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.

[Captian Al]

...Oh, and he's been in warfarin since then. He will probably be on it for another 3 to 6 months???

[annekat]

Allison, I'm sorry to hear about all this. I have always read on here and elsewhere that Wegs can cause clots. I had no idea they could be that size and shape. How scary for you and him to have to go through the heart surgery. It sounds like he will be OK. Thank goodness for that!

[windchime]

Allison sorry you and Darren have to go through this, but at least you have an answer and he can begin the recovery process. Good luck to you both and I'm glad the surgery was a success.

[mmthomm]

I was just diagnosed with WG in November when the mass in my nasopharyx grew very quickly and nastily in my brain which led to two clots - one in the sagittal sinus and one in the jugular vein. I was having hearing loss from the WG but horrible headaches from the clots so after the CT scan of my head showing the blood clots they put me on high dose heparin right away and then Lovenox shots until my Warfarin levels became therapeutic - all this is to say that they put me on high power clot busting meds even though my WG was really active at the time. It's so comforting to have a neurosurgeon tell you that you're "just lucky you didn't drop dead from the clots in your head before we really figured out what was wrong with you!" (At the time based on the brain imaging before the biopsy they just thought I had horrendously aggressive brain cancer with mets to my lungs so I was very happy to be diagnosed with WG instead). I might be the only person out there who breathed a giant sigh of relief and said "is that all" when they told me it was Wegener's. :-)
Maureen

[Alysia]

Hi Allison,
I am so sorry for you and for your husband but thanks God he was saved just in time.
I hope that he will recover soon. you must be so overwhelmed by all this. I am sending you lots of hugs. continue to write. we are all with you all the way.

[Debbie C]

This is just amazing to me ..all the people getting blood clots from this:wtf:

[mishb]

It is also a good time to let all the females know that a diagnosis of WG carries an increased risk of blood clots and also that if you take an oral contraceptive pill, the risk of blood clots increases yet again.
Unfortunately, the good news never ends :predrage:

I was advised that it was imperative to seek alternative methods.

[gilders]

Allison. Just to confirm, clot busting drugs are given to patients with active WG in the UK at least. I'm sat on my hospital bed and the nurse has just jabbed me. Not sure of the name of the drug, but it didn't sound like heparin or warfarin which I've had before.

[Jaha]

That is a very large clot, glad things the surgery went well. My thoughts and prayers are with you and family.

[Allisonquast]

Wow. Thanks for that information captian al. They are still investigating but a gear Wegs doctor is involved so although it's not great I would be happy if it was Wegs related and not another condition.

[Allisonquast]

Allison. Just to confirm, clot busting drugs are given to patients with active WG in the UK at least. I'm sat on my hospital bed and the nurse has just jabbed me. Not sure of the name of the drug, but it didn't sound like heparin or warfarin which I've had before.
We found out that he just didn't have the time for the drugs to work. He was really just hours from death.

[pberggren1]

Yes, those types of clots can be deadly in hours.

[annekat]

Wow. What a relief that they knew what was going on and were able to alleviate the situation in time.

[Allisonquast]

He's still in hospital with low hemoglobin, low white cells and low platelets. Recoverd swimmingly from having his chest cut open, his heart stopped and started but now this.

The he low counts They think are cyclophosphamide related. But really who knows! Wegs is the mystery of all mysteries!

[Lilly]

I am so sorry your husband (and u) are going through this! Wow, I am just kind of freaking out because I had no idea wegeners could cause blood clots! When I had my total knee replaced in 2010, they were making me work hard in physical therapy to make sure no blood clots formed during recovery, but I assume that is for all pts with knee replacements. I am shocked at the size of his, and do thankful they found it and were able to get it out. I will b thinking of u both and pray for his quick recovery. I don't even know how to tell if I had a blood clot, or what they feel like, or what I should look out for. This disease is like a roller coaster. :(

[mishb]

Hi Lilly,
The following may help in regards to blood clots - and with your knee replacement, even if you didn't have wegs, you still would have to work hard in physio because blood clots can form after operations and you are confined to bed etc

You may have a blood clot if you see or feel:


New swelling in your arm or leg.
Skin redness.
Soreness or pain in your arm or leg.
A warm spot on your leg.


Blood clots can be dangerous. Blood clots that form in the veins in your legs, arms, and groin can break loose and move to other parts of your body, including your lungs. A blood clot in your lungs is called a pulmonary embolism (POOL-mo-nar-e EM-bo-liz-em). If this happens, your life can be in danger. Go to the emergency room or call 911.
A blood clot may have gone to your lungs if you suddenly have:


A hard time breathing.
Chest pain.
A fast heartbeat.
Fainting spells.
A mild fever.
A cough, with or without blood.

You can help prevent blood clots if you:


Wear loose-fitting clothes, socks, or stockings.
Raise your legs 6 inches above your heart from time to time.
Wear special stockings (called compression stockings) if your doctor prescribes them.
Do exercises your doctor gives you.
Change your position often, especially during a long trip.
Do not stand or sit for more than 1 hour at a time.
Eat less salt.
Try not to bump or hurt your legs and try not to cross them.
Do not use pillows under your knees.
Raise the bottom of your bed 4 to 6 inches with blocks or books.
Take all medicines the doctor prescribes you.



I haven't had one but I would think that you would know, if you did have one

[Allisonquast]

This clot had been building for months. They called it "an organized pulmonary embolism" how nice that it organized itself. He had been complaining of being breathless for months to his docs. They attributed it to the meds or the disease, his lungs were affected at diagnosis. I don't think the docs could have saw this coming. Maybe they can learn from this and help other weggies!
All I know is that he has had some incredible brains managing his care including a very talented cardiac surgeon!

[Alysia]

Hi Lilly,
The following may help in regards to blood clots - and with your knee replacement, even if you didn't have wegs, you still would have to work hard in physio because blood clots can form after operations and you are confined to bed etc

You may have a blood clot if you see or feel:


New swelling in your arm or leg.
Skin redness.
Soreness or pain in your arm or leg.
A warm spot on your leg.


Blood clots can be dangerous. Blood clots that form in the veins in your legs, arms, and groin can break loose and move to other parts of your body, including your lungs. A blood clot in your lungs is called a pulmonary embolism (POOL-mo-nar-e EM-bo-liz-em). If this happens, your life can be in danger. Go to the emergency room or call 911.
A blood clot may have gone to your lungs if you suddenly have:


A hard time breathing.
Chest pain.
A fast heartbeat.
Fainting spells.
A mild fever.
A cough, with or without blood.

You can help prevent blood clots if you:


Wear loose-fitting clothes, socks, or stockings.
Raise your legs 6 inches above your heart from time to time.
Wear special stockings (called compression stockings) if your doctor prescribes them.
Do exercises your doctor gives you.
Change your position often, especially during a long trip.
Do not stand or sit for more than 1 hour at a time.
Eat less salt.
Try not to bump or hurt your legs and try not to cross them.
Do not use pillows under your knees.
Raise the bottom of your bed 4 to 6 inches with blocks or books.
Take all medicines the doctor prescribes you.



I haven't had one but I would think that you would know, if you did have one

Michelle, this is a very valualble info. better write it on a sticky new thread. I hope we will not need it.

[annekat]

Yes, Michelle, those are great tips, and thank you. These are things I need to know and will bookmark this page. I keep thinking I'll never get clots since I haven't yet, but I know that is a foolish attitude. I don't have a doc who is going to say anything or give any warnings about blood clots, so thank goodness for you and this forum.

[annekat]

He's still in hospital with low hemoglobin, low white cells and low platelets. Recoverd swimmingly from having his chest cut open, his heart stopped and started but now this.

The he low counts They think are cyclophosphamide related. But really who knows! Wegs is the mystery of all mysteries!

Allison, I'm so sorry your husband is still having issues since the success of the heart surgery and getting rid of the clot. Someone may have said this, but I wonder if he is a candidate for RTX, since the CTX may be causing the low WBC and platelet counts. I don't know how any of that works, really, but suspect some people react to the drugs that way more than others. I just hope and pray that they are able to get this turned around soon.

[renidrag]

When I got my clot(s) I had a sharp piercing pain in the back of my leg, just above the knee. I knew something was wrong but I am the one who pushed for diagnosis, Doctor said he couldn't do any thing as I wasn't in pain at the time of my visit, the next day. He was my PCP for twenty years. Never went back. It was four months after diagnosis, he missed that too.
Dale

[Allisonquast]

It's so frustrating but they are only human! I think it's also why once you get wegeners you have to start being pushy with your docs!

[Allisonquast]

He's doing much better and that IS EXACTLY what they are sorting out now. What drugs are best. He has been on nothing but pred for his Wegs since Monday.

[Allisonquast]

He's doing much better and that IS EXACTLY what they are sorting out now. What drugs are best. He has been on nothing but pred for his Wegs since Monday.
Oops this was in response to annekats post about getting off the cyclo.

[annekat]

Oops this was in response to annekats post about getting off the cyclo. That's OK, Allison. And you can always go back and edit your posts, to clarify something you left out. I don't think CTX was a problem for me as far as WBC and platelet count, but everyone is different.

[Allisonquast]

Hello all! My husband is home from hospital and doing really well. He feels better than he has in months perhaps since diagnosis. I should clarify that the docs think the clots formed right in the lungs. They did not travel from the legs. They had been there for months and his poor right side of his heart was working overtime to get oxygen. The hematologist on the rheumatologists team was presenting to some students about the higher incidence for clotting with weggies last week.
He will be on blood thinners for a long while.
If you are having troubles breathing please ensure they investigate further! It almost cost him his life, my husband and our kids dad!

[pberggren1]

How does one know for sure if they have a clot in the lung? Would that show up on a CT?

[Debbie C]

Glad to hear he is home and doing good,what a scare for all of you.And us now knowing we are at a higher risk to get blod clots.:w00t: I had one before and I remember when I was I in the e.r. the dr. kept telling me not to cross my legs because that will make things worse. I wonder ,like Phil, why it didn't show up on a ct scan ? Hope your hubby continues to get better...keep us posted

[Allisonquast]

Yes it would!

[Allisonquast]

Thank you so much!

[Allisonquast]

Anne, he just switched to imuran. His counts went up before he left the hospital. He is very happy to be off the ctx. He is slowly improving. Thanks!

[Allisonquast]

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.
Hi again, were those clots in his lungs?

[John]

Hello all
I didn't know wg can be related to masses in the lungs. I've had a lung biopsy (18 samples). No cancer but a mass in my left lung. Dr. now wants to go in and see what it is as the biopsy didn't show what it was. After the second ct scan he said it had shrunk a little. I told him no operation until I find out it isn't shrinking anymore.
This disease is scaring the hell out of me after reading what others are going through. I have some of the same symptoms as many of you all do but I don't think it is as bad as some. My level of energy is very low and I have the feeling of worms wiggling in my body. Has anyone had this feeling? My dr's are great and I have faith in what they are doing with the medication and the consultations between them to help me. In the past 3 or 4 months I have developed a lot of floaters and blurred vision in my eyes. Some days sight is great other days blurred. I am a teacher and a farmer but now going to apply for disability from teaching, which the dr's agree on, but want to continue farming. But if I continue to feel this bad I may not be able to farm.
Hope the best for you all that has this disease. Only time will tell what our outcome will be. I know I am not ready to give up. God bless all of you and relieve you of the pain.
John

[renidrag]

John: Yes I do know what you are talking about with the "worms". I believe there is a certain amount of muscle loss as we usually are not as active as before, fatigue. I think this causes little spasms in the muscle felling like worms. I also have floaters and blurred vision from time to time, there does't seem to be much they can do but remember WG can also affect the eyes. The back of my left eye has hemorrhaged. WG presented itself to me in my lungs. The masses are usually called granulomas. All this being said I am in drug free remission now for three an a half years. So I am one of the lucky ones but each day brings its challenges because of what this disease gave me before it went to sleep. There is always hope.
Dale

[Debbie C]

John, I also had nodules in my lungs. They thought at first I had lung cancer,they tried to do 2 needle biopsies but could not get enough to sample. So I ended up with a partial right middle lobectomy. They gave me a choice to go in and get a sample or take the whole nodule out. Thinking it was cancer , I told them to take it all out. That's how I got dxed. I was started with ctx,pred and bactrim fro 6 months then taken off everything. The nodules keep coming and going. Right now I am on 5 mg. of pred. They say I am in remission but I do have 2 mm size nodules there that they are not worried about . If I had to do it again I would have waited to see if they got smaller but they put the fear of God into me when they said cancer and then again when they said WG. You should go to an optomologist about your eyes and make sure they are also familar with wg. Good luck and I hope the "worm" feeling goes away.

[annekat]

John, good to see you on here if you have to have WG. There is a New Member Introductions section, accessible from the main forum page, where you can start a new thread introducing yourself and telling us as much of your story as you'd like. Regarding SS Disability, I'm on it and can still make income at my pottery business as long as it isn't over a certain amount per month. So if you quit your teaching job and get on disability, you should still be able to get income from your farming, and I'll bet you will get to feeling enough better that you can do that. In my case, the disability payment isn't enough to live on, so I have no choice. You probably qualify for more based on your work history. If you are talking about another kind of disability than SS Disability, then I don't know how that works.

[drz]

John: Yes I do know what you are talking about with the "worms". I believe there is a certain amount of muscle loss as we usually are not as active as before, fatigue. I think this causes little spasms in the muscle felling like worms. I also have floaters and blurred vision from time to time, there does't seem to be much they can do but remember WG can also affect the eyes. The back of my left eye has hemorrhaged. WG presented itself to me in my lungs. The masses are usually called granulomas. All this being said I am in drug free remission now for three an a half years. So I am one of the lucky ones but each day brings its challenges because of what this disease gave me before it went to sleep. There is always hope.
Dale

I read recently read the average remission lasts two to three years so you are doing quite well. A few lucky ones go many years with no problems which is our hope for all of us.

[whatthewhat]

John, (and Debra,)
our daughter had the masses (granulomas) in her lungs. The Rtx eliminated all but one, and the one that was left the docs had predicted probably wouldn't go away since it was calcified. I hope this information helps. Wtw

[Captian Al]

Just saw this question... The clots were in his legs