Tuesday, 27 August 2013


I'm back from Ilfracombe, we had such a lovely time.....visiting lots of places, paddling, boat trip, lots of tasty dinners out and cream teas!
Safe to say I was knackered every night after being out during the day but it was worth it and there was no way I was going to let my lungs not let me go out and enjoy myself, no matter how tiring it was! Mum did make sure we had plenty of tea/ice cream/cake breaks so I could get some energy back (always a good excuse for some yummy food!)
I won't go on and on with a day by day synopsis as I'm pretty sure most of you will fall asleep half way through! I just want to go back, such a beautiful place :-) and the sea air does make you feel better, my lungs feel heavier back home - maybe I could get a holiday home by the sea on the NHS ;)
I've got a week left and then I'm back at work again. This summer has gone so fast but I think spending the first week in hospital, the second week still on IVs at home and the third week recovering I feel like I've wasted some of it - but never mind.
I've got an appointment with the neurologist soon about my silly leg pain, all the test results came back ok so I think it's going to be either 'you will have to put up with the agonising pain' or maybe some more tests.
Also, I still need to do my exercise test for the Kalydeco check up as I was too poorly at the beginning of the month to do it.
Let's just hope I can keep myself off IVs and out of hospital for a while! Fingers crossed :-) have a lovely week!

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Friday, 16 August 2013

Tablets that are meant to make you feel better, make you worse!

Last week Dr Ho re-started me up on domperidone in the hope it would stop me feeling so bloated all of the time. It hasn't. In fact, instead of helping its made me feel really sick and has given me awful acid reflux, oh the joys! I wondered why all week I had felt so bad. Then last night it was just so so painful, just felt like I'd swallowed acid. I'd already had my omeprazole and ranitidine which did nothing so in the end the only thing that helped was to drink lots of milk! Today I didn't take any domperidone and so far *fingers crossed* I haven't felt too sick or had bad reflux..hurrah!!

I'm off on holiday tomorrow which'll be lovely, off to Ilfracombe for the week. Very excited, I can't wait :) The only thing is the realisation of how the past two and a half years have affected me - last time we all went on holiday for a week I was 15/16 and in great health. Since then I've had 1 near death experience and a few really poorly patches..I'm not feeling too bad at the moment but still notice how tired I'm getting after a day out or needing my extra nebuliser if I've been doing more walking than usual so it will be interesting to see how I feel on holiday. The good thing is that I always feel better by the sea..good salty air is great for the little lungs!
I've packed everything....I think! There's always something you forget and I'm awful for checking everything a thousand times!

I have fab news too..Katie and Kirstie are doing well after they both received a double lung transplant :) two very strong girls.
Had a lovely tea and yummy cake evening with some of the girls yesterday, was lovely to catch up!
Hope you all have a lovely week and I'll blog when I'm back!

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Sunday, 11 August 2013

Clinic, transplants & a well deserved holiday

My IVs finished Wednesday evening so straight after mum pulled the gripper out I jumped straight in the bath - nothing is nicer than a post IV bath! Tom came with me to clinic on Friday morning..my obs were the same as before, lung function was down a bit though but dr ho said he wasn't too worried about it but to keep an eye on how I feel & if I start to decline to go straight back. He did mention about steroids again if my lung function does deteriorate and I briefly said my concerns..that I was so low when I was last on them, even just 5mg, so he said we can cross that bridge if we come to it. They're so good there, never put your feelings to one side :) so now it's just a case of carrying on as normal and keeping an eye on things. I keep getting patches where I feel crap but it's not all the time luckily.

Two very amazing girls both received a double lung transplant yesterday! Such fabulous news :) Kirstie had a dbl lung tx 2 years ago but recently suffered with chronic rejection and deteriorated very quickly..they had such a tiny window to find lungs and by some miracle and the caring nature of a donor and their family Kirstie managed to get a new pair of lungs! And Katie who is only 14 received her dbl lung tx too yesterday! This is why joining the organ donation register is SO important, to give people another chance at life is just incredible. Please please please go on go the organ donation website and sign up..it takes two minutes.
It always makes you think, you have no idea if and when you'll need a transplant. I could need one next year or 20 years down the line or I could never need one. You just don't know but when you see people as strong as these two girls to through this it makes you feel inspired & brings the cf community together. I try not to think too much about the future, I know how it feels to be that sick when my lung function was 16% and I was just lifeless..somehow I came back from that but it does make me wonder wether if that happened again whether I'd get back from it or if that would be how it's going to stay. You never know what's round the corner, just always be grateful for the ones that love and support you because you never know when you'll need them the most.

I'm still feeling pretty tired from my hospital stay, IVs and then trying to do too much when I came out of hospital but I'm doing what my dr ordered and going on holiday next week. Mum, Dad and I have booked a stunning apartment in Ilfracombe, Devon. Very excited, it'll be lovely to just get away for week :)
Please keep Kirstie and Katie in your thoughts whilst they recover from their transplants :)

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Thursday, 1 August 2013

Why is nothing ever simple?

After I spoke to Dr Higton about not going on steroids due to how low they made me feel they suggested using a steroid inhaler instead as it's absorbed in a different way so you wont have the same side effects. I'm now on Symbicort which seems to be working pretty well! Wednesday afternoon they said I could be discharged from hospital on the provision that I "don't go wild" - they know me too well, usually try to do everything the minute I come out of hospital or am on IVs! The nurse said to pop back at 4pm to have the last IVs of the day as home delivery IVs don't deliver in time for the morning dose. So I popped back and they had to change my gripper (the needle and tube that you put into the port to administer IVs). First flush was ok, then first few mins of IVs were ok but it stopped & then wouldn't flush again. Tried a second and third time; it still wouldn't flush so Sweety said she didn't want to do it again as it was getting really painful and I was pretty stressed. So I came home for a bath, tried to relax as best as I could but had no idea if Paddy had turned or was kinked. Why is nothing ever simple with me?!
I went back this morning, dreading what would happen - Judith said we'd try it one more time and if it didn't work we'd then come up with another plan. She put a gripper in, flushed it fine and plugged in some IVs..they worked fine. HURRAH!
Judith thinks the first gripper went in wonky and therefore some fluid got in to the tissue so it swelled a bit meaning the other grippers couldn't get in to place properly. 

This lot of IVs are making me feel quite sick and completely shattered. I'm having a great sleep at night, sleeping during the day and then still tired. Plus they keep making me want to cry all the time, even when I'm happy! I think anything, even a cute little dog, will make me burst! Plus the panic attacks come back..just horrible.

I'm back to hospital next Friday to have a check up & hopefully stop the IVs. I'm managing to get out and about a bit to get exercise for my lungs, plus I really want to go shopping so tomorrow mum & I are off to Bicester Village to have a look at their lovely outlet shops...at least with mum I can have a break after every shop if I need to without worrying that she's going to get annoyed! :) She came in everyday I was in hospital to sit with me & helps a lot with my IVs when I'm too tired or feeling to ill to do them. Words can say how much I appreciate and love her.

Lets hope for a good drama-free week!