I haven't posted in ages cause things haven't been great - but Saturday the 1st of february was my rebirthday! And for the past seven weeks I've been doing well, I've put on 1.6kg so I'm finally over 50kg!
I've developed a milk allergy from one of the cords used in my transplant? So somewhere out there is a 7 year old child with a milk allergy! The week before christmas I was hospitalised for the 10th time with septicaemia for a multi drug resistant strain of e.coli. I have another midline after all my veins kept collapsing, I've stopped being sick *was being sick up to ten times a day for five months so Became anorexic and needed an NJ tube fitted* and I'm finally eating and enjoying food! I've even had a glass of wine and on Monday just there was discharged from the dietician!
Still in the wheelchair and needing help showering but doing so much better, I'm able to dress myself and walk small distances now? I can even go out for the day with my daughter! Finally growing some hair properly again! I've been left with PTSD that creeps up on me and can make me feel ill but apart from that, the panic attacks are less frequent since Christmas time. Still have gut issues and still on steroids from the GVHD but after having such severe GVHD that very nearly killed me, the occasional bout of diahorrea is nothing, really.
Chronically low magnesium so that's being topped up weekly IV and I'm getting four weekly IV IG to try and keep me out of hospital. Finally feel like I might be turning a corner, it's been a bloody long time! Apart from the magnesium my blood work is all great just now and I'm feeling good!
I hope everyone is doing well- I've missed the board but was just in a bad place and didnt want to put the fear in anyone heading for transplant!
Hi Kirsty, despite the challenges you have been facing it’s a big happy rebirthday ((hug)) from me.
A post like yours just highlights all challenges, twists and turns that come along with SCT.
I do like that although you are telling us about the many issues you had to deal with, you are also sounding positive and despite the hard times you are keeping your focus on getting through this and moving on xx
Hi Kirsty,
happy rebirhday! You’ve had a really tough time but hopefully you’re over the worst and can start moving on with life now and it sounds like you’re starting to have a more ‘normal’ life now so lot
of hugs and hopefully more wine soon!
judith x
KT’s mum
