My Journey with MDS

Slight change to the plan........

21/06/2015 15:47

Well its 7 weeks ago this afternoon that I came into hospital and this room. 

Its been an eventful couple of days for me in the hospital, not helped by having a temperature spike in the early hours of Saturday morning, which triggered the usual and speedy responses (as I am now becoming aware). So back on antibiotics, xray and various tests etc to determine infection type and location - thankfully feeling a little better today and back to eating (always a good sign for me !!!) so hopefully all will be ok. 

Saw my consultant on Saturday afternoon, he informed us that having reviewed the donor information, they have decided to call another donor forward, again it is not a local one this time donor is in Taiwan...... obviously something about my genetic make up!! So no news yet on timings except the estimated 2 - 4 week timeframe. It really is incredible how this all works and just shows the value of the international registers, difficult to express how grateful we are and how being on the register can help. 

He had also talked earlier in the week about the possibility of me being allowed home "in quarantine" to give me a break from hospital, coming back for my usual IV medications / blood products to Day Unit, whilst that is fantastic, not quite sure how my current infection plays into that, no doubt more next week. Needless to say both Sally and I want that to be a possibility if it safe to do so. 

Thanks to Ben and James for fathers day cards etc, nice to receive them. Unfortunately James has a cold so is banned from visiting and Ben is at the Austrian grand prix. 

Sally continues to be my rock making sure I have everything I need and the fridge stocked up (albeit no beer in sight!!) with soft drinks. I know she is looking forward to a week off the week after next, and whilst I may still be here she can hopefully get some R+R. Seem to have lost my taste for coffee which is a bit frustrating but I am sure it will come back. 

As always thanks for all messages of support ...... continues to mean a lot to us both. Sally has a a new facebook friend courtesy of someone who also has MDS, a cockapoo called Marley Bear !! 


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