Blood Clots and Weggies

**Sangye** · 05-09-2010, 12:32 AM

I think you did great. It just makes good sense that a vasculitis might predispose one to clots. Maybe TA does-- I dunno!

**jenjenn711** · 06-23-2010, 01:01 PM

Thanks so much for the info--I wish I'd known this sooner and I will be highly encouraging both my parents to join this group! My dad is the one with Wegener's. Last time I posted (a couple of weeks ago?) we were almost certain his Wegener's was coming back, and we were right. He got put back on his meds and a few days later got nauseous and dizzy and couldn't walk. We called 911. After a bunch of tests and a couple of days in the hospital, they confirmed it was a stroke and he had some other minor blood clots in his legs, too. He is now in rehab and should be coming home this weekend, but it makes me so angry that this all could've been prevented if only his doc had thought to put him on a blood thinner! He already had a history of clots, so it's not rocket science, and the doctors he is seeing now basically said as much. I am just baffled at how someone supposedly so highly educated can be so careless. He is now on Coumadin and a couple of other things, plus a special diet, for life. I am pretty concerned about how he's going to do with all these different drugs, though. His skin tears easily as it is and now it'll be harder for cuts and scrapes to heal, so we're terrified he might fall because of the stroke and lose a lot of blood from an injury :-(

**Sangye** · 06-23-2010, 01:08 PM

I'm so sorry to hear about your dad having a stroke and clots. Please read the first few posts in this thread about coumadin and diet. If they're telling him to limit his Vitamin K they're going about it the wrong way.

Falling is a major concern. He should continue to get PT for awhile to regain balance. You can ask his PT for advice on how to limit falls in the meantime.

I forget-- is he seeing a Wegs specialist?

**Jack** · 06-23-2010, 07:24 PM

I take Warfarin to prevent blood clots. It is protocol in this country that if you have more than one episode of clotting problems or are high risk, you remain on medication for life. I also have paper thin skin, but don't find that excessive bleeding is much of a problem, I just tend to have permanent bruises to my hands and often other parts too.

Please do all you can to protect against falling. I have just spent two months in hospital due to a fall and I'm struggling to regain my mobility.

**DEE** · 06-23-2010, 09:59 PM

Jack ive just got INR results back and levels have dropped therefore tablets gone up which i understand
could the fact my cough not getting any better have a conection just thought id ask cant get through to doc just now thanks DEEx

**jenjenn711** · 06-23-2010, 11:21 PM

I am all for my dad going to see a specialist, but he has never been the type to travel long distances for any reason and is nervous about big cities (he's a country boy). He is currently seeing a rheumy an hour away who is the same guy who did NOT keep him on Coumadin for life even after he suffered a painful blood clot in his leg a couple of years ago. My dad told me he treated a lot of people with Wegs, but if he didn't even know to keep my dad on a blood thinner, obviously not enough! Anyway, my parents are convinced my dad can't travel anywhere because if he sits too long with his legs hanging down he could get another clot. What guidelines do you follow for traveling with blood clots and active wegs? Do you think it would be worth it to travel up to 10 hours in the car? Would you do it now or wait a while? My parents also think he can't fly, and I'm not sure if this is them being way overcautious or if they're referring to valid concerns about not being able to move around, altitude, etc.

**elephant** · 06-23-2010, 11:23 PM

I know how you feel about traveling, I worried about getting blood clots too when I traveled 10 hours to cleveland clinic one way. You could just break it up and make sure he gets out to move around every 2 hour at least. That is what I did.

**Sangye** · 06-23-2010, 11:28 PM

Even though clots can still happen if you're on blood thinners, it's much less likely.

I'm sorry, but I can't tell you that anything short of seeing a Wegs doc is okay. I can't stand big cities either, but avoiding one is not worth my life. If that were my dad, I'd convince him to get in a car or plane and get proper help. It can take a few weeks to get into a major center, so start now.

Every member we've lost since I joined this group (Nov '08) has had one thing in common: No Wegs specialist.

**jenjenn711** · 06-23-2010, 11:50 PM

Thanks for the advice. I absolutely agree--if it had been my husband with the wegs we'd have been to a specialist ASAP. It's my stubborn dad though, so I have my work cut out for me!

I talked to my mom about the diet, and after some pressing she admitted that the dietician actually DID describe a non-extreme diet in which Coumadin is adjusted to accommodate balanced food intake. But what my mom heard was something along the lines of "spinach causes clots!" I gave her the info on here and I think she sees that was extreme.