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Update
It's been a hard two weeks of waiting.
I had an urgent appointment with an Immunologist last week. The consensus of opinion is that I have become sensitised to the CuSo4.
I am currently undergoing a desensitisation program. This is Day 1.
I started last night with 4mgs of Dexametasone then a further dose of 2 Loratadine tablets this morning, then I was started on the IV Copper. They have reduced the dose from 5mgs in 500mls to 1 mg in 500 mls and are titrating the rate up over a number of hours until I'm eventually on 80mls an hour. I'm going to be here for a very long time. Later this afternoon the Daycare NUM will phone the Immunologist to get new orders for tomorrow.
The Immunologist explained that the desensitisation process can involve very low dose exposure over a long period of time, so I don't know if or when I can get up to a therapeutic dose again but I'm just happy to be offered a treatment at all.
There was some talk that I may have had a clot in my port (I had my port needle dislodge last time) and when my port was flushed it caused the clot to move through my heart and break into micro embolisms which can resemble a rash. We are hoping this was the cause but the doctors are not willing to take a chance and are treating it as a drug sensitivity, given my previous anaphylaxis history.
I had a frank talk with the Immunologist about the consequences of not have Copper treatment and we had a talk about appropriate palliation and end of life care in that circumstance. I told him that I want to die as quickly, painlessly and peacefully as possible if that situation arises. It was good to finally discuss my needs, wants and fears with someone who is in a position to make sure they are met.
So far today, all is good with no reaction at all, fingers crossed.
Regards
Chirley
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