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SCT my journey so far

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Hello everyone,

Well what a journey so far and it cotinues. I had my SCT on in August and was discharged about 10 weeks after this after an up and down few months. I have been readmitted about 5 times now due to my temperature 'spiking' at 38 degrees. The 2nd time I went back they discovered I had some bacteria in my Hickman line so that was removed. I have had 'spikes' since hence the further admissions.

They have done all sorts of tests everytime I have been back but nothing is coming back to confirm what it could be triggering the temperatures.

I just wanted to ask the question whether anyone has experienced the same or similar experience as understandably it's getting very frustrating and disheartening being in hospital when all I want to do is to be at home recovering. I did understand that there was a high chance of me returning to hospital but I don't know what will happen next? Thanks for reading this. I reached my 100 days so I was happy with reaching that and so far I my CML is non detectable.

 

Thanks

Yep!  Been there.  Done that.    I remember saying I felt a bit like a kid having been given an ice cream to then have it snatched away.   Just when I thought I was on the "Up" there'd come a huge "BUMP".

It sounds trite but try to take each day as it comes.   I tried to just stay in the here and now and to flatten out those emotional roller coaster Highs and Lows.  So not get too excited when things were good and likewise not too down and despondent when it was bad.   I grew to learn with the experience of time that today is likely to be different from tomorrow.

All the best and take good care of yourself.

Well done for reaching the 100 day milestone. As for temp spikes- this happens and they really need to keep you monitored just in case! I know it must be frustrating ( I was lucky and didn't suffer re-hospitalisations) but I agree that you need to take one day at a time and keep yourself motivated with the knowledge that you will recover from all this. You are only just 4 months into the journey of getting your new immune system to recognise that it belongs to you! This can take some time. Keep those positive thoughts to the fore and in no time you will be at 6 months post SCT. It may not seem like it now but your life will get back on track! 

Best wishes,

Sandy