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Copper
Hi Chirley,
Has the surgery (with complications) led to weight loss as you hoped it should do? Can you move better or are you still weak?
Too bad that your oesophagus isn't working properly but when you are in better condition that perhaps could be treated - the muscles near the stomach seem to hold food instead of letting it slide down to the stomach.
Even if it was positive when your counts were normal you are - lika many of us - used to live with low counts. I remember that you had hardly any neutrophils at all and received many blood txs.
As you write it must be the uncertainty and isolation that are the most difficult problems because your disease is so uncommon. As I have written before I admire your fighting spirit and the way you try to find the best possible treatments.
Kind regards
Birgitta-A
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