DVT/PE & Blood Clotting Disorder Support & Information

Pulmonary Embolisms, Deep Vein Thrombosis, and Clotting Disorders - oh my!

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stellamirabelle wrote in thrombi_support
hi- I just found this community and I'm glad it exists. My partner has a Protein S deficiency and is on coumadin pretty much for the rest of his life. He had a pulmonary embolism in 2003 and is doing well now, but I still worry about him a lot. We have a son together, so I also worry about my son. He is only 16 months old right now, but I know that it is hereditary.

We are doing fine, but I am looking for any info on making the right lifestyle choices and I am really curious about alternatives to coumadin, because it makes my partner feel bad a lot of the time (headaches, tiredness etc.)

Anyone else here have a Protein S deficiency? I'd never heard of it before I met my partner.

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ah, someone else!
my mother was diagnosed last year with it, and I am supposed to be tested in the near future.

I don't know about alternatives...It probably depends on his level of deficiency (do you happen to know where his numbers are?)
There are a few perscription thinners, so have him talk to his Dr. about side effects, perhaps there is something else he can try.
But I would definitely NOT look to herbal remedies for this...Protein-S deficiency can be a life-or-death matter without proper medication, and Herbal and Homeopathic medicines are not yet even regulated by the FDA.
(I use herbs cosmetically and have studied herbology, and I cringe when I see some of the stuff that is sold in pharmacies--sometimes, the packaging promises results that have nothing AT ALL to do with the traditional uses of the ingredients.
Even more frigtheningly, many people are orally taking shady ingredients that are illegal in other countries! The capsules full of unprocessed herbs are particularly worrying to me. There are many good uses for herbal medicine, but I wish that either the FDA would get involved, or people would educate themselves before buying.)

Good overall advice, however, is for him to be careful about keeping well hydrated. Drink water, and be particularly aware of this in the heat!!

Also, if his dr. has not yet addressed these topics,
please ask about them:

~avoiding other medications that might thin the blood.
~avoiding travel by plane and scuba diving.
~avoiding certain foods, such as leafy green vegetables like spinach, that are high in Vitamin K.
~whether massage is dangerous for him.
~whether your husband should be elevating his legs at night, or wearing tension socks.

If his deficiency is mild, some of these may not be concerns for him, but it's always best to be safe and ask, right? :)

Goodluck, and please keep in touch!

Hi there,

Yes, the topics you mentioned are things we addressed, except for massage. I give him massages. I wonder about that!!!???

I normally am very in favor of herbal remedies, but I have resisted encouraging him to take herbs for this condition (and he is resistant to it anyway...) I realize that this is something not to be fooled around with. It scares me though, thinking of him taking coumadin for literally like 50 years. He's only 34.

After his pulmonary embolism, his family got tested and his dad tested positive for the Protein S deficiency. His cousin had a DVT too. It's very scary. I really hope my son doesn't have it!!

His dad, however, has never had a problem and he is almost 60.

Anyway... this is the first I've found anyone else who knows about this condition. It's nice to correspond.

Me too! Very few people know much about Protein S deficiency...it seems to be relatively rare.
My Mom inherited it from her father, and he is 70 and has never had a problem, either. Weird, isn't it? I wonder what the difference is?

And please, don't encourage your husband to go on any kind of oral herbal regimen, even in addition to his Coumadin, without first consulting his doctor. Do be careful!

Out of curiosity, what ethnicity is your husband?

He's white - mostly German and Russian

Is there an ethnicity that is more prone to it?

Caucasians tend to be more prone to clotting disorders in general. It doesn't seem to be known why, although there are theories. It doesn't mean that non-whites can't get clotting disorders, it's just extremely rare in them.

If it is done, I've heard that it should be done away from the heart. That way if any clots are dislodged, the flow is directed in the opposite direction, or it is unlikely they will be dislodged. Also, it should be warned that deep tissue massage is not recommended while someone has an active clot (new). Again, these are things I've heard about. I don't know about scientific proof.

A good list to join would be found at fvleiden.com, I think that's the site address.. *spacing it right now* but it's in the userinfo. They have a mailing list, and there are quite a few people who are Protein C or S deficient there as well. And I agree - do not encourage herbal use. There have been studies about something called Nattokinase, but it is not FDA approved, and it is better to take the "rat poison" even with it's side effects, then to risk a potentially deadly episode without it.

I looked at that site. What an unsual grouping of things on there... I didn't find a list specifically for Protein S or C deficiencies, but I did find a few websites dealing with the subject. It is hard to find info on the web.

Do you know the name of the specific list that I should be looking for? I saw discussion boards. Maybe it is in there.

No, no, sorry. You join the list for FVL. It supports ALL clotting disorders. There are people on -that- list who have Protein C & S deficiencies, and they speak up quite often. The fact is, a lot of people tend to have crossover mutations - cases where they have multiple clotting disorders, not just one. I've read of several people on that list who seemed to have almost all of them.

hahah! I love your icon...and must come to terms with what a severe *dork* I am in that, when I saw it, I immediately said aloud, "oh, yeah! Spot devolved into an iguana or some crap, but not her kittens!"

lol....wow. *puts on Dunce cap that reads "nerd" in large red letters*

Completely OT, but I don't care, because it's late

*snickersnort* Yeah, well, I'm just as bad, so don't feel bad. Actually, the reference was to the fact that in the first few episodes, Spot was a he, and a long haired brown cat with no real markings except seal-point. Then, he was a tabby, but still a he. Then, he was a she. And a tabby.

But yeah, the iguana part was cool. Spot saved the day. *is so obsessed with st:tng it's not even funny...* I'll go hide now.

real locals looking for hookups. Go Here dld.bz/chwZK

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