Hello all, hope everyone is well?
Firstly a very important message, today is the start of National Transplant Week!
96% of us would take an organ if we needed one but only 33% of the UK are registered organ donors.
It’s the only reason I am alive today, one special person’s selfless thought and their lovely family’s agreement.
I have friends desperately waiting to receive their life saving organ.
Please please think about registering online now if you havent already done so at http://www.lltgl.org.uk/nhs
Ok so as some of you will know, I am in Harefield again. Sorry not to update my blog sooner but only just got Internet access on my iPad.
Over a week or so at home my lung function had been dropping and then dropped quite a lot despite getting some extra rest in. So I had to get some tests done in jersey and then Harefield decided they wanted to see me ASAP in clinic. They even let me fly over so I could get there quickly. It was so nice to be able to fly again, I was really brave and went all by myself and then my uncle Jim kindly picked me up from Gatwick, so was a very easy trip really and I wasn’t too nervous.
So I went to clinic on Thursday, thankfully my lovely friend Katie was there with her Mum so I had some company for the long day. My lung function was borderline so given my Jersey location and the travelling they decided to be cautious and admit me for a bronchoscopy and biopsy of my lungs on Friday morning to have a look at what’s going on.
It wasn’t too bad and they gave me a full anaesthetic which I was quite pleased about as they aren’t too nice a procedure to be awake for! I felt pretty groggy when I woke up for a few hours but apart from that, a sore throat and a fat lip from the procedure, it was fine.
The verdict came back as mild rejection and although I am still waiting for microbiology results, there were no signs of any infection which is good. They gave the lungs a good wash out and said they were basically looking quite good. They put me on 3 days of high dose iv steroids (10x my usual daily dose) which I finished last night. Today I’m taking half the dose orally and this will be weaned off by 5mg a day until I reach my usual low dose.
Waiting to see doctors today and more tests to see if any improvement and see if I can go home. They will follow me up in a week or two probably so I expect to stay in the uk until after that.
It’s very odd being back in here but able to do things, I keep forgetting I can go out and get my own drinks etc from the shop and I don’t have to wait to ask for things! Mum was over in the uk for a wedding so stayed on a bit longer and spent Saturday and Sunday with me which was great, we went shopping and had a few pub meals so haven’t been stuck in here on my own all weekend. Aunty Jane and Jim came down for a visit and brought me some supplies from home too 🙂
So all in all, shame to have a bit of a set back but it hasnt been bad at all as far as they go. Rejection episodes are likely throughout my life and I fully expected to have one soon, I have been so lucky to go over 7 months without any problems. It’s all about being proactive and getting treated quickly like I did this time. The shame is I will be suffering from the steroid side effects that I was pleased to be losing, but never mind, small price to pay to look after these lungs! I’m having a small issue with high blood sugar but that’s normal with the high steroid dose, I have made a huge responsible sacrifice, I have swapped to coke zero and sweeteners in my coffee. Pathetic I know, but anyone who has made me a drink in the last few years will know what a big step that is for me!! Also having a few canula issues, my veins have become spolit from being left alone the last few months and refusing to play ball. They can’t seem to get any blood out of me this morning so waiting for the doctor to come and give me another butchering!!
I’ve made a lovely new friend here too, Lisa, who Katie introduced me to so that has been really nice to have someone to chat to.
I also want to say a huge massive congratulations to one of my best friends Jo, becoming engaged to Dauny. What a fab couple and I couldn’t be more delighted for them. Loads of love guys xx
So that’s the story so far, its been a good learning curve and perhaps a timely reminder that I am not as invincable as I seem to think! I will update you as and when I have more news.
Love Kerry xx