Thrombosis prophylaxis

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ardalon

Active member
Joined
Jan 5, 2014
Messages
61
Reason
PALS
Diagnosis
07/2013
Country
DE
State
Germany
City
Jossgrund
Hello,
My doctor suggested thrombosis prophylaxis because I'm lying in bed. Never heard that ALS patients need it. Does anyone have experience with it?
Ardalon
 
My husband was on warfarin before and during ALS, owing to a prosthetic heart valve. I am not sure that incidence of thrombosis in ALS would support its use (or one of the newer anticoagulants, which have their own issues) unless you have other risk factors, but I know of no research into this.

The major preventive apart from warfarin would be passive range of motion exercises and massage -- is someone doing those for you? Are you always in bed? A balanced diet so as to keep the ratio of vitamins that affect clotting in sync is also important.
 
Definitely passive exercises and massage are the first line of defence that are used. How long have you been paralysed, as this does have a bearing as do other health conditions.
 
I’ve wondered myself about DVT (deep vein thrombosis, or blood clot) prevention when I no longer have any voluntary movement left in my lower extremities. How many PALS with no other risk factors for clotting are advised by their physicians to go on blood thinners? I will plan on asking my neurologist this at my next clinic visit but would also be curious to know the experience here.

Immobility and being bed- bound are listed as risk factors for DVT and pulmonary embolism in general. We see it come up even in some people on long (generally transcontinental) flights. Massage and range of motion exercises are important, but I wonder if more is needed in ALS.
 
I take fish oil and krill oil. When I get cut it seems like I never stop bleeding. My Vitamin K level is normal. I think I'm going to stick with the oils and pray someone will massage my legs and do ROM.
 
Thanks to all.
I'm in bed since one year. I have physiotherapy twice a week and ergotherapy once a week.
 
I can think of 4 members here who had clots but know there are more. If I recall correctly my sister ( who was wheelchair and bed) was advised to take an aspirin. She had no underlying illnesses or risk factors besides the immobility of ALS
 
Once you are totally bed bound, the risk of DVT increases, and I couldn't remember how many here had experienced them, thanks Nikki!

Even if you are getting up with a hoist and into a chair and being toileted etc it makes a huge difference.

Ardalon can someone do some passive leg exercises on you daily, twice daily would be best? But taking medication may also be wise, I'm sure your doctor is looking at the complete picture.
 
Prevention and Treatment of Blood Clots
Your doctor may recommend that you take a blood thinner after you begin using a wheelchair full time because you are at high risk of developing blood clots, especially in your legs when walking is minimal. If a blood clot forms, the danger is that pieces of the clot will break off and sail through the bloodstream looking for places to get stuck and cause major damage. Clots in the lungs (pulmonary emboli) cause severe chest pain and breathing difficulty. Clots in the brain cause strokes. The recommendation may be for an Aspirin daily, or if you have had a clot, he will want you to take Coumadin (warfarin). Many people are reluctant to take any medications and the idea of any blood thinner, much less the one that is the lethal ingredient in rat poison, sounds pretty scary! But taking medication before you develop the almost inevitable blood clot beats the heck out of a week in the hospital or belly shots! Please read up on the subject. A place to start is http://www.alsfrombothsides.org/coumadin.htm
And be glad that you have a knowledgeable doctor. It is maddening to hear how many doctors will sign the paperwork for a power wheelchair and never consider thrombosis prevention.
 
Once my husband could no longer walk or stand we used these sequential compression boots for an hour twice a day. He loved them as they basically gave him a massage and helped with swelling. He also took an aspirin and plavix daily for his heart condition which caused a few bleeding episodes, one requiring hospitalization.
 

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Oh yes, thanks Kate I had forgotten about these boots - they used one on my daughter after her car accident and they are amazing.
 
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