| Home Forums |
|
|||||||
| Questions and Answers Not sure where to post a question? Post it here. |
 |
|
|
Thread Tools | Search this Thread |
|
#51
Mon Sep 17, 2012, 05:56 PM
|
|||
|
|||
|
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
__________________
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 
|
|
#52
Sat Nov 3, 2012, 10:13 PM
|
|||
|
|||
|
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
|
|
#53
Sun Nov 4, 2012, 06:22 AM
|
|||
|
|||
|
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
|
|
#54
Sun Nov 4, 2012, 12:50 PM
|
|||
|
|||
|
That is great news.I know it's a big relief for you.
__________________
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.
|
|
#55
Mon Nov 5, 2012, 02:29 AM
|
|||
|
|||
|
Great news about your mom, Chirley. Thanks for sharing. Hope you now can settle in to adjusting to your new daycare arrangements.
__________________
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.
|
|
| Thread Tools | Search this Thread |
|
|
Similar Threads
|
||||
| Thread | Thread Starter | Forum | Replies | Last Post |
| One-day Patient and Family Forum in Birmingham, Alabama, June 25, 2016 | Marrowforums | News and Events | 0 | Wed Jun 1, 2016 09:23 PM |
| One-day Patient and Family Forum in Nashville, Tennessee, March 14, 2015 | Marrowforums | News and Events | 0 | Fri Feb 13, 2015 06:15 PM |
| One-day Patient and Family Forum in San Diego, California, January 31, 2015 | Marrowforums | News and Events | 0 | Wed Nov 26, 2014 10:03 PM |
| AA&MDSIF 2008 Patient & Family Conference | Marrowforums | News and Events | 3 | Sat Jul 26, 2008 12:28 AM |
| Registration Opens for AA&MDSIF 2008 Patient & Family Conference | Marrowforums | News and Events | 0 | Tue Apr 29, 2008 02:51 AM |
