Introducing Our Selves!
Hello My name is Michelle.
I recently become a Community Champion here at Anthony Nolan.?
I wanted to say 'Hello' to each and every one of you and Introduce myself.
A number of years ago I was diagnosed with B Cell Non Hodgkin Lymphoma but a very quick decline lead to a complex and rare immune disease being found called Haemophagocytic Lymphohistiocytosis. I know a mouthfull right? It is often also refered to as HLH or Histio.
After a fair few rounds of chemotherapies and immune therapies. I was offered a Stem Cell transplant. I had a trialing time leading up to the start of my Stem Cell transplant and caught the common cold putting things on hold much longer than I hoped. But eventually one Christmas season I got the phone call to say I could start the conditioning therapy. I was confused but joyful. I was anxious yet excited. I was aslo experiencing other emotions that I didn't understand. But with the great support of Anthony Nolan just before and my medical team we got through the conditioning therapy and entered into My Day 0. Which felt sureal. I'm sure you can all relate!
My journey through transplant was rocky and I came face to face with many challenges. I'm hoping that with things I experienced and also learned since diagnosis all the way to today I can provide some meaningful conversation and support.
Some off my challenges where during all my treatments I struggled with insomnia, anxiety and had to adapt to many weeks and months in isolation which was tough and then there was the GVHD. I had GVHD from a few days post affecting eyes, liver, gut and skin. But that goodness it has all resovled with just some mild skin GVHD now. Which is managed.
I would love to hear from you, our fellow users here at 'The Patient and Family Forum'
I know we have a few other Community Champions here new and old.
How are we all? And what is your story?