Weggoners granulomatosis HELP!

[smk1, LPN]

hey all you smart nurses out there! I was wondering if anyone had any experience with this rare autoimmune disease? A friends parent was recently diagnosed with this and spent 3 weeks in Icu. I've googled it but since i am still a student most of the info that i found was a bit too technical for me to understand. (not a lot there anyway), So if anyone knows anything about this i'd appreciate some input, thanks guys. :)

[kids]

are you sure about the spelling?

here is some info on wegener's granulomatosis.

http://www.niaid.nih.gov/factsheets/wegeners.htm

http://www.wgassociation.org/index.jsp

http://www.merck.com/mrkshared/mmanual/section5/chapter50/50n.jsp

http://www.nlm.nih.gov/medlineplus/ency/article/000135.htm

these are both support sites with chat for people with the disease:

http://www.wegenersnet.org/index.jsp

http://www.geocities.com/wbh7777/wegen.html

i hope these help.

[caroladybelle, BSN, RN]

Try posting it in the Onco forum - Hemo nurses may have some input.

[cori.d]

My cousin was diagnosed with it four years ago. To be honest, it can be a pretty rough disease. Given his experiences, I would recommend seeing a specialist at a major medical research center ASAP. It's an autoimmune disorder that usually "attacks" the lungs or kidneys. It deposits granulomas, or crystal-like deposits into the tissues. This can lead to a number of problems (like lesions or "sores" on the organ) that lead to scar tissue. Treatment of Wegener's includes a very strict regimen of cytotoxic drugs (similar to chemotherapy) and steroids. The maintenance is long-term. Remissions happen, but it usually comes back. There are a lot of support groups out there...Good luck to your friend.

[smk1, LPN]

are you sure about the spelling?

here is some info on wegener's granulomatosis.

http://www.niaid.nih.gov/factsheets/wegeners.htm

http://www.wgassociation.org/index.jsp

http://www.merck.com/mrkshared/mmanual/section5/chapter50/50n.jsp

http://www.nlm.nih.gov/medlineplus/ency/article/000135.htm

these are both support sites with chat for people with the disease:

http://www.wegenersnet.org/index.jsp

http://www.geocities.com/wbh7777/wegen.html

i hope these help.

thanks for the correct spelling! no wonder we couldn't find much. :imbar

[littledutchgirl53]

I was diagnosed with WG in 1996, have had one flareup since. It is hard at times to cope with but new medications make it so at least there is a chance for survival.

[Zee_RN, BSN, RN]

I've only had one patient with Wegener's. He was the kind of person who never went to the doctor so by the time he was diagnosed, it was too late. His hearing was affected, he was in renal failure and he had major epistaxis. He did end up dying in the Unit. That was probably 4 years ago so the details are fuzzy. But I can remember that nosebleed and the packing and the facial oxygen tent...

[smk1, LPN]

thanks for the replies. My friends father is doing well. He finished his chemo treatments last spring and has been in "remission", (don't know if this is possible technically, but it is the term that they use). He had a rough go for a while, and we didn't ecpect him to make it. I will say that about a month ago his oxygen levels were getting low and he was feeling sick, and was admitted for a few days. he is going t see specialist along with his pulmonologist, to make sure to be proactive this time around, rather than waiting until it is almost too late.

[lookingtomove]

I recently took care of an elderly female patient w/ hx of Wegener's, on chronic steroid therapy... After emergent abdominal surgery, she remained intubated and un-weanable after 3 wks... She went to a long-term, acute care facility until she could be weaned from the vent. Family said the first symptoms she had was open sores in her mouth that wouldn't heal. Hope things are going well for your friend's father...