Archive | July, 2012

Good News!

19 Jul

Hi everyone,

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 ๐Ÿ™‚

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 ๐Ÿ™‚

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

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Back Home!

12 Jul

Hello, just a quick update to say I am now back in my adopted home in Walton ๐Ÿ™‚ They let me out of hospital last night and its so good to be home.

I will be going back to clinic next week for a CT scan and check up so hopefully things will have improved a bit by then and we can make more of a plan with the Doctors. So for now, its just rest and take it easy…. I think I can manage that! ๐Ÿ™‚

Thank you for all your lovely comments and prayers, very much appreciated as always.

Love Kerry xxx

Latest update

11 Jul

Yesterday my lung function tests were still down and I now have a sore throat and didn’t feel great yesterday. I slept for hours so hopefully that will help and I am feeling a bit better today.

Just seen the Doctors, after a few days of uncertainty, they have decided I have pneumonia and rejection although biopsy results were non specific, ie; (typically for me) we don’t really know what the problem is.

The treatment plan for now is to double my anti rejection drugs and 6 weeks of high dose steroids. I need to be carefully monitored for the time being, keeping a very close watch on lung function. Hopefully these drugs will do the trick and prevent any damage to my lungs.

Im really disappointed as I was doing so well and I’m a bit worried about the long term effects of this. Plus I find it scary how I can have caught something as bad as pneumonia in my precious new lungs without knowing it. How long have I had it?

Anyway, waiting for final confirmation but the good news is I can leave hospital and get home to Janes, hopefully today ๐Ÿ™‚ I can’t wait. I will be followed up in clinic next week and then can make some decisions as to when I come back to Jersey xxx

Bit of a set-back: First rejection episode :-(

9 Jul

Hello all, hope everyone is well?

Firstly a very important message, today is the start of National Transplant Week!ย 
96% of us would take an organ if we needed one but only 33% of the UK are registered organ donors.ย 
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/nhsย 
Thank you.

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.ย 

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 ๐Ÿ™‚

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