Deep Vein Thrombosis Awareness Campaign
To Raise The Public's Awareness of D.V.T
Your Experiences
Your Story
Your Feedback
Your Experiences
Your Experiences

The idea behind this site is to share your individual experience with DVT with other suffers. I would personally like to thank the people you have taken the time to add their experiences to these page. You really do make a difference, to all those other people out there who have been through the same thing and each one of these stories has touched me, partly because of what you have been through and partly because you have taken the time to send it so Thank you so much.

This page has now got to the stage where I have had to split it in to two due to the number of your personal experiences you have sent, for which I am grateful.  As each of your experiences is equally important I have created another page on the left hand tab called “Your Experiences” which has the experiences sent to me prior to the start of 2009.

When your stories are put on I will not change any of your own wording, unless necessary for ease of reading.

If you would like to add your story, please click on the link on the left "Your story" and fill out the attached form.

Your Experiences 

Where do I begin? For as far as I can remember, I haven't been one of the most active people. I've never liked sports of any kind and since a child spent most of my time either drawing, reading articles on various topics with relation to science including Physics, Astronomy and Chemistry. At 16 I started smoking and after finishing school here in the UK, I went straight to college and studied Contemporary Popular Music. As you can imagine, that's even more time sitting hours on end with no exercise as I'm trying furiously to grasp what I'm learning and to be the best at what I can do as well as getting with the times and building along with buying my first computer and acquiring the internet. Speeding on towards 19, I finish college and decide to go into I.T. Again, more time studying and focusing on that. At the age of 20, I meet the love of my life and know where I need to be since she's in the US and it's long distance.

Speeding on 3 years later, it's September Monday 6th 2010. I've been having chest pains and breathing difficulties for the past 3 days and didn't get chance to see a doctor for so long because it was a weekend at that time and I didn't think much of it. My grandmother said multiple times my symptoms sounded like Pleurisy and that's what the doctor initially diagnosed me with. I was given Ibuprofen although within the next 4 days things would change. On the 7th September 2010, I started getting pains in my right buttock before it travelled along my leg over the next day or so. I was in an unbelievable amount of pain, I mean I like to think I have a high pain threshold and I don't get so called man-flu. I couldn't walk, I mostly hopped or used an old walking stick that used to be my great grandmother's before she passed away that we kept in case it was needed and the only thing apart from Ibuprofen that helped ease things was heat from a hot water bottle.

On September 10th 2010, it was supposed to be mine and my now fiancé's anniversary. It was cut short by the more intense pains as well as my leg being 2 times the size of what it is normally. My all-knowing mother who came from work said "you look like you have thrombosis". After that she instantly called for a paramedic who also said the same thing. There was no time to pick up belongings, to let my fiancé (by the way, still long distance) know about the situation...we had to leave and my sister as well as my mother accompanying me.

So here I am, a 23 years old male who has had news of something that I thought would never happen to me. I had read about it before but never actually seen a case and even though well aware of risk and other possible dangers...I wasn't scared or particularly worried. I was just more concerned and focussed on getting everything sorted out. In the E.R, doctors examined me and all said the same thing as my mother and the paramedic. They instantly injected me with low molecular mass heparin which I knew was standard and I had to wait for an hour or two for a bed of my own in the "High Risk Patient Assessment Ward" which again, you'd think I'd of worried but didn't. The next day, I had scans done to find out exactly what was going on. Hours later, vascular surgeons and consultants came by to discuss things and what possible procedures would be done. I had to smile and silently cry at the explaining everything I already know considering my passion for all things science including medical conditions, procedures etc but know it's their job, some people are unaware of such things so decided to nod and say yes. They told me that not only did I have a DVT in the right leg but also a massive PE. Alarm bells rang and I thought "oh ****, I could be dead right now...good call mum".

It's now Sunday 12th September 2010. The first parts necessary were done. - The first procedure involved putting a catheter into my leg. - The second procedure involved inserting a cava filter via the neck (jugular) this was done under local anaesthetic and in around 1hr 45mins with no complications. It was rather interesting being able to see them perform it. The next day, I had a screening to see how well everything had gone and it was a green light. So what was next? They performed Balloon embolectomy. This is what it says on the tin. Expanding the vein to allow more circulation via a balloon type apparatus that inflates. This however, was not done under local anaesthetic. It was rather uncomfortable. Nothing close to the pain of a DVT. For the next 3 days, best rest was required and those were the most boring days of my life. No computer, the TV you had to pay for, no cell phone and limited visiting times from friends/family. I had managed to tell my sister to use my netbook to let my fiancé know on the Saturday so that was lifted off of my mind. After the bed rest ended, I was moved to my own little room away from a ward of people who were decades older than me and probably remembered WWII. This allowed me to have my cell phone, stretch my legs a little since I no longer had a catheter or monitored and so as soon as I did I have my cell phone I booted it up, plugged it in on charge and ran Opera Mini, Facebook and YouTube with my earphones in of course (I do have manners and common courtesy). I must add, that while in the hospital I was having my blood taken on a regular basis along with low molecular mass heparin injections every 6 hours and Warfarin.

After being discharged and taken home by a very good and long time friend of mine...I had a steak. Next came a month of still not being able to walk without a walking stick, being messed around by the Department of Work and Pensions and having to go on ESA (Employment and Support Allowance). Now, January 12 2011. It's been months and in the time since I've been a lot more active. I've also been making people fully aware that a DVT and/or PE can happen and does happen regardless of age.

Since I have a large viewer count on YouTube with the educational videos I make...I spread awareness and help that way. My Warfarin dosage is very easy to maintain although my INR level has fluctuated a few times and I never get tired of the blood tests at my local clinic rather than the hospital since its closer. Drinking alcohol isn't an issue since after years of partying in college. I've stuck to a glass of wine for special occasions, no others since 2006. In a month or so, I have to go back to the hospital to find out the results of my partial thromboplastin time back in November 2010 to decide the fate of whether I'll be a lifelong Warfarin user.

On an ending note: Learning you have a DVT can be a scary thing, learning that you have a PE can be more so. Learning of things to come after can seem daunting, or even depressing. But, as long as you have 100% confidence in the doctors, nurses and surgeons who attend to you or if you're a religious person your god/s. Everything, will be fine. A positive thinker is a happier and healthier person...you never get tired of continuous blood tests you can get through it and come out better than ever. If this seems like a long read. I wanted to share my experience in as much detail as possible to let you the reader know, you're not alone.

Michael, Nottingham

I was first diagnosed with a brain tumour, then about a year later had sever auto immune problems which highlighted a blood clot that had surfaced from my hip to my toe! Great, then through testing and because of the sudden onset, found that I had Factor Five. I am currently on between 10 and 14 mg of Coumadin depending on my behaviour of eating. Good weeks when I can stay away from my favourites of green leafy veggie it is only 10mg. On bad weeks when I absolutely cannot stay away it is upwards to 14 and has even have gone to 16mg. I have another tumour. I have a fear of accidents and was wondering, I want to go sailing this year would carry a vitamin K shot as an emergency in case of a sever accident be a wise choice. As sailing in the Caribbean on private yacht is kind of scary thought but one I really want to do for my honeymoon, any thoughts!!

Susan, Billings, MT, USA

About 1 year ago I was sat at my desk at work and started to experience cramp in my left calf. I thought it was a little strange but just stretched it out. 2 days later it got worse and I was struggling to walk. I'd also developed a large red lump on my calf and my leg had swollen to nearly double the size. I went to A&E and the doctor there told me he was sure it was DVT because he has had it himself. Despite this he sent me home and told me to go to my GP the following day to get a referral to the local DVT clinic. My GP could not understand this but did refer me.

 The DVT specialist told me it won't be DVT because I'm too young, being 24 at the time but carried out the scan anyway. They couldn't find anything and sent me home, told me it was muscle damage and to take paracetamol for the pain. About 1month later I was walking up the stairs at work at became short of breath. Embarrassed about how unfit I felt I went into the toilets to take a breather before going into the office. As a sat down I could feel my heart pumping round my body. This puzzled me but thought I may be getting flu. After work I drove to the DVT clinic to express my concern, but the specialist I saw before said not to worry because I didn't have DVT but if I'm really concerned go to A and E. Anyway due to my high heart rate they carried out a scan and found multiple bilateral PE's.

 I was told that if I'd waited a week later I would have been dead. Despite this the doctors still refused to admit I had DVT and said that there are several reasons I could have got a PE and not necessarily from DVT. On discharge from hospital I suffered pain behind my knee and couldn't walk so my partner took me to A &E. Out of pure frustration I failed to tell them about my PE and just said I was suffering from pain in my leg. They scanned it and found a large clot behind my knee. 6 months later I was taken off the Warfarin despite being on a dose of 10mg because the doctors could not stabilise my INR to between 2-3.

 I do constantly worry if I am out of breath ever or experience cramp or pain in my leg. I do still wear my stocking to try to help the constant aching I experience in my leg. My message would be to go with your gut instinct, you know better than anyone when something is wrong with you body and when doctors say you have  muscle damage and you know it’s different fight for a scan, after all this is what they have the equipment for. Don't be like me and think that because they are the experts they know better than me what it could be.

Dee, Hull

On reflection I had my first DVT when I was 27 in the late 1960s. Of course it was not diagnosed and at that time I had never heard of DVT. Luckily the pain in my leg subsided and I thought nothing more about it. Until after I had had my first child a year later. I was diagnosed as having phlebitis and told to "rest my legs". Two years and another childbirth later, again Phlebitis!

 I was OK until I had been put on HRT, soon after I had a diagnosed DVT. I had such a bad pain in my leg from what I put down to "sitting in a funny position". I went to my GP and was prescribed paracetamol and told to go and rest up my leg. Probably a pulled muscle. By the time I got home I was feeling breathless. By the time I had managed to crawl into bed I couldn't breathe properly and was so alarmed I told my husband to call 999.

 Yup it was finally diagnosed as a DVT and it took a good few weeks to recover. My leg was a mess but I was alive!! I was put on Warfarin for about a year. A few years later I had a minor OP on my foot and bingo... another DVT this time the other leg.

By this time I was expert at recognising that DVT pain, sort of like having Stage three labour contractions in your leg. I recognised the last one about three years ago and promptly drove myself to A & E as this was quicker than going home and wasting precious time. Now I am on Warfarin for life. For those people who are on here looking for information, help and probably some sympathy and encouragement, PLEASE take some advice from an old hand!

1) If you are reading this then you are still alive and can lead a fulfilling and rewarding life Post DVT. Try not to let it take over your life with worrying.

2) The very fact you are being monitored carefully increases the chance of a long and happy life. (Do keep your anti coagulation clinic appointments and do all you can to keep yourself healthy)

 3) You may not be able to fly long haul but travel by other means is OK .If sitting or driving make sure you stretch your legs as often as possible before you get that stiff pins and needles feeling!!

 4) The same advice applies sitting at the PC!!

 5) Put your feet up to allow legs to "drain" Sleep with a pillow under the mattress so your feet are slightly raised. I love to see my slim ankles in the morning... they don't last long but it's good to see you can have an effect on your own body!

 6) Watch what you eat. Everyone will be different but I did notice a small amount of red lettuce and Mangoes messes up my INR,  as do cranberries, cauliflower, broccoli and spinach. Try monitoring new food products that may have vitamin K or other anti clotting or clotting stuff in. If your INR becomes unstable look to your diet.

7) Take up a relaxing exercise regime such at Tai Chi. It lowers your blood pressure and helps you to relax as well as keeping supple. Any walking or leg exercise is a huge bonus. My blood tends to "Thicken" when I am stressed!

And lastly...... alas I cannot suggest anything that will make your legs look like they were at 16........ Mine look like an AA road map. Just be resigned to wearing jeans, trousers or long skirts. If your's are prettier than mine try some of the lovely support stockings and tights you can now get.....I guess this last advice is for the lady readers not the men..... but everyone is different as I said before!!

And very lastly........ Be happy you are here; you have been given another chance at life..... make the most of it!!!

Diana, Heywood

My DVT happened back in April 2007 over the long Easter weekend. I had been working for MBNA in their call centre while trying to find a career after university. One evening after a long shift mainly spent sitting down, I had a huge ache in my left leg, I assumed it to be cramp and went home.

The next morning I went into work but my leg had developed a very heavy feeling and I was struggling to walk. At lunchtime I looked at my leg and it was double the size of my right leg and felt hard and hot to the touch. I was so scared I called my boyfriend who said it sounded like DVT, so I alerted my manager who sent three medics to my desk. The looks on their faces told me I was in trouble, and they took me straight to hospital.

After a 2 hour wait in A&E I was seen and given a dose of Heparin. I went to a ward and was told I would have a scan the following day. The next morning I went for my scan and it was confirmed, a major clot in my upper femoral vein. I was told I would be on Warfarin for six months and told to wear compression stockings. For a 22 year old that sounded bad enough but it gets worse. I attended the anti-coagulation clinic daily over the Easter weekend, and the hospital I was in made so many mistakes, not taking enough blood for my INR, giving me a dangerously high dosing of Warfarin etc. This continued for two weeks, where I was unable to walk I was in so much pain. My parents had to carry me everywhere; I couldn’t get my stockings on by myself. I was petrified.

After two weeks of no improvement I was prescribed a session of physiotherapy as I couldn’t walk. I was forced to bear weight on my leg and the pain was immeasurable. The next morning my leg was more swollen and the pain was too intense I couldn’t get up. A scan at the hospital showed my clot had doubled in size, and I was immediately transferred to the Royal Liverpool Hospital where I spent a week in intensive care on a Heparin Drip and 12 hours from death (as quoted by my vascular surgeon when he saw me).

My clot reduced to its original size and the swelling reduced. I am on Warfarin for life now; I will have to wear compression stockings for decades. My clot, 3 years on, is still there, the same size. My veins are destroyed in my left leg. I am grateful to be alive, and yes I was extremely depressed for a long time, but I am happy to have made it so far. To anyone reading this, you can get through it, your life may have to change and your lifestyle will never be the same, but you will survive.  

Natalie, Chester

I am a 30 yr old woman that has suffered for the last 9 yrs with DVT. I have had 3 Pulmonary Embolisms and numerous clots in the legs. My experience with DVT happened 3 days after I had given birth to my second child. My son was in the NICU at this time and I was spending all my time up there, back and forth. The 3rd day Ethan was in the hospital I woke up with what I can describe as a pulled shoulder. I had pain radiating from my left shoulder blade through the front of my chest. I shrugged it off and then the next night I was hurting so bad I couldn’t put my seatbelt on, I decided to go to ER, told a doctor that I thought it was a pulled muscle from stress, he agreed and sent me home.

The next morning I am up at the hospital with Ethan and am finding it hard to catch my breath because at this point it hurt to breathe. The NICU nurse tells me I should go back to ER and get checked out. So I did and make sure to let them know I delivered a baby 4 days ago. As soon as I said that I was whisked away to a trauma room starring in my own episode of ER. Let me just say when this sort of thing happens to you it happens so fast your head spins. Within moments I was on heart monitors, IV drips, Oxygen. They do a battery of tests: Chest X-ray, CAT scan. I'm thinking I have pneumonia or something and in a matter of 2 hours I could no longer breathe on my own.  

I don’t remember much after that except waking up in a hospital room being told that not only did I have blood clots but that a huge one and decided to take up residence in the left side of my chest. They classified it as DVT but instead of the legs I threw my clot from my uterus. So here I am in the ICU hooked up like Robocop, staring in bewilderment at my brother because he never goes inside hospitals for any reason so I knew it had to be bad. This whole time all this had been going on I was separated from my son who was in his own ICU ...3 days after I was admitted I had my first reunion with my son. I still remember the feeling of almost losing him and myself all at the same time, I was so weak I could only hold him for a couple of minutes and it was back to my room.

3 weeks in the hospital and 8 months of blood thinners and a year later I had my 2nd PE, from a nurse putting an IV in my foot. It caused a clot to form, break off and travel to my lungs, now instead of 8 months of blood thinners I had to take them for life. Yes, a lifetime of being a human pin cushion isn’t that special. So to make my long story short I suffered my 3rd and final PE to date 6 months after that. They don’t know why I clot. Just seems like my body is constantly out of whack.

If my story makes you laugh or helps you to understand this condition then I'm happy. This is something that happens to you it doesn’t become you and you don’t become it. It’s part of what is going to make you stronger. Educate yourself. Beat it mentally because if you don’t believe it'll get better then it won’t .3 years after I had gone through this, a friend of mine experienced a clot in her leg and she was scared and worried about treatment. With my knowledge and experience I was able to ease her mind .that’s my reasoning for this all happening to me like it did, it was so that I could help someone else.  

Teresa, Indianapolis

I was a fit 24 year old, who had everything for her. I was accepted in the Prison Service and was doing regular exercise. I got married in July 2008 and a month after that I started to feel generally unwell. Every day on my way to work I would complain of pains in my upper back. I was told by family members that I was being silly and that I was suffering from stress. As everyone kept on saying this to me I actually started to believe it. I became very much unwell generally and still complained. I had pains in my upper back and had started to feel out of breath. I thought this was due to being unfit, so tried to exercise more (silly me). My husband had got onto a course up north for a couple of days and we were saying our goodbyes, when I said again that I really wasn't feeling well. Again it was dismissed. When my husband left for his trip I went to get my children’s clothes ready for nursery and school. I managed to get up three stairs and I was out of breath. I then began to think this was not normal.  

So the next morning I went to work and walked in the office which was a short walk from the car park and I was gasping for breath. A fellow colleague said that I looked unwell. I decided to ring the doctors and spoke to the practice nurse and advised her of what was happening. The nurse advised to go to the doctors straight away. I really struggled to get to the doctors and when I got there I didn't know who I was or where I was( it sounds silly) but I didn't know what was happening to me. I was called in by the doctor who advised me that I had a virus. I then got upset and said that I have never felt so unwell and actually feel on the verge of collapse. The doctor informed me to go to the hospital just to get checked out. I did this and had an x-ray on my chest which came back clear, the checked my legs and said they were clear. The doctors had said just needed to wait for the blood results but they should be fine. I felt a sigh of relief, and waiting 7 hours in ER wasn’t fun.

After an hour I was still feeling unwell and was deteriorating very quickly. I couldn't breathe. A doctor then came to me and said that the blood results had come back and showed that there was a clot somewhere and I wasn’t allowed to leave or stand up. I felt all life drain from me as I had my husband away for a few days, my children were with my in-laws and my parents were away. I can’t begin to express how scared I was. The next morning the consultant came to see me and he said that it was probably a virus; however we will do a scan just to check. So away I went on a stretcher and had a scan that involved a dye being injected. The results came back that night and it showed a large shaded area. The consultant then said it could be anything and that they needed to do a more in-depth scan. I was put on Heparin and Warfarin at this stage.  

The next morning I went and had another scan. I can't really go into that as it was so scary and I was on the verge of collapse. The results came back that afternoon and showed that I had multiple Pulmonary Embolisms. I started to cry as the men on my dad’s side of the family had died of this. All I could think of was that my children would call another woman "mum". I was on my own all through these tests and the doctors would say that I wasn’t out of the woods yet and that they didn’t know which way it would go. The doctors couldn’t believe that I was still alive. I spent a week in hospital with no sleep and food due to fright.

I was finally let home and my children were there waiting for me with my husband. My son took it really bad and would cry continuously. After that, problems got worse, it was coming up to Christmas and I went into a deep depression as I honestly thought that I would not survive. I got that bad that I was under a psychiatrist. I have had numerous tests which have brought up other problems. I am still out of breath, so am awaiting a heart scan at the minute.  

I also suffer with a condition called Anti-phospholipids Syndrome and will have to stay on Warfarin and heparin for life. I moan about it a lot because I can’t do the things I enjoy anymore like, horse riding or being a prison officer. But I have to remind myself that I am lucky to be here still and I will stop the moaning. There aren't many people that fully understand the pain or the effects this has on people and needs to be recognised more. I am still struggling with the depression but am proud of myself to get this far. I now, want to go to university to study nursing and hope that I will be an inspiration to fellow patients that are frightened. I still have a long way to go mentally but feel a great deal better that I did a year ago. I hope this helps other people, and if you are ever unsure never give up and insist on further tests. X

Jenna, Stoke on Trent  

I recently flew to Las Vegas from London, a ten hour flight, and within the first week there I experienced pain in both of my calf muscles. I put this down to the fact I was doing a lot more walking than usual and though it was just my muscles. It got much less painful until two weeks later when it became really painful to walk on and was the most painful first thing in the morning when I’d been laid for hours.

 My Dad said to go and get it checked out before I flew home the next week to check that it wasn’t a DVT but only being 19 and the fact that there was no history of it in my family, I didn’t think it would be this. However, I went to the hospital and had blood tests and an ultrasound and they found a blood clot behind my knee in my left leg. I got both legs ultra sounded as my right leg was actually more painful at the time but they said this could be because I was subconsciously putting more weight on it because of the clot in my left leg.

I was in hospital in Las Vegas for 2 nights and was taught to give myself 2 injections of Heparin a day and 5mg of Warfarin tablets. I was given the all clear to fly home 5 days after my DVT diagnosis. Once I got home I immediately went for blood tests and an INR and found my blood levels were only at 1.5 and now my INR is up to 2.1 so I am still giving myself one injection a day and I’m due to have my 2nd INR tomorrow. I’ve gotten used to giving myself the injections no problem and the bruising isn’t too bad, just a bit sore when touched. Hopefully tomorrow will be my last day for injections! I’m in my second year of university so the lack of alcohol is starting to bother me a bit but as my only causes were the long flight and the fact I’d been on the contraceptive pill for about 3 years (which I have now stopped taking), I’m hoping I’ll only have to stay on Warfarin for 3 months!

Sam, Sheffield

I was seriously injured when I slipped and fell in Upland, California on March 8, 2008, while visiting there from my home in Arizona. I was rushed to the emergency room (ER) of the nearest hospital where the ER doctor diagnosed fractures of my left tibia and fibula in my lower left leg. (Left ankle Bimalleolar fracture). I was in a great deal of pain, and was told that the fractures needed open reduction internal fixation surgical repair.

However, the doctor only prescribed a pain killer, put a cast on my leg, and told me to follow up with my primary care physician when I returned to Arizona. The next day, my wife and I drove back to Arizona, which turned out to be an extremely uncomfortable trip because of excruciating pain. The following day, I went to my primary care doctor who immediately referred me to an orthopaedic specialist. The orthopaedic doctor examined me and stated that surgery could not be performed right away, due to the delay in treatment and resultant soft-tissue swelling.

A few days later on March 14, 2008, I had noticeable trouble breathing, and was taken to the closest ER by ambulance. Based on test results, I was diagnosed with a pulmonary embolism related to an undetected deep vein thrombosis (DVT) that had formed near the sites of the fractures in my leg. I was admitted to the Intensive Care Unit (ICU) of the hospital for treatment of a severe pulmonary embolism, and my condition rapidly worsened. At 2:34 AM on March 15, 2008, I became cold and clammy and my skin colour turned pale. The hospital records indicate that I was unresponsive and had stopped breathing, and my eyes had rolled to the back of my head. A code for a respiratory arrest was called.

Fortunately, I responded after about 3 minutes of resuscitation. I was also treated with tPA (clot busting drugs) at this time. On March 17, 2008, I underwent surgery for the placement of an inferior vena cava (IVC) filter to stop any more clots from travelling to my lungs. These blood clots developed as a result of the lower leg fractures I sustained in the accident, which then detached and travelled to my lungs and became the pulmonary embolism that produced my shortness of breath and chest pain. It was a near fatal episode, and I was fortunate to survive and be discharged from the hospital on March 19, 2008.

Today, I am still in a constant and intense pain from the ankle fractures. I have missed work and have been unable to enjoy the regular activities of daily life due to the complications from my injury. I believe that the postponement of proper treatment of my ankle injury, as well as delay in preventing or recognizing my DVT, led to this medical emergency when I almost lost my life

Dave, Surprise, Arizona, USA

I became pregnant in 2007 and had a relatively easy, complication free pregnancy. In October I had an assisted delivery, but was fine and was discharged from hospital with my beautiful baby girl three days later. Once home I was concerned that I had pulled a muscle in my right calf and mentioned it to the midwife on her visit. I was suddenly whisked off to hospital with no one telling me what was wrong.

As a new mother with a brand new baby I was in shock and found myself back in hospital hooked up to EKGs and monitors. Everyone was very quiet and the Drs just kept telling me to lie still and nothing else. Finally I was told that it was most probably varicose veins and there was a very slim chance it was a DVT.

They put me on Clexane injections immediately and kept me in over the weekend until an ultrasound appointment became available. Unfortunately it was confirmed as a 'small' DVT in my right calf and I was sent home with Clexane injections and visited daily by the district nursing team. I was then put on Warfarin for 3 months and prescribed compression stockings to wear for 2 years.

It is now 2 years later, I wore the stockings for 18 months and am now fine. I have been told that if I want to have another baby I will need to go onto the Clexane injections again daily throughout pregnancy and beyond. My leg seems fine now, and only occasionally I get small twinges. I wear my stockings on plane journeys still to be safe.

Jo, London

In 2003 I was a 23 year old Aussie living in London and working long days sitting on my leg. When I say long days I mean 13 hours sitting in the one place with my leg tucked underneath me. At the time I was a stereotype case for DVT, smoker, on the pill and overweight (but not obese) at the time.

I first felt pain in my calf on the Easter long weekend (end of March). As I was an Aussie in the UK we did what all good Aussies did and went away. That weekend we went to Cornwall and the pain was horrible especially walking up and down stairs. Over the next few weeks the pain came and went. In April I flew to Paris for another long weekend and the pain was their again especially walking up and down stairs. I finally go to the point where my workmates and flatmates had had enough of my whinging. I went to the local doctor in my area and asked her if it was a DVT.

She accused me of being a hypochondriac as I had no physical symptoms but sent me for an x - ray just to shut me up. I actually started to believe I may be thinking the pain up in my head. One week later in the middle of May at work I started coughing up blood. I called the doctor surgery to see if they had results from my x ray (not knowing you actually need an ultra sound). The doctor on the end of the phone told me to call an ambulance straight away and go to hospital.

 At the hospital they took blood but still no ultra sound. My blood showed that I had clot and they started treating me straight away with Warfarin and Heparin. It took a few days to get to a hospital with a machine that could x ray my lungs and when they finally did they confirmed I had a PE and a DVT. This meant 2 weeks in hospital in a foreign country and being told no flights over 4 hrs for 6 months. This was the worst 2 weeks of my life as I ended up in a ward full of 90 plus old ladies which is depressing for a 23 year old.

This to me was the worst thing anyone could tell me as all I wanted to do was go home to the support of my family and friends. After I was discharged and went back to work I got severely depressed. I was told by my doctor this is quite normal for someone my age to go through when coming so close to dying. I started going to the anticoagulation clinic at St Thomas's and Guys in London and the clinic was fantastic. The nurses and pharmacists there gave me as much information as possible to help me plan my trip home. (One and a half years later).

It is 6 years on and I have not had another clot but get scared every time my leg cramps. I still travel a lot and now travel with Heparin needles and fingers crossed it was just bad luck (as one doctor put it). My only advice to someone who thinks they may have a clot is to get it checked out straight away before it is too late. I have heard a lot of stories where doctors tell patients they don’t have symptoms so they can’t have a clot. I say go with your gut.

Louise, London

I was 54 and I was getting winded walking from my car to my work area across a parking lot, up one flight of stairs and across another parking lot. Didn't think too much of it as I had worked in an underground zinc mine for 20 plus years and thought that was catching up with me. I had gotten a different job there out of the mine which required a lot of sitting.

One Sunday morning I arrived at work, walked to my work area, and had to sit as my heart was pounding and I was really short of breath, I thought I might pass out. After 5 minutes or so, it settled down and I did my duties, which didn't require much exertion. A co-worker stopped by and said I looked like I wasn't feeling well, I told him what had happened as he said to call him if anything else happened.

After getting the Sunday morning routine done, I walked out of my booth to the refrigerator about 10 feet away and it hit me again. I decided that something was definitely wrong and I needed to go to the emergency room to get checked out. I got my boss to get someone to cover for me, called my wife to take me in to hospital. After many tests, blood work and a CT scan I was told I had a massive pulmonary embolism.

 I spent a week in the hospital on a Heparin drip and Warfarin. After release I was seen by a heart doctor who said my heart was OK, a haematologist/oncologist who did many tests and found nothing and a pulmonologist whose sole focus was sleep apnoea testing (you don't want to hear what I think of him!). All agreed that I stay on Warfarin for at least 6 months. The haematologist wanted to do more tests after I came off the Warfarin which couldn't be done while taking it. They all came back fine as well.

Three days after getting that report, which was also three days after the end of income tax season - I do taxes in season which also has me sitting a lot - I was about to get ready for bed, and had went to the basement to check the furnace for the night, and when I got to the top step, I was all out of breath all of a sudden and pretty much knew it was happening again. Back to the hospital for another week long stay. This time though they found a clot in my right leg as well as my lungs. I asked for some different opinions from other pulmonologist and Hem/Onc. I was referred to an excellent pulmonologist who did much more testing etc. than the first one and another Hem/Onc. Who said the first one did everything except a couple genetic tests which apparently didn't show anything - there is no family history that I know of.

I am told I have dodged a bullet twice now and will be on Warfarin the rest of my days. One note of advice, make sure your doctor authorizes that your monthly PT/INR results can be given to you. I was thought to be on a correct dose of Warfarin 2 months after the first bout. I didn't go back to my primary care doctor for three months and then found out that my numbers had been falling every month to unacceptable levels. We did get back to good numbers but I still think that may have had something to do with the second one hitting me just 6-7 weeks after going off the Warfarin. I now call and get my results so that I know what's what. It's been a big wake up call to me health wise as I was one not to see a doctor for anything. I now wear support socks most of the time, take Warfarin and a low dose aspirin daily without fail as I DO NOT want go through this again!

Larry, Richville, New York, USA

I am a 33 year old female, active, healthy and not on the contraceptive pill. As well as working in a school, I have been completing a college course which has required a lot of work on the computer. I first had a problem around 13 weeks ago. I spent 6 hours typing on the computer on the Monday, with very little breaks. That night my right knee started to swell. The next morning I couldn't walk, my knee was badly inflamed. I went to A&E; they told me it was probably arthritis.

They wouldn't x-ray and sent me back to my surgery. My surgery then made an appointment for me to go back to the hospital for an x-ray of my knee, after another 3 weeks, they found nothing. An MRI scan was the next option but the waiting list would be 4 months. The pain and swelling in my knee started to get worse. I began having funny pains and numbness in the side of my thighs which was worse at bed time and waking up. The pain and swelling in my knee spread all down my leg to my ankle. I could only describe it as permanent cramp.

The doctor came out to the house and just offered me crutches to help me walk. I spent a whole week in bed after that as I couldn't touch my toes to the floor. I decided that I couldn't wait 4 months for an MRI scan, so I finally paid £250 for a private scan at BUPA (spire) hospital. I waited a week for the scan results.

Only 4 weeks ago, it revealed that I had a DVT just above my right knee in my thigh. I was sent straight to the hospital the following day and was injecting heparin for over 2 weeks, having daily blood tests and taking 12mg of Warfarin a day. After 3 weeks of treatment, I started to notice a difference with my leg. The clot is still there, but is showing signs of dispersing. I still have swollen knee and pain and stinging in the ankle but nothing as bad as it was a few weeks back. I will be on Warfarin for 6 months and then referred for testing to see how I got it. I believe that I got it from sitting for 6 hours with legs crossed at the computer.

Ruth, South Wales, UK

I was 24 and 36 weeks pregnant with my first baby just last June (2008) when I started to experience a slight pain in my left groin. I mentioned it to my midwife who told me it was the pressure from the baby, I went away not thinking anything else, and I had full faith in her.

By the end of the week I was in agony, having taken numerous baths (advised by the midwife) and taken numerous paracetemol (also advised by the midwife).  My partner decided to take me to hospital. I could barely walk, was up hours in the night, crying etc, something wasn’t right. I was seen to straight away in the labour ward as I was so late in my pregnancy. They decided to keep me in overnight, because I was dehydrated and had a water infection, so off I went to stay with the new mums and mums to be in the maternity ward. I woke up the next day in excruciating pain; I couldn’t even go to the toilet without help.

A doctor came and prodded my leg and insisted it wasn’t a thrombosis, looking back, how the hell did he know, he'd only touched my leg once!!! Anyway, I finally got a scan and my DVT was confirmed, and a large one at that. I was lucky. I was in hospital for two weeks and given Heparin injections, no one really explained anything to me about Deep Vein Thrombosis, I had to get all my information off the internet when I got home.

 I also had a Vena Cava Filter inserted into my vein for extra protection in case the clot decided to dislodge and travel to my lung. They planned a normal delivery as a c section would have been risky. I was sent home to my relief, any longer I'd of gone mad! I was told to inject myself daily (which I didn’t mind) you do what you have to do at a time like that.

I went into labour, 17hours to be exact, and STILL ended up with an emergency C Section! Everything went well and my daughter was a very healthy bouncing little girl, I was so happy after what I had been through. I am now on Warfarin and getting my blood checked every few weeks. They have attempted to remove the filter with no success, they said its okay to leave it in, but I’m not sure about it. I may have a blood disorder called Anti Thrombin III but am still awaiting results, if I have this I will be on Warfarin for life, which I don’t like the sound of. I often worry that I will experience another clot, but at least now I know the warning signs and the pain is something I have never felt before, worse than child birth!!!! Thank you for reading my story, I wish you all well

Gemma, UK

I've just been diagnosed with DVT, after 2 months of feeling unwell......a constant cough and general aching which at the time was diagnosed as flu. Thank God for the doctor in A&E at my local hospital continuing to seek the cause even when the blood tests that normally would have confirmed DVT appeared normal a scan revealed the DVT.

Lesley, Manchester, UK

I am a 39 year old female and glad to see it. Right at my 38th birthday, I took a physical and found out I was anaemic. I then got a cough and tried to cure it at home. It never went away. I went to work, exercise class and all the other duties as a mother and wife. The cough continued for a couple of more weeks and I was taking cough medicines.

One Saturday I coughed so much my husband said “That is it we are off to the doctors”. I went in they said I had pneumonia. I was prescribed some antibiotics was sent home to rest. Nothing got better. A week later I had to go back to the doctors to get a doctor’s note to go back to work. My doctor evaluated me and said “No, I believe you have bronchitis”. I was prescribed more medication and another week off work. I got worse. By this time I was losing pay and desperate to get back to work.

I went in to my doctor’s and my doctor was not there. I waited in the waiting area to see the available on call doctor for my note to return to work. While waiting I vomited, got flushed, could not breathe and almost passed out in the waiting area. The nurses rushed me back and hooked me up to a nebulizer (They thought I was having an asthma attack). The On Call doctor finally came in and reviewed my chart and told me I was not going home and the ambulance was on the way. At that time I am thinking, Why? I had to call my husband and sister to tell them the news.

I got in the hospital and was rushed back to cardiology and placed on a heart monitor because my heart was beating too fast and I was put on to one hundred percent oxygen. Diagnosis: PE.

My lungs were 90% blocked in both main arteries. I am blessed to be her e. During my stay at the hospital (one week) they ran every test possible to see what was going on, drew blood every two hours and monitored my heart. My heart was damaged for pumping to hard. I could not move or get up out of bed for fear that a blood clot was going to dislodge from my lung and go directly to my brain.

Finally everything stabilized (so they thought) and I was able to home and was on Lovenox (Heparin) and Warfarin. One week out of the hospital my leg swelled up and was in pain where all I wanted to do was cut it off. I could not walk, bath, sit, sleep, stand or just live. I contacted the nurse hot line because it was Sunday told her what my medical conditions were and the problem I was having and she said go to the Emergency Room ASAP. (Thanks to sisters and husband) Diagnosis: DVT.

My leg was red hot and swollen so badly I could not move it. I was given morphine to knock me out. Woke up, and was admitted to hospital and getting ready to have surgery on my left leg. I had a filter and an umbrella (stent) placed in my leg and was told I was very blessed once again. The surgery was suppose to be thirty minutes but guess what I developed complications. Still Anaemic and my PT INR levels dropped tremendously. Another stay in the hospital. I Was on Heparin, Warfarin and iron pills. Stayed another week until my levels was up to 2.0.

One year later after going to the doctors twice a week, adjusted medications, seeing Haematologists, Oncologists, Vascular surgeons and ultrasounds my doctor wants me to come of the Warfarin. We have not found the underlying cause of my condition the only thing they can attribute this to is the fact I was on Birth Control Pills for three weeks. Yes three weeks only. My doctor is not ruling out anything but now I have to come off the medication to see an oncologist and have more test run.

Not sure what this mean but I am just as scared now as I was when I was on my death bed one year ago. They want to see if my condition will come back and if so then I am looking at lifetime of Warfarin or I just not make it this time.

Warfarin made me sick and sluggish and my levels are not up the way they should be. I am tired all the time even a year later. I am on 15mg a warfarin a day. Today is doctor day and I am going for the important evaluation. This is my story.

Terrie, Baltimore, USA.

I had a DVT and a PE a year ago just before Christmas. I was 41 years old, thin and in good shape. I was on birth control pills still. I flew to Hawaii, got a horrible cold there, came back on two flights, drugged myself to sleep, didn't move at all then got on a long car ride for another 5 hours.

Two weeks later I was still ill, coughing up a little blood as well, I thought it was a really bad flu/cold, so I went to doctor and that is what he thought too, took x-ray, and said you must have pulled a muscle or something. Still felt yucky. One day in the mall shopping for Christmas presents I felt a very strange tightness in my chest (thought it was an allergy attack, I have a history of allergies and chest tightening) it felt different but dismissed it as an allergy thing.

 One week after that I was at work and my back was sore, I still felt crappy and thought I'll go to chiropractor, by the end of the day my leg swelled up huge. Tried to get into a doctor, everyone was booked up, went to emergency, and waited 5 hours finally got in. Still thought, must be my back or something causing swelling. Finally got into see and emergency doctor and I was hooked up in minutes, they took my heart rate it was off the charts, I phoned husband said doesn't look like I’m coming home. They gave me heparin and doctor was upset that I had waited so long in waiting room.

I dodged a bullet, as they told me and said I’m very lucky to be here. They took a scan and confirmed DVT and couple of clots in the lung. Started me on heparin injections then went on to warfarin. I hated warfarin. A few days after pain was so bad, I couldn't even walk. I thought I could not go through the pain, had to have help walking, lost all feeling in my leg, toes were freezing. All of this at Christmas!!

I made it through it all; it was a good couple of weeks of pain and being drugged to get through it. It is over a year now, I’m back to myself and off the warfarin, leg still has problems, gets swelling when I’m on it too much or work out, (I call it my elephant leg) but small price to pay for being here. It’s a wake up call to life! Enjoy every day! I had no idea any of this could happen. Went off the birth control pills, have to walk around every couple hours if travelling, on Aspirin every day, and make sure to wear support hose/flight socks especially when travelling.

Chris, British Columbia, Canada.

After suffering 5 days of excruciating pain in my calf and foot, my husband took me to A&E. I'm a fit 41 year old, not overweight, walk everyday and have never been on a flight. The doctor seemed to think it was muscular; there was no swelling, no redness or heat to the area. After seeing what agony I was in, the doctor decided to test for a DVT, it came back positive - a veinogram confirmed the next day the existence of a clot.

I feel very lucky that the doctor had the sense to do the blood test - who knows what position I'd be in now 4 days later. The injections were started straight away and will continue for 7 days, Warfarin was started within an hour of the veinogram.

 I saw my GP, he said 'I checked that letter from A&E twice, before I could believe it was you, you'd be at the bottom of my list for a DVT!!!' 

No-one can see any reasoning behind it, there is no family history that anyone knows off - there is just maybe one culprit - the pill, even though there is an increased risk there is usually another trigger associated, but I have had none. Friends/colleagues are stunned, I've had comments like 'old, fat people get those', 'but you're so active' - it just shows you can't be complacent about these things.

Kaye, Somerset, UK