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New to the forum but not the world of SCT
Hi everyone,
I've just joined the forum and thought I would say hello.
I'm Emma and I'm 29. I was initially diagnosed with Aplastic anaemia in 2005. After other treatment being ineffective and beginning to develop MDS I had my first SCT in 2011. After a while of remission I relapsed twice with MDS/AML and had my second bone marrow transplant in January 2016. I am just past the day 100 point!
If you are interested to read my full story and blog posts following my process through transplant then please take a look at my blog website: https://emmafightsmds.wordpress.com/about/
I am happy to chat to share my experiences of transplant and whinge about my current sufferings with GVHD!
Hopefully chat soon!
Em
I've just joined the forum and thought I would say hello.
I'm Emma and I'm 29. I was initially diagnosed with Aplastic anaemia in 2005. After other treatment being ineffective and beginning to develop MDS I had my first SCT in 2011. After a while of remission I relapsed twice with MDS/AML and had my second bone marrow transplant in January 2016. I am just past the day 100 point!
If you are interested to read my full story and blog posts following my process through transplant then please take a look at my blog website: https://emmafightsmds.wordpress.com/about/
I am happy to chat to share my experiences of transplant and whinge about my current sufferings with GVHD!
Hopefully chat soon!
Em
Comments
That's a great blog with lots of useful information and having read through it you have certainly had an eventful time! Fingers crossed that your new stem cells finally get on top of your problems and you can carry on a normal life afterwards.
The photographs of your hands with the GvHD are so much like I had that it could be a photo of my own hand with the red rash around the base of the thumb, which is exactly where it was most noticeable on me. I had dry skin all over my body but my hands seemed to suffer most, possibly because they were exposed whilst driving to the full force of the sun through the windscreen. I still avoid the sun now though I'm getting more relaxed about it now that the GvHD appears to have gone.
The thing I pick up most from your blog is that you've managed to maintain a sense of humour throughout, no matter what you've been going through. The pictures of your decorated bald head I found particularly amusing. I'd also forgotten about the DVT stockings until I read your blog - I hated those things which for me were a shade of dark green, and I was always getting told off for not wearing them.
I'm sure you've found that writing a blog is a great way of occupying your time, but it also keeps those around you informed of your progress and your feelings without dealing with them all individually. I noticed there are days when you clearly didn't feel like doing it. I also wrote a blog and for days after the transplant I struggled getting motivated to do anything, let alone update my blog.
Well done and good luck with the rest of your recovery. I'm sure your experience will be helpful to many others here so I hope you'll stick around and contribute where you can. I've signed up to follow your blog and look forward to reading updates.
All the best,
Steve