Lifeblood

The staff and supporters of Lifeblood are very moved by the stories we receive from you about your personal experiences of thrombosis and the affect thrombosis has on your lives – the loss of loved ones, the impact on the family. Thank you to everyone who has shared their personal story with us.

Gabor Thomas’ story – would anyone fancy starting a forum with him?

I write this message to offer a patient's perspective on thrombosis in the hope that I can be put in touch with others who have had similar experiences.

I am a very fit and physically active 35 year old male. I don't smoke and drink only moderately. 5 years ago I was diagnosed with a DVT in my left calf after several weeks of having it misdiagnosed as a sports injury - the pain came on the day after a strenuous bout of physical exercise including a 5-a-side football match and a cycle ride along a section of the South Downs. I completed a 6 month course of Warfarin and my life returned to normal. A subsequent blood test revealed that I carry the Factor V Leiden gene.

I spent this Christmas skiing in the Alps. I'm an experienced skier and the trip went very smoothly: the snow conditions were excellent and I felt at the peak of my physical fitness - no injuries or knocks were sustained. Four days after returning from my holiday (05 January) I checked in at my GP complaining of a pain in my lower right calf accompanied by a slight swelling. In spite of my history, I was assured that this was likely to be muscular and was advised to take pain-killers. I returned to my GP a few days later mainly as a result of a fear of repeat episode of DVT and thus for peace of mind. I was again reassured that there was nothing to fear and was sent on my way. The following week I returned for a third opinion. On this occasion the GP recommended that I be tested for levels of blood-clotting agent. My count was within the normal range (20) and I was advised to see a physiotherapist. The pain and swelling persisted for a further two weeks in spite of stretching etc and as a result I decided to book a further appointment with my GP (this took place this morning - 04 Feb). He was uneasy about the duration of the symptoms and sent me to the Thrombophilia Clinic of my local hospital. After the usual series of tests I was diagnosed with a DVT in my right leg; the ultrasound scan revealed that the clot had travelled right up my leg to roughly an inch below my pelvis. I have been told that I will be on Warfarin for life.

I imagine that you must receive similar messages relating to patient's individual circumstances; however, to help me come to terms with my condition, I feel it would be really useful to speak to others who have gone through similar experiences - does such a forum exist? I am unable to help the charity financially, but if feel that I could make a useful contribution by raising awareness of the fact that DVTs can strike the young and healthy.

Mrs Blackwell, Stockport

“I had DVT in 2004 and was put on Warfarin for 3 months and then discharged with no review appointments arranged. I feels there is little support or information available from either the hospital or my GP”. Lifeblood has provided me with much needed information about thrombosis which has helped to answer some of the questions I still had following treatment”.
Mrs Wilcox from Lincolnshire is a lady with lots of medical problems. She has Protein C deficiency and has been on Warfarin for over 20 years. She has had clots both on and off Warfarin, but feels it is worth continuing despite this and the inconvenience of regular blood testing. She bravely told me “It can be really hard living with this condition, but you just have to get on with it, don’t you!”.

Mrs X, West Midlands

Mrs X has had several DVT's and PE's. The last PE was life threatening and she spent 7 days in CCU and according to the consultant she was under on CCU, she is lucky to be alive.

“When I had my first DVT my family and I knew next to nothing about thrombosis. The clot moved from my calf to my lungs and I had to stay in hospital on blood thinning drugs and took warfarin for months afterwards.”

“Because of my experience I decided to read up about it on the Net. After gathering information, every time I saw a consultant or doctor at a hospital I mentioned that I suffered from DVT's and PE's & thought by giving this information to them it would not happen again. I was wrong... no 2 hospitals treat their patients the same regarding thrombosis, & some hospitals don't treat the problem at all!”

“It has changed my life. I have been advised to take warfarin for life, which means regular blood tests at the local hospital & even a visit to the dentist is not straightforward. If I hurt myself I have to make sure I don't bleed too much; if I do I have to get to the hospital quickly”.

An Asian woman

I am an Asian woman whose condition went undiagnosed until a second episode of thrombosis. When I asked my then GP why she had not taken my symptoms seriously either the first or second time, leading to long chains of blood clots and emergency admission to hospital for me, she said, "It only ever affects white people." I had been affected seriously twice and was demonstrably not white, but even in the face of this evidence, she preferred to believe what she had read in a book somewhere.

S. Davidson,  Northern Ireland

Hi, I am a fifty-year-old male who up until four years ago life was going fairly well, new house, new job, and the future looking pretty good. Then as part of a routine family health check at my GP’s an anomaly was identified in my blood check and this lead to me being to be referred to my local hospital for further tests. Following further blood tests I was diagnosed with a rare form of Essential Thombocythaemia (ET) with my platelet count oscillating between <100 and 2 + million over a twenty eight day cycle. Given the risk of clotting I was prescribed aspirin, penicillin (as it was discovered I didn’t have a spleen) and Hydra (Hydroxycarbamide-Hydrea) and continued to attend hospital weekly sometimes twice a week to have my bloods monitored. A year later whilst on holiday I thought I had pulled muscle in my leg playing sport, within days the leg had swollen to twice its size and I couldn’t bear to put it on the ground. My consultant on seeing my condition immediately had me admitted and started treatment for DVT in my right leg and PE in my right lung. After my situation was stabilised I was released attending on a weekly basis again with addition medication treatment of warfarin. Shortly after this I was also diagnosed with systemic Lupus Erythematous and high blood pressure both now being treated.

So what has been the impact? I had to leave my previous job, I don’t play any contact sports, in general my condition is one of fatigue, lethargy and general debility. My response has been to re-enter education taking on a degree which has given me a feeling of self-belief in myself, given the set back of general debility due to my condition and associated treatment. I have now, only after four years begun to get back into the main stream, albeit at a reduced pace. The support of my family has been central to my recovery, also the close open relationship with my supportive medical providers particularly my hospital doctor, has seen me through testing times. What I have I learnt? The lessons are you never know what’s round the corner in life, but I have learnt that positive outlook, family support, spiritual belief, sound open relationship with medical staff and mental engagement has taken me through this experience and hopefully I’m on the route to an another rewarding period of my life.

Cathy, Hampshire

I am now 33 and I had a large DVT in my femoral vein about a week after the birth of my first baby.  At that stage I was 28, with no history of clotting and no external factors to suggest DVT - I wasn't overweight, don't smoke, I was very mobile as my baby was born at 33 weeks so I didn't get to the later stages of pregnancy etc.  I had great problems being diagnosed and was told for several days, despite being in a lot of pain, that there was no way I could have a DVT because they were so uncommon, and I didn't present with the 'classic' burning calf pain etc. 

I was on warfarin for six months (which doesn't interfere with breastfeeding despite what I was initially told), and a follow-up investigation showed no sign of any underlying clotting disorder.   I have since gone on to have another baby with daily Clexane injections. I am passionate about increasing the amount of information available to pregnant women and new mothers about DVT as there is very little information out there and healthcare professionals are not well informed; indeed in my second pregnancy a midwife said to me "Gosh, I didn't know you could get one of those from having a baby".

Samantha, Wales

I was diagnosed with arthritis when I was 6 years old. Over the years through wear and tear my joints have needed to be replaced, mostly my hips, and I had my first hip replacement when I was 15 years old. Since that first one I've had them replaced on numerous occasions; all told I've had 7 new hips.  My last operation for my left hip was in January 2005 when my mobility had reduced down to absolutely nil. After the operation I was not allowed to put full body weight through my leg, so when I came home I was hopping about with crutches.  As usual when you leave hospital all medication that you are on is given to you: one of these was the dissolvable aspirin but I was not advised to renew the prescription when I had run out so I didn't.

After being home for just over a month I noticed that one of my legs was swelling up, at first I put it down to my arthritis and the strain of hopping but after a while it got worse.  It was one evening in March that my leg had trebled its size -   the odd thing was it wasn't my operated leg but the good one (if having arthritis is good).  My family were concerned and so was I.  I was in great pain and I felt as if I was carrying a tree trunk around.  I called my GP and he came out after surgery hours, he asked how I was and lifted my legs (which were resting on a foot stool) one at a time, each time asking if it hurt, I said no to both. He left saying there was nothing wrong.  Later that evening I had my friend take me to my local hospital as I couldn't take the pain any longer. 

I was looked at straight away and had a lot of blood test done, by around 4am on the 3/3/05 I was diagnosed with a DVT.  I was given Clexane (tummy injection) straight away and then put on Warfarin 10mg, taken to a ward, and put on bed rest for two weeks.  The day after diagnosis I had an ultrasound and they found a very large blood clot in the centre of my thigh. I also had my leg measured for those lovely sexy stockings. They hurt at first but they did me good.  Once I was home after the two weeks my leg had returned to normal size but I was still on Warfarin and having regular blood tests. This continued right up until June 2005 when I was given the all clear, taken off Warfarin, and waved goodbye. There was no recall for a follow up 3 months or even 12 months down the road, just bye. I didn't think I would ever go through that again but I have and still am.

My second DVT I self diagnosed after a holiday to Canada in October 2007. Before I went on my holiday I doubled checked with my GP (not the same one as in 2005 and my first DVT, I had lost faith and trust in him) what I needed to do as I had already had a DVT and I was taking a long haul flight. The advice was to wear the flight stockings, to walk about as often as possible, and to keep my feet and legs moving every half hour.  It made the 9 hour flight tedious and long but the holiday was worth it. I did exactly the same thing on the return flight.  After returning home I was very tired and so I slept a lot. I had been home for about a fortnight when I had a bad bout of sickness and diarrhoea I was laid up for ten days, this is not good for anyone with arthritis it is very painful. I recovered and after about another ten days I came down with the flu which laid me up for another 10 days.

I had just recovered from this when I got a second bout of sickness and diarrhoea for about a week. I finally got through all these common illnesses and was doing very well, visiting my friends, and doing general day to day activities when I noticed my left leg was swelling up and not going down: at first as before I thought it was my arthritis just acting up after being so ill but it wasn't. 

I remember going to bed extra early as my leg was really painful: I put my leg up on some pillows to help with the swelling and then had an uncomfortable night.  In the morning my leg had gone down but as soon as I stood up it was like a tidal wave flowing from my thigh down my leg as it swelled to a tree trunk size and the pain was excruciating.  The discolouration that was happening was like a blue-ish tinge as if the blood was being stopped. I knew that I needed to see someone really quickly so I rang my doctor’s surgery and drove to see them as an urgent patient. I was seen by the nurse who then went and got the doctor who told me to go to the DVT clinic at the hospital. This time around everything was different: I came home from my doctors and got my friends to help with packing a hospital bag and to take me to the hospital. When I got there I was seen straight away, sent for blood test and an ultrasound, then back to the clinic. Yes I had another DVT, in my left thigh this time, and it was once again a big one. Why? Was it the flight or the common illnesses and immobility?  I don't know and neither do the doctors. 

Unlike before I wasn't taken to a ward and put on bed rest and given stockings, I was given the tummy injection and told to return the next day for more and to get my Warfarin. I did this and that was when I was told I would be on it for the rest of my life. For the best part of two months I was back and forth to the hospital every day including the weekends, I wasn't allowed to drive either. I now have my bloods done by my doctor.

My only problem is that even now I still have a very swollen leg and foot. I was only given stockings after I begged my GP for them. The hospital they said "We don't give those out any more".  In this I have been very disappointed, I know that medical treatment has to grow and progress but I recovered better from my first DVT quicker and faster that I have my second.

Has my life changed? YES. You have to be careful; even simple things like peeling potatoes you have to be aware of what the knife is doing, take your time and don't rush it, one slip and your cut.... even a simple paper cut can bleed for ages.  I've gone through my home looking for sharp edges or corners and rounding them off. I have the central walk ways free of clutter so I don't slip or fall and bruise myself. Then there are the additional and constant blood tests: I went through these with my arthritis and now I'm going through them again. My veins tend to be temperamental and hibernate a lot: mostly they don't work.  Because of the swelling in my left foot I can only wear one pair of shoes, my trainers, and even then the one for my left foot is left undone.

Life goes on: you adapt, and live with it. For those who have their first DVT it is a big shock, very worrying and yes, the thought does go through your mind "I could have died".  YOU DIDN'T.  Survive. Don't let it rule you. Be the one in control, not the DVT.

Clare, Cheshire

Clare has such a positive story of hope, determination and joy to tell – clearly one that should inspire us all.........

I am 28 years old and developed an ileo-femoral DVT 3½ years ago. I have had a few clots since then and I am now on lifelong anticoagulants. After my experience with this illness I feel that there is a lot of awareness and knowledge that needs to be gained by the NHS in dealing with it.

In the October 2006 I met Mark. He was the best thing that had ever happened to me and instantly I knew he was going to be the person I wanted to spend the rest of my life with. I had lived with thrombosis for the previous two years and I had just had a bypass operation on my veins. Mark took all this in his stride and my health problems were not an issue. In the March 2007 we found out that the bypass operation had failed and the graft has clotted over which meant that my walking capacity was severely limited and the only option to give me some relief was another bypass with a plastic vein. We were advised that the implications of this were, should it be successful, it wouldn't be advisable to have children as this would put pressure on the graft and could cause it to break! We were left with the decision of do we go for the op or do we have a child now? We had only been together for a few of months but knowing that we both wanted to spend the rest of our lives together we decided to have a baby. 

In order to get pregnant I had to see an Obstetrician in the Liverpool Women's Hospital to discuss how we would manage a pregnancy with the clotting problems and the walking difficulties I had. He was brilliant: he discussed my case with other obstetricians around the UK and finally at the end of June we got the go ahead. We went to see my Haematologist, Dr Ade, at Aintree Hospital who put me on heparin injections straight away whilst we began to try for a baby.

At this point I was still on a huge amount of pain relief each day, but not thinking we would get pregnant so soon I hadn't begun to think of the implications of coming off that once I was pregnant. I had not had a period since we began trying and at the end of August I did a pregnancy test and discovered I was already pregnant. Both Mark and I were totally shocked and in truth we were not ready for what was to come but we were delighted!

I immediately got in touch with my GP, Obstetrician and Haematologist and began to make the necessary appointments.... my diary had never been so full. I had been off work sick after a suspected further clot and at this point I also found out that my application for voluntary redundancy had been accepted I was so pleased. 

Due to the pregnancy I had to come off all my painkillers which was really hard as it meant that I was extremely limited in what I could do. Prior to getting pregnant I used a crutch to support my left leg and to help take some of the pressure of it when I was walking I was now using two crutches and as soon as I went anywhere I was in severe pain. I was offered Oromorph, but as I was worried about what effect it could have on my child I refused it, even though the doctors told me that the amount I would be taking would not harm her.

We went in the October for our first scan and everything was great with our little baby, we heard her heart beat for the first time and a blanket of relief came over the pair of us. During the next few weeks we were having hospital or doctor’s appointments nearly every week and the pregnancy side of things was progressing fine - it was my body that wasn't coping. Eventually in November I gave in and began taking Oromorph as the pain was just unbearable. We had our twenty week scan where we found out that we were having a little girl although we still didn't know whether Hannah had been affected by any blood thinning treatment (Warfarin syndrome can cause facial defects) as the technician couldn't see her face clearly enough on the scan... we would have to wait four weeks to find out. The four weeks soon went by and we went for another scan - we were absolutely delighted when we saw our daughter’s face for the first time and it was absolutely perfect!! The problems and the pain I had had up until then where insignificant as we had a beautiful baby who was developing normally. 

As the weeks went by we discussed the birth plan with several Consultants: my Obstetrician, Vascular Surgeon and Haematologist were in constant discussion over how to deliver the baby. The initial problem the doctors thought I would have would be managing my blood though pregnancy and they never anticipated that giving birth would be the biggest problem. The clot I have in my leg has blocked all exit of blood out of the left side which means I have quite a complicated network of veins around my groin and pubic area filtering blood out of my leg. The veins during pregnancy were very inflamed and painful due to the weight of the baby but they are all extremely valuable and I could not afford for them to be damaged through childbirth. It was eventually decided that caesarean was the best way to deliver, but this meant having to plan the incision with great care so as not to hit any of the veins. 

March was soon here and I had now been put on Fentanyl patches for my pain. I had been given my caesarean date and I was all excited as soon I was going to meet my daughter. Mark had been a tower of strength all the way through the past nine months and I don't know what I would have done without him. He had all the worry of me but never let it show, it was only after Hannah was born he told me how much he was worried. 

The day of the caesarean soon came round: surprisingly I was fine, but Mark was a nervous wreck and the doctors were more concerned about him than me!! At 12.28 on the 21st April 2008 our daughter was born. She was perfect, beautiful, and had a pair of lungs on her that Madonna would have been proud of. None of the medication I had taken had affected her. I was fine after the caesarean and was out of hospital three days later. 

Although I had a bad time during my pregnancy with pain, my bloods and my baby were both fine and that is really all that matters. I still have all the health issues and medical problems I had prior to having Hannah and my leg has now actually got worse with increased varicose veins and a lot more swelling, but I do not regret having her and would encourage any other woman in my position to do the same. Against all the odds me, my partner, and our child came through it and I am sure other people would too.

Mo Watkins, Surrey

I broke my leg in May last year sustaining a fracture to the upper fibula close to a nerve, but my leg was not put in plaster. I did mention to the hospital at the time that I wondered if I may be a "clotter" as my mother suffered from clots. A month later after very little movement (I used a wheelchair around the house) I was rushed back into hospital with a dreadful pain in my side. I had been fairly breathless for a coupe of days, but just thought that with my quadruple bypass and lack of mobility I have become a little unfit. I was diagnosed with a massive saddle pulmonary embolism after 3 days in hospital - nothing had shown up on my leg scan and I had no other signs of DVT. I was kept close to the crash trolley for the next few days and was told I was extremely lucky to have survived - scary stuff!!

Suzi Robertson, Aberdeen

I am a 31 year old woman who has suffered 4 DVTs. I had my first one in pregnancy when I was 27. The symptoms were not of a sore swollen leg like most, but severe pain in the lower part of my back running down my thigh. They treated me for sciatica and sent me home with exercises to do. After a few more days I knew something was wrong so I returned to the hospital, this time they scanned my leg and confirmed chronic DVT in my groin. After many blood tests to see if there were any blood disorders (negative) I was told to stay on warfarin for 3 months and I would probably never have any more problems.

A year later we decided to go on a short haul flight to France for our honeymoon (as the flying thing was in my head) We arrived having had a good flight and had a 3 hour transfer which I didn’t even think of, I just sat taking in lovely views of the Alps. A couple of days into the holiday I started to get a pain in my calf which I just put it down to the snowboarding. At the end of the day my leg was swollen and very painful. I went to a local doctor and he gave me Heparin to tide me over until I got myself home. The journey home was terrible, I didn’t know if I should move about or keep still as I was so scared the clot would move. When I got home a scan at the local hospital confirmed a clot at the top of my knee.

I was put on Warfarin for life, but have still clotted twice again. It’s not a very nice condition to live with as soon - as I get any pain in my leg I just panic. The good thing is that I work in ultrasound so whenever I have a concern the doctor will take a look. I have found Lifeblood’s website very helpful and full of useful information (more than doctors have ever given etc) It is interesting to read stories of other people who have the same problems.

I am holding a music extravaganza in August to help raise money for Lifeblood and also looking into doing an Arctic Snowmobile Expedition in 2009. If anyone is interested in taking part in the expedition let me know! You can get my contact details from Annya.

The Thomson’s family story - antithrombin deficiency, living with an inherited blood disorder

I have to say it has been a very long journey to find out my family’s medical history not knowing what caused my father and his mother (my grandmother) to die at 61 and 55 years of age. In 1982 my father died of a pulmonary embolism, a fact I had no idea about until 2003 when I lost my mother to cancer. I was left to go through her papers and discovered quite by chance that my family might have an inherited faulty gene resulting in a tendency to form blood clots more easily. If my family had known that we carry this gene or we had had a blood test earlier we might have been more aware of the risk factors and symptoms of thrombosis, but we weren’t.

 In 1996 my daughter discovered she was pregnant with my grandson, but little did we know that history was almost about to repeat itself. She was fine until 34 weeks when she developed tenderness and swelling of her legs and feet and high blood pressure and was diagnosed with pre-eclampsia. She was put on bed rest and had an emergency caesarean section on 27th December. After returning home she was very tired and did not look or feel well. She told her doctors this at her 7 week post-natal check but she was told she had just had a baby and needed to take it easy. She had no checks at that time, not even her blood pressure taken. 

A few days later an emergency doctor came out to see her as she was still very unwell. She was advised to go straight to hospital where we immediately took her by car. She was put on oxygen and had a ventilation perfusion (VQ) scan and a chest x-ray which confirmed the presence of a large clot in her lung. She was kept in hospital for week, after which time she was allowed home on Warfarin for 6 months. She was told she was very lucky to be alive.  No follow up or further investigations were done following her admission.

In 2003, after losing my mother to cancer and finding my father death certificate which said “pulmonary embolism”, I decided to research this condition more, but before I could start I lost my only son in a motorbike accident and 9 days later I had my first pulmonary embolism. Less than a year later I had my second.

Fortunately on admission for my second PE I met Dr Abraham, a specialist in blood disorders, who listened to my story and arranged for me to have a blood test to see if I had sticky blood. Unsure of the condition I decided to return to the research of my father’s medical history and it was then that I discovered my paternal grandmother had also died of a PE at only 55 years of age which was when it really hit home that there was a strong possibility that the family may have a faulty gene causing us to clot more easily. An appointment was made for me to see Professor Greaves at Aberdeen Royal Infirmary who gave me the results of my tests which showed I did indeed have a blood disorder - Antithrombin Deficiency. My immediate family went on to be tested and my daughter also tested positive, although both my brothers were negative. My grandson will be tested when he is 13.

I am on life-long Warfarin and carry a card to advise medics that I have antithrombin deficiency. My daughter also carries a card.

I work hard to raise awareness of thrombosis and inherited blood disorders in Scotland and have spent a great deal of time talking to local councillors, politicians, health professionals and the public. There seems to be little or no support for individuals or families affected by thrombosis so I decided to form a support group of my own with the help of Lifeblood and my local councillor, Stephen Smith, who helped me secure a meeting room in Peterhead Hospital. Our first meeting was in May and we had a local dentist come in to talk about INR and dental treatments which went down well. If anyone would like to contact me about my support group or advice about starting one in your own area, please contact Annya at Lifeblood and she will pass on your details to me.

 Lisa From London

I am an otherwise fit and healthy everyday 18 year old who no long takes anything for granted. At 14 I was diagnosed with my first DVT after breaking my arm playing netball: I had no idea then that it would get me where I am today.

With most other people with a clot a period on anticoagulation generally seems to sort the problem out and there usually aren't any long-term problems. When I developed my second clot I was not completely aware of DVT symptoms as I was fairly young when I developed the first one, but luckily for me, my parents insisted that I go and see the GP. By this time my leg was rather swollen and painful and an ultrasound confirmed an above-knee DVT close to my pelvis. I was immediately re-started on Clexane and Warfarin.

I often have problems maintaining a stable INR and so I have been on and off Clexane for a while hoping that my INR hits the 2.5 target. I have found that even small things such as diet or having a cold affects my INRs and other people at my local Thrombophilia Clinic have also found the same.

Further investigations by the Haematologist have revealed that I have a thrombophilia (Factor V Leiden). Unfortunately for me there is nobody else amongst my family members who carry this same thrombophilia.

Initially after my second DVT I found it very difficult to cope. The needles, the endless appointments, and no knowing much about thrombosis all added to my frustrations and I often found myself being forced to attend clinic appointments after getting desperate phone calls from my doctors wondering why I hadn't had my INR done that day as specifically requested, which subsequently lead to many arguments with my worried family! For a long time I just thought all the doctors were making rather a big fuss about my sore leg. I think being young and feeling somewhat invincible and  bulletproof added to this, but sadly with DVT you are not bulletproof and there can't be any messing around with your treatment. It is a life threatening condition and not something you can simply tuck under the rug.

Being young with a DVT can sometimes make you the "rather interesting case" that doctors like to "share". The frequent blood tests have left me looking like a drug abuser with hard, scarred veins and needle marks and my age has prompted many questions from staff taking my bloods who do not know my history. I have a wonderful collection of stockings that I use mostly for help with the continued swelling in my leg. I have found physio a big help and, most importantly, have found that keeping active will always work in your favour.

To everyone out there (and especially youngsters) suffering from thrombophilia or spontaneous clotting please hang in there - support is out there and you are not alone. The majority of people I have spoken to with thrombosis all feel the same.... "There's usually no information readily available", "I had never heard of clots or DVT  before" and "What happens now" are all questions I hear pretty regularly. We all have the same questions and concerns and it's up to us to make a difference.

I have adapted well to life with thrombosis and have a strong desire to raise awareness of the condition, especially amongst the younger generation. I have never read of anyone giving up, despite feeling there is every reason to sometimes, so just take of yourselves everyone.

Lisa has started an e-support group for the under-25s and hopes to host a forum in the near future too. If you would like to be put in touch with her please contact Annya who will pass your contact details on.

Robyne from Cambridge

Days before my 23rd birthday in March I was admitted to CCU with multiple PEs in both lungs. It was extremely scary - one minute I was fine and the next minute I was in an ambulance. The symptoms were sudden and very severe. I stupidly put off going to see the doctor for 2 days as I was convinced that I had a chest infection - who know why I thought that - I guess because I am so young and I had never heard of the term "pulmonary embolism" before.

As it was the weekend I had to see the emergency doctor who was brilliant. I walked in and within five minutes she had called an ambulance and I was on my way to hospital! I was put on oxygen and my heart was monitored, The doctor had mentioned that I may have a pulmonary embolism, but I had no idea what this meant. In myself, as long as I was sitting very still, I felt OK so I couldn't comprehend that I had such a serious condition.

when I got to hospital they did lots of tests, scan etc. I was eventually told I had a multiple PEs in both lungs and was admitted to the CCU where I stayed for 8 days. It was a lot to take in..... the Consultants kept telling me that I was seriously ill, but I refused to believe it initially.

Since I left hospital in March I have found the whole episode really hard to deal with. I need to find some way of accepting what has happened to me so I can move on. What is not helping is that I do not really have any answers as to why I had such a severe case. It seems that I have no genetic conditions which would make me susceptible to clots and the only answer that I have at the moment is that it could have been caused by taking the contraceptive pill for 6 years.

My INR does not seem to be staying in the therapeutic range which is also making it harder to move on. I am still suffering - I cannot walk far and have no energy at all. I have been told that the recovery time is 4-6 months, but that is not easy to hear for a 23 year old who just wants to get on with life.

It's so nice to see a charity like Lifeblood around. It is frightening how little people know about thrombosis - some people I speak to know loads, mainly becuase someone close to them has been affected, whereas others have no idea at all and look at blood clots as if they were the same as a common cold. This really frustrates me because it is such a silent killer and I am sure if more people knew about it then less people would lose their lives to it. Sadly, before all this, I had no idea about pulmonary emboli and just thought my tight chest was a chest infection. It is so lucky that I was persuaded to go and see the doctor!

Note from Annya: Robyne and another young thrombosis sufferer (see Lisa's story above) are in the process of setting up a support group specifically for younger members (under 25s) of the community who have been affected by thrombosis. If you would like to be put in touch with them please let me know and I will pass on your contact details.

Faye, a nurse with DVT