My Journey with MDS

Lovely being at home

18/10/2015 16:36

So I have now been at home over a week, and am getting back into swing of it, can't say I miss 2am observations! Having home cooked food and cakes has certainly helped my appetite improve. Just pottering around the house is more exercise that I have had for 5 months, although stairs have been a challenge building up my leg strength, but I am slowly improving.

I attended the twice weekly clinics at the hospital last week which seemed to go ok, even though I found it totally exhausting but I knew that would happen, it was still a shock as to how the fatigue hits you. The test they did a while ago to check on donor levels within my blood indicated at the present time, I am 100% donor, which gave us a boost, although we know the test can change over time, bloods were good too. I'm still showing signs of CMV and Graft vs Host disease (GvHD) and I have been referred to the renal team for observations too as I have sustained kidney damage, which may well be due to medication through treatment. 

Again Sally and I have been touched by the comments we have received this week in terms of good wishes and I would like to give speciaal mention again to all the nurses on Ward C6 at UH Southampton who have done so much to help me get through this and we will go back and say hello in a few weeks time. You know who you are!




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