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#1
Sun Jul 6, 2014, 07:03 PM
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Feeling alone in this
That's all.
Home from hospital now. How do you push on, once again?
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections. 
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#2
Sun Jul 6, 2014, 07:30 PM
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Julianna,
I think that regardless of the amount of support that you have at any given time, there are moments where you feel completely alone. I know that I have experienced it over the past several years, and especially during and since transplant. I have also found that those around me sometimes feel the same way. The hardest part is to stay engaged, communicate, get help when and as often as needed, including any psycho-social help your facility offers when needed as well. This is a long journey and there will be bumps in the road and lights at the end of the tunnel. One of my favorite quotes is that the night is always darkest before the light of day begins to rise. Knowing that the sun will always rise, the darkness will always subside.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body. Last edited by DanL : Sun Jul 6, 2014 at 07:31 PM. Reason: adding.
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#3
Sun Jul 6, 2014, 08:07 PM
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Sending thoughts and prayers your way Juliana, and for anyone else suffering from GVHD. We can't predict what will happen after a transplant, and it takes lots of courage and a will to live to have one, so I really admire you. Keep posting - we are all here for you.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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#4
Mon Jul 7, 2014, 01:21 AM
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Thanks for the encouragement. Nice to come here to people who understand. Thank you
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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