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MDS Myelodysplastic syndromes

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  #1  
Old Sun Jun 7, 2009, 12:30 PM
npmadsen npmadsen is offline
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I think Dad is failing

Dad is 94 and has been transfusion dependant for about 2 years now
He has gotten so weak the last week, he could hardly move without terrible pain in his back on Thrusday and with SOB with movement.
I brought him to the hospital in the am.
His wbc 600, hgb 7 , and plts 34,000
He had just been transfused 3 weeks before, his transfusions usually last 5 to 6 weeks.
They transfused him 2 units, his hgb went to 10.6, but a day later down to 8.9, and plts down to 30
The pain is still present with movement but less severe and he is able to get around with the walker. We are giving him percocet
He is sleeping much more did not get up till 9am , he is usually up and down all night.
His gums also are bleeding today, has quite a bit when he got up this am.
He is so frail now and weak.
We are going to try and get his hgb checked at home, we will transfuse when he drops to about 7 as they feel the pain is worse by the low hgb
I am upset and trying not to let Dad see it, as he does not understand what is happening. I am just trying to reassure him.
What should expect in the next few days?
Thanks
eileen
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Old Mon Jun 8, 2009, 02:05 AM
Chirley Chirley is offline
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I don't know how your Dad copes with a low Hb but 7 seems very low and it must be very hard for him to function with any degree of comfort.

I hope things improve for your Dad. It's very hard watching someone else you love, suffer from an illness. In a way, it's worse than having the disease yourself.

Good luck.

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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