Two foot long two cm wide clot!

[Allisonquast]

Hello all. Hubby was admitted today after he collapsed at home. As you know he has been having trouble breathing for a while. He underwent emergency open bypass heart surgery to remove the clot tonight. Without the surgery the clot would have killed him. The docs said he couldn't take clot busting drugs due to the Wegs. It had been there for months. He has a long road to recovery. He will be kept sedated on a breathing tube for a few days.

We we had no idea until today that clots were related to the Wegs.

Any my other stories out there ?

[gilders]

Happy to hear the surgery sounds like it was a success.
I've had blood clots (deep vein thrombosis) twice. I was not told it was WG related. I was pretty much immobile for 6 months in hospital which led to the first blood clots. There was too many to count as they were the full length of my leg and were all joined together. I still think it was the immobility rather than WG that caused them.
The second time, I'm not sure as I wasn't immobile.
I currently have a similar pain and tightness in the same calf and l'm also having a WG relapse/flare. Perhaps there is some connection between WG and clots??

[Allisonquast]

Hi gilders. Did they give you clot busting meds?

[gilders]

Yes. Started off with heparin on a VERY slow moving IV pump. Then warfarin tablets. This was while my Wegener's was aggressively active.

[renidrag]

Sorry to hear about the surgery, I'm sure it will turn out well. I had DVT in 2010 and it ended up in my right lung from my left leg. I was active at the time and found out WG patients are 23% more suscceptible to clots than the average person. I was put on and remain on Warfarin and also had a filter installed in my Vena Cave. Hence I shall be on thinners for life. Beats the alternative.
Dale

[Debbie C]

Allison,I am so sorry to hear about your hubby having to have surgery. Thank God they got it in time. I never knew clots could get that big, I'm surprised he wasn't having terrible chest pains with that. I also didn't know that wg causes clots either.
Happy to hear the surgery went well and yes he will have a long road of recovery but the worst is over.
Keep us posted

[Allisonquast]

He was having pain but he thought it was heartburn. He has been having so many troubles breathing but again they just thought it was the Wegs or pred withdrawl. He was so lucky he had a strong heart when all this started. Yes the surgeon said it was a remarkably huge clot.

[pberggren1]

Thank God he is alright. I also took heparin when I had some veins in my right arm stiffen up due to many pokes.

[JeanMarie]

So glad the surgery was successful! I had a dvt followed by a pulmonary embolism & now on warfarin for life. Clots are related to wegs.

[Captian Al]

How scary!! My hubs, Darren, also developed a DVT after his 1st hospital stay in July. He was back home for 2 days after his "pneumonia". He developed bad leg pain. We went to his PCP's office and then directly back to the hospital for an ultrasound from there. He was re-admitted. That was a bad and pivotal day. He spent 2 more weeks in the hospital. That's when it was determined it was WG. We were later advised by doctors at the U of Chicago that the clots are related to WG.