Well severe chest pains started at home in Gladstone, we went to Gladstone Hospital ER and worked out it wasn't a heart attack but I knew something was happening. After an xray then follow up CT Scan the next morning i had lesions on my lungs of some sort. The next day I went to Rocky for dialysis and I requested anchor blood tests be done " Takes 3 days or more for those to get back "
Still with chest pain I was given a course hard antibotics as not sure what was happening, but awaiting results. On the Tuesday I went to Rocky for my dialysis session feeling shit, and got the results of the blood tests, the Wegners was back, my reading was +160. Doctors sent me to RBWH via RFDS...
And after not much debate and a few more CT scans it was determined that my Wegners was active again and the doctors went into full swing trying to get on top on it before it does to much damage.
The wegners had devoloped 2 large leishons on my lungs and they started to hemrage and bleed i had a shocking night my Stats droped rapidly i became oxygen Dependent and coughed up alot of blood.
With that I ended up in ICU for 6 days, with lots of meds and the assistance of the BPAP machine a machine that forces air into your lungs I managed to process from ICU back to the ward, alothough I was still recieving dialysis and plasma pherisis daily.
Within approx 7 hours of being in the ward I was seriously ill again, so instead of my lungs this time its was my belly I was in excrutitating pain and the nurses were only offering pandol and my pain score was an 8 ... unfair right. I called my gf and mum to come up it was 2am in the morning and I needed them as noone was listening. When they arrived things finally started to happen I was given drugs and taken for an xray a ct scan and seen by all the doctors but it was 9am when my pain was finally under control and I was given a nasal gastric tube and told that i had a bowel obstruction. Just what I wanted!! This is happening in the same order as last time my disease attacked I just hope it isnt as bad. Im still recieiving treatment in the RWBH and will be spending christmas in hospital luckily I have my family all here supporting me.
Anyway what else has been going in my life ...there are good things so wegners sufferers out there realise for all the times we struggle we get a bit more of the good times to :)
So Ive been trying to do things on my bucket list this year, its never to early to start. Ive been skydiving with my big bro and friends it was amazing. I managed to go back to work even if it was only on non dialysis days. I worked on an old 79 fairlane a V8 finally. I moved it to my girl friends house and hopefully well be well on the way to starting a life together. My fistuals fully functioning and been a great acess during this treatment.
Anyways Ill fill you all in when Im out of here and let you know what happens.
3 comments:
Hello Trevor, my boyfriend was recently diagnosed with wegeners. He was in and out of the hospital for 2 months and is now home on steroids. I have a few questions to ask as to how it happened. Please email me samanthahermida@gmail.com thank you!
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I have Wegener's, I have been living with it for about 7 years now and I don't personally know too many people who have it. I definitely feel alone sometimes! Hope all is well.
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