My Journey with MDS

Day +13 - Its been an eventful week or so!!

27/05/2015 15:43

Apologies for not completing my blog for so long, but it has been an eventful week with various episodes of reasonable  moments and dreadful days!

As predicted, the periods of flat blood counts following conditioning does take it's toll. Firstly the face furniture (feeding tube) decided to remove itself during a moment of sickness which caused a fright for myself and Sally who was with me. Actually this turned out to be a blessing in disguise as it was decided that due to the non appearance of the dreaded mouth ulcers that I didn't need to have it put back in. Have subsequently managed to eat very small amounts of food so for those who know me this will be a surprise!

One of the issues that I have been struggling with is fluid retention due to the volume of medication/treatment that is being administered via my central line. I seem to be heavier than when I was admitted on some days which considering that a biscuit feels like a main meal is disheartening. However ,the solution is always the dreaded diuretic, resulting in Baxter and I doing shuttle runs to the bathroom MANY times during the day and night ! I'm pleased to report that I beat him every time and Baxter has yet to win the race. Just to show how close Baxter and I have become, the other day I was unhooked from him for half and hour and still managed to try and take him with meuntil I realised that we were no longer co-joined !

Over the Bank Holiday weekend I managed to pick up an infection and had spikes in temperature. Pleased to say that today the doctor informed me that my infection markers had dropped so the antibiotics are doing their job.

Still feel exhausted most of the time as Sally can testify as she has spent many hours watching me sleep when visiting. Now waiting for the stem cells to do their " magic " and hopefully will be able to report on progress next time.

Thank you to all our family, friends and work colleagues who have sent lovely wishes and words of encouragement it has meant a great deal to both of us.




Search site

© 2014 All rights reserved.