I am in Great Ormond St Hospital having my monthly dose of iv steroids. The nice man from the school came and sorted out internet access for me,so I won't die of boredom!
We had the meeting with the consultant about my lung transplant and he said we are going to continue with these monthly infusions for 6 months and then we will come up with a new plan,since I feel my breathing is better with the oxygen and steroid infusions.
I know they are avoiding a lung transplant because I am so dependant on all my blood products and the fact that I reacted so badly during my bone marrow transplant. I'm glad they are continuing with the steroids but he told us that we can only do it for six months because steroids come with their own risks.
My consultant is funny. He tries to keep me happy. I think all the doctors and nurses here are the nicest people ever.
Last night during my infusion I had a re-action to the drug and felt very unwell. My chest felt tight and my heart felt like it was going to burst out of my chest,my feet were itchy and felt swollen and the same with my right arm. It was such a horrid sensation.
Once the infusion was stopped and i was given an some anti sickness and anti reaction drug I was okay again. By then it was about 1o'clock in the night.The doctor who came to see me was very nice,but I am not sure when I finally went to sleep.
Tonight they are going to put the infusion up for longer so it goes into my body slower.
I am in quite good spirits today though because my sister and brother are coming and so are my lovely friends Sarah,Zoe and Ashna..
I hope you all have an amazing weekend.
When you feel alone and scared
Think of him next door who cannot be repaired.