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Thanks everyone, I'm chuffed! I am still having Baxters copper sulphate but in smaller doses on fewer days less often. The big difference is I have large amounts of steroids before during and after the copper infusions.
The Professor I used to see once said that my normal is different from other people's normal . That my "high" zinc level may not be high for me and that my normal copper level may be different from the so called "reference range". Before we were always striving to get the copper into the reference range and it was like chasing our tails. The more copper I was given, the more I lost in my urine. Now we aim to just keep the copper level at a place where my blood counts aren't too bad. In fact I haven't even had a copper level for months. My treatment is based on what my counts are doing. It looks as if my "normal" copper level is lower than the average population. So it's finicky to get right, when I have too little my counts crash and when I have too much my counts crash.
The only line that never reaches normal figures is my platelets and they have never been really low. Now they hover just below normal at 130-140.
I haven't had a BMB for 2 and a half years. The last one I had still showed dysplasia in all three cell lines despite my peripheral counts being normal at the time. I don't know if we gave it enough time for the copper to repair my marrow or whether I do still have MDS. My official diagnosis is still MDS and I'm still registered on the Federal Governments Cancer Registry.
Honey, I promise if I get the weight loss surgery I won't turn into an uppity *****. In fact I think all my skin will be falling around my feet but I don't care, I just want to be able to walk a little better.
We are having our Riverfire Festival in Brisbane this Saturday with massive fireworks displays and fighter jet dump and burns etc. the best view for this is from the hospital I go to (hotel rooms charge about $3,000 a night during Riverfire). Last time I had copper, I asked my Physician if I could be admitted for the night so I could see Riverfire and he agreed to give me copper infusions over that weekend. But, I'm doing so well, I can't justify having copper early, so I'll miss out on Riverfire again. The nurse said I should just get admitted for the night for "observation" but its not exactly honest for my health insurance so I won't do it.
I think my next door neighbour has had a baby and I didn't even know she was pregnant. I keep hearing a very small baby cry. My dog gets very distressed. Dee (my neighbour) has av12 year old son and told me she wouldn't have any more so if I'm a bit shocked, how must she be feeling. There's nothing quite as heartwarming as a new born baby.
Regards
Chirley
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