My Journey with MDS

Progress albeit slowly

30/11/2015 21:00

Apologies for the delay in updating the blog, I have had a few weeks of feeling less well, due to a combination of infections and fatigue. CMV did it's bit in this and as I set out in the last blog I had baby baxter in addition to oral medication to treat CMV. It was certainly an interesting experience carrying baxter everywhere with me, even sleeping with it!! Unfortunately one of side affects of the medication through baxter is that it can have a detrimental impact on blood counts. True to form this happened with me and after a week or so it was stopped as my counts were plumeting. 

Day 101 coincided with my 8th Bone Marrow Biopsy, results were positive with my marrow being 95% donor and blood 98% donor, so good progress. I am also seeing renal consultant due to kidney damage so more visits to hospital. During the past 3 weeks I guess I have been to hospital appointments / Day Unit 4 days per week. Hopefully that will slow down. 

Had a weekend visit from my sister and partner which was great and really appreciated them taking the time to travel down and as its the first xmas we have known each other and got my first ever "brother"  xmas card !!

I'm still not allowed out to shops or pubs yet and no immediate prospect of this happening, overall I believe I am improving but incredibly slowly, with some frankly dreadful days thrown in, and cannot imagine how I would cope without Sally. 

Finally my renal consultant has decided I need some additional fluid so Saturday and today was a six hour stint, as I need to do this twice a week for a while, baby baxter is back and today I learnt how to take the saline down and flush central line etc. so I will have it loaded at clinic on Mondays and Thursdays. 








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