Wednesday, November 25, 2009

OK so I actually do have a good excuse for not writing this time.

I've been in hospital. It feels a bit weird to write that, and it was even weirder being an inpatient again. I mentioned bits and bobs about not feeling right, naughty left lungbehaviour and paranoia but I will start from the beginning....

Just over a month ago, Dr C noticed a slight shadow on my Xray. I didn't think much of it but he said I had to come back a month later to have it re Xrayed. The week I was due to return, I started coughing more, feeling a slight crackling sensation in my left lung, and generally not feeling "right". I tried to vocalise this to the SHO as best I could ("something isn't right" isn't the most clear description really). I had no obvious symptoms; my lung function was steady and my X ray actually seemed clearer than the last time so whether it was to humour me or not I don't know, but she decided put me on Oral antibiotics and sent me away again.

I followed the course like a good girl but was just feeling worse and worse and then last Monday decided to concede defeat and booked another appointment for the Thursday of that week. I was still torn between thinking I was paranoid and knowing deep down something wasn't right. On arrival, I did my lung function which showed a drop of over 30% (down from my normal 80 odd percent to 50%). It was a bit of a shock to see it as it just felt so sudden; even back in my CF years I tended to have gradual declines rather than large plummets.

I was pretty scared if I'm honest and not overly surprised that they said they'd be admitting me that day. Since orals hadn't worked I was told we'd start IVs that evening as they were pretty sure I had a chest infection. It was so bizarrel being in hospital, back on IVs....drips and cannulas, hospital bed and hospital food, blood tests and wristbands....all these things used to be a regular part of my monthly activities but I haven't been back in hospital for treatment since my transplant. I have decided that having a transplant definitely makes you more of a wuss when you get poorly. I tried to keep fairly good humoured about it really, as things could be a hell of a lot worse. I also experienced a good strong dose of guilt throughout my stay; what the hell did I have to feel sorry for myself about? When there are people like Jess, like Tor, who are fighting hard every day still the other side of transplant?

The plan was that if my lung function didn't improve in any way shape or form by Monday, I'd be having a CT scan and a bronchoscopy - where they put a camera into the lungs and take some tissue samples for biopsy (to look for rejection). The dreaded 'R' is always a bit scary to hear so I focused on the "it's definitely an infection" bit. Which luckily for me, it seems to be; my lung function on Monday had gone up significantly so the IVs are working, and I'm thrilled to be back at home once more to finish the course.

I am feeling a little rough and washed out from the IVs, but as I say, I really do feel bad about whinging because I definitely know things can be a lot worse. And IVs used to be so routine for me, as did hospital admissions I suppose....I'm just so used to being well now, it came as quite a shock.

I shall try and be good and take things a bit easier till I finish IVs. I shall also try and stay away from further infections and out of trouble. Can't promise though...

Sunday, November 08, 2009

The past week has flown by (as has the weekend, apparently). It's lovely being back at school; the fact I love seeing the kids so much when I get back reminds me I am in the right job.

Health-wise, I'm still not quite happy about naughty lung behaviour, however am beginning to wonder if I'm just paranoid. Lung func is ok, X-ray was's just a feeling (as well as the gurgly cough which is still there). It feels wrong to complain about it as it's really nothing compared to what poorly folk waiting for transplant go through on a daily basis. I think it's just that post transplant, I am more anxious about the smallest twinge or change. I'm sure it's fine (clearly talking to self here rather than anyone else...)

Things are moving steadily along LLTGL wise now the manic-ness (it's a word) of Save Jess-tival is over. Jess had to have her end of life talk last week. It's something that the team have to do when you get to the end stages of CF as whilst there is definitely still hope of a transplant, it is only fair to talk through the other possibility. I remember mine so well; mine was actually done after my massive pneumo that nearly killed me. It was essentially a talk to enable me to plan what I wanted to happen if we reached the end. It was a hideous thing to have to go through but I take my hat off to the team member who sat and patiently talked to me and listened to me for what felt like hours, as I asked them endless questions and went over the same concerns again and again. They were so patient and so helpful, and I actually felt a lot better after that; I felt that even if the end came, I would be able to retain a small amount of control. My heart aches for Jess having to go through these discussions and plans. It's so very difficult to face and it makes everything seem a lot more real.

Please keep helping LLTGL spread the word; we're always looking for volunteers and fundraisers so get in touch if you could help! A bit deep on a Sunday I know, but for some reason I've been thinking a lot about back then recently and needed to get it off my chest. (I've always loved how wonderfully suitable that phrase is for CFers).

Keep on shouting about it folks; knowing people are behind you every step of the way is hugely helpful when you're fighting for every breath, and Jess, we really all are.

Monday, November 02, 2009

It has been the longest blogging break in the history of mankind.

OK well not quite that drastic, but it's been pretty lengthy, even by my standards. I am, however, still here and fine. Woo!

Quick summary of life over the last few weeks methinks:

Firstly and clearly most importantly, Save Jess-tival was awesome. It was a huge success, thanks to the hard work of Sarah Milne, the LLTGL Trustees, Oli and various other fantastic helpers who worked their socks off before and on the day to ensure it all came together. The LLTGL blog will be updated soon with pics and details of the night so watch this space!

It was then the last week of half term, which was incredibly hectic with various performances in all schools, but all went well (thank goodness). Towards the end of the week, I started feeling a bit groggy and my left lung decided to start playing up. I have no idea why only the left one chose to misbehave, it may well be attention seeking antics however I will not be buckling and shall merely be referring to the naughty step (also known as Harefield) for any further bad behaviour. There's just generally a bit of chestiness and wheeziness going on, and being so used to being so well, it was quite frightening. Luckily on Monday I went to Harefield and came away with some antibiotics which are predominantly to cover all bases, since tests (X ray, lung func etc) were actually pretty good.

On Tuesday I went up to London for a photoshoot for Company Magazine. It was great fun as it was the first shoot I've been on where all your hair and make up are done for you and a vast selection of clothes are presented to you to wear for the occasion. The article will either be out in the January or February edition; I'll keep you posted.

Wednesday saw the pre-launch of the new NHSBT campaign. It was officially launched today; take a look at their website to see the vastly different and much more hard-hitting angle they are taking. I would love to hear what you think so please do leave your opinions in the comments section. I attended the launch and was asked to speak about my experiences to the assembled guests. It was a very interesting afternoon and I felt very honoured to have been asked to speak.

Then A and I went up to Derbyshire for a few days, to have a bit of a (much needed) break and to visit my wonderful Grandad. It was a really lovely few days, Derbyshire is one of the most beautiful areas of the country.

I was going to write something about "where has half term gone?" but I think I've answered my own question in the above. Am now off to do some LLTGL work to follow up this new campaign. I really really hope it has the desired affect...we know that softly softly hasn't worked, will this be the angle that jogs people into acting and signing the Organ Donor Register?