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Hi, I feel great.
I'm at home and I'm being overwhelmed by my dog and two cats......happy days.
I have no pain at all, I'm not breathless, my rash is improving and I can walk around my house with a walker instead of using the wheelchair.
Tytd, I have Cu Sulphate. Originally we tried to get Cu Chloride but couldn't access it (I was going to fly to Rochester to get some). I have a friend who is a TPN nurse and she gave me the contact number for the drug company pharmacist who supplies the home TPN patients. I passed this on to my haematologist at the time and that's how I got the treatment. The Cu is supposed to be diluted in Normal Saline at 1mg/100mls and run at a rate of between 0.5 to 1.0 mg/hr. I noticed this time that the nurses were using a 1mg/50ml concentration, I don't know why they changed it, I assume on pharmacy orders.
None of of my doctors have ever treated a copper deficiency before. The haem has subsequently found one other person with Cu deficiency which was easily corrected and they recovered completely. Unfortunately, I have renal Cu wasting so my Cu level will never be stable. As for the electrolytes, I have no idea. I wasn't very aware at the time, I did wake up covered in cotton wool balls and tape all over the place.
My neuro has written a paper on my case which he presented at an international conference, he also submitted it to a journal but I don't know if it was printed. I often get presented at Grand Rounds and I am used for Doctors to do their final practice exams on. My physician brought two Registrars to examine me on Sunday (the same day as my seizures) as part of their final year practice exams. I was under strict orders not to volunteer any information. The girl was so nervous she knocked everything off my bedside table and then knocked the pedestal fan over and the boy kept stuttering. I felt sorry for them. My physician seemed to be enjoying their discomfort. He came back later to tell me they both had my diagnosis wrong but he knew they would. Apparently one said MND and one said T2 spinal injury. My doc said the girl was the better of the two but they would both eventually make good doctors.
I'm just going to shower in the luxury and privacy of my own bathroom.......heaven.
Regards
Chirley
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