Thread: Steroids
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Old Mon Jan 16, 2017, 09:54 PM
Naive Naive is offline
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Join Date: Jul 2016
Location: Gold Coast, Queensland, Australia
Posts: 77
I had a seizure this morning, this was my first I've ever had. My bone marrow failure is still undiagnosed but I'm transfusion dependant. My white cells were very low but they have improved (neuts were at 0.1)and it's only my lymphocytes that are very low.

My body is deteriorating rapidly and I've lost so much weight that I'm on enteral feeds through a feeding tube. I've recently had two episodes of functional pseudo bowel obstruction....no cause found...theorised to be due to autonomic? nerves not working.

Now I've been referred to palliative care. My first appt is this afternoon. I realise that this is to help people with a terminal illness to be comfortable but no Doctor has told me outright that I'm dying. When I told my pharmacist about the pall care appt, he asked what time frame the Doctors gave me to live.

I'm a pretty pragmatic person and I'll accept whatever happens but I'm annoyed/frustrated and feel like I'm being patronised because I've never had any information given to me about my illness being terminal, despite repeated requests for information.

Has this happened to anyone else?
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