I'm still here, stuck in this bed. I don't mind so much anymore, home isn't the best place for me anyway.
I've taken advantage of every opportunity or service on offer. My meals are now back to where they were last time I was here for a long stay. I can order lots of extras from the kitchen. However experience had taught me to avoid the hot-dogs, chips and chicken nuggets. I dog would probably send them back.
Tomorrow I am in surgery to have two wisdom teeth removed. This would have cost me a small fortune privately but when in hospital it's free. I just told the doctors that I would be at risk of infection if left in and that I'd need extra blood and platelets for the extraction. They agreed and presto I was booked!
I had a terrible, terrible 24 hours over the period of monday night/tuesday. The doctors had commented that my fevers were resolved and that I must have had an infection that was now gone. I said "well... nooo.. lets just say I've had a couple of convenient headaches whereby I've asked for panadol". They said they needed to know if I was still developing fevers so they could see if the medication worked.
My response to them was that after 18 months of personally monitoring my temperature I could assure them that I would still be running massive fevers if it were not for the fact that I now know the warning signs (once I get to 37C+ will always run a full fever if left unchecked). Apparently my word was not good enough and they asked that I take no panadol for 48 hours. I said they could have 24 hours max as when I run a fever I get very sick with rigor, chills and coughing.
Sure enough I ran three full fevers in that 24 hour period.
During that time my IV cannula stopped working for the third time in three days.
From experience the chances of getting a new line into me while febrile is slim in the extreme.
But still they tried. After-all I have those critical IV antibiotics to be infused (the ones to kill the bugs that are supposed to be giving me the fevers ;)
Two doctors and one senior theatre nurse all tried and failed. There were six failures over a period of nine hours. To say I was over it would be an understatement! The stress of running a fever and having a continuous line of "experts" pushing a bloody great butterfly needle into your arms in the hunt for a vein just wore me out completely.
Finally one doctor thought he had it sorted. He managed to half insert the cannula into a vein in my left arm that I know to be heavily scarred and I told him this.
He suggested that the reason it would only go in half way was because it was against a valve. I said scaring. As soon as the nurse tried to flush it with saline 20 minutes later it hurt like hell and would not flow. I had to tell her twice to stop pushing. Why is it that the younger they are the less they are inclined to believe the patient might actually know something? I told her, once she had stopped trying to blow my elbow up like a balloon, to draw back on the syringe. It wouldn't flow that way either. It was blocked.
Another failure. Two hours later the same Doctor re-appeared and had his last attempt this time under my direction. (I pointed him to the best vein and suggested that maybe hot water in a glove held against the arm would also help. This is std practice on the cancer day ward)
There's no word on my treatment plan as yet, even though I have asked. This actually gives me some hope of getting the new drug. I don't want to get my or anyone else's hopes up because there's no firm reason to support my hunch but I do read body language very well and I've seen and heard enough to realise that there's something happening behind the scenes. They too probably don't want to get my hopes up and are probably working hard in that direction but with no firm answer. I hope they succeed in obtaining it.
I checked the proposed price of the drug online yesterday... around NZ$120,000 for the full treatment, ouch!!
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