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Being a guinea pig

Lots of appointments to go to in the coming weeks, haematology, rheumatology, genetics specialists, bone density scans, CT scans and the list goes on. First will be haematology to check that tricky chimerism donor to my old cells ratio. For now it is stable but not at the level it could be. Fluctuations in my blood results have occurred such as low neutrophils which leaves you more prone to getting infections and one of my liver results have been slightly high for some time.

I have new appointment at Guys and St Thomas's hospital where I will be seeing a team of genetics specialists. They have asked me to take part in a study and I will be going to see what tests/scans I need for secondary cancers which I'm more at risk of because of the GATA2.

The research study they are doing is looking into the lymphatic system in relation to GATA 2 mutations. It will consist of the usual examinations and chat then some skin biopsies. One on the top of my foot and one on my forearm then stitches to hold me back together again. Skin biopsies is something I have had before on my face and back so I'm not too worried about those.

Research studies are something most transplant patients are asked if they will take part in at some point. For me so far this has been skin biopsies, bone marrow and blood tests. Without research from patients things wouldn't progress for future patients and from this research and seeing the genetic specialists I may find out more about my lymphedema, lumps and bumps and GATA 2 in general.

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