Thread: Family problem
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  #10  
Old Thu Aug 30, 2012, 05:43 AM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
I found Mum and she is getting wonderful care (despite losing her for twonhours).

They needed to give her the blood transfusion because her Hb was so low she was having heart ischaemia but she became overloaded with fluid because her kidneys don't work. Then her lungs filled with fluid and now her heart is under pressure again.

The renal doctors are deciding whether to insert a femoral vascath to try some dialysis.

I tried to talk to Mum today about her end of life wishes but she didn't understand me so I couldn't push the issue. I still don't know if she wants all measures to prolong life or just comfort cares. It's a hard decision to make without her input. I don't want Dad to have to shoulder that responsibility because he is extremely distressed already and he is also not well.

The good news is that my prodigal brother has stepped up to the mark and is coming tomorrow to help my father around the house and to help Dad get to the hospital to see Mum. My Big Brother (my hero) is BACK!

I'm so tired. I was told to rest in bed for 48 hours post liver biopsy but I've only managed 1 and a half hours sleep in the last 2 days. Time to rest when things settle down I guess.

Regards

Chirley
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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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