Monday, 12 March 2012

Deep Vein Thrombosis and Pulmonary Embolisms: A Patient's Story

Deep Vein Thrombosis

I have certainly had an interesting few weeks that have involved a lot of patience, crying, procedures and pain. I was discharged from hospital on Saturday after being stabilized from a blood clot that runs from my belly button to the toes in my left leg (DVT) and a blood clot in both lungs (pulmonary embolisms). I still have a long way to go before I'm back to my normal self but this episode is now an extra piece to my 'health puzzle' that will hopefully provide some missing information as to why I have been so poorly these last few years. 

I've got four teams of doctors working on my case at the moment: hematology seem to think I have a blood disease; rheumatology think I have a chronic inflammatory disease; my vascular surgeon is looking after my leg making sure I don't suffer any extreme long term muscle necrosis (dying muscle); and finally my GP is taking over all my blood tests and day to day problems that I might have, such as my Clexane injections or pain management.

I'd like to share my experience of the last three weeks just in case there happens to be anyone else out there who is looking for information or just needs to know that there is someone else who was just as scared as they are now. I'll give you a heads up now, there are some quite personal procedures that I had to go through and I will be sharing all those details and tips on how to deal with some of the issues you might have.

My story is split into multiple parts so at the end of each section there will be a link to the next one.

How Did it Start?

My story begins on Sunday 19th Feb 2012 where I woke up with a sharp pain in my hip. I thought it was a trapped nerve that I sometimes get so I rested up and took some ibuprofen, however, the next morning my leg was swollen, red and hot (classic symptoms of a DVT). I called up my GP and was told to come in straight away to have it looked at. My GP took one look at my left leg and called the hospital to book me in for a Doppler scan which takes a look at the arteries and veins to looks for blockages - the arteries were fine but they found a big blockage in the vein in my groin. That news was a bit of a shock for me as I was sure that I couldn't possibly have a blood clot because I was so young but I was sent straight to the Ambulatory Clinic where they deal with DVTs.

Doppler Scan showing only a little blood flow (the red spots).

The AMU (Ambulatory Clinic) is an odd place, it has these great big reclining chairs, tiny little tables and uncomfortable chairs for your friend/spouse/whoever is there with you, yet on the other side of the room is a fully functional hospital ward. It is sort of nerve racking because you get the feeling that although you've just come in for a "routine check-up" it would be so easy for them to just say "I'm sorry but we need to hospitalize you because of X, Y, Z, and you can't go home". That by itself was scary enough for me.

After checking in at the reception I had a lovely student nurse take me to an arm chair and started to take a detailed family history whilst another nurse was preparing to take my blood. As far as we could tell I was not a candidate for a DVT and had the nurses and the doctor confused, but they accepted the fact that I was here and got on with the job. By the time they had taken my history I had already been taken off of the ibuprofen, given Tramadol and was also taken of the combined pill as that increases the risk of blood clots (that was the one and only small factor that was noted in my history). I should also note that I was still in a lot of pain and the only thing that was effective at relieving the pain at the moment was a heat pad that I had to leave at home. Anyway, time passed and the doctor came in with my blood results and explained that the clotting factor called INR was very low (my result was 1 and normal is between 2.5 - 3) and that was causing the DVT problem. She was very nice and went through all my paper work with me, explained that I needed to have Clexane injections (they help to stabilize the clot, thin the blood and helps the body keep the clot in place while it begins to dissolve it) and take Warfarin (another blood thinner and can help to dissolve clots) for the next 6 months to clear up the blood clot. I was given my first series of injections in the AMU, told that the District nurse would be round at 9am to do my next injections and then sent on my merry way with a goody bag of Warfarin, Clexane and a sharps box.

Is This Recovery Or Hell?

The next morning: dear God I have not felt this bad ever! I had a rough night trying to get into a comfortable place to sleep and it seemed like everything took an extra 500% effort to do - probably because the fatigue had been aggravated by the extra exertion. I couldn't walk, I eventually ended up crawling to toilet when I was absolutely desperate and running my poor partner ragged getting me drinks (Tramadol and Warfarin made me so thirsty I thought I hadn't had any liquid for a week!). 

9 am came creeping around and I managed to crawl on the sofa so that the nurse could do my injections and boy did they hurt! It's not the needle going in that hurts or having the fluid injected, it was the horrible burning, stabbing pain about 30 seconds afterwards that brings tears to your eyes - it was certainly a good distraction from the pain in my leg. After the nurse left I managed to hop to the toilet (it's only a short way to the bathroom from the living room) and I was wheeled in my office chair back to bed where I slept for most of the day and night except for when I needed to take my pain killers (which only took the edge off) or top up my heat pad.

Wednesday was pretty much the same but the pain was not getting any better and I also had to give some blood to the nurse for an INR check so that they knew how much Warfarin to give me later in the day - they called in the evening with the altered dose. By now I was a little concerned about the pain, surely it should be a little better or at least tolerable by now after three days of pain killers and blood thinners but it wasn't - I'll ask the nurse in the morning.

9 am, hmm the nurse is late. Well they said if it's a busy day then it could be up to 10.30am so I'll leave it a little while. 10 am I get a phone call to say that she can't make it and that I have to get into my surgery for my injections and blood test before 12.30pm. Well at the moment that's like asking me to fly, I'm bed bound and even going to the toilet is causing excruciating pain; call me back in 15 minutes to see what I can do. My partner called the AMU and explained the situation and before I know it an ambulance has been ordered for me that afternoon. Apparently with a DVT the size that they found in my groin should not leave you bed bound and exhausted from pain so there must be something else wrong. I pack up my bag and wait for the crew to turn up.

Off to the Hospital

15.30 pm and two wonderful ambulance technicians turn up to asses my situation. They went through all their standard questions and awareness tests and at the same managed to keep a smile on my face even though some of the things they had to do hurt like monkey (that's my cleaned up phrase for hurt like a *******... I'll leave that one to your imagination). After 15 minutes they decided that I had to get to hospital so I was given laughing gas - brilliant stuff that makes you feel drunk, it takes the edge of the pain but it also makes you not care as much - and strapped into a special chair that would take me down the flight of stairs from my flat. I was then nicely strapped up onto the bed in the ambulance and taken back to the AMU. 

So that is my DVT origin story if you would like to see what happens next then please keeping reading. See here for Part 2a of my hospital stay.

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