Tuesday, November 13, 2012

Deep Vein Thrombosis: a personal account

When I was first diagnosed with DVT back in April, I was advised by the doctor to elevate my leg for two weeks. My first thought was "No, I definitely can't do that - I have to hand in an essay in 10 days time!" so it is with a great deal of bitterness that I have gone through these last seven months, growling at how naive I was to believe that all my problems would be fixed in a fortnight. My Dad would, and still does, say to me "You'll be better next week" because to begin with, nobody really realised that this would be a long-term affair. I fell ill in the middle of the Easter holidays of the second semester of my final year at university and I was convinced I would be able to go to Southampton and do my final exams at the same time as all my friends. This did not happen!!

DVT is something that you hear about occasionally when you go on long journeys and are encouraged to do leg exercises and something that you gloss over when you look at the leaflet that comes with the Pill. I certainly had not ever realised what it actually means to have a clot in a vein (or three), nor was I really aware of DVT as a condition.

The charity Lifeblood wishes to raise the profile of thrombosis problems in the eyes of the public and researchers. This arguably ought to be more high-profile as I had not heard of it before I started googling my condition a few months back. The purpose of this blog post is to raise awareness of DVT, its symptoms, its causes and what you can do to prevent it. It does feel a bit strange writing about it online and I do not intend to go into the really personal details of my experiences but think it is important that people can recognise the symptoms should they ever come across them.

What is DVT?
Deep vein thrombosis (DVT) is a blood clot that forms in a deep vein. Veins are those very helpful blood vessels which carry blood back to the heart from the rest of your body. If a vein is blocked, the blood obviously cannot travel back up to the heart. The pressure that this causes and the fact that it is deoxygenated blood causes the swollen, purple appearance of the leg. My clot is in my iliac and superficial femoral veins. This is uncommon. DVT is commonly found in the calf where, I have been told, it can actually go unnoticed but recovers quickly, especially in a young person. Unfortunately, the higher up the body the clot is, the more dangerous it is and it is a complication called a Pulmonary Embolism (PE) that you need to be wary of. This is when the clot breaks off from its original position and travels to the heart/lungs.

The clot may happen without you realising for some time. My first symptoms were lower back and hip pain, for which I stayed in bed and rested. It was my Mum who insisted on booking me a GP appointment for the next day. I was reluctant to go because although the pain prevented me from walking comfortably, I thought, as with a lot of other pain you get in everyday life especially as a girl, it would subside quickly. When I woke up the next morning, the pain had extended to my left thigh. I was given a lift to the doctors surgery where I explained my symptoms - at this point, back ache and limping. The doctor suggested that I visit a GUM clinic at the local hospital for some bizarre reason that I will never fully understand. I was fuming as I just knew that something was not quite right. It was a junior doctor who was observing the appointment that asked whether my leg was swollen at all. At this point, it wasn't and it was only later that I understood the importance of this question. I left the GP wondering how on earth I was going to explain to my Dad where I needed a lift to!

On my way back, I had to walk up the road to my house by myself. My left leg felt very heavy and I was walking at an unusually slow pace because every step was very difficult, especially as it was uphill. I was in tears from the pain and collapsed at my front door.

It was my sister who noticed that my left leg had turned a shade of purple and all of a sudden, having now put pressure on my leg from walking back, my leg had ballooned. My knee and foot had white spots on them and these were the parts which had swollen the most too, perhaps to double the size they normally are. The whole leg felt very tense.

I was driven to A & E after some persuasion from my family that this was something worthy of their time. Earlier that week I had seen an advert on television, made by the NHS, encouraging the public to ensure that they are using the right healthcare service for their medical problems. All I could think of on my way over to the hospital was a hope that I would not be wasting NHS time by going to A & E. Had I known what my symptoms were indicative of, or understood the gravity of DVT, I would not have worried.

The NHS website states the following as symptoms of DVT:

  • pain, swelling and tenderness in one of your legs (usually your calf) 
  • a heavy ache in the affected area
  • warm skin in the area of the clot 
  • redness of your skin, particularly at the back of your leg, below the knee
Symptoms of a PE:
  • breathlessness, which may come on gradually or suddenly
  • chest pain, which may become worse when you breathe in
  • sudden collapse

Turns out I had nothing to worry about in terms of whether my case was serious enough to go to A & E for - I was fast-tracked through the waiting room and seen almost immediately. The sight of me and my leg must have been ghastly! My blood gases were checked (seriously horrible nasty needle in wrist did nothing for my phobia of needles and veins) but they were normal. Other blood tests were done which indicated that something was wrong. I then had an ultrasound scan of my leg which confirmed what the blood tests had hinted at - the clot.

Source: www.weheartit.com

I was started on Fragmin injections (low molecular weight Heparin) straight away. These can be injected into your thigh or your tummy because this is where it is easiest to find an area of flesh. When I did a stint in hospital a few weeks after diagnosis, I found out that on some wards (e.g. Women's Health) everybody is injected with Heparin to prevent DVT so it is the same as this but a higher dosage. It stings SO MUCH. I embarrassingly used to squeal in agony every time I had it done. At the same time as Heparin started, I also started my treatment on an anti-coagulant called Warfarin which is sometimes referred to as a "blood-thinner". The Heparin is injected every day until the Warfarin starts to kick in (when your INR is therapeutic); for me this was after 7 days. Warfarin is luckily just tablets but they need to be taken every day at the same time. The dosage depends on what the blood's INR is. This is a measure of how well your blood clots. Patients are assigned a therapeutic range which their INR should always be between to be less likely to have another clot. I visit the anti-coagulant clinic every few weeks to check my INR and adjust my dosage accordingly.

This is the thing that I struggled to grasp for a long time - Warfarin does not target my blood clot and try to dissolve that. It makes all of my blood less sticky in an attempt to dissolve existing clots, but more really to prevent another clot from forming as once you have one clot, you are more likely to develop another.

At the time, anti-coagulation treatment was the only option presented to me. I found out about a month ago from a surgeon that there is a clot-busting injection that can target the clot but this needs to be done within the first week of diagnosis. Whether it was because it was on Easter weekend that I ended up in hospital with my original symptoms so there was a lack of staff etc (which accounted for why I also nearly went home without any crutches) or whether it was ruled out as an option by the right professionals and I was just never consulted about it, I have to admit that I did feel so gutted when I found out that this procedure existed. Apparently there are a few schools of thought on it and it is not common practice to perform it for DVT (upon researching it, it appears that it is used for heart-attacks and strokes), but I was told by both my haematologist and my surgeon that with hindsight this would have been a good option because of my young age. I assume it is more risky for older people and it is older people who usually suffer from DVT. The trouble was that it was not apparent how problematic or extensive my clot was so the long-term Warfarin treatment was opted for. I am the youngest person at my clinic but I have heard of young children who sometimes get clots so it can happen to anybody at any age. It is just more common in older people who may have another of the risk factors too.

In addition to my Warfarin treatment, I had physiotherapy for four months. Initially, physiotherapists do not get involved because there is the risk of dislodging the clot and as mentioned above, this causes complications such as PEs. The physiotherapy I received was helpful in teaching me how to build up my strength and how to recover from my deconditioned body. This is ultimately a very slow process. Seven months on, I have only just been for a short walk without any crutches.

I also sport a very attractive full-length compression stocking which may well be the ugliest thing that I have been forced to wear but it is extremely useful in managing pain and movement because it assists blood flow. It also reduces swelling but cannot be prescribed until the swelling has significantly reduced so you may not receive one for a couple of months. It does all depend on each individual case of course.

There are after-effects of DVT, such as post thrombotic syndrome which can cause long-term problems such as dimples, varicose veins, chronic pain, swelling and redness. The clot may also cause structural damage to the vein, so valve reconstruction is an option that is currently being explored should the clot clear up. Sometimes the valves fix themselves though apparently. The body is very clever sometimes!

If only the clot could just be sucked up with a vacuum, as my Mum says!

  • Inactivity e.g. after an operation, during a long journey (usually 4 hours+)
  • Being confined to bed
  • Blood vessel damage
  • Medical conditions such as cancer, heart & lung disease, infectious diseases, inflammatory conditions, thrombophilia (genetic condition making blood more likely to clot) and Hughes syndrome 
  • Pregnancy
  • Contraceptive pill and hormone replacement therapy - it is the oestrogen that is problematic so progesterone-only contraceptive pills are less likely to cause clotting.
  • Family history of DVT
  • Being overweight
  • Being a smoker
  • Being over 60
  • Being dehydrated
(Source: NHS website)

In my case, it is still unknown for certain what caused the clot which is why it is so important to know about such conditions as they do just happen out of the blue.

It is just so important to stay active. This also goes for post-diagnosis; physical activity is a decisive element in my rehabilitation process. I have been through periods of time where for weeks I would be unable to get out of bed because of pain and feeling unwell from the clot but it is this which sets me back. My physiotherapist explained to me that for every day you spend in bed, you need another couple of days to recover from that and to build up the muscles again. Exercise is just so important in the prevention and recovery stages.

If you fly, wear compression stockings and get up regularly to stretch your legs. Do some exercises sitting down. Keep hydrated.

Don't smoke!

You can find out tons more about thrombosis on Lifeblood's website. Their publications were very informative when I was trying to learn more about DVT.

Source: Google Images

There are a million more things that I could tell you about my experiences but the purpose of this post was not to rant about the annoyances of my condition or explicate the difficulties, rather to educate and raise awareness. Of course, everybody's case is different so what I have written may not apply to every case. A very useful website that I came across when researching about DVT was Daily Strength. There are so many discussion boards on this website to do with different health conditions, which provide support and advice to sufferers and their family/friends. Unlike other internet sources where people complain about their problems in an attention-seeking manner, Daily Strength is a place where genuine advice and reassurance is passed between patients. It has taught me about the endurance required to overcome some obstacles and as silly as it sounds, I felt relieved that I am not the only person out there with this.

I hope this post has been helpful and provided some insight.

Thanks for reading xx

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  1. Beeta, this is an amazing post. It is absolutely awful what you have gone through and are going through, not only all the medical stuff but all the logistics of having to "organise" the medical care which is so exhausting. You don't complain in your post as you write, which makes it all the more moving. I admire you very much and hope so much that your recovery is proceeding, even if slowly. All my best wishes, Maxine.

  2. Dearest Beeta
    Loved your post. It is sad that we often learn about difficult conditions and serious illnesses through the experience of our dear ones and those we love. I can tell you witnessing your fight with DVT was not easy for any of us but glad to see you nearly out and strong.
    The bewilderedness of doctors and the fact that you were the youngest in the anti-coagulants clinic didn’t really help. We didn’t hear the famous phrase “a lot of people going through the same thing” but you took it in subtly.
    This made me realise the hidden strength in you and the determination you showed in getting through the lot, cruising through the final exams, training contract interviews and going to Cabinet Office in that ugly shoe for a week makes me smile, and for a very long time to come.
    The support of your friends in keeping your spirit was great. I remember their special treats in the post and the ultimate happiness you found simply in the shape of Lions and Tigers. I am so happy to see you coming out of the tunnel, and admire the way you have turned the experience into a raising awareness. Well Done! xx

  3. This was a really interesting post to read! I never knew of the symptoms before and I guess I assumed it was something you got if you were older. I hope your recovery goes well and I really admire your courage and determination! xx P.S. I replied to your lovely comment over on my blog :)

  4. Hi again Beeta. I hope you don't mind, but I shared your post with my (online) reading group - you might be interested in the comments. http://ff.im/183E0p Much love, Maxine.

  5. Thank you for sharing such a deeply personal account. This was actually very inspiring. I love this blog and would love ot become a follower if I may :)

  6. I thought I'd respond over here on your blog. I found your blog rather randomly - through comments on a mutual blog that let me to another blog that led me to this one. It's funny how all of our blogs are somehow connected in some day. Much like all of us on earth in many respects. Anyway, I just subscribed to your blog on goodle reader and I look forward to reading your future posts! Feel free to follow mine as well if you wish. Have a beautiful day :)


  7. Beeta, I can definitely relate to some of what you went through. My case of DVT was much less severe, although still scary... and I was very lucky because my flatmate told me to go to the doctor to get my leg checked out... it wasn't swollen, but I felt like I'd pull a muscle in my calf and it wasn't getting any better. My flatmate's Aunt had had DVT, so she knew the symptoms.

    Also my clots were positioned half way between the surface and deep (not sure of the medical terminology), so I only had to have blood thinning injections twice a day for three weeks (they taught me to self-inject).

    I also know I got them because of long-haul travel, so I am super careful on flights, and I'm also conscious of sitting for too long at a desk at work, etc.

    Thanks for continuing to raise awareness. I think you've read my blog about my experience, but if anyone else wants to read about, here's the link: http://kgrahamjourneys.wordpress.com/2012/07/05/my-life-as-a-travel-writer-gone-bung/

  8. Great story! Your page has now been posted within my facebook group: Canada Blood Clot Awareness:


  9. Great post, Beeta. I've never thought of posting about my clots, it's just every day life for me now. Quite sad, really. This is a great resource to help raise awareness of clots in the younger age-groups.

    Oh, just to add... I initially thought that I'd pulled a muscle in my leg the second time around. But as it got worse over a few days rather than better, and I noticed that I was pretty much dragging my leg around, I got suspicious and made an emergency appointment with my GP.

  10. I have found your blog searching for DTV answers. I am just glad i have. It makes me worried that i have similar symptoms of DTV. Just making my mind stronger before i hear the bell.

  11. this has been more than helpful. i was aware of DVT but not the facts. :-( will share it on google +. This post should be read by everyone. xxxxx

  12. Thanks so much for your words Beeta. I was diagnosed with a DVT about 8 years ago without any real symptoms. Glad there are people like you out there working to raise awareness. Fight on!

  13. Thanks a lot for your comment.

  14. Symptoms of blood clots in legs (deep vein thrombosis (DVT) are pain, redness, and swelling.
    Symptoms of an arterial blood clot in the leg are painful and the leg is cool and pale.
    Symptoms of blood clots in the lung (pulmonary embolus) are chest pain, shortness of breath, and rapid pulse and breathing

  15. Deep vein thrombosis (DVT) occurs when a blood clot forms in one of the deep veins of your body,
    usually in your legs, but sometimes in your arm. The signs and symptoms of a DVT include: Swelling,
    usually in one leg

  16. Deep vein thrombosis (DVT) occurs when a blood clot forms in one of the deep veins of your body,

    usually in your legs, but sometimes in your arm. The signs and symptoms of a DVT include: Swelling,

    usually in one leg

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