seemed wrong to feel sorry for myself. I know I had so much to look forward to, I wasn't prepared to lie down and let this 'medical thing' stop me.

I moved from the bed upstairs to the sofa bed in the living room. This helped as I was in the thick of the house and not closeted away upstairs. The bed was not the most comfortable and the trek to the toilet for those times when a jar won't do, were significantly more painful. But it was worth it.

The next couple of weeks now seem a bit of a blur. I slept, ate, watched TV, used the Internet, slept again and so on. I started to be in less and less pain for the trips to the loo. I was able to make it to my regular bed upstairs in the evening and things were looking better. After about 4 weeks I risked a venture outside. It was a nice sunny day and our local pub, a mere 40 yards down the road had a beer garden. I hadn't had a drink for weeks and thought it would be a great celebration to go to the local and drink a pint.

I got dressed in regular clothes, rather than the pyjamas I had been wearing for weeks, and opened the front door. I was absolutely terrified but confident. I soon realised that a quick walk into the kitchen to get a drink, or a trip to the toilet is massively different to trying to walk 40 yards down the road. I was in agony, I was managing 10-15 steps at a time before I would have to stop and rest at the kerb side. But I was not going to give up. My wife would help me up and hold my hand for each stretch. I think it may have taken us 15 minutes, but we did make it to the pub. And believe me, that was the best pint of bitter I think I have ever had.

This was a serious milestone for me. I was walking, and more importantly I was walking to do an independent action. From that point, I walked more and more each day. And each day I was able to take more steps before needing to stop and rest. Before long I was walking up to and possibly further than a mile in one go. And then I noticed something peculiar happening to my upper body that put the fear of god into me. I was developing what looked like serious clots on the outside of my rib cage, down the sides of my waist and to the sides of my groin. I immediately went to the Doctor who examined me. It was not clots forming, but the formation of collateral veins. Collateral veins are veins that have changed their flow capacity to compensate for damage or blockages to other veins in the body. In my case my two deep veins in my legs. So, it seemed that the exercise was very much helping, albeit with the loss of a regular looking torso. Not pleasant at the time, but a manageable issue if it was helping me walk again.

Life after DVT - Prologue Part 1

Why have I decided do this now? Yesterday after 10 days of tests and trips to the hospital, a haematologist has advised that I have to take warfarin for the rest of my life. Currently I am 34 and have been plagued with 'bad legs' for the last 8 years.

Here is my story

Just over 8 years ago I was diagnosed with bi-lateral deep vein thrombosis. Which is deep vein thrombosis in both legs at the same time.

It happened because of a long coach journey from London to Prague in the Czech Republic. The journey lasted 24 hours with very few stops. When there was a rest it was for no more than 10 minutes at best. What also didn't help was the fact we were on my way to our honeymoon and my wife and I had both consumed large amounts of alcohol in the 2 days prior to the journey. On top of that my wife had for some considerable time fallen asleep across my legs. Oh and just to make sure a DVT was a dead cert, I was at the front of the coach behind the driver meaning I had no space under the next seat to stretch my legs out.

The effect did not hit me straight away. In fact we were lucky that we had several days of honeymoon bliss. That was until I started to feel a bit ill, started being a bit grouchy and started having problems walking any reasonable distance. At this point I wasn't too worried, and simply put it down to being very tired after the wedding, the journey and the large amounts of food and drink being consumed whilst on honeymoon. It wasn't until I awoke one morning with two very blue and very swollen legs that I suspected that this was a serious problem.

My wife if half Czech and so we contacted some family near by who helped to get an appointment at the local hospital. I was given a rather painful injection in the back side and advised to either go home to the UK for tests in a UK hospital or stay in Czech for equivalent tests. At this point with know one having a clue what was wrong, I opted to get a last minute flight back to the UK. Ok, so flying with no form of anti coagulation or compression stocking whilst suffering from such serious DVT's could have been a death sentence for me. I was lucky...

On my arrival at about 4am to the Royal Liverpool Hospital A&E department I was seen very quickly indeed. Bearing in mind that I had now lost the ability to walk all together. The registrars on duty at the time were to say the least a little mystified as to what was wrong with me. Initial guestimates included a clot in my aorta. This they both believed to be a fatal condition and advised me of such. By this time I had been married about 6 days and was put in the position of taking my new wife to one side, well she pushed me in the wheel chair, and telling her that I may not make it through the next couple of days. Not a nice thing to have to do...

Well, lucky for me the registrars were both wrong. I had actually presented with bi-lateral DVT's with almost identical level of symptoms in both legs.

Ok, so that's the basic story up to my being in the right place to be treated for this horrible and life threatening condition.

I'll continue with a couple more entrees to cover the remainder of this particular chapter and will then push on with regular updates of my current situation.