Quad Cousin Just Developed a Blood Clot

[dzskatgillespie]

She noticed her leg was extremely swollen, red, hard and hot. She went to the emergency room earlier this week and they found a blood clot in her groin. From what she has told me it sounds like they are working to control it, but I can't get a read on her and whether or not her doctors have told her to do the right thing. From what I gather she is on anti-coagulant shots and pills. But they sent her home and told her to go to work the next day, and that inactivity would be much worse. Also they took her off the Ortho-Evra patch, which I was concerned about because of the high estrogen dose.

Does this sound like they are doing the right things for her? Is having a blood clot for a quadriplegic more complicated than for a person who can walk? If so, what can she be doing differently?

[2jazzyjeff]

i'm a quad too and i had a blood clot in my arm while i was in-patient... they put me on Kumaden, blood thinners.....

after being out of the hospital only 2 weeks, i found out i had a blood clot in my right lung and was rushed to the hospital for 9 days....

after this, i had the docs tell me to get a Greenfield filter put in my groin area, so i did.... just google it for lots of info.....

i now exercise my legs alot too for increased circulation.... good luck..

[dzskatgillespie]

Thanks 2jazzyjeff. I've looked up that Greenfield filter and I'm going to mention it to her.

Also, I didn't realize that a person could survive a blood clot in a lung. That is good to hear. I am trying not to freak out about this. She lives very far from me, so I just have to rely on what she tells me.

[SCI-Nurse]

A couple of points: the doctors are using the standard (and best available) approach to managing the blood clot. The reason they stopped the estrogen is that one of the side effects of estrogen is blood clots in the legs. It's probably not a good idea for your cousing to continue using hormones because of this problem.

2. A Greenfield filter is not such a nifty idea for quads. It means that you cannot do quad coughs and that is really not good for lungs. The filters usually become clogged and are rendered useless after a while (veins grow around them bypassing the filter and maiking it further useless. Finally, with a filter in a person must be on coumadin for life which is a major drag both for the person and for the health care provider. So don't necessarily jump to that as a perfect solution.

RAB

[dzskatgillespie]

Thanks for your insight, SCI Nurse.

[2jazzyjeff]

Luckily, my doctor noticed something peculiar in a chest x-ray and told me to go straight to the hospital... ended up being a very small clot, but still.. everytime i breathed in it felt like a bolt of lightning up my side....

RAB, can you provide a link to where quads should not get a filter? while in-patient in Shepherd, MOST patients get one, including para's... i can cough just fine too, and i've been off Coumadin for a while by my dr. at Shepherd. very interested in your source of info. thanks...

MEDICAL TREATMENT OF ACUTE DEEP VENOUS THROMBOSIS
Russell D. Hull, MBBs, MSc, and Graham F. Pineo, MD


Duration of Oral Anticoagulant Therapy in Patients After a First DVT Episode
Recommended treatment is warfarin for 3–6 months to reduce recurrence after a first DVT episode. In patients treated with intravenous heparin and then with warfarin for 3 months, continuation of warfarin for 2 years may more effectively reduce recurrence. However, after 2 years recurrence rates may be the same.
Duration of Oral Anticoagulant Therapy in Patients with Recurrent DVT
Extending the duration of oral anticoagulant indefinitely decreases recurrence compared with 6 months of therapy. However, this long-term therapy results in a higher incidence of major bleeding. Longer anticoagulant therapy is recommended for patients who are bedridden or immobilized or who have heart failure, cancer, antiphospholipid antibody syndrome, or factor V Leiden (clotting) defect or some other defects in clotting ability.
Adverse Effects of Oral Anticoagulants
Bleeding is a major side effect of oral anticoagulants, usually due to surgery, trauma, peptic ulcers, or cancer. Serious bleeding may occur if the warfarin dosage is too high. A lowered dosage of warfarin generally reduces risk of bleeding.

[Liz321]

I had a filter put in @ 3 years ago. I was on Coumadin for @ 6-8 months after and dr. stopped it. I was never told I would need to be on blood thinners for life?!?

My clot was 20 + years post due to birth control pills.

p.s. Hope your cousin is better.

[SCI-Nurse]

Usually put on Coumadin for life if filter not put in or clots in other places.

CWO