Need some support/give me a straight answer (MPA)

[oghre]

Im sorry I dont know where to post this but I just went through the worst weekend you could ever imagine. My 22 year old girlfriend got sick a few weeks ago. REALLY sick. She went to the hospital and had her lungs full of blood and her kidneys were almost shut down. She BARELY survived the weekend (and I mean BARELY) and was diagnosed with

Microscopic Polyangiitis

We have started the long road to recovery and its going to be really long. She is on ALOT of steroids and chemotherapy once a month (this JUST happened last week). Recovery will take about 1 1/2 years and a threat of a relapse of what I just went through within 5 years. From what I hear thats REALLY young for this disease and she has the most severe case of it.

I sure could use someone to talk too that has this disease or knows quite a bit about it, I have some questions I would like to ask if possible.

Thank you, Ive been dating this girl for 4 years and she means the world to me, Im a little scared right now and you would really be helping me more than you know

[MaryandSarah_]

Hi my name is Mary and my daughter, Sarah, was diagnosed with MPA and vasculitis on Feb of 2010.  The same as your girlfriend her lungs were full of blood and it was just starting to attack her kidneys. She spent two weeks in intensive care and another week on a regular floor.  She was only 16 years old and almost did not make it either.  She is now 18 and is still getting weekly treatments of Chemotherapy, solumedrol, and monthly blood plasma.  She has a lot of complications and is having a tough time with it. So far the disease is staying at bay, but we still don't know for how long she will be on all these meds.  Our Dr. said it is so rare and they just don't know enough about the disease. If you want to contact us our e-mail address is:  tex_sod***@****.  We live in Texas. May God bless you both and the family, we will keep you in our prayers as well.

[Marina_busybee]

Hi,  I'm so  sorry  your  gf is  suffering  with this  autoimmune  disease.   I had  never  heard of it  until  today,   I'm  sorry I  can  only  help you with  a  link.
http://vasculitis.med.jhu.edu/typesof/polyangiitis.html

There's a new  member on  www.kidneyspace.com  who  was   recently  diagnosed  as  well. If you  want to  get  in touch  with her  you  can  check  her  post  here:
http://www.kidneyspace.com/index.php?topic=3050.0;topicseen
She's  been  on  dialysis  ( renal  failure  caused by  PMA)  for  a month.