Thread: Big decision
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Old Tue Feb 9, 2010, 12:32 AM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Big decision

Hi,

I have to make a decision about work. I have had to cancel my booked transfusion for this week because my work roster has been changed without notice and I couldn't make it to my appointment. I rang my haematologist and he said that this roster change was very concerning and quite insensitive of my employer. I rebooked my transfusion for the weekend which is okay for me but not so good for my doctor. It means that I also have to try and work with a low Hb for longer, I feel very fatigued already and know that by the time I get my transfusion I'm going to feel awful.

I saw my GP about a UTI that I've been unlucky enough to get and while I was there, I mentioned the work issue. He has offered to sign me off work with a total and permanent disability so that I can receive my insurance pay out. I have discussed this with my family and they think I should accept this offer and stop working. I'm very anxious about this, first because I don't know if the pay out will last long enough until I'm eligible for a pension and secondly, it feels so final. It feels as if this disease is starting to beat me and it's a downhill slide. If I accept the pay out, I'll feel like a quitter. (on the other hand, I'm so tired that I almost hate going to work.)


I'm really confused.

Chirley
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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