[Chirley]

Hi, I haven't been around for a while, I haven't been feeling very well but nothing to put my finger on.

No news really. For some reason my ferritin level is increasing without transfusions and I've been having some discomfort (sometimes pain) in the upper right quadrant. Liver enzymes still up but not getting any higher, for which I'm grateful. I had a venesection yesterday, maybe I'll start feeling more comfortable. I'm also booked for a liver USS tomorrow with view to avoiding the liver biopsy if everything looks okay.

I'm still having daily IV copper for 5 days every 3rd week. My copper level is mostly in normal levels now but my ceruloplasmin remains below normal. For some reason my CBC varies between all cell lines being slightly low (with normal Hb) to only the platelets being low. The platelets never reach normal levels now even though they were the only cells that remained normal until I
had Vidaza. The low ceruloplasmin is a bit of a problem because it means I can't metabolize the copper properly. My doctor hasn't said so, but I think it's the reason my CBC is still slightly abnormal with normal copper levels. I hope reducing the ferritin will help raise the ceruloplasmin.

Neurologically, I'm deteriorating slowly. I was assessed by an OT a few weeks ago and I'm losing upper body strength now. I have completely lost the use of my wrist extensors which explains why I've been having trouble using my manual wheelchair. The OT has recommended I buy a power chair and I'm just waiting for more input into which type of chair is the most suitable. I haven't been able to leave the house for anything other than medical appointments for about 6-7 weeks now so getting a power chair to be able to go shopping would be a big step forward.

I went for a driving assessment to see if I can use hand controls and while I passed the assessment it was recommended that I don't drive because it would be too tiring and would decrease my ability to complete my ADLs. The OT recommended I use the power chair in wheelchair taxis and buses instead. It would have cost around $70,000 to buy a van capable of carrying a power chair with lift and hand controls and I thought I could catch a lot of taxis and buses for that kind of money anyway and I wouldn't have the stress of battling the traffic and finding parking spots. So, I'm not particularly disappointed about not driving.

Even though I've been told that I don't have the capacity to increase my strength (too much nerve damage) I've bought myself a Wii and use that everyday to help retain the strength I do have and to help with hand eye co ordination and balance, it's also fun.

Well, that's my saga. Basically status quo. Hope I didn't bore anyone.

Regards

Chirley