So you'll probably recognise the new url and the altogether new blog!
Since me and Jamie split and as my situation with transplant becomes more tricky (and the blog was becoming about just me) I thought about starting a new blog. I have so many followers on facebook (34 comments on a status last night!) and so many on here that its just not going to be possible to keep everyone in the loop with goings on so rather than starting a new one I thought I'd use this one.
So those of you that are managing to keep up, here goes.
Yesterday I had an appointment to see the transplant consultant. Last time I saw him I didn't fit criteria and he refused to put me forward for an assessment. This time round problems had been ironed out on both sides, there was no reason why I shouldn't be put forward for an assessment, we all agreed on this, the consultant was pleased I was a good candidate and has passed my case to the transplant co-ordinators and surgeons. I will need to be admitted to the transplant unit for a few days whilst the team check my other organs, mainly liver and kidneys because the post transplant drugs are most harmful to those organs. And run a few other tests to bring things upto date then they will all sit down at a meeting and decide whether or not to offer me a place on their list. I'm not at this point on an active transplant list. The consultant has given the go ahead for the assessment to take place, it looks extremely positive but nothing is certain yet. My london team have been in contact and are 'delighted' with the fact the consultant was happy to put me forward for the assessment. I am now just waiting for the co-ordinators to call me onto the transplant unit to complete the final tests as I said that will be within the next 2 weeks.
On the subject of my London team, a recent summary has revealed they understand what is happening with my disease, what is going on but not really why and I don't have an official diagnosis. I have a lung disease so rare it doesn't even have a name. It is similar to several conditions but doesn't fit into one label. As the blog title says, anything but ordinary!
The assessment will hopefully take place soon, I will be taking a laptop into hospital with me so I'll keep this blog upto date daily.
Sending some smiles!
3 weeks ago