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 can anybody out there relate?

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Posts : 6
Join date : 2011-08-22

PostSubject: can anybody out there relate?   Mon Aug 22, 2011 4:18 pm

I recently had a knee replaced, and as a complication I developed a clot. I also had a Greenfield IVC filter placed later. I had only been taking Warfarin and Lovenox for 5 days when the visiting nurse got an INR or 4+. I had started bleeding into my abdominal cavity. I went to three diferent emergency rooms to get help, and everyone patted me on the head like I was a crazy hypochondriac and sent me home. The fourth day I told my husband I had to try to get someone to believe me and risk the humilation of being sent home again or I was going to die that night. FINALLY, on the second try to the second hospital that rejected me before, there was someone on duty who knew what to do. He sent me to another hospital for emergency treatment and that is where they forced me to have the filter placed. I was given 6 units of plasma and 2 whole blood and they had a terrible time getting a vein. I spent 3 weeks in hospital, and then 8 days in a rehab.
I am doing OK now except I have recently learned there is another relation condition "Post Thombolitic Syndrome" that I have been dealing with on my own. I showed my purple swollen leg and blue toes and scar turning black due to lack of o2. Nobody cared and treated me like a nut. I did some recearch and found out what I had because I have every single symptom. I realize after doind my own research that probably the reason they didn't care is that it seems nothing can be done about it, and the only thing to do is to keep wearing the anti-embolism stockings. They help with the swelling, as long as I keep my legs up. I can't stand for more than a few minutes, and spend most of my time sitting or laying with that leg elevated. I also have excercises I have to do for the new knee. I am only 57, but I feel like I am over the hill and on the slippery slope downhill to the grave. If my doctor had only warned me that knee and hip replacement operations have the HIGHEST risk of blood clots , I would not have had the surgery. It seemed my whole life went downhill after the knee operation, even though I did everything I was supposed to do before the operation. I was in great health.
My origional clot was in my leg but broke off and moved to my femoral iliac vein where it stuck. I have so much pain in that leg. Long story IVC is ferromagnetic, so I wonder if any more MRI tests are not to be done on me. I don't want this darned filter to move one bit. It's in for life. I am not on blood thinners since the bleed. I researched after wards and found out Warfarin is the same red clover ingredient the use in rat killers. The bait is laced with it and the rat hemmorages from it's own blood vessels until he dies. Nice product - not. I will never let them give me the blood thinners again. I would rather die.
Speaking of death, the hospital also gave me the MRSA virus at the IV insertion site and I was on triple powerful antibiotics for 2 weeks. I was left with a huge hole in my arm that tooks 4 months of wound treatment to heal, and the rest of my arm looks like a battlefield.
While I was in hospital, a cat scan also showed a growth on my ovary. Further checking revealed it is growing, so now I have that to deal with. Throughout all this, my favorite older brother was diagnosed with metasticised pancreatic cancer. From diagnosis until his death he only had 6 weeks. We were so close. Out of 6 lids, he and I were the only ones that kept in touch. I feel like half of him died with me. I also found out that another younger brother had died in 2001 from kidney cancer. He got near to the end at home, and shot himself rather than go to a hospice. I never even knew. Sad
My husband and daughter are not really supportive of me. They both withdraw when bad things happen, so no one talks to me about it. After my brother died I was and still am terribly depressed. I cry all the time. I hide it from them. I feel like giving up, and I have made a start on it. The Oncologist wants to remove ovaries, uterus, everything. But I am over weight, and the trouble with the clots means he wants me back on blood thinners. It's a high risk operation for me. Very high risk. I cancelled all my tests and appointments. I cannot deal with anything right now, I am that low. It seems nothing really matters at all, especially me. I am not the sort that used to give up. I've always been a fighter. But it just seems like life has been kicking me while I'm down, and I am so tired. So tired of trying to fight it.
I came across this site, and figured, here are people like me that can relate. Because no one in my family really seems to care, even the doctor acts like it's all "just business" for him. I don't need sympathy (hate it) .I just want to share with someone who will listen and can relate to how life sucks for me right now. With this PTS it seems to be getting worse instead of better. My leg hurts so bad I wish the doctor could just cut it off. I would rather have one good leg to hop on instead of this very bad leg that seems like it's trying to kill me. Does that sound crazy?
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Posts : 4
Join date : 2011-08-13

PostSubject: Re: can anybody out there relate?   Wed Aug 24, 2011 11:41 am

Your having a real rough trot there. I along with many others have a long term clot, and as you say its painful and the only thing they do is tell you to wear stockings then throw you out in the cold. I have been going to a vascular surgeon here in Oz. He has assured me there is no other options. Though when i look-up the "Trellis" clot remover at stanford hospital in canada(i think) they seem to suggest its a system that will remove an old clot and restore the leg. Theres clips on youtube about it.
Dont be alarmed that they use Warfarin in Rat poison. They use it for that reason, it thins the blood way to much in them and they die, as you said. You truley dont sound like you are getting the care you need, DVT is life changing(and not for the better). If the clot is less then a few weeks old you can get back on the thinners and stockings and dissolve it, but if its old already(like mine) thats kinda it(so im told).....
See a proper doc, and get ur INR back to 2.5, ur thinner blood will help the swelling a little. If ur leg is that bad, you can get Gangreen and they will amputate if thats the case.
If the clot is still new("acute" i think they call it) you can also have an AngioJet clear it out.
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Posts : 904
Join date : 2007-12-09
Age : 59
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: can anybody out there relate?   Thu Aug 25, 2011 7:27 pm

Hi Jane-Ellen,

Can I relate to it? Yes, totally.My first clot was devastating to me, I was a mess and then I had to deal with many side effects from warfarin, it made me into a monster. BUT, I talked with my Hemotologist, asked her if there was other alternatives to warfarin. This was in 2007, so there were not all of these oral anticoagulants on the market. BUT I could get enrolled in this study that the patients were either taking warfarin or this new drug called Dabigatran, at that time the study was in it's in third phase so it was not like they did not know anything about it. So I took my chances and I knew I was doing Dabigatran, because ALL of the side effects I was having while being on warfarin were NOT present. (always tired, in a fog, forgetful, mood changes like crazy). So I stayed on the study until 2009 when my Hemo took me off anticoags. More studies had came up with results that now they looked at quality of life until you clotted AGAIN, not if, since I was idiopathic, it was a question of when I clotted again.
All to say that, there are alternatives to Warfarin, if you went to an hemotologist, not a vascular surgeon nor your GP and say, what else can I do. You are putting yourself in grave danger by stopping your anticoagulant therapy, you could clot again and this time it could go past where it stopped last time and go to your lungs.

Hear me out on this one, I know you are not crazy, even if others do think it, we are dealing with heavy times with this condition and then adding all the others condition you have, maybe it would be helpful to YOU, to seek professional help, to help you deal with the mental stress you are presently dealing with?

The other thing I wanted to say, explain to you that yes warfarin is used as a rat poison, BUT look at the size of these creatures compare to you and look at how much you ingest of it, MILLIGRAMS and the other thing that not too many people know is that rats can't throw up so the warfarin adds up in their stomach and yes they bleed to death after consuming GRAMS, again, look at the size difference.
If you were to ingest a dangerous portion of warfarin your body would reject it , yes throw up...
So I hope you reconsider your decision, at least talk to an Hemotologist.
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Posts : 150
Join date : 2008-06-24
Age : 51
Location : Vancouver, BC, Canada

PostSubject: Re: can anybody out there relate?   Fri Aug 26, 2011 6:51 pm

Hi Jan-Ellen,

So sorry to hear about your situation.

I too had DVT, as well as Pulmonary Embolism in 2008, and subsequently had complications with endometriosis as a result, which is terribly painful. I also have post-thrombotic syndrome, but have been able to keep it in check with exercise...more on that below...

I agree that it can be emotionally devastating. I think most of us "survivors" have experienced the emotional roller coaster. (For myself, my husband was out of the country at the time, and I went through it all alone. The hospital, the outpatient treatments, etc.) On top of the obvious physical challenges, however, while I know we can't always control what happens to us, we CAN control how we deal with our deal and how we respond to life.

While I don't want to come off as Pollyanna, personally I choose to take a proactive approach: to find optimism and positivity to help get me through, stay in shape, walk every day (circulation is so important and it really helps with my PTS), try to eat right, and be part of the solution. In fact I joined the North American Thrombosis Forum, as a patient advocate, and started the DVT Support Group of the Lower Mainland to help others and spread positive education. I took anticoagulants as told, and actually CHOSE to stay on Warfarin for my year of treatment. I kept track of my INR, diet, how I felt, etc. I wore my compression socks and still do as needed. After my treatment, when I needed surgery, I went to the anticoagulation clinic and prepared for therapeutic treatment (i.e. Heparin and Fragmin). When I travel I plan for therapeutic treatment (socks, injections, etc.). I personally DO NOT want to die so I do whatever I need to do to prevent that prematurely. That's just me...

I agree with dero and curmitt. You need proper care, of which you'll have to instigate. In my opinion, we MUST be in charge of our own medical and mental health. My suggestions? Get a referral to a good hematologist, or go to an anti-coagulation clinic if you can find one. Try not to scare yourself with negatives, but rather stay educated with ACCURATE information. Wear your compression stockings, take anticoagulants properly and get your INR in order. Continue to chat with those of us who can understand. Seek additional local support by searching for various support groups, i.e. DVT, chronic pain, walking groups, emotional support groups, etc.

You're not crazy and while your family and friends may not be able to understand, we DO...all too well.

Feel free to message me anytime. You can also find me on Twitter @DVTSupportGroup or on Meetup at: You can read about my story here: and see a recent newspaper article here:

Hope this helps. Hang in there and we're here for you,
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Posts : 3
Join date : 2011-07-30
Location : London UK

PostSubject: Re: can anybody out there relate?   Sun Aug 28, 2011 8:02 am

I've just been diagnosed with PE from DVT, funny story (not) went into hospital with pnumonia came out with PE after various test (CT Scan). Finding it hard to come to terms with it, don't know what to expect, on warfrain for 6months and pretty much as scared as can be, glad to hear the story from Joey and LLR1917's advice, seems I am not alone, I hope you both get things sorted, Thank you
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Posts : 3
Join date : 2011-07-30
Location : London UK

PostSubject: shock   Sun Aug 28, 2011 8:04 am

I've just been diagnosed with PE from DVT, funny story (not) went into hospital with pnumonia came out with PE after various test (CT Scan). Finding it hard to come to terms with it, don't know what to expect, on warfrain for 6months and pretty much as scared as can be, interested to hear the story from you guys, seems I am not alone, I hope you get things sorted, Thank you
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