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Deep Vein Thrombosis & Pulmanry Embolism


Guest USdvtvictim

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Guest USdvtvictim

Hello....I am a 49 year old female. I had knee surgery in April 2007 & developed Deep Vein Thrombosis (DVT) behind the right knee and also Pulmunary Embolism (2 clots which broke off and went to my right lung). I feel very fortunate to be alive however I am wondering how long the pain and swelling will continue. I see a hemotologist doctor and my blood level is 1.8 as I am now on Coumadin 10 mg. I was on heperin in the hospital when this first happened. I spent 10 days in ICU in the hospital. My leg continues to hurt and swell. I am now also having problems with the knee (inflammation, swelling and possible pinched scar tissue) because it has never properly healed maybe due to being so immobolized in bed from the clot situation. The clots extend to my calf and into the pelvic....I have tried to find out if I have clots that also extend from the pelvic and into the heart but the doctor says they cannot tell from a Doppler. Is there another test for this besides the Doppler test??? I am trying to use common sense and figure that if the clots are from the calf to the pelvic they would most likely be also from the pelvic to the heart. I have had several Doppler tests which show the clot has attached to the vein. I am taking this to mean that blood flow is still restricted. I am reading that more problems will come in the future such as veins becoming closer to the surface of the skin, ulcerations and more. I am concerned because mine is a workers comp injury and I have been sent back to work part-time. Does anyone know if this will be a life long disability??? I am being told by workers comp & my workers comp doctor that I should be fine in a few months yet they also tell me that I may have to be on the blood thinners for life. I am seeking a second opinion from another specialist that is not on a workers comp panel but would like to know if there are others who share this problem that could give me some insight to what the future holds. Thanks so much! Sally

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Welcome to our forum Sally

I have had DVT and PE. The underlying risk factor for me is hereditary Protein S Deficiency so I am taking warfarin (Coumadin) indefinitely. My DVT wasn't picked up straight away so I wasn't a candidate for clot busting drugs (possible during the first few hours), so my clots have been reabsorbed by the body. As I understand it this means they melded into the sides of my veins and damaged the valves that stop the blood from flowing back down to the legs. So my circulation isn't what it used to be. The blood is diverted around the less effective veins causing varicose veins. My feet and ankles are also stained by the small blood clots just under the skin. I have seen some marginal improvement in one foot about 10 years on, but the effects became most apparent about one year after the DVT. It is a minor complication that affects a few people after they have had a DVT. The swelling will probably go down in a few months but everyone is different. I think it was about a year before I stopped feeling 'broken' but in this time I also became very concerned about every little twinge... I got them all checked out but don't be afraid to do the same because it is the only way to put your mind at rest. Today, my lifestyle is pretty normal, although I'm careful regarding injuries because of my warfarin. I eat and drink moderately so as not to upset the medication and get this checked every 2 to 4 weeks. If I'm unwell and take other drugs then my warfarin checks are stepped up. My DVT leg is still a couple of inches bigger than my other one. I get quite bad leg cramps if I fold my legs but otherwise everything is almost back to the way it was. I have acquired gout (inflammation of the joints) as a side effect of long term use of warfarin and take allopurinol to counter that. New drugs are on the horizon so I'm not worried about having to take warfarin for the rest of my life.

BTW, I lost my job because of my DVT even though it was illegal for them to dismiss me because of it. I found it hard to get good performance reviews in my next job because of the PE (a year after the DVT) and the resultant extra time off work for blood tests etc, so I became self-employed. It was perhaps a risky strategy to go self-employed because of the risks of being unwell but employers can't give you that much more security. I don't worry about my work... my personal life is more important to me.

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Guest USdvtvictim

Hi James....Thanks for the input!! Did you have a PE one year after the DVT even though you were on blood thinners? This is a scary thought. As well as the gout and varicose veins! I work as a correction officer at a jail. I am not sure that I will be able to perform these duties as we have to wrestle with inmates who are intoxicated and have mental problems. My doctor's suggestion is to "find another job" but yet he will not say that I am "disabled" just that he expects I will never be able to do this job but he cannot say "for sure". I feel I am getting the run around. I am not sure if anyone would hire me in my present condition and feel that I will lose my job over this! Are you able to do physical jobs?? How long did you say it took you to feel "unbroken"??? My leg swells and hurts along with feeling heavy....Are there other symptoms to come in the future besides the gout and varicose veins? Thanks for all your help. I am so confused! Sad Sally!

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Hi Sally

I understand how you feel, it is all very confusing!

Like James, I have heriditary PSD however, I do not take blood thinners even though I have had a DVT back in 2001 (but thankfully no PE).

Have you been told the reason why you got the clot? Do you have a clotting disorder?

You say that you have pain and swelling - do you wear compression stockings? I wore mine every day for about a year or so after my DVT but now only wear them if my legs swells up or starts to get a bit achey. I'd like to tell you that the pain stops but I had my DVT nearly 6 years ago and I still find my legs ache/hurt at times. The leg that I had the DVT in is still swollen and I'm not sure that it will ever go down. It is interesting what James says about the clot being reabsorbed into the body and damaging the valves, I wasn't aware of this but I suppose the same has happened to me. I also get cramps sometimes, especially if I've had alcohol, I guess it's to do with dehydration.

It is something that I have to live the rest of my life with, but I'm only 26 and I refuse to let it affect my life. Apart from never wearing skirts now, I live my life exactly the same as I did before. However, I must point out that I'm not on anticoagulants so do not have the side effects of that to contend with!

If you are on blood thinners then they do advise that you try to avoid contact sports/activities where you could bruise/damage yourself because of the risk of bleeding associated with the medication. I assume this is why they have advised you to find another job. I have never had an issue with my DVT when trying to get jobs, I have a moderately physical job now where I come into contact with large animals and I do just fine, it wasn't an issue to my employers.

I was given a choice after my DVT whether to continue with the blood thinners or not. The Drs said the risks of me being on anticoagulants for life were about as bad as the risk of getting another DVT, so it was a 50/50 choice. I chose not to take the blood thinners.

I think everyone's case is a little different which is why Drs don't have definitive answers about what we should do, what will happen etc.

Angela

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When I had my PE a year after my DVT I wasn't taking warfarin. The standard approach for anticoagulant therapy is warfarin for 3 months after the first clotting episode. I was screened when I came off the warfarin and if the hospital had done a proper job I would have been diagnosed then and there. However, they didn't screen me properly (I was none the wiser) so my heriditary psd wasn't picked up and I stayed off the warfarin.

After a second clotting episode ithe standard approach for anticoagulant therapy is warfarin indefinitely. I've been taking warfarin ever since my PE with only a brief break to go on low molecular weight heparin injections so that I could be screened. That was when I was diagnosed with PSD. It's a shame they didn't pick it up sooner and save me the pain and risk to life. Hey ho, that's how life goes.

I also get cramps when dehydrated. I had very bad cramps this morning and looking back on yesterday I was too pre-occupied with work to drink enough fluids. Alcohol definitely makes cramps more likely. I wear compression stockings when flying or if my legs feel uncomfortable.

I don't have a physical job but now my health is more settled I do all the normal sort of active things like home improvements and gardening. I don't consider myself disadvanatged but I am very safety conscious now. I know from previous discussions on the forum that some people in high contact professions such as police and army have lost their jobs following diagnosis... unfortunate but understandable... some people need to be able to rely on the fitness of their colleagues in some jobs.

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Guest USdvtvictim

Dear James/Angela....Thanks so much for the information! I had knee surgery in April of this year after a work related injury while trying to control an inmate that was trying to kill himself. According to my hemotologist the DVT & PE was a result of "trauma from surgery" enhanced by the fact that I was on Hormone Therapy (Estrogen). I was not told to go off of the estrogen before surgery by the orthopaedic surgeon. The blood doc tells me that I will "probably" be on blood thinners for the rest of my life. I am glad that you told me some of the side effects James! Angela....I do wear the compression stocking and this makes the leg feel better to some degree. I was told the same as James....that the clot "molds" itself to the vein and therefore you do not have good blood flow and that this will never go away. The blood doc has said that varicose veins is possible because the smaller veins end up doing more work as a result of the larger vein being partially blocked. It seems there are diferent ways to approach the healing process???? Angela...you said that your DVT happened six years ago and your leg is still swelled....have you been warned to stay off hormone replacement therapy in the future or birth control??? I had to have a hysterectomy in 2005 due to a fibroid tumor so not being able to use estrogen is not a good thing. I have trouble concentrating, some short term memory loss, hot flashes, night sweats and chills to contend with along with the pain/swelling in the leg & taking blood thinners. James: Does the Coumadin make you have pains in your stomach?? I have had stomach pains ever since I started on the Coumadin. James: Sounds like you are very lucky to have survived two attacks!

Can either of you tell me more about Protein S Deficiency??? I was tested for cancer (as some types of cancer can cause DVT's) and also tested for blood disorders....which the doc said these were not the cause of my DVT. I expect to lose my job because I do not see how I can even put myself back in the position of being around prisoners and inmates. My regular PPO doctor is telling me that I should not have been sent back to work at all.....but the workers comp doctor has sent me back for light duty. My employers are telling me that I will "have" to eventually return full time as a correction officer or ???? I can guess what the "or else" means at this point. But I would not want to rely on myself as backup so I can not expect my coworkers to do that either.

From what I understand is that both of you are much better but that you are not back to 100% and never will be. Although you both sound as if you are doing real good! We sure are lucky that the DVT & PE's did not take our lives. Makes me ashamed to complain but I really want to know what to expect in the future. I have considered (like James) did about going into business for myself. Right now I am just very unsure about the future! Financially and physically!

I do very much appreciate the info you have taken the time to tell me! It helps to know that I am not alone! Any more info that you can give me would be greatly appreciated.

Sad Sally :(

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Sally I'm sorry you are feeling sad - can you call yourself a tiny bit hopeful? Don't despair just yet.

I can imagine it is hard to be so up in the air with your work and I can totally nderstand your fears for your leg: when I had my clot which is like yours from ankle to groin and possibly beyond, I was 29, had 2 young children and a baby only 8 months old.

For the first weeks I couldn't stand, climb the stairs or carry my baby. I rested my leg on the nappy bucket when I sat at the table to eat because if I put my foot down it felt awful. I had crutches to get about outdoors but didn't go anywhere for about 3 weeks except to the hospital for my treatment becuase it just seemed so complicated and I didn't think I could use the clutch on the car at all. I carried the baby in a sling and used the crutches which people thought was odd but I couldn't bear any weight on my leg and push the pushchair!

Fortunately I wasn't working at the time or my employers would have had real trouble finding cover for 5 adult education classes at different locations throughout the county.

I couldn't wear any of my trousers because I couldn't get my thigh into them. My knee was fat and unbendy an my ankle was also swollen for ages. I wore compresion daily and tired to move about as much as I could. I found that cycling really helped as I could push with my good leg and just let my other leg go round and I wasn't nearing all my weight on my leg either unlike walking. After about 18 months of hard work my leg was back to almost normal size in calf and thigh. If I had been at a desk job I don't think I would have been able to get my leg back into shape at all. Oh and try elevating the end of your bed to help your leg drain over night.

My clot is still in my vein too and even after 2 years I could see on the scan that half my vein is occluded all the way up its length. I have a small varicose vein right at the front of where my hip/groin and belly meet but the rest of my leg looks fine vein-wise and I have no staining.

The only time I find that my leg bothers me is if I sit for prolonged periods like at the cinema or in a restaurant or at conferences etc or if I kneel down on the floor with the children for too long. I still wear compression daily as without it I feel uncomfortable within an hour.

Do you think your symtoms might be related to not taking the estrogen supplement that you were before? I have been advised not to use any hormonal contraception or hormone replacement therapy in the future so I may have a bumpy menopause too look forward to.

You are at the start of a long road and as time goes on you will see improvements in your leg and begin to feel that it is not the only thing that defines you. All you can do is keeop your shield up to protect you (taking the coumadin) wear your compression and try to keep your leg moving to move the fluids around which have collected in it since the surgery and clot.

Talk to people about your business ideas and see how you can make that a reality: keeping my head busy kept my mind off the doom of my body so it might work for you too!

There is a lot of info on the main site about PSD click here www.protein.org.uk

take care and keep smiley

Rachel

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Angela...you said that your DVT happened six years ago and your leg is still swelled....have you been warned to stay off hormone replacement therapy in the future or birth control???

Yes, I am no longer allowed to take the birth control pill - I was taking it when I got my DVT but then we didn't know that I had PSD. PLus, I have been told that I will not be able to take HRT when I'm older. I 'm hoping that by the time I get there (I'm only 26) they maybe will have come up with and alternative therapy!

I have also been told that when I am pregnant I will need to have heparin injections throughout the pregnancy.

Protein S Deficiency is a form of thrombophilia, it makes your blood more likely to clot than 'normal' blood. Protein S is a protein that is involved in the clotting cascade, it works with another factor in the blood to prevent clotting when not needed. Therefore, a deficiency in this protein results in an increased tendency to make the blood clot.

However, you mentioned that you have been tested for blood disorders and the Drs said this was not what caused your DVT, so I would imagine you have been tested for PSD.

Like, Rachel said you are at the start of a long road but it does get better!!

Angela

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Whether you have an underlying pre-disposition doesn't really matter - the cause of your DVT was the trauma and knee surgery.

I would say that although my body isn't what it used to be I would still regard myself as 100% able-bodied, just tempered by a more conservative risk assessment on certain activities. Yes, my leg is still swollen, by about a couple of centimetres extra girth around my calf but this only really affects the cut of my jeans - I need a boot-leg cut or one leg gets stuck to the fabric whilst the other runs free. Hardly a major problem. The post thrombotic syndrome that leads to varicose veins and blotchy legs doesn't affect everyone and compression stockings are popular for relieving leg tiredness, which is more frequent during the first year and often negligible thereafter for many people except on prolonged periods of rest. Of course there are exceptions but these are generalisations and you may well miss out on the worst, as most do.

My decision to go self-employed was largely borne out of the need for regular hospital visits. Ten years on I hardly ever go to hospital for my thrombosis related issues, and blood testing is carried out by my local doctor's clinic (e.g. this morning).

Remember to look after your psychological wellbeing and speak to friends and/or trained professionals about how you feel. If you are still alive and posting on the forum then you've won half the battle... think survivor rather than victim and who knows it may even empower you to get more out of life. Rest first though!

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  • 2 weeks later...
Guest sheila8906

hi there everyone

im from yorkshire england-51years old-very underwight<not that anyone cares>and have hereditary protein s deficiency. my mum was 46 when she died of subcranial blood clot. im from a family of 1 sister and 6 brothers <im the middle child >but none have this disease.my inr is regulated between 3-4 taking 12 mg of warfarin and i coagulate myself after my husbands employer purchased a coagucheck s monitor for me. the local health authority dont like it because i have jumped 2 years ahead of what they were going to do <let patients do their own blood test but ring up for dosage>.since 2001 when i had a filter put in i have had numerous attacks of excruciating pain enough to put me on my knees. many investigations later they basically tell me im imagining all pain.so are my husband my family and gp. im not a doctor just an ordinary woman who is not well and the powers that be say its in my head.now my life story has finished can anyone help me with my query.i can be sat having a cuppa when this pain strikes.my right lung expands and the ribs show extensively as if there is no more room to go.i cannot breathe in- just out quickly. but on using vascodilator all is well in a few minutes.i was given this by gp firstly then i saw consultant who prescribed the same .nothing wrong with heart<tests done>my query is that vascodilators open arteries to let blood flow freely so even though my blood is at perfect inr is it now thickening too much and not going through veins smoothly hence the attacks and use of vascodilators. i put this to all consultants seen over last6 years and basically they say nothing untoward. i know my body and i know pain is prominent.xrays show unusual subsegmental soft tissue but this is dismissed by consultants.can anyone help please

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  • 3 months later...

Hi, Sally.

After 24 DVt's and five Pe's in 19 years and I will be taking anticoagulants for life I still have chronic pain & swelling in my legs (apparently they say that everyones legs swell during the course of the day dependant upon how much you stand up and walk around) After Dvt's they tend to swell a little more, imagine a pipeline Sally that delivers fairly high pressure fluid pumped down it by a pump (your heart) only this pipeline carries blood in both directions oxygenated blood going down your legs and non-oxyegenated blood returnning for recharging with oxygen.

The oxygenated blood travels down the legs at higher pressure that the retunning blood and it is the returnning blood that is slowed even more by the damage caused by blood clots which makes your legs swell more so than someone who hasn't had blood clots. This is why elevating your legs whenever possiable helps to drain the legs and reduce swelling, have you ever noticed that first thing in the mornning your legs won't be as swollen as the end of the day, that is if you sleep in a bed laying reasonably flat at night.

Sometimes i make the mistake of falling asleep in a chair and this makes my legs continuesly stiff and excessivly swollen the following day.

I even still now get chest pain in the sites where I have had Pulmonary emboli esspecially in really cold weather.

I take 180mg of Dihydracodiene every day sometimes increasing to 210mg dependant upon the amount of activity i do.

Everyone is different and I am not aware of anyone who has had as many blood clots as i have had, many people who have just one or two dvt's tend to carry on with their lives quite well as if nothing happened at all in my case i have lost relationships and my bussiness and now I am dependant on state benefits and being called a scrounger because I cannot stand up long enough to carry out the mosty simple of tasks ie cooking a meal.

I did suffer cramp quite a lot until recently when I was diagnosed as being diabetic (type 2) but now the suguars are settled the cramp has subsided.

One problem I do have and am told is caused by poor circulation is Planter facitius or heel spurs sometimes known policemans heel, this is a spur of bone growing downward on the base of your heels which stick into the tendons in your foot. not everyone suffers with it and obviously I would hope that my case is extreem compared to many other blood clot sufferers, these heel spurs make it impossiable to get to your feet in the mornning and warrent the wearing of special splints at night to keep your feet at right angles to your legs keeping the tendons in your feet stretched so they don't shrink causing severe pain when you stand up in the mornning. I need to have depomedrone steriod injections in my heels every three months which gives me roughly six weeks pain free.

The main longterm worry that I have is that I now have a inguinal hernia probably caused by lifting heavy objects at work years ago and if i cough I can feel my insides moving about and sometimes it can be very painful.

The Hospital surgeons consider it far to risky to give me a general anasthetic to repair my hernia so if i need surgery in the future any surgeon may be just as reluctant to help me out because they are scared that they might just kill me off if they don't get the amount of general anasthetic right which can cause another blood clot and possiable death.

After a normal healthy childhood and teenage years i will never understand what changed to make me suffer so much illness from the age of 23 the doctors have never put a name to my condition I have spent 8 hours a day for weeks in city librarys just reading books about biology to try to understand why it happened to me but I still didnt find the answer.

I have had problems with my eyes drying up (Dry eye) and now have to lubricate my eyes about six times a day this was caused by Dihydracodiene pain killers which dry up the fluid ducts in your eyes, my corneas became scratched and I went blind for about three months but as long as I use the artificial tears my eyes are fine now.

Sally don't get depressed OR sad just do what i do remember that there are so many others in this world that probably don't have the same quality of life as I do, who suffer more pain and anguish than i ever will and i am greatfull that my life is not as bad as theirs.

A parable is told of a farmer that had a donkey/mule who fell down a well the farmer couldn't release the donkey/mule so he decide to bury the animal and put it out of its misery when the farmer started to fill the well with soil the donkey/mule realised that it could shake the dirt off its back and step up eventually the ground beneath the donkey/mule started to rise and eventually the donkey/mule stepped out of the well and was free. shake it off and step up the adversities that come along to bury us usually have witin them the potential to benefit and bless us, now I can't admit to being benefitted by my condition or as a matter of fact blessed either but i am glad to be alive and that dear Sally should always remain your point of focus, don't worry about what is comming concentriate on the here and now and enjoy the very fact that you are alive and at least capeable of communicating with others.

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  • 4 weeks later...
Guest katbeaton

Hi Sally

You are not alone. I took my first pe at 19 after getting my tonsils out. My mum did ask the question at the time of my op about clotting because she has had 5 x dvt in the same leg. Then they did not believe that clotting could run thru families. My friend died of cancer and a magazine did a article on her and in the mag was a scienist whom was doing research clotting disorders and family links. Low and behold we both had the same faulty genes C & S. Your lung will try to repair its self but mine was dodgy and caused problems which lead to the lobe being removed. On excerise I was encouraged to do was swimming as it is great to help you breathe. I have now been told that really has made a difference to my lung. After this I have gone on to have a wee boy. I have the depo birth control and I know my mum gets HRT. Things are changing and progressing all the time. I have had 10 years with not a lot of problems just my gall bladder and another dvt after a bad fall. My problems have just started again. I've have lots of little clots in my bad lung and its still doing a dodgey repairs. I took a dvt when they were doing the angio gram. So I'm now on warfarin for life now which I allways knew was going to happen. A couple of weeks ago I clotted again another pe but this time it's my good lung this while on warfarin which is not good. I have allways felt you have not to let it gat you down. It could be that you clotted because of the op and not being mobile. I would ask to be tested for a clotting disorder for your peace of mind. It takes a while to get back on your feet again, but remaining positive does help. At the moment iu don't know what the future holds for me, the docs are hoping that keeping my blod thin will help the dodgy repair. If not it's another op on my right lung. If the left does the same I should have 4 years till that one goes, but just now I'm enjoying being an at home mum to my 6 and half year old. I'm getting spoilt by my hubby and life goes on. Please don't be sad your job can be changed and "what is for you won't go by you" I'm a big girl, married and a mummy which to be honest I never thought I'd be.

Kat

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