Appointments and more appointments with chest and skin infections alongside. Its that time of year when theres lots of bugs and viruses going round which for anyone after a stem cell transplant is a nightmare. No matter how careful you are with washing your hands and using antibacterial gel you still pick up viruses.
Apart from struggling with infections my blood results are pretty stable and although my chimerism (donor to my cell ratio) is not sparkling it is steady for now which is great. At my last appointment with my transplant consultants they talked about trying to find a consultant to deal with all my long term problems, I don't think this consultant exists yet just one of the prices you pay for having rare diseases! So the next best thing is having multiple consultants endocrinologist, respiratory specialist, rheumatologist, haematologist, lymphedema specialist, post BMT nurse and the list goes on. This is far from ideal as each specialist is only interested in their specific area rather than looking at things as a whole.
In new rare illnesses I've been diagnosed with Emberger syndrome another label to add to my list, this one is so rare that when the GP typed it into his computer nothing came up so good old DR google gave a short description for my records. It isn't really a new illness to me but a label that groups some of my symptoms. From recent scans they have seen that I have developed some fluid around my heart but nothing too drastic, there is also a cyst in my lungs but if I remember correctly that was there before transplant so should be fine
Soon I will be having all my childhood vaccinations again, as my bloods are quite stable it should be safe to do them. This is great news as it means I will be more protected against certain illnesses such as mumps,measles , etc.
We also need to change my blood thinning medication as the Clexane injections will be worsening my osteopenia. This gets complicated, before my transplant I was on warfarin but it is hard to control and get the levels right and with all the medication I'm on it will be near impossible. That being said there are new blood thinning meds that don't need as much monitoring but as I was years ago diagnosed with antiphosphilipid syndrome/lupus anticoagulant these meds don't work well but we are not sure if that diagnosis was correct so who knows which medication we will try, but I certainly don't want blood clots in my lungs again or internal bleeding!
Photography and art are the things I do when I can even if its just in the garden. its very therapeutic and even when you are feeling fatigued and ill you can still do a little to take your mind off things.