Zoe
05-08-2012, 10:32 PM
Hi everyone, I'm Zoe
I was diagnosed with Wegener's in 2010 in September but I had been sick from about June of that year.
I was 15 at the time, I had always done well at school, been involved in sport and cultural activities and had a great group of really close friends. This happened to be the time of year when I had a few things going at once: the school production, choir competition, sports practices, and school work.
It was getting near the end of term two and I really needed a holiday, I was exhausted and coming down with a cold. A week into my two week holiday break I still wasn't getting better in fact I was getting pretty sick. My mum and I went to the doctors and I was told that I had an ear infection caused by sinusitis (not surprising as my dad suffered from sinusitis too) so I went on my first of about 4 different lots of antibiotics.
I was determined to go back to school when the next term started and I did for a time but I was just too weak and miserable so I forced to admit that I was really unwell I was breathing through my mouth at night as no air was getting through my sinuses. Still with no result of medication we went back to the GP and she scheduled an appointment with an ENT surgeon.
She was concerned about the inflammation in my nose (she couldn't even get the camera up to look properly!) and was also worried as I had lost a lot of weight and was getting side affects such as nausea from my antibiotics. We discussed surgery for my sinuses and she sent me off home again with a small dose of Prednisone.
Weeks went by but I didn't get better and everyone was flummoxed so they brought me into hospital for a few days to monitor me and hooked me up to an IV to administer the next antibiotic. The last morning I was there, the doctors were doing the rounds and I remember having about 6 or 7 people standing around me (mostly students) and one man in a suit. The man in the suit looked at me straight in the eyes and said that there didn't seem to be anything wrong with me and that I could go home!
He missed out big time!!!
The ENT surgeon that I went to see contacted me and said that she would get me to do more blood tests and try and figure out with some of her colleagues what was happening and that she would get back to me. So my mother and I left the hospital slowly as I was very weak by this time (early August- my birthday) and went home.
I had missed a lot of school by this stage and was getting pretty depressed mum took us up to our holiday house for a week or two. We were driving back down when we got a call saying that it was urgent that I come in the following morning so we did.
That morning was when I was officially diagnosed.
Prednisone 35mg , Azathioprene 150mg , Calcium, vitamin D, the works. It was almost the holidays but I didn't expect to here from any of my friends from school as they hadn't made any contact for months. I was in the house too tired to go out and nowhere to go anyway, it took until the start of the new year (2011) for me to have enough energy to get back to school and it was great to have something to do.
Everything was going well and my specialist was starting to pull me off Prednisone when I got an infection. Back onto antibiotics and back up on Pred. Specialist wanted kept me on antibiotics but kept pulling me off Pred.
It was in November 2011 when I started to develop extreme thirst! I was drinking over eight litres a day! Long story short the Wegener's had spread to my brain through my sinuses and was messing with my posterior pituitary gland causing me to develop diabetes insipidus another extremely rare condition diagnosed in February of this year.
So it turns out that my Wegener's was getting worse and was no longer responding to treatment. It was time for me to change to cyclophosphamide (something everyone was hesitant to do in the first place due to the problems with infertility) and my specialist applying for a government dispensation for the Rituximab (as it isn't available in New Zealand) in the mean time.
I am at a new school now and am trying to work out what I enjoy doing now (sport still out of the equation due to lack of energy and fatigue).
Nobody knows about my condition except my family, doctors. teachers, a few close friends and now you.
I look forwards to getting to know you and your stories.
Z
I was diagnosed with Wegener's in 2010 in September but I had been sick from about June of that year.
I was 15 at the time, I had always done well at school, been involved in sport and cultural activities and had a great group of really close friends. This happened to be the time of year when I had a few things going at once: the school production, choir competition, sports practices, and school work.
It was getting near the end of term two and I really needed a holiday, I was exhausted and coming down with a cold. A week into my two week holiday break I still wasn't getting better in fact I was getting pretty sick. My mum and I went to the doctors and I was told that I had an ear infection caused by sinusitis (not surprising as my dad suffered from sinusitis too) so I went on my first of about 4 different lots of antibiotics.
I was determined to go back to school when the next term started and I did for a time but I was just too weak and miserable so I forced to admit that I was really unwell I was breathing through my mouth at night as no air was getting through my sinuses. Still with no result of medication we went back to the GP and she scheduled an appointment with an ENT surgeon.
She was concerned about the inflammation in my nose (she couldn't even get the camera up to look properly!) and was also worried as I had lost a lot of weight and was getting side affects such as nausea from my antibiotics. We discussed surgery for my sinuses and she sent me off home again with a small dose of Prednisone.
Weeks went by but I didn't get better and everyone was flummoxed so they brought me into hospital for a few days to monitor me and hooked me up to an IV to administer the next antibiotic. The last morning I was there, the doctors were doing the rounds and I remember having about 6 or 7 people standing around me (mostly students) and one man in a suit. The man in the suit looked at me straight in the eyes and said that there didn't seem to be anything wrong with me and that I could go home!
He missed out big time!!!
The ENT surgeon that I went to see contacted me and said that she would get me to do more blood tests and try and figure out with some of her colleagues what was happening and that she would get back to me. So my mother and I left the hospital slowly as I was very weak by this time (early August- my birthday) and went home.
I had missed a lot of school by this stage and was getting pretty depressed mum took us up to our holiday house for a week or two. We were driving back down when we got a call saying that it was urgent that I come in the following morning so we did.
That morning was when I was officially diagnosed.
Prednisone 35mg , Azathioprene 150mg , Calcium, vitamin D, the works. It was almost the holidays but I didn't expect to here from any of my friends from school as they hadn't made any contact for months. I was in the house too tired to go out and nowhere to go anyway, it took until the start of the new year (2011) for me to have enough energy to get back to school and it was great to have something to do.
Everything was going well and my specialist was starting to pull me off Prednisone when I got an infection. Back onto antibiotics and back up on Pred. Specialist wanted kept me on antibiotics but kept pulling me off Pred.
It was in November 2011 when I started to develop extreme thirst! I was drinking over eight litres a day! Long story short the Wegener's had spread to my brain through my sinuses and was messing with my posterior pituitary gland causing me to develop diabetes insipidus another extremely rare condition diagnosed in February of this year.
So it turns out that my Wegener's was getting worse and was no longer responding to treatment. It was time for me to change to cyclophosphamide (something everyone was hesitant to do in the first place due to the problems with infertility) and my specialist applying for a government dispensation for the Rituximab (as it isn't available in New Zealand) in the mean time.
I am at a new school now and am trying to work out what I enjoy doing now (sport still out of the equation due to lack of energy and fatigue).
Nobody knows about my condition except my family, doctors. teachers, a few close friends and now you.
I look forwards to getting to know you and your stories.
Z