In the last few months I have reached some important milestones. As you all know my progress is tortoise pace but the main thing is to keep going in the big scheme of things I'm doing well and I'm still here thanks to my generous donor.
So firstly I have started to have my childhood immunisations again. This is great, it means I will still need to be careful but I will be a bit more protected from certain illnesses and viruses, Ive now had most of the vaccines but still need the MMR vaccine.
Secondly and this is a big one I have decided to try a few hours at work, after being off work for nearly four years I know it will be hard and Im not sure I can physically manage it but I wont know until I try. My plan is to do a couple of hours a week and if it goes well slowly build those hours back up, I know I'm unlikely to manage full time work again with all my health issues but even If I manage to get back to doing a few days a week its that little bit of normality back in my life. Being an artist Painting and photography will always be something I do and I am looking forward to this Autumn when I will have my first exhibition of paintings since before transplant.
Last week was the usual type of week for me full of appointments and also some biopsies following a colposcopy hopefully nothing to worry about but always best to get any changes checked, Ladies keep on top of your smears they are pain free compared to injections and biopsies down there !!!!!
Also I have had an ACTH Stimulation test, this test is to check whether my adrenal glands are working properly, when I was put on steroids for a while they stopped working properly and I've needed to take cortisol tablets ever since. If these tests have gone well I will be able to wean off the cortisol. One less medication hooray. The test itself is painless, I had to miss 3 doses of my cortisol tablets before the test then you go to your day treatment unit at hospital, have a cannula fitted, have bloods, have an injection of adrenocorticotrophic hormone then have 2 or 3 blood tests over a few hours to see how your body reacts. Just enough time for a few cups of tea, read a magazine and chat to the nurses.
After my latest lymphedema appointment not only will I be wearing full length leg compression stockings but arm compression sleeves too. Its a bit like putting on a pair of tights that are 10 times too small for you! I may as well wear a giant tubigrip, ha the height of fashion for summer, but jokes aside the compression stockings keep swelling down and keep my lymphatic system working as well as it can do.
My bloods are still stable but I do still need to travel to London for tests every 6-8 weeks as the donor to my cell ratio is not 100% so they are keeping a close eye on it, but some peoples never does reach 100% and they remain at a stable level longterm.