Seriously, I go to Townsville for my regularly scheduled Infliximab infusion and what happens? I wind up in hospital again; this time for two weeks... Arrrrrrrrrrrrgh...
I had been feeling pretty run down and febrile again in the couple of weeks leading up to the appointment, so when I presented, Dr. Michelle decided that it was best to admit me straight up. It's probably a good thing that I sort of had a bag packed. I had been in Townsville for a couple of days leading up to the appointment to be a case study in the Royal Australian College of Physicians candidates exams.
Anyway, as soon as the bed assignment was made, I was put on in intravenous infusion of broad spectrum antibiotics. Apparently the thought was that I may have an infection which was causing the high temperatures I was experiencing. I on the other hand, was entirely convinced that the lower doses of Prednisilone and Cyclosporin that I had been taking for the last 6 weeks were simply not keeping the disease in check.
Blood tests for CRP, ESR and CK levels, as well as Blood Cultures were about to become a daily part of life...
Day two of the admission found me in Medical Imaging getting ultrasound scans of my chest cavity and my thyroid. It was discovered that there were some nodules growing on the thyroid which were of an unknown origin.
Day three saw a Chest X-Ray done, as well as a high resolution CT dye scan of my neck and stomach. Not sure why that one was done, Hmm... I was also taken OFF my immuno-suppressants just in case my body was indeed fighting an infection.
Day four came and it was off to Nuclear Medicine to have a keyhole dye scan of my Thyroid. This showed that the nodes on my thyroid were not actually productive cells and may be tumorous. As if I don't have enough problems...
Not much happened for a few days after that. Hospital can be a very boring place to be if you are feeling reasonably well and are mobile. I'm just glad that I had my Laptop and a wireless broadband connection to stop me from going over the edge.
Kerry and the girls came up over the first weekend to visit. It was pretty much the highlight of my week to see my family. When home time arrived on Sunday, it was quite upsetting for all involved.
The following Monday and Tuesday came and went without any movement on the medical front. The muscle pains had increased significantly to the point that Tramadol was not having any effect, so I was moved on to Oxycodone which works much better thank goodness.
During week two I had visits from the Haematology and Infectious Diseases people who wanted to look for Lymphoma and HIV among other things. I can now clearly say that I am HIV negative. (As if there was ever a doubt, pfft...) They also managed to cram in a Gallium scan looking for the possible Lymphoma and other infections. Yes, apparently after over a week of blood cultures where nothing had grown, we were STILL looking for the ever elusive infection; Hmm, go figure...
Anyway, after all of this I was discharged on Monday, only to have to return on Tuesday for a biopsy on my thyroid. We still don't have any results from the Gallium scan or the biopsy, however it is my suspicion that neither will show whatever they are looking for, and FINALLY the conclusion can be made that the disease is in fact active again.
So, here I am back home. My Prednisolone and Cyclosporin are being withheld until the results of the tests turn up, and it's now been nearly nine weeks since I have had an Infliximab infusion. My condition seems to be deteriorating little by little each day (I'm feeling shades of '07 again) however the Endone (Oxycodone) is making it bearable. Hopefully this time next week, I'll be back on my regular drugs again, will have had my Infliximab and will be on the road to what passes as a normal life for me.
Will let you know next week...
Cheers,
Jason
