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 pages. 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 main tab called “Your Experiences” which has the experiences sent to me post 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 ,"Your story" and fill out the attached form.
I was taken to Accident and Emergency 4 weeks ago due to my leg being swollen and in pain, I was also struggling to walk. I was diagnosed with DVT. The clot is at the top of my leg and very big.
Before going to the hospital I went to a walk in clinic at another hospital where a nurse said I had sciatica, I was sent to toilet to do a urine sample, and by this time I was struggling to walk and felt really unwell. When I went back and told the nurse, she did not seem concerned. I said I was worried that it was a blood clot, as my brother had one last year and I was on the pill, but the nurse said no its not a blood clot. I was sent away still feeling unwell and struggling to walk.
I ended up going to Accident and Emergency a hour later, I was struggling to walk and my leg had ballooned up and was a purple colour. I was diagnosed with DVT and spent 5 days in hospital, so as you can imagine my family and I were disgusted with how the nurse did not get a doctor’s opinion and I was sent home, walking with a DVT. I am just so glad I went to the hospital that night, and that I did not took the nurse’s word for it, because things could have been a whole lot worse.
Suzanne, Sheffield, UK
I am 34 years old and 2 years ago was pregnant with my third child, when during the later stage of pregnancy I began to feel pain, which was similar to cramp in my left leg. The pain usually occurred after my regular weekly swim. I mentioned it to the midwife at my next visit and she put it down to cramp and said that this was a usual symptom of pregnancy.
However I just didn’t feel right, I felt really over tired all the time and very lethargic, I was also anaemic and it just didn’t feel like my other pregnancies. Anyway I carried on and didn’t mention anything further until one day towards the final month of pregnancy both of the whole of my legs and ankles swelled up to double their size. I was in tears when my husband caught a glimpse of them and I just said, "I haven't put on that much weight have I?"
I showed them to my midwife as I was going for weekly visits by then and she said "I have seen worse" & told me that it was fine and they would go back to normal once the baby had been born. Again I went away, I trusted her and she had re-assured me that, as I had no complications with my other pregnancies that this one would be fine too. (I actually did have phlebitis with my first son, which she was fully aware of).
I went into labour a week early and my baby was in distress, I had him within 6 hours of my very first labour pain. My son was born and checked by the doctor who could find no reason for my baby being in distress and told me he was very healthy & weighed 8lb 13oz. I haemorrhaged straight after the birth! I was kept in overnight so they could test my blood the next day and decide whether they were going to give me a blood transfusion. I was tested the next morning and was told I could go home, which I did.
No sooner had I got home and one of the doctors phoned me to see if I was feeling OK, I thought this was rather strange but besides feeling really tired and extremely lethargic I said I was fine. Over the next week I felt more and more tired and lethargic, I didn’t talk much & felt quite withdrawn which was very unusual for me. I was taking iron for my anaemia anyway but did not feel any better for taking it at all. 10 days after giving birth I had the same cramping pain in my leg as before. During the early hours of the morning I was awoken by the pain shooting up my leg I sat up the pain was immense it went straight up my leg I couldn’t move it, it was paralysed with pain I then felt something go straight through my heart, my whole body stopped for just a second.
There was no more pain after that and I strangely just went back to sleep. When I woke in the morning I had chest pain, every breath I took was painful and it got shallower on each breath. I told the midwife at 8:30 am when she arrived for my routing daily check that I had that pain in my leg again and that this time it had shot right up my leg. She shrugged her shoulders and made no comment. I didn’t for one second relate the leg pain to my chest pain, I thought perhaps it was asthma & actually took my inhaler (which incidentally made it much worse). My breathing continued to worsen and my husband rang the doctors who told him there was a lot of it going around and they would get the nurse to ring me!
We waited until it got so unbearable my husband got my mum to come and baby sit the children so he could take me there himself. My mum took one look at me and told him to get me to hospital. We went to the local cottage hospital where the nurses’ put me in a wheelchair and the doctor confirmed he could hear what he thought was a blood clot on my lung. The ambulance came immediately and I was rushed to the main hospital where I was given heparin & had the blood test & a scan, which confirmed a pulmonary embolism.
I fought for my life for 3 days barely able to take any breath in whatsoever and was afraid to close my eyes for a second as I really thought I was going to die. I watched the clock the whole night just praying that I would make it through the nights. The nurses were fantastic and checked me constantly; my husband and I were told after the critical stage that I was lucky to be here as my temperature had dropped so low that I should technically have been dead!
I am so grateful for my life, but very angry with the midwife who I trusted to take care of me. I am now going to do everything I can to raise awareness of this silent killer, there is not enough awareness out there and the general public need to know what the signs are so they insist on getting their symptoms checked out. Thank you for taking the time to read my story. Sally.
Sally, Isle of Man, UK
I was diagnosed with a subclavian occlusion in the top of my left arm three weeks ago and I was admitted to hospital two days later for venogram. I then spent 3 days on an infusion and heparin drip but this did not get rid of the clot, I spent a further 3 days in hospital on Clexane and Warfarin and have now been put on Warfarin for 6 months.
The surgeon said it was due to my first rib compressing on my vein and that he would take the rib away, now he has changed his mind. I feel I am not getting any honest answers to my questions and have had no contact from the surgeon since leaving hospital although my GP does! Not know enough to quell my fears and I am a keen sportsman but am unsure how to proceed. Has anyone had a similar occurrence?
Wayne, Manchester, England
In April this year, in the duration of one week I had gone from having an irritating repetitive cough to having dizzy spells, shortness off breath. I even struggled to climb the stairs! I just kept saying to myself that I must have really bad flu.
My partner insisted I go see my GP; I’m so lucky I did! The Doctor listened to my breathing and checked the oxygen in my blood and said that I didn’t have enough in my blood & that he could hear a crackle in my back. I had to go straight to hospital for tests as I may have a blood clot in my lung! After x-rays & ventilation scans I was told I had quite a few clots in my both of my lungs (Pulmonary embolism).
I was in complete shock! I’m 28 yrs old, went to the gym 3 times a week, don’t smoke, rarely drink, and eat healthy. How could this happen? I had been on the contraceptive pill for10 yrs and a year ago had changed to one called Yasmin because it was meant to have fewer side effects...how wrong could I be!
I was in hospital for nearly 2 weeks and was started on Clexane injections and then introduced to Warfarin. It took a few months to get my INR to my therapeutic level of 2.5. I had to really look at my diet and eliminate a lot of vitamin K...so basically all the healthy greens that I prefer to eat. Now it's 6 months along and my last day on the Warfarin.
I’m waiting for a thrombophilia screening to see if this will happen again. I can’t be on the contraceptive pill any more but that’s a small price to pay. I’m quite scared for the future. I know the Doctor's are going to keep an eye on me but it's just the thought of this happening again and I don’t get the same symptoms to detect it's happening again!
I have been told that when I decide to have a family I may have to have Clexane injections through certain parts of the pregnancy. I just feel that being sensible & going on the pill has now limited my life. Doctors should do more tests before you are put on the pill to prevent this happening. At the end of the day this experience has changed my whole view on life. I don’t worry about the petty stuff. I’m trying to have as much fun and be positive. I’m hoping to get married next year & get on with things.
Olivia, Inverness, Scotland
My story is about my brother in England. He was diagnosed and treated very quickly in 2001 for DVT. He had all the symptoms redness swelling of the leg, and pain. He was treated in hospital for a week and then put on sick leave for about 4 weeks. He was prescribed Warfarin and was on it for 6 months.
In Feb 2008 after flying to Spain he had swelling in his leg and pain. He went to the hospital there and was told it was phlebitis and given antibiotics. Four months later he was still having pain, it was now in both legs. He visited his doctor in UK who gave him more antibiotics.
He was on the waiting list to see the specialist when I got the phone call that he had died on Sept 14th 2008. He was a healthy vibrant 47 year old. Cause of death - Pulmonary Thromboembolism. Also known as NEGLECT.
Warning if you suspect a problem and you are worried GO TO EMERGENCY MEDICINE DO NOT LET THEM FOB YOU OFF. I blame the UK health system for my brother’s death. I also blame myself for not insisting he got urgent care. Please do not let this happen to you.
Pam, London, Ontario, Canada
After the premature birth of my son, I needed an ERPC, I was bleeding severely and needed 4 days bed rest whilst having a blood transfusion. After being discharged from hospital, I started to develop difficulty breathing, so my other half took me to A&E where we discovered I had multiple peripheral PE's.
After 6 months of questioning my hospital, I found out that they never even carried out a "risk assessment" or even provided me with "teddy" stockings. I would like to help raise awareness to this crucial error in care that could so easily have killed me and effect lots of other women.
I am only 26 years old and all this added to an already traumatic time as I was still mourning the loss of my son, also like to note that the Maternity unit didn’t even suspect I was in labour and Jason, my other half had to undress me on a day assessment unit seconds before I gave birth to our son. He survived for only 14 hours but if things were done differently, that may have been longer.
Davina, Dorset, UK
I have been a member of Cabin Crew for four years. 2 months ago, I thought I was getting a cold and I had a very strange cough. That night I started to have pains in my shoulder. I thought I had received this by closing a heavy door on the aircraft. I then had pains in my stomach, which I can only describe as bubbles and then I had pains whilst I was breathing in. This went on for two day's and the second night I was in so much pain.
I attended A&E where I was diagnosed as having multiple PE's. The consultant said the clot was also on both lungs but he never thought the one on the left lung would of been as big as it was. I was on Clexane injections for 2 weeks and I'm now on Warfarin, which I'm unsure how long for. I am back flying but on a very small flying restriction and no long haul flight's as of yet.
There is a lot of information about travellers who are at risk of DVT but not Cabin Crew. Whilst getting one of my blood tests there was also another Crew Member with the same condition as me, who is now unable to fly anymore.
I have been very positive in my recovery and have given up smoking (I wasn’t on the pill) and I have been doing lot's of swimming which was the best advice I was given as I believe this has helped me with my recovery
Claire, Sussex, UK
In June 2006 (age 25) I strained my intercostal muscles while doing martial arts. As the injury healed I noticed I was increasingly getting out of breath, walking up stairs, and first I put it down to the injury, but then after about a week of breathlessness the back of me knee started to feel sore and I thought I had aggravated the muscle. It sort of felt like the muscle had cramped up.
The next day at work my leg kept swelling and got increasingly stiff and I mentioned it to my work colleagues who insisted I saw someone, I rang NHS direct, not wanting to believe that it could be a DVT with PE (as my father had died of it four years pervious) who told me to go to A&E.
The doctors were a little sceptical as I had no chest pain but because of my family history they treated me for DVT. Luckily they did, I got admitted to A&E Friday and didn’t get a scan until Monday morning, when I was told that I had a DVT from my knee down my calf and multiple PE's in both lungs near my heart. Scary Stuff!
I was on Warfarin for 6 months and then came off to have the genetic test for Thrombophillia. The results have just come back that I have the Factor V Leiden condition, so I am now waiting to see a haematologist to see, what if any, treatment I need long term.
Claire, Hereford, UK
Hi to everyone who's suffered from a thrombosis. My story began twenty years ago, at the tender age of seventeen; I began to suffer from pains in my right leg behind my knee. Thinking I had some how strained this I carried on regardless, TO CUT A LONG STORY SHORT ……. After several weeks of sheer agony the pains and shortness of breath in my right lung started. After a further two weeks was diagnosed at hospital with several P.E’s. Seems the D.V.T had broke away from my leg.
The hospital said that I was only expected to live 48hrs!!! Well I proved them wrong on that one!! They gave me a large amount of heparin. After that I was sent home on Warfarin, and I’ve been taking this ever since. That’s over 20yrs at 10/11mgs daily.
My worry is after visiting my consultant haematology just yesterday (26/03/08) she has now decided that I don’t need the Warfarin anymore? SHOCK HORROR…..!! What? Why? How? When? You can imagine my frustrations and concerns.
I’m scared of this happening all over again I might not be so lucky next time!!...Any answers anyone, please, I’m so worried, yet if this is right, I’m so delighted at the same time. I’ve served a life sentence on the Warfarin already over 20 years.
Please if any one could put my mind at rest or just give me some guidelines to what to do next I would very much appreciate this, Many Thanks Joanne. Please contact Joanne at email@example.com
Joanne, Derbyshire, UK
I, personally, haven't suffered with DVT however, my mum died at the age of 44 from a pulmonary thromboembolism caused by deep calf vein thrombosis. When she died we were shocked as we expected to hear that it had been a heart attack due to a large family history of it.
No one thought that her flying back from Kenya was what killed her. Mum had been home for 36 hours when she was found dead in bed. She had no symptoms at all which was surprising but then mum was never one to complain when she was sick.
I had heard of DVT briefly before mum's death but when it doesn't affect you, you tend to pay much attention. After mum’s death, I made the effort to find out why and what caused her death. I have recently found out that mum had a condition called thrombophilia, which predisposes people to the formation of Blood Clots.
Had she known this she may have survived. I am now 30 weeks pregnant and have been diagnosed as having this condition. I am receiving Clexane injections for the remainder of my pregnancy and will be reassessed after the birth of my child
Sinead, Dumbarton, UK
I was first diagnosed in 2000 with DVT, same sort of thing, I was at work and had pains in my legs and they swelled like balloons. Rushed to hospital and did all tests and yep, I had DVT in both legs. Was on warfarin for 1 year then 2002 had another 2 DVT's and following this I had three more in my thighs. I was told I was to be on Warfarin for life with no real explanation as to what caused it.
Well, in 2006 I had this really bad cough and it lasted for weeks and I just could not breath I thought it was a really bad cold. I eventually went to my doctor who rushed me to hospital and said I had clots on my lungs and amenia! What a shock. I was lucky to survive.
I now have so much pain in my legs I can barely walk; I am on Clexane injections on a daily basis. I also found I had bad discolouration in my legs from the initial DVT's which I was told does happen to some people. I self inject everyday and cant walk more than about 50 yards with out being totally breathless.
I thought I had another clot on my lung and went to my doctor who said to me there was nothing they could do as I am on the best medication they could offer. Well Fab, I am just so worried as I get the same symptoms and my doctors are just not interested. Is anyone out there having any pain or problems like me as I would be really interested to know.
4 months after the delivery of our son I developed a pain in my left knee. Referred to an orthopaedic surgeon who initially diagnosed a cyst behind my knee, recommended physio. A few days later my leg was swollen and red but still told to see the physio. Went to see the physio who took one look at my leg and sent me straight to A&E and was promptly diagnosed with a 2-inch (5cm) clot in Illeo/femoral junction.
Admitted for IV heparin therapy and after a week in hospital was sent home on warfarin for approx 18 months. Initially my leg was 4 inches bigger than the right and now 14 yrs! Later I am left with a leg 2-3 inches bigger than the other one, have damaged veins which have bifurcated and incompetent valves. It itches like a good un as we say here. It is swollen, sore and tight all the time. Recently got emergency admission for a possible DVT. The leg was swollen and discoloured but despite a positive blood test 2 scans have failed to find a further clot. Finding information difficult to get, as the doctors seem reluctant or unable to give me any explanation. They just say keep an eye on it and if it gets worse ring them! So now rubbing moisturiser in it and wearing those ever so sexy white stockings! Still got pain but keep on going!
I’m 37 now and am on my third blood clot scare with the prospect of being on warfarin for life. The first was when I was 21, the second at 33 then the third at 35. All three felt very different. The first one was a permanent cramp in my left thigh, which just would not go away. I had all the tests done such as blue dye in my ankle and released with an x-ray quickly being taken to see the flow (oh how times have changed now!) My doctor couldn't see any problems from the knee down so told me my cramp would just go away. Little did I know that the actual problem was above the knee restricting the flow of blood to the lower leg hence the cramp.
One month later my cramp finally stopped leaving me with a 1" larger left calf and none the wiser. Number two clot came about after a long haul flight to Cyprus. Approximately 5-6 days into a fortnight holiday I started to get cramp in my left calf, painful hard areas, a swollen calf and shooting pains above my left knee. Due to my previous experience I assumed it would just go away. By the time I reached the end of the holiday I could only walk in high heels as flat shoes just hurt my leg with a strong pulling feeling virtually the length of it (like a pulled tendon feel). I flew home and a friend (doctors secretary) suggested I at least get it checked out. Reluctantly I booked an appointment the next day.
Within 2 hours of seeing the doctor I had already been injected with heparin, been sent to A&E, had a scan and been admitted to hospital with multiple lower clots and two major ones above the knee. This meant a one-week stay in hospital and a year of warfarin and blood tests, after which I was given the all clear and told it, would not return! A few years later whilst playing racquetball with my son I stepped back on my left leg pulling the calf (it felt like a string snapping). After a couple of days the pain had not only not gone it had worsened making it very hard to walk but still just feeling like a pull deep inside the calf. Confusingly there was no cramp or hot spots but it just didn't 'feel right'.
Another appointment at the doctors saw me insisting on having another scan although the doctor was sure I was wasting everyone’s time. Lo and behold there were more multiple clots. The moral of my tale is this. There are many symptoms of deep vein thrombosis and I think I have had them all at one time or another but not all together. Don't take no for an answer and insist on being checked out.
I had no symptoms of DVT at all. The first symptom I had was a pain in my right side (like a stitch) when I took a deep breath. I first noticed this when I woke up in my hotel room on a weekend break in Cornwall, following a 7-hour car journey. I put it down to a twisted muscle (sitting in the car all afternoon, sleeping in strange bed etc), and took some aspirin. Later as it was getting worse I went to the chemist and got some Ibuprofen gel still thinking it was muscular.
As the day went on the pain got worse and started to hurt whenever I turned or took a breath.
Then I found I was struggling to breath at all. At that point we decided to go to A & E. Good decision! At A & E they did a load of tests, but had the suspicion early on in my examination that it could be a blood clot in my lung, so I was given a heparin injection and painkillers. I think the early heparin possibly saved my life. I was then put on oxygen to help my breathing. None of the tests were conclusive (chest X-ray and ECG all OK) and they said I needed a CT scan to diagnose if it was a clot or not. At this point they hadn't ruled out an infection. The scan department was closed by this time so I had to be kept in overnight, and I am glad I was as I suffered a very painful night and was on oxygen for most of it. Anyway, the scan showed positive for several bilateral pulmonary embolisms.
This was 5 weeks ago. I had daily Heparin injections for the first 7 days, and Warfarin from the time of positive diagnosis. I am still off work and having my INR monitored and my Warfarin dosage is still being stabilised. I am supposed to stay on it for 6 months. Clearly long car journeys can have the same effect as long haul flights. My only risk factor I think was being on the contraceptive pill, which I have of course now stopped. And a further complication of this is that in ceasing it, it seems to have triggered menopause (unless hot flushes and night sweats are a complication of Warfarin!!) I am still feeling very tired, and get exhausted quickly, but not sure now if this is a side effect of Warfarin, my lungs having to recover, or my menopause!!
I suffered a spontaneous UEDVT in Sept 2006. I woke up, got in the shower and noticed that my right arm felt extremely heavy. When I got out of the shower I asked my boyfriend to look at it because it was bright red, swollen and very weak. I didn’t want to bother my doctor with so I thought I would call the NHS Helpline direct. I went off to work where they called me back and said I should make an emergency appointment with my GP. So from work it was straight to the GP who thought it looked like auxiliary vein thrombosis. He told me not to drive and to get my boyfriend to come and pick me up and take me to the admissions ward of the hospital. Even at this point I wasn’t bothered at all (ignorance is bliss!).
I was sent home and told to elevate my arm and rest. I was given Heparin injections for 14 days and put on Warfarin for 6 months. I was signed off work for two months and unable to drive for nearly the same length of time. I came back to the hospital the next day for various scans and x-rays and blood tests all of which came back normal.
It wasn’t until all the initial fuss was over and I was left alone that I began to realise how serious a DVT was. I cannot fault the way I was treated at diagnosis stage by all concerned and I have been told that I was thoroughly looked after.
My one enormous gripe about the system is the total lack of after care. Eventually I had to pay privately to see a vascular specialist. He didn’t really tell me anything I hadn’t already read myself through contact with other DVT sufferers and various other websites. The appointment did however give me peace of mind and that is such a huge weight off my shoulders. Just talking to someone who specialises in this area is unbelievably helpful.
After coming off the Warfarin for a month I had some blood tests taken which I am awaiting the results. I have been informed that if the tests come back normal I will not be seen by anyone and that is basically the end of it – unless of course I get another one!!!
I think it is important to point out that I was 29, fit and very healthy. I don’t smoke or drink excessively and was not on any form of contraceptive pill. I had not been on any long haul flights or long car journeys. A DVT can happen to anyone and sometimes for no known reason.
One of the most significant things that got me through the past six months was the support of other sufferers. I must just add enormous thanks to those that take the time to set up superb websites like these they are hugely beneficial.
To end on a high note – I am exercising again and I feel great for it. My arm bothers me much less and I don’t worry about each and every niggle I get. I try not to let it bother me so much anymore. I am 30 tomorrow and determined to look forward now. However I am far from complacent about it, I am very aware – that is all I can be.
In September 2005, my right leg started hurting badly after sitting for too long with my legs crossed one night. I'm prone to mysterious (and often unexplained) ailments that, most of the time, go away quickly. I dismissed it as a bizarre leg cramp. However, I had a feeling something was wrong with my circulation, as it felt like my leg was "filling up with blood" all the time.
My doctor also thought that it was a leg cramp, but it continued to get worse. After five days, I went back, and they recommended a leg ultrasound. The ultrasound showed an "extensive" DVT all through my right leg, ending midway up my thigh. I was taken immediately to the emergency department. I was glad I was an 'emergency'; I had to wait for about an hour just to see the triage nurse, and then another hour to see a doctor. Good thing I wasn't in serious trouble. A few different doctors came over the course of about 5 hours and prodded my sore leg, wondering why a healthy fifteen-year-old girl should have such bad DVT.
They then informed me that I would need Clexane injections into my tummy for about a week, as well as frequent blood tests to monitor my INR (Warfarin). I had a phobia of needles, so this news was even more distressing to me than the fact that I had blood clots in my leg! (Needless to say, after having so many needles, I now don't have a phobia.) After some tests, it was revealed that I had the defective Factor V Leiden gene, which caused my blood to clot more easily than it should. This, coupled with being on the oral contraceptive pill Yasmin (for bad acne and period pain), was the cause of my DVT. Six gruelling months of recovery followed. I had to wear compression stockings all through a very hot Australian summer, as well as at school (luckily I found skin-coloured stockings instead of the white ones...that would've caused a lot of questions.)
The veins in my leg are damaged - two valves don't work, as they should - but other than that, I am now fine. I go to an all girls' school, and have informed several classes in my grade that if they intend to use the Pill for whatever reason, get a blood test first for Factor V Leiden. I just hope that they listen.
Emma, Sydney, Australia.
I was diagnosed with DVT this week, (May 2007) after 2x 35hr travel stints with a week. I am a 31-year non-smoker. During my flights I abstained from alcohol, drank plenty of water and continuously stretched/walked. The pain started on the first leg of the first trip. I was experiencing excruciating pain in one calf muscle. I thought it was a muscular cramp that I couldn’t stretch out. 1 hour after I arrived at my destination the pain had disappeared. I didn’t give it anymore thought. On the last leg of the return trip the pain returned, but not to the same level.
However I noticed an abnormal amount of swelling around my calf muscle. I couldn’t fit my hands around my calf muscles, couldn’t move my calf muscles. I knew something wasn’t right and began to be concerned about DVT. Whilst in the car returning home from the airport I lifted my jeans to find I had the sexiest of set of cankles (when your calf & ankle merge into one aka “tuck shop lady legs”). My ankles had completely disappeared & my feet looked like they were blown up latex gloves. If I touched my ankle the dent my finger caused in my skin did not spring back. When I scratched my skin it stung like it was sunburnt. At the time I thought it was rather amusing. I wish I had taken a photo, as I am amazed at how large they were.
After 6 hours sleep there was no change. Trying to avoid a 4hr stay in an A&E waiting room my first stop was to a pharmacy to see if there was any ‘over the counter’ remedies (i.e. aspirin). The Pharmacist sent me to the doctor & the doctor sent me to A&E. The doctor weighed me. I had put on 6kg, which was accredited to fluid. I received a 70mg Clexane injection and took the option to go home & return at 8am the next morning for an Ultrasound & another injection. From the ultrasound they found 2 small clots in one vein located in my upper calf muscle. Within 48hrs of my first hit of Clexane my ankles had returned (thank goodness) and my weight had returned to normal.
Due to no other factors being in play the doctors have attributed my DVT to the pill. I had to stop taking the pill immediately. I also have to inject myself with 100mg of Clexane every day for 6 wks (I’m getting used to it). I can tell about an hour or so before my next shot is due as my leg begins to ache again. I have another ultrasound booked in for 2 weeks time. If the clot has not disappeared within 6 weeks I’ll be put on Warfarin, which my blood specialist hinted was rather messy & I would have to go in for frequent blood tests.
Kim, Victoria, Australia.
9 days after the birth of my 4th child I developed sore legs, which I reported to my midwives. They examined my legs, and said that I had no heat, redness or swelling. 3 days later worried about my legs, dizziness, chest pain and shortness of breath, I anxiously attended my GP. He informed me that I had probably pulled a muscle in my chest and was feeling vulnerable after the birth of my child. I insisted that this was not the case, and he reluctantly referred me to the A&E dept at the hospital. There I underwent an ECG, Chest X ray and a pulmonary angiogram.
I was shocked to be informed that I had a DVT, which had then lodged as a pulmonary embolus in my lung. I was put immediately on warfarin, and started Clexane injections. I was told that I was not able to breast-feed my baby, as the warfarin would pass through my breast milk into her system also. I was very distressed as she was only 12 days old. I remained in hospital for 7 days, and then continued on warfarin for the next 12 months. I never stabilised and my body metabolised the warfarin very quickly often resulting in my being on up to 15mg of warfarin per day. I was cared for by my GP (new one not the one who dismissed me originally) who was fantastic and also saw a leading haematologist in this field. I was very lucky! I underwent all the known tests for risk factors and pre dispositions to clotting when I finished my treatment and they were all negative, leading us to believe it was a pregnancy related issue. I have had surgery for other matters since, and have been given prophylaxis (?) daily heparin injections for a period of 6 weeks following, along with wearing compression stockings for the same period.
I am still very anxious that It will happen again. The slightest pain in my chest or legs worries me. Flying terrifies me though I wear the stockings and do the exercises, the psychological effect of having a DVT resulting in a PE is still with me. It's hard for others to understand and the fact that DVT can be so silent yet lethal really does leave lingering anxiety and fear. The biggest learning lesson that I came away from this with is to listen to your body, we know it better than anyone else and to insist and not take no for an answer when we know that something is not right.
Megan, Adelaide, Australia.
After at work as a hairdresser, I’d gone out in the evening, and thus spent most of the day on my feet. When I got home my legs were aching, and I put it down to being on heels all day. I got into bed, but couldn’t sleep, the pain was so agonising.
In the morning, I almost fell out of bed, the pain was excruciating. I couldn’t understand what I had done, had I pulled a muscle or twisted my knee? As I was home alone, I drove myself to the doctors; it was my only way of getting there. On seeing the doctor, he found three small lumps, each the size of a pea, two in my left leg, just above the knee and one in my right leg in the same place. There was no other swelling, redness or heat.
The doctor gave me a letter and asked me to take it to the hospital; I still had no idea what these lumps were. On arriving at the Accident and Emergency ward, I gave the letter in and before I could sit down to wait, I was put on a trolley and admitted. The doctors did a whole load of tests, including blood tests and a chest x-ray. I still hadn’t been told what was wrong with me.
I was put on to two drips, one in my left had and the other in my right, and informed that one was saline, the other heparin. I had Deep Vein Thrombosis and the three lumps were blood clots. No one really explained it to me what it was. I had to stay in bed for a week with support stockings on and my legs slightly raised. I was discharged after ten days, after the clots had been dispersed.
I was 21, it was 1976, and I had been told the clots had formed because I was on the combined contraceptive pill and according to the doctors slightly overweight. I had to see a dietician and in the process lost half a stone. I was told I could no longer take the Contraceptive Pill – I assume now that they didn’t have any alternative, which at that time they knew to be safer.
I remained on Warfarin for 2 years, with blood tests every two weeks to begin with and then less and less as the dosage stabilised. After the two years I was taken off Warfarin, as apparently I was back to normal.
The only time DVT has been mentioned since was during my two successful pregnancies in 1983 and 1986, when I was given Heparin injections after labour. Thankfully I have never had another clot, to date, but neither have I had a check up or follow up in regard to DVT.