My Journey with MDS

The waiting game ...........and good luck BF Flyers

13/06/2015 17:50

As indicated last week, transplant did not work and I have undergone a range of tests and had my fifth Bone Marrow Biopsy last Thursday. All of this should come together next week to help consultant and team determine the action plan for next steps. In the meantime I am remaining well and my appetite has returned. 

Seems odd to be less dependent on Baxter these days, but we are in constant touch and I do have a 14hr stint of IV's overnight so he is remaining gainfully employed!!   No slacking allowed. 

Glad that I can now begin to have a few more visitors (of the bug free varierty) As I have indicated I could be here a while, but as always its a means to an end and getting a successful transplant and starting all of the recovery is why I am here. I know my immune system is seriously compromised so Sally and I are taking no chances - even an extended stay with all of its pressures is only a short period really in the scheme of things. 

So I now have an exercise / stretching regime thanks to Physio - it is scary how much you decompensate when doing so very little. So on days I don't need a blood transfusion I am cycling on the exercise bike in my room (just in case you thought I was preparing for Tour de Southampton!!) and later in the day - wearing a face mask I am allowed to walk the corridor within the ward if its quiet. 

We continue to be overwhelmed by messages of support and good wishes from family, friends and colleagues through our journey - it really does mean a lot. 


Good Luck tomorrow (14th June ) to the Bracknell Forest Flyers who are taking part in the Purple Patch 26.2 Mile Challenge - in aid of the MDS UK Patient Support Group - takes place at 2pm - Braywick Sports Ground, Maidenhead. 



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