Friday, March 31, 2006

I have been successfully de-ported!

It went fine, a bizarre procedure, slightly uncomfortable and a bit sore now the anaesthetic is wearing off, but yay it's all done.

Lovely surgical team, they used the pink swab stuff on me instead of the yucky brown one so I am now stained a vivid shade of fushia up to my neck (YAY). They were chatting and joking throughout the procedure with me, which made it so much more pleasant.

Anyway v tired, just to off to have a sleep!

Thursday, March 30, 2006

Just a quick update: I have been moved over to the surgical ward as they have decided to whip my infected port out tomorrow. Hurrah. (I think!) Am a little nervous as of course the only downside to not being knocked out with a general anaesthetic is that I will be fully concious of the whole procedure, but it is fairly common to have them removed under local so I am sure it will all be fine and I am just being daft.

The journey over here was quite amusing; my mother has bought me bright pink hello Kitty PJs which I am sporting with pride, and somehow convinced me she would manage to push the wheelchair so we wouldnt need to call a porter. This resulted in probably the most amusing journey of my life, where both she and I appeared drunk, possibly under the influence of various other illegal substances. Anyone watching would have been rather confused. After hitting various doorframes/walls/people within the first 10 metres or so, we resorted to going backwards. Not quite the entrance I hoped for, but an entrance indeed....!

I will post again a port-free person! (nb - for anyone who doesnt know what a port is, go to and click on "Tips and Info" and go to the gadgets and gizmos section to find out more. A nice little bit of science for you!)

Wednesday, March 29, 2006

The doctor did a bit of the old "good news bad news" trick my dad used to do when we were smaller today. Good news, your CRP is down to 250 (woohoo!) bad news, your port definitely is infected (doh!). So they have contacted Mr surgeon (whos name is suspiciously similar to a famous fizzy drink which makes me imagine him dancing along the corridor to the advert tune in my head, not good) to see if it needs to be removed and what he wants to do about that.

Am also some sort of magician, producing not one infection (drum roll).....not two infections.....but three infections from within one small body!!! One in my chest and now two in my blood, apparently!. I was slightly alarmed but the team dont seem concerned, as I am on all the correct drugs, and things seem to be moving in the right direction. I had a gorgeous bubblebath this morning and there is nothing like washing your hair to make you feel more human again when you are stuck in hospital feeling grotty. That and putting on some nice sparkly earrings!

Due to the large variety of stunts my body appears to be playing, they have given me a guestimate of at least 10 more days in here. Which isnt too bad really, seeing as I had my birthday, I partied on down, I got the T-shirt launch done, and I have a nice room in things could be loads worse. And spring has finally sprung so YAY to that!

Tuesday, March 28, 2006

Just as my little lungs had been behaving themselves so well...!

I went from feeling a little bit rough to rather poorly in 0-60 and have ended up back in hospital with a stonking chest infection, which has also provided me with a brand new all-time low lung function result of 16% (gerbil sized) and also a nice bloodstream infection, picked up on thanks to the skyhigh temperatures that I am sporting approximately every 5 hours. And impressively high inflammation markers in my blood too apparently. I reckon it's my own fault, drama queen in my personality, drama queen in my body's behaviour too it seems!

So into the daily routine goes Introvenous antibiotics for the chest infection, intravenous antifungals for the bloodstream infection, paracetamol round the clock to try and bring down the temps, and a whole host of exciting new "helping you to breathe" paraphenalia, such as a mask which has a large pipe connected to it and provides you with humidifed oxygen, making me look and sound a little like Darth Vader, and also an ultrasonic nebuthingie (that is not its technical name so please dont try and look it up) which is an impressive looking and surprisingly silent machine, which emits microspheres of moisture which can then be breathed in to help rehumidify the airways......or something. I almost managed to sound technical there didnt I?!

Am feeling rather upbeat today - I had a good day, have felt better than yesterday, small achievements to be proud of like doing a whole lap of the ward with the physio wearing just nasal specs not the O2 mask I was using when first admitted, and of course as always, my family and friends absolutely rock the most.

Things are moving in the right direction so hopefully I wont be in here too long; I miss my house so much already plus with the microwave here out of action I will starve. At least I have established some internet connection, YAY!

Thursday, March 23, 2006

Yay for birthdays!! I had the BEST time on saturday!

Unfortunately I spent most of the day in bed, due to my lungs deciding that their birthday present was to take the day off and not do any work. I literally couldnt breathe, it was one of those days when simply sitting still feels like you are running a marathon, and so back to bed I went.

However I think they did me a favour, as that ensured that I rested nicely all day and didnt get too overexcited prematurely, and so when it came to the evening, I had lots of energy.

The hall looked amazing, decked with masses of pink streamers and balloons, with fairy lights adorning the walls. There was a live band, and a disco, food and drink, and....a chocolate fountain baby! The photo is of me pulling my "yes I know what I am doing, I am big and 22 years old" face when in fact I was rather scared that I would drop my pink marshmallow and clog up the mechanisms and blow up the whole thing.

This week has been pretty quiet so far, as I had a lot of recovering to do. I have my annual assessment on friday, which involves a full day of tests at the hospital. Deep unadulterated joy...!

Friday, March 17, 2006

It's my last night of being 21 years old.

I feel a little bit strange, due to a combination of factors. First and foremost I suppose, I spent last March trying to get my head round the idea that my 21st might be my last birthday. That coupled with the fact that things have been stupendously busy so far this year has resulted in it feeling like tomorrow shouldnt really be my birthday at all!

That all sounds terribly down when reading that back, and I didnt mean it to be, I am actually thrilled about all of the above (that I am celebrating another birthday and that I have been v v busy) but it just doesnt "feel" like it is my birthday tomorrow. Which is probably a good thing, as when I was little I would get far too over excited the night before my birthday, hardly sleep, then wake up tired and a bit poorly and silly and get sent to bed when I got too pink cheeked and overexcited.

This week has been a bit quieter than last which is good; the photographer from the Sun came on Monday, so that is looking even more likely although still not confirmed. Then I had another interview on Wednesday, and Thursday marked 14 days into the Live Life Then Give Life campaign. Being the well prepared business-type-ladies we are (honest) Emmie and I did a review of the first 2 weeks to check where we are doing well and where we could improve. We have had over 20 local Media hits in 14 days which is fantastic, better than I expected.

I went to CF Trust HQ today to see everyone, and had a lovely time, a good catchup with how things are going, and they treated me to a lovely pub lunch. Even though I know most of the people at the trust really well, this was my first trip to HQ, so next time I am chatting away on the phone to someone I will actually be able to visualise them in the office!

Enough T-shirt talk and contemplation on birthdays; I am off to watch Along Came Polly (I dont think it is particularly a piece of Filmic genius but it sounds lighthearted!) and then off to bed for 1 more big sleep...! YAY!

Sunday, March 12, 2006

My mum's birthday was on Wednesday, and due to her being a shy and retiring wallflower much like myself (!) I had to ensure that enough fuss was made of her, otherwise my life would not have been worth living! Not to mention the fact she is an incredible mum and deserved a great night. We went out to El Torito, which is a great restaurant, and our party of 11 family members had Tapas and lots of laughs. It was really nice to be able to chat to both my sisters properly, and we did an awful lot of laughing, which was great, except I find it really hard to laugh, and so I have this sort of fake laugh which I do whilst trying to surpress my real laugh, or else it sends me into a coughing fit. Some of my favourite memories of hospital (that sentence sounds wrong) are when a group of pwcf are sitting chatting and get the giggles, then one by one dissolve into hacking coughing fits, which is somehow even more amusing....

Anyway I digress; I woke up the next morning just feeling extremely happy, and I am sure that a) laughing is good for you and b) it came from spending some really good quality happy time with my family. I really do have the best family; they are by no means perfect, no one is, but I just have the best time when we are all together, I am such a lucky girl.

The only bad thing was that just as we were about to leave, I found out we might be getting coverage from the Sun for the T-shirts, which is GREAT news but then of course my family were asking about T-shirt updates, and I think mum kind of didnt want to talk about them just for one eve.

I have been to Guilford twice this week (bizarrely) once for a radio interview with Emmie about the campaign, and the second time to watch my ex-flatmate in an inter-university comp for Ballroom and Latin Dancing. The first event went very well, with both of us giggling quite substantially for a serious 20 minute interview. We took part in a "Mr & Mrs" style interview and much to our astonishment managed to get 4/5 questions right! YAY! The second Guilford expodition was also fantastic; Helen is just an amazing dancer, its the first time I have seen her and it was so so good. We were cheering her on, I couldnt tell whether she liked that or not! I love dancing anyway, and of course its even more exciting and spectacuar when someone you know is doing the dancing. Holly drove up with me, which was great as we got to have a good chat and giggle on the way, and even more of a giggle on the way back, as I may or may not have missed the turning off and driven many miles further up the A3 than I needed to. Well done me.

Right rediculously long post ending now. Am off to consume chocolate buscuits.

Friday, March 03, 2006

The Live Life Then Give Life Campaign is here!!

And what an incredibly busy first two days we have had! I am over the moon with how it is all going. I woke up about 10 times in the night on wednesday night, as we were launching on Thursday and I swear my subconcious was just doing it to spite me! I finally got up at 7am, and started checking my emails/the website frantically (goodness knows what for as the "buy a Tshirt wasnt live yet). T-shirts went on sale at about 9am and as they did, we sent out all the press releases.

So far we have had some great coverage, various radio stations and newspapers taking interest and running features. YAY. We have also managed to gain celebrity support, in the form of Richard and Judy, David Gower, and Max Clifford, and we have been sent a pic of Kerry Katona wearing a shirt! YAYAY! And if you havent bought one... !

So am really rather over excited, as it is only day 2!! I am sure I have said this before but I honestly think that people are wonderful; so many people have given up their time and energy to make this happen, without asking anything in return. Gives me faith in the human race anyway!

We had T-shirt launch drinks last night and my friends and family came round to celebrate finally getting to this point, I had such a wonderful evening. I am a rather lucky girl really arent I. Am off to have a lie-down now as I have gotten far too over excited and my lung are screaming for a rest!