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#51
Sat Apr 21, 2012, 03:18 AM
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I am so hoping you can get some rest, Laura. What an ordeal. Unimaginable.
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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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#52
Mon Apr 23, 2012, 12:45 AM
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Plts again tomorrow....so about every 4 days needing platelets.
HGB in 9 range Much more rib pain today.
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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#53
Mon Apr 23, 2012, 01:45 AM
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So sorry, Laura. I really hope you get some relief soon!
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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#54
Sat Apr 28, 2012, 02:53 AM
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Today I was so very, very tired. I basically slept the ENTIRE day except for the drive to the hospital and back and when the nurses needed to wake me up for this or that. Otherwise I was asleep the entire time. I woke up not too long ago.
I forgot to mention yesterday that I also got 40 meq of Potassium iv, which took four hours. I didn't write my labs down today because I was too tired...after the red transfusion yesterday my HGB came up to 10.something. I needed plts today (like clockwork every four days). White count remains good but I am also on Prednisone.... Potassium was still a little low but going to keep an eye on it and just try and take oral (20 meq) three times a day. The frustrating thing is I keep getting a different story in regards to the infection but I think I finally got it all sorted out today. The gram negative infection was in my RED lumen and bloodstream (NOT purple lumen). The original cultures did not grow gram positive so they stopped the vanco, which is so nice because it means no 50 mg of iv Benadryl prior and 2 hours less I need to sit there (twice a day). So I just get the Cefepime twice a day through the red lumen and they push that so unless I need transfusions or whatever, it is a very fast apt. The cultures they redrew yesterday showed the red lumen still growing the gram negative. But so far no growth in the purple or bloodstream. Something always comes up to push other things aside....so the skin stuff has been pushed aside for now.... The main worry is how my counts are not recovering but worse. I think today was the 7th plt transfusion since April 2nd....to tired to really figure it out fully right now. And yesterday was red blood cell transfusion one. I was supposed to see my primary today but as I was leaving station 94 to head there my nose started bleeding so they wanted me to stay for the plts instead. So I will see her in the morning after my station 94 apt.
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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#55
Sat Apr 28, 2012, 02:57 AM
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I took the lazy way out again and copied my caringbridge post below.
I guess I am at a loss to my labs and what it means....they obviously aren't recovering. I see the main BMT at Mayo on Wednesday. For now, it seems station 94 (outpatient BMT) refrains from commenting too much. I want to know what it means....another transplant?....what?....
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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#56
Wed May 2, 2012, 02:04 AM
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Does anyone rememeber the name/author of the book in regards to taking long term prednisone?
Still getting plts every four days.... Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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#57
Wed May 2, 2012, 07:16 AM
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I'm so sorry to hear this, I'm at a loss.
Hopefully someone here will know the details of the study/book...
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding!  I've run 5 marathons now!! (PB 3:30!)
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#58
Wed May 2, 2012, 11:25 AM
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Quote:
I hope you find answers soon!
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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#59
Wed May 2, 2012, 01:19 PM
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Quote:
__________________
Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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