Deep Vein Thrombosis (DVT) Support Group

hi maggie,
i can totally relate to your story. my heart goes out to you.
on the 7th of sept of this yr i went to a&e with a very swollen and painful right leg. i too had one massive clot from my ankle all the way up my leg and into my pelvis (as high up as my belly button.....................!!!................) doctors believe i may have had this clot for up to or over 6months!!!!!!!!!!! unlike you i had not experienced any of the risk factors associated with clotting. i hadn't recently suffered any injury, had surgery or flown and i do not smoke or take birth control pills. granted i hadn't been feeling very well for a number of months but nothing really rang alarm bells. i simply had a few aches and pain, was always tired and suffered from alot of,uti's. (what later turned out to be a poor blood supply to my kidneys due to the clot in my pelvis)
unlike you i was treated by means of thrombolysis. where my vascular surgeon injected clot-dissolving drugs through a catheter directly into the clot.
to say the least, no fun - 4 days in intensive care. on the 5th morning i returned to surgery and had a venous thrombectomy. (surgery to remove the remaining clot) on the same day may surgeon inserted an umbrella filter into my chest and up to 3 meters of stents running from below the filter to my lower right leg. (i have much vascular damage as a result of the clot). i am now on warfarin until further notice or someone figures out why i got such a large clot in the first place.
8weeks on and i only returned to work yesterday!!!! it has been very difficult to say the least. however i simply cant understand y you are expected to wait for your clot to dispurse. i hope for your sake that it does so quickly. u are in my prayers :)

Thank you Zord for replying to me. its nice to know I,m not on my own and are so pleased for you that your clot has gone and have returned to work.
I'd been to A & E several times firstly with swelling and servere pain in my calf , then four months after once again with pain and swelling in my whole leg from my grion to my toes. I was sent home with pain killers. Finally Id had enough I went back to A & E the same day and demanded a blood test and doppler scan.
They took my blood and gave me a Clexane injection and I was told to come back next day.
So next morning they gave me another Clexane injection and told me to wait so they could arrange a suitable time for me.
They must have had my blood results back because they took me for a doppler test straight a way. I must say when they told me I,d had a massive clot I could not believe it. The doc was has shocked has me.
They addmited me straight a way , The first three days I had to complete bed rest and had to keep the leg still, The first night I had a PE and was fighting for every breath, to be honest I thought I was gonna die.,my consultant wouldnt even let me go to the toilet, I had to use the pan.
I finaly got discharged 8 days after and was passed on to the Warfarin clinic. which I attend every week. Im still in a lot of pain and can only stand for about 5 minutes then I have servere pain.
Ive been told that I may have another Doppler scan in March and have my blood tested for sticky blood. Because my Granfather died of DVT and my younger bro has DVT too he has 3 clots in his calf .
I realy am so disappointed at the lack of info I have had since Ive been discharged. I feel like so let down by the NHS. Think Im gonna make an appointment with PALS.
Hope I havent given you a headache lol. Take care Maggie xx

I'm a 28 yr old male in Atlanta. I was bitten by a tick and developed an infection shortly their after (not sure what as tests were inconclusive), but while I was laid out of work with ridiculous fever, etc. On Oct. 17 (two days before my birthday) I developed an acute DVT in my left leg from my hip to my ankle, and multiple PEs in my lungs.

I was put on Heparain for 5 days and kept in the hospital. On my birthday I underwent a thrombolytic procedure to remove the clot from my hip to just below my knee, and received a temporary IVC filter. I then went on Lovenox for a week, and now Coumadin for at least six months. I also will be going to a hematologist because I came back possible for Protein C deficiency.

I'm wearing compression stockings which help immensly. But sometimes I have almost no pain, and some days it's excruciating. All of it is in my calf where they weren't able to remove any clot.

So, I can definitely relate to your situation. After researching DVTs like crazy, my mom and I did learn that DVT seems to go unrecognized and/or undertreated in the UK, so their may be other opportunities for you if you search around. It's definitely something (even here in the states), that you have to fight to get adequate treatment for.

If you ever need to talk, just let me know. I know what you're going through.

Eric

Maggie,

When I had my first DVT (along with a PE)back in 1992, the Venogram showed the clot extending from my groin to my ankle. I was told by the doctor I probably would never regain full use of my leg as a result of the residual damage to my leg. Prior to the Clot, I had raced Mountain Bikes for an all Navy team in Connecticut so I thought my amature career in cycling was over. From 1993 to 1995, I consistently stayed in the top 10 riders in the race series at the end of the year. In 1995 I suffered a second DVT opposite leg. Recovery from that DVT was a lot quicker.

It took a good 4-5 months before I was able to really start training after the 1992 clot. Things will improve, it will take time. Make sure you try to at least walk as much as permitted, and if you already haven't done so, get properly fitted for a pair of compression stockings. You are bound to have some degree of Post Thrombotic Syndrome (PTS). Wearing compression stockings can alleviate the problems encountered with PTS.

It may seem like a long road to recovery (cause it is) but things will gradually improve. I can remember leaving the hospital after my first DVT and thinking the doctor is right, with all this pain I will never be able to do the things I use to do. As weeks went by, I saw improvements, maybe not as fast as I would have liked but none-the-less, it was an improvement. I took what I could get and appreciated every milestone I accomplished along the way.

Regards,
Tom

Thanks Tom, for your reply
It was nice to have some good news even though it took you a while to recover from your Dvt.
Ive been told I cant wear support tights because my circulation , see before I broke my foot I was due for vascular surgery on the same leg has my clot. Ive already had the same surgery on my other leg 12 mths ago..
Im not getting much excercise because of pain in the foot and my leg but try to hobble around the house has much has I can. I suppose I have to be paient. Im so pleased for you on your recovery. Takecare Maggie x

Hi Maggie - I went to see PALS (Patient Advocacy Liaison Service) after dreadful experience at hospital - won't go into detail but similar to you I ended up with multiple PE's and emergency situation. Anyway it helped - not if I'm honest in terms of what PALS could do but it helped me get it off my chest and verbalise how awful the whole thing had been - I remember crying as I told them but it was relief to allow that frustration to come out. I am sure that things will improve - when I came home it was in a wheelchair - I couldn't walk, they wouldn't scan because as I'd had PE they weren't interested as treatment was the same. I started off trying to do a little everyday and everyday a little bit more things got better it took weeks but things do get better. I would be pushing now for a referral to haematologist given the family history there might be something that predisposes you to clottting but that doesn't necessarily mean warfarin forever. It's fairly standard practice in UK to be on warfarin for 6 months then do the tests. I can't really comment on why they can't do the surgery it seems v odd that you can be left with broken foot as part of your recovery from clot would be to be mobile...... Final point is that the lack of information is very common or contradicting information when you do get it. Be your own advocate learn as much as you can (this site is brilliant) and ask questions - use this site if we can help we will - be well soon x

I had DVT/PE in august this year. The pain from my groin to my knee extending to my foot was excruciating. It is a pain and achiness that noone can imagine unless you've been through it. Zord how do you feels now? That's incredible about how they did surgery and put in stents! See, the damage from the clots is often so severe to the lining of the veins and to the valves in the veins that it is debilatating with pain and use of the leg. It's sad that today with all our technology doctors really can't help us much and we have to suffer so much. It's the damage caused by the clot that is so insidious. I wish we had more effective therapies for our condition. We deserve better. I think DVT is epidemic and I think that alot of people have silent microclots that lay the foundation for big clots in the future. Too bad we can't detect them earlier. I think there needs to be widespread education on how to prevent blood clots and promote endothelial health (the inner lining of arteries and veins). I wish I could heal everyone here and take away your pain. My prayers are with you all. It is very iinteresring about the British health system and the other FREE healthcare systems around the work aka SICKO. Us Americans have a hard time dealing with the oppressive costs for our healthcare. Canadians, Brits, french, Germans, cubans are so so lucky. Remember everyone here, veins, arteries and valves are "muscles"! They really are! Smooth muscles to be exact. We all must EXERCISE these muscles by walking, bicycling anything to regain functioning if these veins, valves and arteries. My vascular surgeon tells me once a valve gets clotted it's use/functioning is gone forever. It may be but I'm not sure. Plus, we develop and have redundant veins and ateries to move our blood. By exercising your vein muscles we can possibly rejuvenate our blood flow, lessen our pain, swelling and aching feelings and maybe see a better say! Weight bearing exercise I do believe is important too in rebuilding vein function.

As I've mentioned previously, I, too, started with a massive clot from my knee to my upper thigh. After my second hospitalization where I was sent home on heparin injections with movement towards warfarin, I was unresponsive/resistant to the meds, so my clot continued to grow well up into my abdomen until I was finally hospitalized at a 3rd facility for emergency-based 3 consecutive surgeries to "blast apart" the clot in sections until my body rejected the catheter placed inside the leg vein by.....guess what? clotting!!!! My story sounds a lot like that of Zord.
It took nearly 8 months to disintegrate the remainder of the large clot on meds. My biggest issue remains the valve damage in my calf of my left leg.....it DOES make a difference when that clot gets gone! Hang in there!!