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I had over a year when "weary" didn't really describe how I felt. It was "fatigued". I couldn't walk across the room without stopping to catch my breath. I had ATG treatment 3 years ago this week, followed by cyclosporine. I kept waiting for the magic time when my counts would turn around and that I would feel better. For me it took 8 months, and I was truly tired of being tired and of waiting.
For some of that time, no one would know from looking at me that I was sick. I think that is true of many MDS patients. Of course, as the MDS refused to go away, eventually I looked as sick as I felt.
Even when our counts are rising, our bodies are still battling 24 hours a day to recover, and weariness is part of the battle. Hopefully your dad is allowing himself to submit to being tired and not trying to do everything he once did. If the treatment works, he will one day be able to resume most of his activities. Now if I'm tired, I don't know for sure if it's the disease or the fact that I'm 72! I try to blame it on my age.
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Sue, age 72; Dx 6/2010 MDS Int-2. Revlimid unsuccessful, began Aranesp 10/2010; additionally Dx PNH 2/2011, Soliris added 3/2011. ATG 5/2011, Cyclosporine 5/2011. Nplate 10/2011 to 10/2012 . Exjade began 12/2013 due to high ferritin level, discontinued 3/2014 because of increase in creatinine.
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