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 Here is my dvt story.

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theangrydvtguy



Posts : 10
Join date : 2012-10-18

PostSubject: Here is my dvt story.   Fri Oct 19, 2012 9:17 pm

I have been reading your guy's different stories and it almost brought me to tears. I used to be a very inconsiderate person before I got sick and this epic battle with evil DVT and Massive PE's has humbled me as a person. I don't have the severe end of some of the symptoms that a few of you guys have, but I do have a lot of pain, and I can't walk more than a mile before it feels like someone took a sledgehammer and smashed my foot into a million pieces. I am still able to move around the house, but I can't walk up and down the stairs normally. I can't walk with one foot and then carry my weight with the other. I have to put all of my bodies weight on my left leg and limp up the stairs very slowly - but other than that I'm very lucky to be able to move around and do some daily chores. I happen to run a small business from home so I can rest my leg and care for my symptoms a little bit better than some of you guys who have "bosses" looming over your shoulders.

The world is a very cruel place for people who are "disabled" or perceived to be "different" than the normal people. I have to move out of the way when I am walking and allow people who are twice my age to get around me, because I do not have that spring in my step anymore. But reading all of the individual stories on this site has made me grateful for what I do have - even if it is limited mobility; at least it isn't a wheelchair. I don't have any swelling in my leg - The swelling in my leg went away after wearing 20-30 MMHG Compression Stalkings, and it has not returned since. I couldn't wear the 30-40 as they were too painful. I am only wearing the knee high stalkings, as the thigh high stalkings caused massive pain in my thigh area. I also wear 20-30 MMHG Compression Stalkings on the good leg to give it a fighting chance against the evil forces of DVT.

I'm not quite sure how I developed this DVT other than the accident I had when I was unloading my Truck. I fell off of the back of my truck, twisted my leg, and I have had massive burning and pain ever since. I didn't have health insurance so "like a dummy" I just waited for the leg to heal on its own. I waited 5 months before I went to the Emergency Room "it got so bad that I couldn't even get up out of a chair" and by then the clots had spread to my lungs. I'm not sure if the clots were there before I had the accident, or if they were a direct result of the accident itself. I had been having low level chest pain for 3 years before I developed my DVT and I just figured it was air in my chest or something trivial like that. Well here I am "like the rest of you guys" dealing with this new challenge that has been placed before me. I am taking my Warfarin every day, and I have an appointment scheduled with the Hematologist, as my S and C levels were only 28. I do not have Factor Five Liden - but I might have Protein S and C Antigen deficiency.

What I want to know is how do you guys do it? How do you guys work 12 hour days on your feet in pain? Do any of you still take pain meds on a regular basis? Do you take them only on bad days? Am I a pansy for taking the pain meds to help cope with the pain? In my line of work I am in front of the computer, on the phone, and tied to a desk for 9 hours a night. Sometimes I move around or use a laptop downstairs where I can elevate my legs, but the pain still gets bad from the sitting. Can you guys offer any tips to help me manage my pain in a more productive manner? Sometimes I just get angry and punch things because the pain gets really bad (mostly during work hours when I try not to take pain meds because I need a clear mind). I just don't want to become angry and bitter with this. My friends and family have noticed me becoming more violent, combative, snapping on my business partner for minor details, and just going off on a moments notice and breaking things. I used to be pretty laid back before all of this happened and I still am in public (because I don't want to seem like a nut to the normal world). The nurses in the hospital loved me as a patient because I kept myself under control (never argue with people who are saving your life). That is a rule that has kept me alive for a long time. But I catch myself from time to time looking at people walking around without a care in the world, running, just thinking to myself "that was myself a year ago." Then I snap out of it and delve right back into reality.

I am still so grateful to have the level of mobility that I enjoy currently - and I would jump for joy just to know that my condition would remain exactly as it is at this very moment in time. I just want to try and hold onto what I have right now, today, and then restructure my daily activities accordingly. Once again, I'm glad to have found this site, and I'm grateful for each and every one of you for sharing your stories. This site makes me feel like I'm not in this alone "although I wish I was" because then the rest of you guys would have regained your lives. Any how I look forward to being your angry resident for many years to come.
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theangrydvtguy



Posts : 10
Join date : 2012-10-18

PostSubject: Re: Here is my dvt story.   Sun Oct 21, 2012 2:36 am

Did I get too angry for you all on the first post? I'm going to go in for my consultation with the Hematologist sometime this coming week and that has me on edge. I had a scare 4 weeks ago where I had severe pain in my left leg (the good leg) and chest pains again. I really thought the leg was clotting up, but the Ultra-Sound came back negative. In light of that I kind of backed off my doctor, because I raised heck in his office to get the scan, and I turned out to be wrong. What kind of gets me mad is all the docs in the hospital and this one keep telling me that "I am young and that I will get better!" Or they tell me that the long term prognosis is that I will have some swelling and that my leg will grow more veins to compensate for the damaged ones. The ER doctor told me that the swelling in my leg might never go away and it went away when I started to use compression stalkings. I had to get out of the hospital and read up on DVT to find out about wearing compression stalkings and the long term prognosis of PTS and PPS. Why do they hide all of this information? Perhaps my clot was chronic and they felt that it was too late for me to benefit from compression stalkings.

What really makes me mad is that they won't tell me if my DVT was acute or chronic. They won't tell me how extensive the damage is. I have a knot in the back of my knee that has been there for 9 months now. It is as solid as a rock and I haven't been able to kneel down for over a year. They won't tell me how extensive the damage is to my lungs. All they told me is that I have two pretty big clots in my lungs. Are they trying not to frighten me? Have any of you ever had to pry the information out of your doctors? I am angry, and I do take out my frustrations on inanimate objects, but never on the doctor or his staff. That being said sometimes I just want to grab him, shake him, or brandish a weapon (this is just an analogy don't take it literally) hold him hostage and force him to spend more than 5 minutes with me and give me a proper explanation of the damage. I go to the pulmonologist for check-ups every few weeks and the guy doesn't even check my oxygenation levels. It's like they simply whisk me in and whisk me right back out after checking my blood pressure and listening to me breathe with a stethoscope. What do you guys think? What have your experiences been with your doctors?
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dero
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Posts : 904
Join date : 2007-12-09
Age : 57
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: Here is my dvt story.   Mon Oct 22, 2012 3:34 pm

You were angry??? scratch
No, not at all. First off, I'll try to cover all the points you brought up...If I forget some, ah well, I'm only human. Suspect

When were you diagnosed, I (as a professional clot patient) suspect that there was some damage done to the veins and muscles in your leg, 5 months is a long time to be walking around with an undiagnosed clot.
Every clot is different, from person to person even with the same person, my two clots were totally different for me. The recovery time is also different with each experience.
That is the thing that everybody HAS to understand, we all react differently to clots, the recovery time and mostly the reaction that everybody has to the drugs (anticoagulants). Some people are on anticoags for 3 months, others 6 months and others are lifers.
There is no cut 'n dry answers. Everything I say here is based on my own experience with DVT, BUT one thing is that if you can't talk with your Dr. find another one. I have been lucky to find a GREAT medical crew from the getgo and I still see them, five years later.
As for pain killers, I did them when I needed them at first, but as soon as I could do without, I stopped. Pain killers are so easily addictive.
On long days at work, when I feel that either my legs are swelling I HAVE to go sit and elevate my leg (drain the blood that is pooling in my calf) it normally takes me about 5 minutes, everybody at works knows of my condition and know that I HAVE to do this and don't make a fuss about it. The same goes for when I'm sitting down for a long time, I have to get up and walk around. The other thing, I can't do a day without wearing my comp. socks (knee-high, open toes 30-40s)

Hoping that this helps...
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theangrydvtguy



Posts : 10
Join date : 2012-10-18

PostSubject: Re: Here is my dvt story.   Mon Oct 22, 2012 10:31 pm

Well, did you recover full use of your leg again? Can you walk up the stairs normally? I still have a hard time walking up the stairs and my good leg is still taking up the slack of my damaged leg. Not sure if there is muscle damage in the leg but there could be due to waiting so long. I still have no swelling in the leg - just pain. So perhaps I have good peripheral veins. Also, the doctors said that I had a really strong pulse in the leg. You would figure that by waiting 5 months to get treated my leg would have turned purple and some other more severe symptoms might have presented, and they didn't. But I can't go back in time and change anything - all I can do if hope for the best. Thanks for the advice,
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Bundii



Posts : 8
Join date : 2012-10-11

PostSubject: Re: Here is my dvt story.   Thu Nov 01, 2012 9:58 am

;0Hi Angry, Sorry to see you here but welcome anyway

A good doctor is hard to find especially one that will tell you everything. You may of read my story on here and well i feel where you are coming from. My first ever DVT episode once they admitted me to hospital the doctors would come around daily, in a big huddle, whisper to themsevles, poke, prod stare and then walk out without saying a word. At the point i was in so much pain i really didn't care, but i did want question's answered and they were no where to be told.

I always push for a ultrasound, it's better to be safe then sorry. You shouldn't feel bad for that. I do understand that doctors are hard to speak to. Where i am there is only 1 hema specialist that travels all up the coast to see patients, he did not really tell me much either except that my veins are pretty much screwed and theres not much that can be done! I just wish i had searched for answers on my own earlier. I'm gonna tell you the truth. MY life sucks, Chronic DVT's ( which im now classed under after 10+ DVT episodes). For a person in my situation it diminishes your quality of life 10 fold. My legs are always swollen, the pain is immense, i have varicous veins popping out left, right and centre, "warfarin scarring" as they put it here which my feet and ankles and now travelling up my legs are purple.

Usually walking on level ground is ok for a period of time, inclines even the smallest incline is dreadful, i can't do it and it makes me depressed (that includes stairs). It is really hard and i feel sorry you are in this position. All i can suggest is that if you are unhappy with your doctor right now to look around. I have one doctor now that sort of understands usually it's me informing the doctors on DVT matters haha. If you ever feel like talking and have facebook add me or email me ok, i need others to talk to aswell Smile

jackie19845@mail.com.
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theangrydvtguy



Posts : 10
Join date : 2012-10-18

PostSubject: Re: Here is my dvt story.   Sun Nov 04, 2012 10:39 pm

Thanks for the reply Bundi. I am so sorry for you. I hope they can come out with some sort of medical breakthrough in our lifetime to help rejuvenate our damaged veins. I am headed to the Hematologist on the 12th of this month then at the end of the year my state medical runs out and I will have to begin shopping for a private insurance carrier. If not I can pay my old doctor 60 dollars a month to monitor my INR Levels and Warfarin is only 7 bucks a month without insurance at Wal-Mart. At least treating this has been pretty cheap so far. Maybe I will just skip the scripts and buy myself some De-Con might even be cheaper. J/K. I hope you feel better. I may send you an email when I get a chance. Here it is Sunday night and I am doing a bunch of paperwork so that I can get all of my drivers paid on Tuesday. Take care.
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TimfromNOCO



Posts : 2
Join date : 2013-05-03

PostSubject: Re: Here is my dvt story.   Fri May 03, 2013 5:16 pm

Have been reading some of these threads... pretty incredible. I see something of me in all of you. (Especially you, Angryguy).

I thought I had a decent doc. But as I read this thread and others it seems there are so very many loose ends which have been left flappin' in the wind.
*Never considered or had it recommended that I might benefit from another ultra sound to see what's ticking in there.
*Nobody's told me jack-squat about the different types of stockings. This includes the idea that my ankle/foot may need more support than the thigh. My wife runs across different kinds, picks them up, and we do a trail and error on the new ones.
*I was told because I was on warfarin I had no need to worry about more clots... sounds like maybe "not so much"?

Don't want to wander too far off the thread. Will look for thses details and more in their proper places.
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Bundii



Posts : 8
Join date : 2012-10-11

PostSubject: Re: Here is my dvt story.   Wed Jul 31, 2013 7:19 am

Hi Tim sorry this is months late but I would definitely if you feel that there maybe something still there push for a ultrasound. Also bring up the topics about the stockings wi your doctor. I know that they have never pushed for me to wear stockings it never comes up and when I go to hospital I am never given any. All the other patients are given them if they are in hospital for more then 24 hours as a precaution but I have never been given a set I always thought it was weird considering I'm the one with the clots lol. Never say never about a clot forming while on warfarin. Even when I had my inr over 10 my right leg swelled and I told the doctors I'm positive I have a clot and they were 100 percent sure that I could not possibly have one, a week after I got out of hospital my doctor noticed my leg was still swollen. Sent me for a ultrasound and sure enough a clot. Just never think that your I. The clear because it can happen.
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