I had a very long day at clinic yesterday which amongst other annoyances didn’t start too well with my transport not turning up but with a bit of organising and Aunty Jane to the rescue, I made it to Harefield and it was worth the wait.
Things are looking up (touch wood), still on high drug doses and need to be very careful. Bloods all fine apart from my white cell count is up which isn’t great but my CRP infection level is less than 1 so hopefully it is just the steroids pushing up the white cell count. I discussed the side effects I’m having from the meds and whilst annoying they are all normal so no need to worry. Lung function was up slightly but not to where it was, although they aren’t overly concerned by the numbers at the moment. I was really happy with my CT scans, the term the Doctor used was “looking fab”. They are really good, much better than in January apparently when I still had inflammation from the operation, I was slightly worried about these results as hadn’t had a scan since just after transplant and this is the main picture of overall what is going on in your lungs… what a relief 🙂
The best news is that I’m allowed back to Jersey at the weekend and they are happy for me to fly now going forward 🙂
I’m due back to clinic in 2 weeks and can enjoy some time at home in Jersey until then, just in time for Phil’s birthday on Monday which is great.
I have spent a lot of time thinking this last week or so, it’s the first time I think I have truly reflected on everything that has happened, how close I got to not being here and how incredibly lucky and grateful I am and how much I want this to continue. The last few weeks have really brought home to me how fragile my body is (even though I don’t feel it) and I need to really look after myself. I’m definitely not ready for this to go wrong! Plus I owe it to my wonderful donor and their family. I have also been thinking about my letter I want to write to the family, although haven’t found the right words yet.
It was actually the assessment clinic I was at yesterday rather than a transplant clinic and it was a sobering reminder of how life used to be and how it still is for lots of people. Transplant week is over for this year but it’s not too late to sign up and become a donor or spread the word. You faithful blog readers will get so sick of listening to me plug organ donation over time but it is something I won’t be apologising for…. not when I have witnessed first hand the difference it can make.
Love Kerry xxx