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Blood Clots (dvt)

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Hi,

has anyone ever experienced blood clots (dvt's). I have had two boughts with blood clots. Once in sept. 2003 and again in aug of 2005. Both required hospitalization. If so, would you please share you experiences with me....

I had a greenfield filter put in to catch any clots that might break a loose and I was wondering if anyone ever had any experiences with such a filter. I heard that they can sometimes get infected. I heard that they are not 100% guaranteed as a clot could break loose and still get through the filter, etc. Is this true.

I also, have been on coumadin for the last 2 years. Just a month ago my doctor checked my pt/inr level and it was too low (normally levels would be kept at 2 but for me it's 3 because the clots did not dissolve at 2) and he doubled my dosaged of blood thinner. Then last week I kept feeling dizzy and lightheaded and found out that my pt/inr was tooooo thin 7.65 (dangerous). Does anyone know whether or not lupus could be causing my blood thinness levels to fluctuate?

I'd appreciate any replies.
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First Helper Hollydc
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replied August 21st, 2005
I have had 3 serious bouts with blood clots and have been on thinner for 15yrs. Dr did a test that said something was lacking in my blood that made me prone to clots and I will never get off thinner for the rest of my life. A filter was never mentioned. I hate the blood thinner as it actually is a minute form of rat poison. They say there won't ever be side effects, but I think years of poison has to have some effects. It might be the cause of my memory problems that I am having now at age 46.
You really have to be careful how you eat and around any serious infections you get. Both can make your blood to thin. A kidney infection sent my protine to 12 and I could have died because my blood was too thin. I had to be hospitalized and put on vitamin k shots. Be careful and read everything you can on it. A warning to all parents out there also. At 16 I took one birth control pill and it almost killed me. My parents didn't believe me about my leg swelling. That is how I found out about my clotting problem.
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replied August 23rd, 2005
Thanks For the Reply!
Thanks for your reply. How much time between each of your episode? Does your legs still hurt where you had the clots, even though they are gone?


I have been told that I have to stay on them for the rest of my life as well. I have noticed a pattern with my clotting issue. I had my first clot in sept. 2003 and then my second bought last year - august of 2004. Summer/summer.... I have been having lupus activity since this past spring and all of a sudden my pt/inr tested at 1.6. So my doctor told me to double my dosage of thinner because they were keeping my levels at 3 instead of the normal 2. I had been on thinner for almost one full year after my first issue with clots, when the old and new ones were discovered again (without my leg swelling this time). So they figured that keeping it at 2 was not working with me and moved it up to 3. .... Anyhow my doctor told me to double my dosage. I was supposed to see him back in three weeks for a follow-up but after the second week, I went to the er. I had started to feel really light-headed and dizzy as if I was going to pass out and I have never done that before. It went on for a few days and so I decided to go to the er because of that and also both of my inner thighs hurting (fearing clots again). My left one was hurting exactly where my old clots were. They did an ultrasound and said that there were no clots at all. Of which I was relieved, but still bewildered as to why my legs were hurting. The technician that did the ultrasound, did tell me that I had some swollen lymph nodes.....Anyhow, to make a long story short - they tested my pt/inr level and it was 7.6. They told me to stop taking the coumadin because I could bleed to death if I experienced in trauma to the body and to follow-up with my doctor the next day. My doctor did not start me back on the thinner until after almost two weeks. I had my test done last week and now I am receiving a call saying that I need to increase my dosage again. This is crazy!!! I really don't see why they can't find out what is causing it.

I do try to watch all of the green things (vitamin k) I eat... As a matter of fact I have never really had a preference for green veggies.... I do agree with you that I do not want to remain on this stuff because I am sure it is toxic and killing us slowly in another way. I have purchased kevin troudeou's book and cd's "natural cures". He suggests vitamin e as a substitute for blood thinners. I am going to discuss this with my doctor and see if this is an option. I have also been studying other natural remedies and plan to seek out a naturopath for guidance. I have been shopping at earthfare grocery store to get all organic meats, dairy and veggies, to cut down on the amount of toxic chemicals i'm ingesting through eating meat and veggies with pesticides and that are fed growth hormones, antibiotics, and other toxic chemicals.


I have also been diagnosed with fibroids and I have varicose veins cropping up on my leggs as well as large bruise-like marks on my leg. I wonder if the blood thickness and irregularity doesn't have something to do with all of this? My doctor says it from the lupus. All of it has to be connected in some way. Sometimes I get aggravated and sad, because it seems as if my doctors are more focused in on getting the symptoms under control and not looking for root causes, other warning signs of other things and thinking about and discussing preventive treatments!
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replied August 29th, 2005
I do not nor have I ever had dvt although I am at some risk for it. When I was last pregnant my original rhuemy said I should be put onto lovenox (sp) as it was easier to monitor and adjust. I do not know if this will help but figured maybe it might since most people I have spoken with are put on cumodin (sp). I wish you luck and hope that a happy medium can be established. I am hoping to avoid blood thinners if at all possible, but with how thick my blood was last week am unsure if that will be possible much longer.
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replied September 1st, 2005
Dvt
I have had dvt's since I was 16 and I am now 45. I have had 3 bad ones and several smaller ones all in my left leg. That leg is always 1-2 inches
bigger than my right and swells an 1-2 above that nightly. The smaller
veins in the leg are permantly damaged (one clot will do that). That is were the constant ache and pain comes from and I will never be free from it. The doctor said only wearing the pressure hose will help the swelling, but wearing those are awful. I will probably pay for not wearing them later in life. I purchased his book and I tried the vitiman e's (don't bother, didn't help change my coumindan dose at all!). The fibroids I got too and I control them by no caffine at all. They went away after that. So
now I have to watch what I eat in that area also. Well got to run.....
Glad to hear from you about dvt's and know someone understands what we have to go through.
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replied September 7th, 2005
Reply to Your Post....blood Clots
April or may of 2003 I survived two pulmanary embolisms, I was hospitalized for 5 days after almost passing away and continued on lovonox injections, I have been on cummadin like you for two years and have had a re occurrence 4 weeks ago and was also given the greenfield filter in the chest like you. When I was reading your post it sounded like my life? Pretty weird? I had a follow up visit with my hemotologist and he tried to ruin my day.

He said brent, " one of three things is going to happen to you, 1 your legs are going to continue to clot up in which you will spend 5-6 days in the hospital to get under control for the rest of your life as my legs clot up they will swell up really bad.... I said and two? He said emough clots will find their way to your filter and plug up.... This means your heart will stop and I will die. Or the third option would be the lovonox injections for the rest of my life....But the problem with that is osteoporosis will begin to set in and your quality of life will be bad until I die... When will that be? He said I could be dead in 2 days or 50 years......

When I asked him what is causing this? He said so far the only thing that is showing up is a low factor 5 reading on the labs. I asked low? He replied yes low though it is still in the normal range. He said there is nothing I can do it is heretitary ...... I asked you mean I have had this my hole life? The gene,? Yes he said

i said thank you and bye. Needles to say I am not going back to him anymore. When a patient has nothing left but hope and desire I don't believe the doctor should try to take that away.

A brief history on me I am 6'1" and 270 lbs. I have been type two diabetic for over ten years I am 41 years old in a couple of days I also have high colesterol and now blot clotting disorders. I am taking about 10 pills a day to fight away these things.

My theory is this. If this gene was in me my whole life I would have been fighting these three deseases my whole life? I have been. I believe I am overweight by 70lbs. Minimum I believe I dont sleep right, and for these past 20 years I have not eaten or excercised right?

I bought the book from kevin tredeaux called the natural cures they don't want you to know about. I believe he is on the right track

from 2 weeks ago I have given up fast foods, packaged foods red meat by 90% I drink more purified waters, I am eating more fiber fruits and vegatables. I believe when I loose this weight I will no longer have to take the diabetic and cholesterol meds I also believe by flushing my body with organic fresh foods and getting the perscription and non perscription drugs out of my body I will also eliminate this clotting issue.

I am tired of hearing there is no cure for what we have. I will prove them wrong hopefully, sorry for all the gramar and spelling errors, I didn't have time to check it

brent
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replied September 14th, 2005
Hi Brent!
Hi brent,

sorry to hear that you have been fighting this same battle as I have. You made the right decision on changing doctors. I had to do it a few times and it was for the better. Doctors are human, they make mistakes, and they sometimes say and do the wrong things. They can become complacent with their patients and stop seeing them has human beings with feelings, emotions, hopes and dreams. I believe they become callus and numb so much that they may loose sight of how to be sympathetic to their patients. I do not know how spiritual you are but this is how I stay strong through the tuff times: I put my faith in god and not in man because man is not perfect and god is not a man so he has no reason to lie! We are all here for a reason and purpose, and the reason that both you and I are still here living and breathing is because we still have things to do! If those times before were "our times" we would not be here today, writing each other! Man can only tell you what he thinks (doctors) but he does not know any definite things....


As far as the clot issue is concerned, I was never really told why this is happening to me. Also, when I asked about the filter, I was told that it works 90%. I asked what would happen if a clot did break a loose and get caught in the filter. How would I know? I think I stumped the doctor by asking that. Of course, if there is a blockage of any kind when it comes to the blood getting to the heart, there's going to be trouble. I was told that since I am coumadin, that should not happen. But as you can see, the coumadin has proven to be false hope as it has been readjusted more than a few times (just a few weeks ago at the latest).

Like you, I bought kevin troudeau's cd's and book and I have been listening and reading. For the past month, I have started shopping at "earthfare" grocery store. The majority of their food and products are organic. I purchase all of my poultry and fruits and veggies from there. I have purchased a shower filter and began to drink spring water and use it to cook with. I have just purchased a few air purifiers also. I said all of this is definitely worth a try because I truly believe our bodies have the capacity to heal itself. We just have to take care of it. I hope to soon start a walking regimen (although I have a treadmill, my doctor says it's best to walk outdoors).

I am 31years old, 5'5 and I weigh 198 pounds (although most people say that I do not look like a weigh that much, I am very solid to the touch). I used to be extremely active and I believe that that is a major part of my problem. I need to make the time to exercise. I'm just so busy because I still work full-time and with the job I have now I have to commute an hour each way (which my doctor has said is not good for me with my clotting condition). A list of my health issues: lupus, lupus nephritis, pancreatitis (prescription drug-induced), fibroid tumors, blood clotting.... My symptoms: chronic fatigue, brain fog, joint and back pain and swelling, inability to concentrate sometimes, night sweats, excessive hair shedding, acne and acne scaring, the list goes on and on.


Brent, we need to keep each other encouraged! I am going to try vitamin e. It's said that it is a natural blood thinner. I was taking it one time but just stopped after I ran out and did not buy more. I believe like kevin said, we need to make sure that the supplements that we take do not have harmful chemicals in them and are also easy to dissolve in our systems. Andrew lessman's vitamins (Hsn) or do a general web search for his company's website)) are pure, high quality and finely grained. His capsules are easily dissolved caps made out of gelatin. I would trust his vitamin e supplements and I plan to purchase some. I will start taking them and then increase the dosage until I get the results that I need. I plan to see if there is a change in my pt/inr test results after I start taking the vitamin e..... I also have just started a natural colon cleanse and plan to follow-up with a liver and kidney detox/cleanse, to a candida cleanse, and then move on to a parasite cleanse. Go to Herbalhealer and request a free catalog be mailed to you (look half way down the page on the left hand side for the "free catalog" button). The catalog is 120 pages long and is chalk full of interesting facts about different natural herbs and how they can be beneficial to our ailments.


Keep in touch and let me know how it goes as you go through your voyage of following kevin's advise.
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replied October 7th, 2005
Hi hollydc

greetings from the island of barbados. I have been diagnose with lupus over a year ago and one of my more serious cases thus far has indeed been a blood clot to the lungs. I was hospitalize for three days, unfortunately the doctors treated me for something else (i was lucky to make it out of the hospital alive) I only found out I clotted after my private doctor insisted I take a test. That was one year ago. I am still on blood thinner, warphrin, my doc has indicated it may be for life. So far I have had no serious side effects (that I know of) but I have to watch what I eat very carefully. I am also new to this site and I would be pleased to hear from you.
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replied October 12th, 2005
Sorry It Took So Long For Me to Respond Again,
The latest, my coumadin levels have been adjusted again and am currently taking 15mg. To maintain a 29.5 with a 3.2 lab. The latest problem has been rectal bleeding for 6 weeks now. Staying positive I believe the coumadin along with a pollup or hemroid bursting has caused this symptom. I really don't want to think about the other possibillities yet. I have scheduled an appointment with my gastrointerologists for the 18th of this month. I had a cholonoscopy done 1.5 years ago and aside from removing a few non cancerous polleps he mentioned everything was okay. For some reason my family doctor wants to see me on the 20th. First time my doctors have called me. This has me alittle concerned... Oh well.

I am getting ready to build a new house. This project should keep me busy and my mind off of my fears I hope? I have been talking to god alot lately myself, but sometimes wonder if he really hears me? Maybe some day my answers will come.

I hope everything with you starts to get better

brent
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replied April 9th, 2008
me
i have lupus and i have DVT's i am 16 yars old and the frist thing that happend is three years ago i went into the docter and i could not brith so they sent me to get a oltersound and my abdumed and my lugs were full of clots so they sent me to the ER and they did some X-rays of my cest and looked at my legs my intirer body was full of clots i had a few sergers and i had to be air lefted to childers hospitl becuase there was no docter here that could take care of me and in then the past few mounts i have been dignost with lupus and i am so up set becuase i dont want to have blood cots and lupus so i am upset and need supotnt from other people who have this
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replied July 1st, 2008
Me-
Hi,

I am new here I wanted to know the following I am constantly crying because I am having to many issues aside from my Clot in the lung and my leg (left leg) I have anemia and its said to be causing this I am taking a special diet and all, but at times I feel like I have someone stabbing my chest like pins and needles more often when I cry. The Doctor told me if I continue like this it will cause it to travel perhaps more further to choke an important part in the lung and caused my death. I am not sure if he is just telling me to take anti-depressant because I have become very sad and its just no reason to be happy or anything I mean how will I have a family or even find someone who loves me? So.. I also heard that anti-depressants can cause more clots is anyone else going thou something like this I feel so bad at times and I do not want to get like into an place they would want to keep me there from avoiding more harm...
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replied January 14th, 2012
Honey find a new doctor pronto. At the very least a doctor should offer you compassion and support. This guys sounds terrible in both departments.
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replied February 4th, 2009
Wow I am not alone!
I was a police officer for 15 years when I was forced to retire at the age of 33!

I was on coumindan treatment for a few year then I got more DVT and PE. Then A greenfield filter was put in place and my coumindan was increased to 40mg daily.

I later devolped a so called leg ulcer. My leg would swell so bad that it would even tare my uniform pants. The swelling was so bad that it would run on my boots that were worn.

Then I had got Pneumonia and the coughing caused more clots in the lungs. The Doctors thought that the filter failed. It was still in place but the were unwilling to accept my idea from coughing so much and so hard that help to devlope the clotts in my lungs. I was later placed on lovenox.

Lovenox treatment was painfull it would burn going in and would leave my belly so brused. After I took my shots I would lay there about to cry and whish I would dye it hurt that bad.

I have gone to Johns Hopkins Hospital which I was not inpressed by at all. Their solution to cure the leg ulser and DVT was to strip the veins out. Well I was not have any of that. I have been to the Cleveland Clinic they have helped get my leg ulcer under control. I was also tested yet again and I dont have anything wrong with the blood. Nothing wrong with factor IV or "K" nothing wrong.

Here in Dec 08 once again I got Pneumonia and devloped clotts in the lungs. This time so bad my pulse OX was at 55%. long story short I was given something made from Vampire bats to break them up. I was the 4th person to ever be given this at Level 1 Trama center here in Ohio or so I m told.

Now I am on New thinner meds. "ARIXTRA" I like this better then the Lovenox and coumindan. So I say to those of you on the other to look into ARIXTRA.

Those of you that are like me that suffer from DVT. that have not broken up and is having an impack your legs. Before you think about striping the viens. Dr. Rorert Lookstein of Mt. Siani, NY. Is doing something of what I would call steam cleaning. This will break the clot free and suck it up! just food for thought!

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replied February 21st, 2009
Thanks sirlumpy
I recently finished doing the lovenox shots those things are horrible. I am now taking the coumindan. My clots formed after having arthroscopic on my left knee due to an on the job injury. I am also a police officer and my department does not have light duty positions. So I just wanted to say that you are definately not alone and I am for lack of a better word happy to see others in my boat.
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replied November 9th, 2009
Thigh pain...HELP!!!
I have SLE. I am having VERY painfull and sharp pain in my left thigh. It only lasts for about 20-30 seconds then goes away just as fast as it starts.It puts me to the floor when it happens and is excruciating pain! It has been going on for a few months. Could these be signs of a clot??
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replied January 15th, 2011
My daughter has had Lupus since she was 18 yrs old and is now 31 for the past 9 yrs she has suffered from dvt's right after her c-section. Her most recent is happening as I write. For the past three week in and out of hospital because first to thick, then so thin she almost bleed to death and now is anemic and still in extreme pain in her legs. She has the filter, which has been very benefical to her, has had a stroke and two PE's. It's been a very painful journey for her. When will they get it right? Other then blood thinners and pain killers, is there any natural remedies that may help as conventional medicine doesn't seem to. After nine yrs and it gets worst for her.

A very worried mom.
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replied January 15th, 2011
My daughter has had Lupus since she was 18 yrs old and is now 31 for the past 9 yrs she has suffered from dvt's right after her c-section. Her most recent is happening as I write. For the past three week in and out of hospital because first to thick, then so thin she almost bleed to death and now is anemic and still in extreme pain in her legs. She has the filter, which has been very benefical to her, has had a stroke and two PE's. It's been a very painful journey for her. When will they get it right? Other then blood thinners and pain killers, is there any natural remedies that may help as conventional medicine doesn't seem to. After nine yrs and it gets worst for her.

A very worried mom.
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replied January 14th, 2012
Dear Mom
I hear you. I have had sle lupus for over 20 years and back in 2008 I had what the doctors thought was bronchitis from Feb to Late April. When I started coughing up blood they sent me to the hospital to have my lungs checked and I had bilateral clots in every airway in my lung the doctors said they stopped counting after 20. The lower part of my left lung has scarring and I have been on coumadin since. I have noticed my INR drops from 2 to 1 every time I have a flare up, coincidence? Maybe but I dont think so. your daughter might be having whats called mini flares and its effecting her blot clotting factor. There are some natural ways to thin the blood like safflower oil, fish oil, vitamin E. Check with a dotor of homopathy. Also being very consistant with your diet helps. If you eat salads or veggies eat them everyday eventually they wont effect your inr. I hope all this helps. God Bless
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