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  #51  
Old Mon Sep 17, 2012, 04:56 PM
Chirley Chirley is offline
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Location: Logan City Australia
Posts: 1,100
Hi Birgitta,

We told the renal doctor that we could do peritoneal dialysis at home but it takes a few weeks for the dialysis catheter to mature enough to use and she didn't have the time to wait so they had to start haem dialysis straight away.

The angio showed a narrowing of one of her coronary arteries but it's not bad. Just bad enough that when her BP drops, like with dialysis, she gets angina. There is nothing they can do. Her aortic valve stenosis isn't as bad as they first thought.

We are waiting for her renal physician to let us know how he's going to proceed.

Mum seems quite happy and comfortable and that's all that matters.

We'll just keep hanging in there.

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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  #52  
Old Sat Nov 3, 2012, 09:13 PM
Chirley Chirley is offline
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Location: Logan City Australia
Posts: 1,100
Update

It's been a while now.

My Mumhas been home for a few weeks. We are all getting into the dialysis routine.

Mum lost quite a bit of weight and dropped to 44 kgs but with adding in supplements and her increasing appetite she is now up to 45.7kg (dry weight, post dialysis).

She is slowly regaining strength and her mood and behavior is a lot better (she still has her moments). She has started doing a little cooking and has started doing her own clothes washing. Her general hygiene has returned to normal and she showers and grooms herself again.

Mum even asked Dad to take her shopping (I was worried that it would be too strenuous) and when they returned home Dad was very frustrated because every time he took his eyes off her she would disappear into a shop and he would lose her (she has always done this...some things never change).

Mum and Dad were quite frosty with each other because they disagreed about where to have lunch, what kind of shoes Mum wanted to buy etc, etc. Ahh....back to normal, 63 years of marital bickering restored yet again

Regards

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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  #53  
Old Sun Nov 4, 2012, 05:22 AM
Birgitta-A Birgitta-A is offline
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Location: Stockholm, Sweden
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Your mother

Wonderful Chirley! Your mother is really doing very well compared with how she managed before she got to the hospital.
Kind regards
Birgitta-A
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  #54  
Old Sun Nov 4, 2012, 11:50 AM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
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That is great news.I know it's a big relief for you.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #55  
Old Mon Nov 5, 2012, 01:29 AM
cathybee1 cathybee1 is offline
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Location: Fort Jones, California
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Great news about your mom, Chirley. Thanks for sharing. Hope you now can settle in to adjusting to your new daycare arrangements.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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