Diagnosed With Wegener's Granulomatosis

LAST NOV 2009 I ATTENDED THE DOCTOR REGUARLY WITH A SORE EAR WHICH I WAS PRESCRIBED SEVERAL COURSES OF ANTIBIOTICS, THIS NEVER SEEM TO CLEAR I THEN GOT SEVERAL OTHER SYMPTONS SINUSITUS, CONJUNCTIVITUS, SORE JOINTS AND NIGHT SWEATS.  I RECEIVED 15 LOTS OF ANTIBIOTICS AND ON THE 2ND OF MARCH I WAS ADMITTED TO HOSPITAL SUFFERING FROM THE ABOVE AND ALSO SHORTNESS OF BREATH.  I HAD MANY TESTS, XRAYS AND CT SCAN.  I WAS TOLD ON THE 5TH OF MARCH I MIGHT NOT MAKE THE WEEKEND AS MY LUNGS WER FALLING APART,  I WAS LEFT WITH 4 HOLES IN MY LUNGS.  MY CONSULTANT AT THIS POINT THOUGHT I HAD WEGENER'S GRANULOMATOSIS AND STARTED ME ON PRESIDONE BUT STILL NEEDED TO GET BIOPSIES DONE TO CONFIRM THIS.  THESE WERE DONE AND HIS DIAGNOSIS WAS CORRECT HE STARTED ME ON CYCLOPHOSAMIDE ON THE 16TH MARCH. 
I WAS ALLOWED HOME BUT A WEEK LATER I WAS READMITTED TO HOSPITAL THIS TIME WITH TWO LARGE CLOTS IN MY LUNGS NOT CONNECTED TO WEGENER'S.  I NOW TAKE DAILY INJECTIONS TO THIN MY BLOOD
I HAVE ALSO RECENTLY BEEN DIAGNOSED AS HAVING TYPE 2 DIABETES ALSO RECEIVING MEDICATION FOR THIS!
FOUR MONTHS DOWN THE LINE I'M BACK AT WORK, ABLE TO GET ABOUT MORE BUT STILL GET BREATHLESS.
I BELIEVE IM GETTING BETTER DUE TO THE CARE I RECEIVE FROM MY CONSULTANT AND HIS TEAM OF DOCS AND ALSO MY OWN GP AND NURSE WHO LOOK AFTER ME WELL.smiley
isabelwilson1 isabelwilson1
41-45
4 Responses Jul 24, 2010

i got diagnosed with it two year ago and i am only 27year old. my start out with a cold that would not go away for 6months. so i had nose sugery and then they find out i have Wegener'S Granulomatosis. they put me on pills and i got better for like almost 2years. i just go sick again a month again. my hip and lag got 2time it size and hart to bad and i couldnt even walk so they put me back on pills i am getting better.. the thing sux is not have anyone to talk to about it

i got diagnosed with it two year ago and i am only 27year old. my start out with a cold that would not go away for 6months. so i had nose sugery and then they find out i have Wegener'S Granulomatosis. they put me on pills and i got better for like almost 2years. i just go sick again a month again. my hip and lag got 2time it size and hart to bad and i couldnt even walk so they put me back on pills i am getting better.. the thing sux is not have anyone to talk to about it

It's very scary just diagnosed 4 months very concerned about flair ups how do you tell scared about my organs!

Hey, I also have Wegeners, was admitted a year ago with severe lung disease. 12 months on I am back working full time and feeling almost back to normal. Keep positive like u have done u'll get there :) x