New here after 10+ DVT's

Hi everyone, im very glad i have found this forum. For the last 7 years i have had over 10 DVT's. I was 19 when i got my first ever DVT (the most extensive and painful one) i was wheel chair bound for about 3 months and ever since then have had clot after clot. I a lifelong warfarin user and clexane but still have problems with getting my INR stable. My first episode i had a clot that ran from my left ankle up to my belly button and a in my right leg one from my knee to my pelvis. 6 months after my first episode i had pain in my right leg and they sent me for a doppler study to reveal a new clot and that the old clots had not reduced at all. So it's been loads and loads of daily INR's doppler studies, a few D Dimer tests with no answer as yet.

I can say my life turned 360, i was a healthy woman who played hockey for years with no medical problems. On my third time being admitted to hospital for a clot i remember a nurse telling me that "you'll never have kids now" that has haunted me from that day. I have had 2 miscarriages that they say was caused by my blood issues. My quality of life has diminished completely, my legs are so damaged it takes me about a day or 2 to get the swelling to go away and it comes back about 10 mins after i get up. Can't walk up steep inclines or stairs more then a couple of flights before my legs feel like they will explode,my toes turn blue if i do a quick walk. It is such a downer to try and go up a walking track with a friend and you can't even make it up the first small incline. I have severe PTS. The pain is not as bad as my first ever clot but it is consistently there. I now have quite extensive varicose veins in both legs that my doctor is going to look at getting removed for me if the surgeons will allow it (the last surgeon i seen a couple of years ago said it would be pointless to remove them as they will just come back!) He was also looking into trying to clear my veins with a treatment like a glue? but because some of the clots are so old i do not think it would work. I think i didn't get the help of a better doctor who actually knew about DVT's earlier on, i think i could be at least a bit better now.

I am really at a loss of what to do, I had an amazing job once i go over my first episode of clots i absolutely loved it and then i got a superficial clot which got infected with cellulitis and my boss fired me for being a "risk". I can't seem to find a job because OH&S say im too much of a risk. My life is heading in such a downward spiral i truly have given up. I just don't know what to do anymore. Sorry for such a down post but this has really affected me.

I just read your post and my heart goes out to you. I just spent my 60th birthday in the hospital with my very first episode. That was about 3 months ago and I'm still struggling. As you know, I have been through tests, procedures and several Dr's. Mine was not diagnosed early either.[i]I now see a Vascular surgeon at Duke on Monday. I am praying that will be the answer to my nightmare. My left leg is blocked in my pelvic area. The whole leg is swollen and painful. I can barely walk. I need constant help.
When I read about young people going through this...it really saddens me. It's awful for me but I try to imagine if I had this in my 20's or 30's. It's unimaginable. I have had an active wonderful life. Four children and 5 grandchildren now. I had great employment and loved my jobs. For years I was an on air radio personality. I also worked in advertising and Real Estate. So I can appreciate years of satisfying work. I was blessed and did not realize it. I sure do now.
I wish I could help you. Is there anything I could do?? People do care.

Hi NC, thankyou very much for your reply. Just one thing when you go to see your surgeon - Do not let him blow you off and say there is nothing that can be done, you are only at the early stages so a stent or Trellis should work for you and be successful.

Both of my pelvic lliac veins are blocked, i have still my old clot in my IVC upto my belly button, behind my knees, multiple different spots in my thighs and most of my calf veins are also still clotted. I just wish i had done more reading up on this stuff back when i was 19. At my local hospital i really didn't get to speak with any specialist just had the occasional sidekick come around and have a look tell me once i was in therapeutic range that they would let me out. Almost all of the other general doctors i have seen have no idea about DVT's. I know when i have one, the doctors sort of laugh at me like how would you know? Only to send me for a doppler and find another clot ontop of the old clots. Just the usual routine of go to the hospital i'll see you when they let you out!

I once got to see the Hemo, he was very stand offish. The doctor i was seeing had sent me there regarding the miscarriages i had and to make a treatment plan for if i wanted to try again. He just basically told me what i knew which was no warfarin only shots. He just basically told me your veins are destroyed and theres nothing we can do for you.

Over here (Australia) we have good healthcare but very bad specialist systems and lack of knowledge within the general GP's. Had i of known that there were other methods of opening the veins up earlier on i would of flown anywhere in Australia i had to and gave it a go. The varicose veins are terrible and i know for a fact that even if my doctor tries to push the referral for them to be done i will most likely be declined as over here they will not do it if you are in your "child bearing years" and the time i was referred to them when i had only 1 they said they wouldn't do it because it will just come back. Im still very open to try stents but i have read that in my situation it probably won't work since they are old, the new one they may be able to but it's not a pelvic or vena cava one its in the popliteal vein behind the knee.

You think you go to a doctor to get the best care you can get and it's you who is the one that knows more about your condition, affects, treatments and options then them. I know the US systems have amazing hemo's and treatment options available and i often wonder how i could go about to speaking with one but at the same time i know it's probably too late. Im just tired of being tired and being in pain and having my legs totally disfigured (have what they call over here as "warfarin bruising") the multiple varicose veins and no social life at all. I find it hard to explain to the GP's here about my PTS symptoms they look at you like your lying or it's not that bad really. I know i should be greatful that after all these DVT's that im still alive and haven't had a PE yet but really some days i think im not and i just wish it would kill me to get me out of this crap i have to call my life now.

The job i had my boss had been through a PE and she understood everything they then sold it to complete a#$holes (sorry) and when i had to take a day off because of the infected superficial clot they fired me. I don't think i personally know anyone in real life around me who even understands and it's so hard to explain and humiliating that i can't do what they can.

Thanks for the helpful advice. The surgeons office called and changed my appointment from last Fri to tomorrow (Monday) So....waiiting in pain. I know what you mean about nobody understanding in your circle of friends and aquaintances. I too, am almost embarrassed to continually speak about it to friends who can't relate what its really like. I feel like a constant whiner. Others cannot understand how this ruins your life. Your life changes drastically and possibly forever. It's sad. It's scary. I hate it. You have dealt with this so long.....how do you spend your time? I am not use to being this sedentary..I sit almost all day. I'm on my laptop a little, magazines a little and some tv. That's it. I have to shower quick and everytime I get up.....I don't have much time until I need to get back to sitting. I will let you know what the surgeon suggests tomorrow.

I hope you get the answers and actions you need. Your spot on about the friends. Mostly i just stay at home, ive noticed ive started to get sort of anxious when i go out alot. Lately ive just been looking into options and possibilities for my clots and i did start going for walks but i now have a ulcer on my big toe and it's pretty bad and painful and due to my DVT's i have practically no circulation in my legs so healing that is going to take a good while. I just actually got home from hospital getting it looked at and dressed properly and found since i have been on the antibiotics my inr has dropped from 3.6 to 1.1! I cannot seem to stablise it whatsoever and any new medications mess with it severely. So yeah i just have to laugh right now because its goin from bad to worse, i must of been horrible in a previous life

I feel bad for you Bundii. I hope you get to feeling better. It's so true the doctors don't really understand how painful Post Thrombotic Syndrome is. My doctor just tells me my leg will have some swelling and minor discomfort for the rest of my life. I can guarantee you that if a medical doctor had a DVT they would be whining like a baby and getting all kinds of treatments done to themselves. I'm still not sure if I had the DVT before I fell or after I fell, if the DVT was acute or chronic, how extensive the damage is. No one will tell me anything. All they do is pat me on the shoulder and tell me that It's going to be alright. They just want to hand us Warfarin and make us go away. It's a shame.