[Chirley]

Hi, looks like I spoke too soon. My blood results on Friday weren't good. Despite Mondays Copper level showing it was in normal range, even before this week of copper infusions, I've developed pancytopenia again.

My ceruloplasmin level was low so I'm not able to utilize the copper at a cellular level. My doctor says my liver is getting worse and I think, he was relating the lack of copper transport protein to the liver dysfunction. All my proteins are low and getting lower despite increasing my protein intake.

He said that I may have to have further venesections even though my red cell count is low because he needs to take some of the load off my liver and hope the function improves. (red cells low but Hb just in normal range).

He admits to feeling at a loss at how to treat this, apparently there is a lot that isn't known about metals and how they are metabolized. I think I might have to make an appointment to see the metabolic medicine doctor and ask him to contact my hematologist and discuss the possible reasons and treatment options for this.

I feel okay physically I'm just having problems coping with the highs and lows and the hopes and disappointments. The emotional toll is leaving me exhausted.

One positive thing is that I can start tapering the Fludrocorttisone next Thursday with the aim to cease it entirely within the following 10 days. The tapering is wholly dependent on my BP staying at 100 or above. If it drops
below that point I have to restart the full dose. Fingers crossed.

Regards

Chirley