Hi, my husband and I are from Frisco (suburb of Dallas, TX). My husband is 41 years old, we have been married 2 years as of 10/21. He had what we thought was allergies, then sinus infections ongoing since late January of this year. Went to GP's and after SEVERAL failed treatments of antibiotics and no relief, finally went to see ENT (not at request of GP, they ordered CT and said everything looked "fine"). My friend insisted he see her ENT. HE reviewed the CT from the GP and said there was no way this looked "fine". He scheduled sinus surgery.. this is now September. Go in for sinus surgery thinking he is going to wake up feeling good as new. I get called into the "consultation room" and am told that the ENT aborted the surgery as the massive bleeding in the membranes was indicative of W.G. He took tissue samples to biopsy, later confirming WG. He tried to explain to me what this was and set up an appt w/ a Rheumatologist for 10/8..soonest we could get in. During the time between the "sinus surgery" and the specialist appt, my husband took a HUGE turn for the worse. He couldn't get out of bed, mass nosebleeds (these actually had been occuring for 2 months), Our new GP diagnosed him as having pneumonia, of course, he didn't but at least she had enough knowledge to prescribe him a steroid to buy a few days until we could meet w/ the specialist. To make a long story short, between the time of 10/8 (1st appt w/ specialist) to 10/16 my husband's health detoriated at such dramatic speed. Even though he was started immediately on Cytoxin and 500mg 1 day of Pred., 1000mg and 1000mg the followig 2 days , hiscreatinine levels from 10/11-10/16 went from 1.9 to 5.2, was sent to ER and has been in hospital ever since. Friday 10/17 he was given 1500 mg of IV cytoxin and 1000 mg of IV steriod for 2 days... Sunday 10/19 emergency catheter was inserted and plasma exchange began. His creatinine levels had gone over 8. They kept rising, by Tuesday 10/21 (our 2nd anniversary) he was in ICU and had started Dialysis in addition to plasma exchange and blood transufusions. Creatinine had risen above 9. They kept ( and keep ) testing him for other diseases that could be attributing to such a rapid failure of his kidnesy (including kidney biopsy) but everything comes back pointing to WG. They team of 5 specialists that he has are all "baffled" at the rapid progression from his sinus' to his lungs to his kidneys as that is not "typical" of WG. We are talking within a week his kidneys went from ok to acute kidney failure. We ARE fortunate that our team of dr.'s are well versed in WG so they have thrown all caution to the wind in order to get him better! He is on disability from work and still in the hospital but hopefully, will be out this weekend! This is a devastating and horrible disease that is such a mystery. I am so thrilled to have found this forum!! Sorry to unload so much on my introduction
Bookmarks