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Macculloch
05-21-2009, 08:42 AM
Hello, well I dont personally have this but my husband does, he joined the us navy Sep 29th of last yr and started feeling sick after they put him on medication because he got a positive tb test when he went into bootcamp. After bootcamp he was sent to pensacola FL for schooling and his feet started to swell, they started calling him shrek. He came home for christmas leave and we ended up taking him to the ER 4 times (he had blood shot eyes, swelled joints, couldnt hold anything in, chest pain, sinus infection, coughing blood) before they admitting him..my husband weighed about 200, he was down to 110 by the time they diagnosed him with WG. He was in the Hospital for over a month and then went BACK in because his leg was hurting and they re-admitted him due to blood clots in his lower leg and lungs. WG hasnt affected his kidneys, just his lungs, sinuses and joints. He is currently is San Diego in MED HOLD waiting for them to figure out what there gonna do with him.

I would love to get some more information, such as how hard is it going to be for my husband? I mean I know everyone is different but I would like some advice to what I CAN DO to support him, and what he is going through, and what we might be or could possible face? He is 26 yrs old a wonderful father of 3 boys and was very healthy up until bootcamp. :-(


*Has anyone tested positive to TB due to WG? Because all his other tests show he doesnt have it...but his Navel doctor is making him take the nasty medicine just in case he has TB too.

*my husband also has a weird smell coming from his nose or mouth, is this common? The doctor in Arizona put him on a fungal thing to get rid of the smell, but the Navel doctor took him off and the smell came back...is there anything he can do to not make it go away? (or is this not from the wg?)

Sangye
05-21-2009, 11:07 AM
Oh, man, I hate to hear a story like this. Young person, father, husband, sheesh. I'm so sorry. I grew up in an Air Force family, and unless military hospitals have changed drastically, I think you're gonna need to shout a little to get some non-military Wegs experts involved. Do you know about the VF docs?

People with Wegs are much more susceptible to blood clots. His docs may not know that. It's fairly recent research.

I have no idea about the TB thing. I haven't come across that. But given that both TB and Wegs cause lung changes--nodules in particular-- it's imperative that a Wegs expert chime in on his case. Was a biopsy done? Is there any other finding (besides the TB test) that demonstrates a TB infection?

They should do a culture and/or biopsy of the sinuses. They need a sample from WAY back in there. Several folks on here with sinus involvement (not me) have reported weird smells. It could be mold, fungus, sinus infection, or "just" sinus problems secondary to Wegs. Very important to find out.

You're doing the best thing you can for him--learning about the disease and treatment, finding support, asking for help beyond what the docs can give.

It truly is impossible to say how things might/will go for him. Some people were near death and on life-support but were back at work in 6 months. Others were not as damaged but have had more collateral fallout. And everything in between.

Wegs is completely unpredictable (that can be good and bad). So you get the best doctors possible, you keep the best attitude possible, you gather up your support network around you, and you take it day by day. :)

Jack
05-21-2009, 03:36 PM
Hi, sorry to hear your story, but I agree with everything Sangye says - the outcome is unpredictable, try to find a vasculitis specialist.

Not sure what causes the smell, it is very embarrasing on top of all the other problems. In my case, it went away after around a year. Many things Wegener's related do, but you get new problems to replace them.

Treatment for Wegener's is starting to become better established and most people seem to have their disease under control to a large extent. That does not mean that they don't have problems, but they are ones that they manage to cope with. In my own case, I raised two children and held down a good job for 20 years, although I did have a lot of time off through illness.

Derek
05-21-2009, 09:27 PM
Hi Macculloch.
Sorry to hear about your husband. I hardly have any sense of smell. It went years ago but some times I get an overpowering smell, the nearest thing I can match it to is burnt hair. Not sure why but put it down to the WG.

Derek

Macculloch
05-22-2009, 04:22 AM
[quote=Sangye;2754] Do you know about the VF docs?


I have no idea about the TB thing. I haven't come across that. But given that both TB and Wegs cause lung changes--nodules in particular-- it's imperative that a Wegs expert chime in on his case. Was a biopsy done? Is there any other finding (besides the TB test) that demonstrates a TB infection?
------------------------------
I dont know about VF docs? I would love to know though

And yes they did a biopsy, and no there wasnt anything else that showed that he had TB thats why I dont understand WHY they have him on the meds....Its hard when they dont give you the answers you NEED or WANT! I have 3 boys at home we need to know what precautions we need to take...due to the TB.....but I hate seeing my husband on the meds if he DOESNT need it. :-(

Jack
05-22-2009, 05:02 AM
After a short time dealing with the medical profession, we all find out that you have to be a bit proactive to get the answers you need. If you don't ask, they don't tell you!

Make a list of your questions and take it with you next time and if the answers don't make sense, keep asking. Don't be fobbed off just because they don't know.

Sangye
05-22-2009, 06:04 AM
Hi Bethany,
I like your picture. Very sweet. :)

TB treatment :
Have your docs mentioned the possibility of latent TB? (I don't know if it would show on a biopsy--that's a question for an Infectious Disease specialist.) Since your husband is now on immune-suppressing drugs, a latent infection could become active, life-threatening and contagious. It's very important to find this out. You don't want unnecessary treatment, but you also don't want to stop treatment that's in his (and your family's) best interest.

VF docs :
The VF (Vasculitis Foundation (http://www.vasculitisfoundation.org/)) has a list of docs from all over the country who specialize in Wegener's. They consult with your local docs for free regarding your case. (It isn't just general advice-- they really get into your specific case) They also follow up regularly and can be consulted again at any time. My doc (Philip Seo) is a VF doc located at Johns Hopkins in Baltimore. You contact the VF first and ask them how to begin the process.

If I were you, I'd contact the VF first and get all the facts before bringing it up with the military docs. I'm sure there are procedures for requesting a civilian specialist with something rare like Wegs. Don't count on them to offer it, or to recognize that it's necessary. You may have to do some sizable shouting for it. But your husband's life is at stake here, so go at it with appropriate force.

More nagging :
Having been to local docs, Mayo Clinic in Arizona, and now JHU, I can tell you that there's no comparison. I harp on this endlessly, because I've almost died at the hands of lousy doctors who wouldn't admit they didn't know, or excellent doctors who didn't know Wegs and didn't realize we require Wegs specialists. I've had countless "complications" because of this. And because none of my docs got me into physical therapy, I've been in terrible physical condition-- unable to work for 3 yrs, exercise at all, etc.... They couldn't sort out what was Wegs and what was collateral damage.

Do whatever it takes to get your husband to the very best care. You do not have the time to waste.

coffeelover
05-22-2009, 06:16 AM
Hello and welcome,

I have had issues with fungus and have been on and off medications for it. I too have had that weird smell comefom my nose/mouth. I also get a rash sometimes. The fungal medicine seems to keep it under control (at least temporarily) I do not know why your husbands doctor took him off the fungal meds he was on??? I would ask. That smell does get annoying.
I just wanted to let you know he was not alone in the fungal dept.
Lisa Coffeelover

Doug
05-22-2009, 09:22 AM
Bethany-

Wow! Everyone is exactly right about involving non-military specialists as soon as possible. You don't want this to progress to a point where your husband's kidneys are involved. I don't want to be an alarmist, but WG can kill, it can cause kidney and heart failure- read through this forum for instances of members who've experienced those circumstances-, it can result in dialysis, it can result in kidney transplantation, it can result in loss of finger and toe tips to gangrene, I mean the list goes one!

As others have suggested , you need to become very knowledgeable, fast about your husband's WG. There are resource materials in this site, though I never seem to be able to find them when I want them. (Andrew- There's that excellent St. James Hospital publication on WG you posted in here somewhere) Also, I pasted a link to the Vasculitis Foundation website below. That's the organization Sangye referred to above. They have a list of specialists you can contact. Cindy found them especially open and helpful when she was trying to make sense ofWG with regards her gravely ill granddaughter.

Jack's right: be proactive, be very involved in your husband's care, asking questions about treatments, expected outcomes, possible complications in the near and far term. I just noticed Sangye had a link in her posting for the Vasculitis Foundation. Never mind. It doesn't hurt to have that all over this forum so that new people stumble on it one place or another.

Also, this is a family of Weggies and family members of Weggies. We will support you in every way we can.

As for the smell, you have decaying tissues in the sinuses that might account for it, as well as an end to the smells as soon as the healing processes begins and continues. The body might just be overcome by too much dead tissue at once to deal with it. That's just wild speculation on my part.


www.vasculitisfoundation.org (http://www.vasculitisfoundation.org)

germaine
05-22-2009, 02:17 PM
I was tested for TB about 8 weeks after I was diagnosed with WG and it came back negative. Most of my involvement was from the neck up, but I did have reduced lung capacity. So WG does not positively give you a positive TB result