Sunday, 15 April 2012

My Journey with WG.....

I should probably start with telling you a little about my self and my history. 
My name is Katrina Rose Sayer , i was born on the 20th of November 1995 , which now makes me 16. 
I was relatively normal, bubbly personality, LOUD ,outgoing ,shy (i know weird to think that an outgoing person could be shy but its true. ) . loves to laugh, funny etc. 
I thought i was your average teenager, self conscious , boy crazy , a massive pain to my parents, and just loving life , id never had any health problem apart from the odd cold. 
Little did I know my world was about to change forever. 
Sometime in May last year I got an ear infection in my left ear, at first we thought it was just your typical ear infection so we went and saw our GP , she gave me ear drops and antibiotics and off I went. After the 5th round of antibiotics she decided that there was something else going on (go figure) so she sent me to a specialist.
 He examined my ears and told me that I now had a middle ear infection which means that it had moved further into my ear and he was now worried that I have fluid behind my ear drum so I was sent to have a CT scan. I went and had the CT and he had also started me on my first round of steroids (prednisone) and more antibiotics, the results came back and everything was relitivley normal , butb there was some fluid. He kept and eye on it and i had a hearing test which showed that i had lost about 40% of my hearing.
After a few weeks everything seemed to be normal so he stopped the pred ,antibiotics and eardrops and told me to call if anything changed, Within 2 weeks the pain and ringing was back in my ears so we gave him a call. He told us to come to his office the next day , 
When we arrived he looked at my ears and was astonished , it had progressed to a inner ear infection, he said that he had never seen it heal and then totally jump to a different area, he wasn't sure what to do so he referred me to another specialist. 
We went and sure this specialist 3 days later and he told me that i would need surgery to have a grommet placed in my left ear, this was scheduled for 2 days later. 
( i'll save you details) The surgery went fine and we thought it was all over. 
I had my major year 10 exams coming up, so i was focused on healing and studying.
About a week after surgery everything started to fall apart. 
I woke up one morning with what we thought was just a cold, 3 days later i woke up in the middle of the night in excruciating pain and couldn't move.
The next morning mum took me straight to the hospital emergency room and i was coughing really bad and having horrible chest pains.  The date was now October 31st , The hospital did and X-ray and told me that it was a slight chest infection and sent me home.
The next day my mum got a call from the nurse at the hospital who told her they reviewed the x-ray and thought i could have possible TB or cancer, but they didn't want to run any further tests.
I was dues to see my specialist the following day for a post surgery check up so we decided to get his opinion on the situation and he told us to ignore them and that it was just bronchitis.  
Over the next few days i was really struggling to breath when I walked anywhere and was getting worse so we decided to go and see a doctor  (our GP was away) he looked at the results and the x-ray and discovered that the hospital had given me the wrong dosage of antibiotics.
He prescribbed me new antibiotics and told me I had pneumonia and to come back in 2 days. 
The next day was my first major exam, i had been given special previsions to sit ina seperate room, i woke up with a 38° I barely made it through the first 3hr exam but managed to make the second one , the teachers told me not to bother coming back the rest of the week to just get a certificate from the doctor. 
That afternoon we went and saw the doctor and he gave me a second antibiotic and told me that if it hadn't improved in 2 days to come back.
So as you can probably guess it hadn't gotten better over the next 2 day, in fact it had gotten a lot worse , i was coughing up small amounts of blood. 
He ordered me another x-ray and a blood test ( my first EVER blood test - i hated needles) 
We got the results and he told me to go home and pack a bag because i was going straight to the children's hospital.
We arrived there at about 6pm , and then waited in the waiting room till about 10:30 pm. 
We were finally admitted into a ward at about 2am. 
The next morning i was moved to sand isolation ward because i was still speculated to have TB.
We were'nt able to do the test until Monday ( you know hospitals they run on there own time!)
So the test was done and the result was ..... NO TB! just like I and many others had said al of that mucking around for nothing. Now they were treating me for a staff infection and pneumonia and was on morphine , supper high doses of pred , and high doses of antibiotics, 
I wasn't reacting to the treatment and was just getting worse, by now I was coughing up blood , falling asleep all the time ( on the toilet , mid condensation , while eating etc.), on oxygen full time , could hardly walk....
We were running out of time, my lungs and body were bleeding out and i didn't have much longer (i wouldn't have made it through another week)  doctors were frantically doing test and blood tests
 ( 3 freaking times a daay!)
One of my doctors had a great idea to sit down and write down all my symptoms , possibly diagnoses, treatment etc. through doing that they decided to do a biopsy of nogels in my nose ( which i was AWAKE for!!) and also and anchor blood test.
I was diagnosed with Wegener's Granulomatosis.
They started chemotherapy (cyclophosphamide) the next day. 
At this stage i was due for chemo once a fortnight x 3. 
I celebrated my 16th birthday 3 days later in a hospital ward, it wasn't the best but i can say i will never forget it. The amazing nurses in that ward became like family to me and my mum , Sam , Marie , Charlotte , you girls are amazing and we could not have done it with out you! i am forever grateful to you 3 women for treating me like family and taking such amazing care of me! i love you guys.
I was moved to an adolescent ward a few days later, where i stayed for another 10 days and had another treatment. By my final week in the hospital I had finally taken off the oxygen mask,went for small walks, sleep once maybe twice a day ( not 20 times ). 
I was in there for a total of 3 and a half weeks and in that time i had met some incredible people! i had also been interviewed on the radio for a toy drive for kids staying in hospital over Christmas and met one of the lovely hosts from that show as seen on the right. 

I now have chemo once a month and am due for my final treatment on the 4th of May! ( woo )
I am totally deaf in my left ear now.
I'm down to 3mg of pred (from over 100mg) and one antibiotic a day. 

i managed to hang on to most of my hair ( thank god i had SUPER thick hair or i wouldn't be so lucky)   
I'm back at school and starting to get back to normal!
i shall keep you posted on my progress! 

Katrina xx