A few things...

1. I got the results of my exams the other night. They weren't to be released until Tuesday morning, but me being me, stumbled upon some glitch in the system it would seem, and got them late Monday night. For some weird reason, nobody else in my class could see theirs until later on. Freaky. Anyway, I managed to surprise myself with how well I did so it's on into second year I go!

2. Work is.....work. I'm still making the early mornings and counting the days down to my trip to France with my Mom next week. It's actually the European Transplant Games I'm going to, but unfortunately I can't remember the last time I was in the pool. And I can't even remember what sports I'm doing, but I'm pretty sure it's just swimming. All I need is the holiday to be honest.

2.5 I'm debating whether to finish altogether in August and go travelling for like 10 days. My mom thinks it's a good idea but I hate telling people I'm quitting. But at the same time, I don't think I'd forgive myself for giving up this first opportunity (as a healthy person) to go travelling with friends. And being left out and forgotten about (not that I'm saying anyone ever forgets about me) I've had nightmares about this sort of thing...

3. I've got an appointment with my old hospital next week to see the CF team. I actually don't like that hospital very much as I don't have good memories of it, and spent a lot of time there just wishing to be better and home. But I really love the team there and it'll be good to touch base with them about my CF (which I still have everywhere except my lungs). I'm having sore tummy again this week and sometimes it's just.... sore, so a miracle cure on that front will be welcomed. I also need to start taking my breakfast insulin again to get my HbA1c down before they take blood. Don't ask me why but I think hiding my whole health side issues in work (yes, I actually have managed three weeks hiding all the injections and tablets I take) makes me forget my injection because I take my breakfast one AFTER breakfast, around the time I reach work.

3.5 Speaking of hiding health issues, I haven't done this since school and have forgotten what hard work it is!! And dropping an insulin needle precariously close to your supervisor's chair and having to fetch it without her (a)noticing what you're doing or (b) noticing what you've picked it up after you've picked it up and getting nosey, (c) finding it first and saying 'oh gosh what's this?', (d) all of the above, can cause someone to have heart attack!!!

4. I need to get my side fringe cut soon. When I had my hair done recently I slowly realised (as in it took weeks for me to grasp it) he forgot the fringe. So I've got this stupid....thingy going on at the front. While browsing Boots yesterday I saw some blonde hair dye, which I was way too tempted to buy. But then I reminded myself how much I spent on my current brown colour, so I'll leave it a while yet.

5. I watched the Dakota Fanning version of Charlotte's Web earlier. It was soooo sad. Some bits are bit like the film Gordy (which was like a cheap remake of Babe which we have on video) but overall it's brilliant. I cried at some parts too.

6. I didn't watch Dreamgirls tonight but the sister will be watching it tomorrow so I'll catch it then, it's also very good.

7. Seven is a lucky number.

Random

I went to the pub last night and saw a person with CF, on oxygen, tables away from me. In hindsight, I don't know why I wasn't totally freaked out thinking 'OMG, infection control, I don't know what bugs HE has, I hope he doesn't cough' as I'm a little bit paranoid sometimes. And not much of a 'cf' mixer at the best of times. But I wasn't.

I walked past him and I heard that familiar voice, where the end of the sentences are really forced out like the person is winded or something. Interestingly, what he said when I walked by was 'I always wear shorts in the hospital'.

Random.

Clinic-y Winic-y *wince* part 2 !!!

At 2.15pm I went into the xray room and lay on a bed and everyone looked at my Second Belly Button. The doctor kept asking me questions but then kept cutting me off whenever I answered with a 'ok, ok, yeah, yeah, that's fine'. But he wasn't listening to my ANSWERS! So the questions got repeated again like 3 minutes later. Things like:

"Did they give you stitches when they removed this tube?"
"No. But I had it put in when I was-"
"-'ok, ok, yeah, yeah, that's fine"

3 minutes later

"So did you just have this put in for your transplant?"
"No, I had it put in when I was like 5 for night-"
"-'ok, ok, yeah, yeah, that's fine"

3 more minutes later

"So did you just use it when you were sick yeah?"
"No, I i had it put in when I was 5 for night feeding and when-"
""-'ok, ok, yeah, yeah, that's fine"

And so it went on. Bah. So I had layers upon layers of sheets put over me each with a little square hole cut out so they could still see Second Belly Button.

The procedure was to put a little catheter (kind of like a piece of tubing) into the hole and put dye in and watch on the screen and see where the dye travels to. The pain of the catheter was honestly, horrible. It wasn't a sting, it wasn't an ache, it was just dreadfully uncomfortable. I think only people who have/had tubes know what it's like, but I found it just horrible. I *didn't* cry though (!!!) but very dramatically shouted "Ow, ow, owwwwwww, owww, oh I HATE this feeling, oh it's awful, oh, ow, ow". I think I might have scared the doctor though, which quite frankly I didn't really mind doing. Maybe he's not a fan of drama?

Then the dye went in and we watched the screen and took photos. I didn't take the photos obviously, but the machine did. Honestly, I couldn't really see what was going on. I think I could see my stomach though, and obviously the dye. He had me roll from left to right and then it was over. It took 15minutes at most. He said there was a small something, something, something but he doesn't know what will be done about it and he didn't want to "cloud my thoughts with his ideas" (a bit fancy for someone who doesn't like drama!) so my clinic will tell me. Basically I take that to mean there's something but it's not serious and they mightn't treat it I guess.

So little Mickey continues to perform his party piece uninvited.

Then they gave me a chicken sandwich and water to apologise. Honestly, I'd have preferred my €10 parking paid for, but never mind. I then found out I lost my parking ticket anyway but Frank (the car park man who needs a name) just calculated the times and charged me.

Then I came home, napped soundly, EILEEN woke me, barged into my house with Noon and Mermaid (names obviously slightly changed there because I feel like it), sat, kidnapped me, we went and had food, then we dropped Mermaid back to her apartment, where I accidentally set off an alarm when leaving... and ran. I hope the alarm didn't cause too much hassle. Ooops. And while wanting to cry, I just laughed. In a very evil manner.....

The REAL Clinic-y Winic-y *wince*- part 1 !!!

This morning I was very good and got up nice and early and aimed to be in the hospital by about 9.30am. I had to have bloods taken as they couldn't get blood on Wednesday, do lung function tests and then have my Second Belly Button looked at via fistulagram (thing where they inject dye to see if there's some sort of permanent opening somewhere) which was at 11am. All in all, a simple plan which would see me out by lunch.

I drove, traffic was light and I ticked my first goal off of 'be on time' with glee.

Then I went to the blood testing department. There was a queue, so naturally I went up to the top, explained that I had been here on Wednesday and was instructed to come back today and I'd be fast passed up to the front. Or that's how I naively understood it to be. Then the secretary snapped at me and said "Yeah well luv, y'er still gonna have ta queue loike, ya can't be skippin' everyone else yano". Cow. And that made me nearly cry because I was feeling emotional for some reason.

*** I think that if the clinic cannot provide a blood taking service (which fortunately is rare, I'm told-unfortunately for me, I'm the rare one!) then one immuno-suppresseeee shouldn't have to wait in a public room where people with Goodness knows what are all waiting. As far as I understand it, the transplant clinic nurses do try their hardest to get the blood taking department to ensure transplant patients are fast passed, but unless they are dragged down (away from their work) each and every time to explain this it doesn't happen. The blood taking place should have a sign up in their systems or something, or even a sign around me which says 'SKIP ME UP'....or something. It's not that difficult, and I don't believe it's me being "Queen Bee", I think it's a reasonable request. *COMMUNICATION* ***

So blah, got the bloods done first time which was fantastic! (Tick number two) And then I went to lung function lab and my lungs are breathing 98%!!!!!!!!!! Whooop! So all's great!!! THEN I saw the dietitian about my poor sore tummy and it seems there may be problems along the lines of something deep inside is getting blocked and sending my system out of whack. (A type of DIOS for any medical peoples) I've never had this before so my understanding is a bit vague at best so don't take my word there.

And then I arrived in radiology for my fistulagram at the ripe time of 11am. Where I waited. And waited. And waited. Eventually I asked if I was sitting in the right area- I was. And at 12.30 I asked a nurse if there was a delay or what time I could expect to be seen at because my appointment was for 11am. "Yeah well they're only a guideline time, they're only a guideline" she said. I told her that yes, I understood that (d'uh) but it was now 12.30pm! I mean were they a guideline time or a guideline day?! After she snapped at me, I wanted to cry again. Badly. Because I'm an emotional ninken-poop today.

After that got around that I was WAITING, people came and talked to me and said it could be another 40minutes. (Again, with the wanting to cry) So I went off and bought a silly book, credit and came back. As I began reading my book, the nurse and radiographer took pity on me and came and sat and talked to me- While. I. was. reading. my. book. that. I. had. just. bought. because. I. was. waiting!!! So the €10 book went into the bag and I politely engaged them in chat. They were looking for the doctor to perform the test and were actually really nice. I think they felt bad for me really. The corridors become achingly quiet as it became clear I was the last one left. The staff were all leaving to go on their lunch, which is where the doctor went too. The nurse and radiographer stayed with me and talked and finally at 2pm word came that I would be seen soon.

And the next bit added to that bit is soooo long, I'll post it tomorrow...

But basically my final rant: We pay for our health service, both in our taxes, and some of us privately. It is a health SERVICE. So why do they always have the attitude that they are doing us a favour? Eh nope, we are customers and I really feel people should start treating us like that. Even on the most basic level of encountering patients and not snapping- especially if we are emotional ones!!!

If I turned up to a restaurant for 7pm and didn't get served until 1opm, would I go back? Eh no. Would I stay? Eh no. Forced to stay would I pay? If I could get out of it, eh no. But sadly there is only ONE health service that so many of us have no option but to use. So stop treating us like crap scraped off the bottom of your shoe. You are providing us a service not doing us a favour.

Can you tell my emotional state has turned to fury upon reflection?? And it's great to have a Dad who teaches you to stand up when things are not right.

Clinic-y Winic-y

This morning I slept in. There's a surprise. I was due in clinic at about 9.30ish but woke up at 9.40ish. I impressed myself at the speed at which I showered and dried my hair and SPEDDDDDDDDDDDDDDD down the road (in my car, to the bus stop) though!! Because of Dr Patrick Hillary's funeral in town, I decided to get the 46a because of all the "traffic" on the roads.

It seemed everybody copied that idea, but nonetheless I took the bus. The last time I took the 46a, the bus driver told me to get off as quite frankly, he wasn't bothered finishing the route - I am the last passenger after all.

Today, they finished it even earlier! (At the top of O'Connell st for anyone who's interested) It was reaaaaaaalll late by this stage but nice and sunny so I walked.

I went straight to the blood taking department where even I flummoxed the experts today. Three needles later and not one drop of blood means I return on Friday (I've got other business there anyway). The lady used a technique I've never seen before: Tongue sticking out, she held the needle like a jouster holds his pointy thing in a duel and took aim and fire. With limited success.

I then went back and because of my tardiness lung function lab was shut. So I'll do that on Friday as well. I told them all about my poor tummy etc, etc. Then I said I didn't want to see the doctor in charge of clinic today as there's nothing important I want to discuss and while with some doctors I don't mind going through the whole routine of "Yes, I'm fine. Yes, nice weather", others I'd rather just avoid. I do need to point out the doctor (who's name sounds a bit like a friendly ghost) who usually is there I adore. But he wasn't in.

So I got the bus, got back to my car and drove home. Then I went and got MacDonalds and went to college. We have a hippy who teaches us on Wednesdays so I was able to bring it all to class. Apparently MacDonalds has a smell though?? I've never noticed...

So in a nutshell, I have to actually get there on time on Friday! Grrrrrr

Etterly Betterly

That title is nonsense too. Bah.

Today I decided to skip my morning lectures again. I had a nice lunch and went in for my afternoon Statistics lecture which is a bit like getting two hours of study done and I was awake and fed enough to pay attention.

My tummy feels better than yesterday. I've cut out fattening my food up a bit, which means no butter which honestly makes me want to cry. I love nothing better than BUTTER!! But alas I can wait.

Unfortunately the crankniess of being sick, while subsiding quite a bit still sees me being a bit childish today. This afternoon for example, it was roasting hot. Driving home was very balmy and nice but it made Delilah (the car) go stuffy and then the window open made her too breezy. I'm never satisifed. Anyway, the road where I live is often used as a rat-run and it drives me bananas!! So a nice big car was behind me, with a nice preemed suit driving it rather impatiently - On my tail like nobody's business. So basically I dropped my speed back until I registered 15mph. And he continued to sit on my tail the whole time!! So then I stopped and let other cars come past us where the road narrows very, very slightly. And then I continued, nice and slowly to my house. And then I stuck on my indicator, and very carefully and slowly turned up my driveway. At which point he zoomed off on.

I always get sooooo impatient being stuck behing slooooooowww drivers so I hope that he felt the same. But I didn't feel better about myself actually. Poor fella, my antics weren't evenr worth it.

Oh well, tomorrow I'll be taking the very spooky 46a to the hospital for a review. I would drive but it's Patrick Hilary's (former president from the seventies(?)) funeral in the pro catherdral and with some roads being closed I'll only get lost. The users of the roads should count themselves very, very lucky!!

But then again, patience is a virtue!*










*I don't know what that actually means but I do know it's something witty and clever and I hear it a lot...

Bumdiddily

I couldn't think of a title and so to be childish I wrote that. It makes me smile because to the best of my knowledge it's not a word, hardee, har, har. Yes, I'm going to get a life soon. Or some fresh air...

I still have a sore tummy at the moment and as I mentioned before this sort of issue rarely causes me problems (thankfully!) but when it does even an orchestra of violins can't make me feel better. Winding other people up, annoying other people, acting like a bratty child and pushing other peoples' buttons seems to help some what. Thank God I've got dimples or I wouldn't easily be forgiven!

Basically:

Diabetics (as in REAL diabetics, not me) don't have insulin so they can't take sugar without help. My body can't digest fat at all. And as fat is in everything (that I eat anyway) I need to take medication in the form of tablets to correct this problem, similar to the way diabetics take insulin or tablets when they eat. It's all about the balance. And for a long, long time the 'balance' has always been pretty good for me.

Until last week. And I felt incredibly ill. And snappy, oh gosh, like a CRAB! I suspected that bad heartburn/reflux was making me burn the tablets before they could work, and on my Dad's birthday (Friday; By the way Happy Birthday!) I looked pregnant it was that bad. So I had reflux and looked pregnant and I didn't even get a baby at the end of it all. So I was busy lashing back anti-acids (?) and the old Omeprazoles (things that make you produce LESS acid) and I felt better.

And then on Saturday I improved. Greatly. I didn't feel sore or sick. Until Sunday and we're back to square one. So if I tell you I have a 'sore tummy' that's what I mean.

But last night, at like 2am I went to bed with my hot water bottle and I turned on the TV and the film "Same Time, Next Year" came on. I saw it when I was in New York a few years ago and I NEVER watch films that I haven't seen before (work that one out) but this time I did and it was really nice to watch it again. Kind of like when you're homesick and something reminds you of home and you feel better, except this reminded me of a holiday. I guess I think I need a holiday. And the crazy thing was it's made in the seventies and we all know nothing good was made back then. Except for The Sting, Carrie, Grease, Sesame Street and The Brady Bunch (but not the movie).

Leaking!

Well despite my 'ok' scan yesterday which showed everything was fine yet left the question open as to what was causing my occasional 'leaks', I leaked again today with some blood too. Sorry to be graphic.

This all stems from the fact that I was tube fed for 17 years, 15 of those were directly into my tummy. Since I no longer require such feeding, the plug was pulled out leaving a nice little hole where it was. It actually looks not too bad at all, and looks more like a belly button than my belly button. When it's not reminding me what I ate for lunch. Sorry to be graphic!

And today I became the Chairmanperson of our Skiing Society in college. There was no vote and I didn't even put myself forward, in fact I didn't even know the position needed filling. The treasurer just told me that I was it for next year. I told her I'd actually prefer to be the treasurer as I'd get all the moneeyyysssssss be a good responsible figure for our treasury!!! But she shot that idea down. I wonder did she see the €€€ signs in my eyes?

Anyway I can't ski that well but I can chair meetings so whoop. I think next year is probably the year to admit to the fact that I'm a diabetic and have had a lung transplant to the society. I chickened out this year because I was afraid it might result in me needing special insurance, having to fill out forms, admit to things and yawn, yawn.

So this year, with me in charge I can do what I like! I'll just come clean to me and nobody needs to know! Changes need to happen though, starting with a name change I think....something along the lines of 'Rosie's Club'....yeah...and upping of fees...yeah....whoooo!

Hum-diddly

My scan was fine, more needed to figure out the problem, but anything majorly wrong was at least ruled out. So the party piece continues for the moment.

My scan was scheduled for 2pm and I didn't have until 2.15pm. Fifteen minutes late isn't bad in all fairness but why should I wait?? Anyways I did.

The radiographer asked me why I carried around a sharps box (bright yellow container of used needles)with me all the time. I was actually carrying it around with me so I could drop it into the clinic for disposal. Who just carries around a box full of needles with them??? I was going to say so that I could shake it in peoples' faces to get attention and spray the needles at them if needs be. But I didn't.

Hindsight is a wonderful thing.

My Cold is Gone

And now the title has devoid (right word?) me of a blog entry! D'oh.

I have my scan tomorrow. It doesn't say I have to fast but I think I would have to. But they didn't say either way so, humdiddly.

Interestingly, on my trip through being ever so nosey blogsville I read one (CF related) from a parent's perspective. I'm (obviously) not a parent so I can only pontificate from my own experience, but I was slightly taken aback about the material treatment given to the child with CF. Sadly I fear that treating (figuratively and literally) a child simply because they have a condition such as CF simply does not prepare them for the real world, and can sometimes mould them into a spoilt person.

When I was younger I would regularly get chest infections requiring a couple of weeks spent in hospital. Up until I was nine, this would often be a torturous experience (which I honestly feel created my phobia of cannulas) as veins were poked daily, much to my "WHY ARE YOU HURTING ME???-ness". Since CF is a genetic condition, it means I inherited the bad genes from my parents. I have never blamed them for that as it wasn't like they were having a bad day and decided 'oh here, have some CF'.

I can't actually remember being given gifts from my parents aside from hugs, toiletries or new pyjamas because of this. Most days we'd walk to the hospital shop and get a lolly or a packet of Frosties. Oh except one time I BEGGED them to get me a beanie babies cat when I was in hospital, but that was it. And I clearly remember my Mum saying that was a once off!! But why should they?

Fair enough nobody else in my class in school would have had to deal with all that, but we all have stuff to deal with. Does the child who is, shall we say 'one sandwich short of a picnic' get treats from their parents because let's face it, they're never going to be able to run a multi-million euro company? Or how about the child who's less than 5"5 who won't ever be allowed to be an air hostess (thanks Mum and Dad by the way!!)? Do they get treated specially?

Maybe it's guilt, I'm not sure. And how one decides to raise their childer is completely and entirely up to them, but I think that being treated with expensive material items isn't necessary. It's just re-enforcing some sort of 'not-right' behaviour.

I'll edit this post when I figure out what I'm trying to say.

PS: Oh and hello and big waves to Alice!!!!

PPS: Doubtful, but if the person whose blog I am referring to (well who sparked this post) happens to be reading this, please don't get offended or huffy. I am merely writing MY opinion on MY blog after reading yours!

PPPS: B.A.S. & D. it's not you! :P

Wish Me Luck!

I start school tomorrow - ski school that is!! (I know BF will appreciate the 'ugh'ness of that 'joke') I'm getting up in 2 and a half hours to get ready. We begin our trip up north and flying out from there.

Five years ago, I went up to learn how to ski with my school as some of them were going to Boston on their ski trip. I wasn't going but wanted to try it anyway. I missed my first lesson as I was sick/had clinic and my PE teacher came to me and said I wouldn't be allowed to continue unless I made up that lesson on my own time before returning for the second class. That same PE teacher always had this thing about me and my CF and never seemed to 'get' it, I always seemed to be 'faking' to her. Terribly unreasonable that one. I could go on but maybe another time.

So needless to say I didn't bother going up for a lesson by myself, on my own time and decided to just wing it. Anyway we ended up in the same class the second week and that instructor was incredibly understanding and didn't even question WHY I was absent. She thought I took to it well (better than my PE teacher who had her eyes constantly on me and who had zero coordination, so ha) and I progressed well. Although I wasn't going to Boston, I was motivated to try skiing again some time.


* * *

Two years ago, I approached my physiotherapist about the possibility of going skiing and she said because of the altitude, I could only go so high and I'd obviously need to use oxygen tanks all the time, and I'd need to be 100% fit of course as well. Now being able to plan a trip in advance and knowing I would be 100%, when my lungs didn't function and I'd get an infection every 10days or so meant that the odds of that happening were.... about as good as my lung function (circa 22-30%).

Ever the optimist I questioned her about the 'ifs' and 'ok, but assumings' and she said it could be possible. My hope raised at that and at the end of the conversation I said to her 'OK, now I won't be hurt, but honestly, in your opinion do you think it's possible...I want the truth.'.

Her head turned and she made about 10 facial gestures in a second concluding in a weak, apologetic smile and replied "no".

She was right of course.

But that's all in the past, as tomorrow I'm getting to finally ski. Considering in the past I've been known to break my arm, have the cast removed and on the same day break the other arm, a bit of luck may be needed!!! Toodle Pip! x

Pseudemonas

Heavy.

Not exactly what I wanted to hear at all. It's a wretched bug to grow before transplant and it's not much more pleasent afterwards when you stir it with a low immune system.

Still, there's no difference between today and yesterday except that I have this knowledge. And I think that's probably the healthiest (pardon the pun) way to look at it as worrying won't change the weather.

I've taken Ciproxin (smarties), Augmentin Duo and Zitromax since Christmas so I think that maybe a different route, approach and tactic may be required. Read through the lines what you will. Apply literal meanings where you see fit. I'll keep y'all updated. Remember, never and dont't worry until I tell you to.


What is Pseudemonas???

Dr Wiki says: P. aeruginosa is an opportunistic human pathogen, most commonly affecting immunocompromised patients (that's me), such as those with Cystic Fibrosis(that's me again!) or AIDS (ahem, definately NOT me!!!)

Infection can affect many different parts of the body, but infections typically target the respiratory tract (e.g. patients with CF or those on mechanical ventillation), causing bacterial pneumonia. Treatment of such infections can be difficult due to multiple antibiotic resistance.

Aimless Naps and Rambles

I'm not sure if I mentioned this before but I have a chest infection at the moment. It started about a month ago circa (!) New Years. Back then I took Ciproxin tablets which did nothing. I then took some Augmentin Duo tablets which did something but overall nothing. I'm about 10days off antibiotics now and unfortunately I am not much better. It's probably not an issue I should put on the back burner considering an infection after transplant is never good, let alone when it's the transplanted organ that is infected.

Apparently I missed my clinic on Tuesday but I think there were wires crossed somewhere as I had it written that it's this coming Tuesday. Nevermind. Anyway, I've been up to my eyes with assignments and assesments in college and I don't want to sound flippant about my health and blah blah(!), but I couldn't find a day to get over to see them. However it's come to the point that friends have begun to notice my productive cough and chestiness, and where I need to leave class to "cough".

So today I finished college at 3pm and went to pick up my Dad from the airport bus at about 4. I was soooooo zonked all I wanted to do was sleep. So when we got back to the house at 4.15 I went straight to bed for a nap.

I woke again at 12.30am!!! Talk about messed up clock now! I had my dinner an hour ago at 1am. I will go back to bed soon or else I fear I'll have jet lag only without the luxury of having been away anywhere.

I don't write this to get everyone worried or anything like that as if there's ever a need to worry I'll let y'all know. But this blog is about transplant too and I don't know if this excessive napping (I fell asleep at Sweeney Todd last week...) is to do with infection or just tiredness. I'll go to clinic on Monday or Tuesday and have my lung functions done and hopefully that will shed a bit of light on something!

Fundraising for CF

Yesterday people shook buckets for Cystic Fibrosis in Dundrum Town Centre. My parents, my sister and I took the Tesco enterance in shifts. This was probably the most 'hands on' fundraising I've ever done (apart from collecting a euro from everyone for 'Non Uniform Day' in school). It was a really great experience as you get to witness pure generosity and kindness from strangers; it restores faith that people are good!!

Some people came up and put in money quietly and didn't want the pin or keyring in return. Others came up and had a personal connection to CF so it was nice to talk to them. Amazingly two people came up to me and said they had been in St Vincent's hospital and had witnessed what people with Cystic Fibrosis have to endure (with the lack of facilities among other things) and felt compelled to offer a contribution. And quite a number of people mentioned the 'Joe Duffy' radio show which catapullted CF into the limelight a couple of weeks ago.

On a personal note I enjoyed being able to volunteer on behalf of the CF association as it celebrates the fact that I have the health to be able volunteer! As well as this, it is a great tool for awareness and fundraising at the same time. I really feel it is so, so important to give back where and when you can.

On a related note, registration opens for the Women's Mini Marathon (10k) at the end of this month and I would strongly encourage anyone who has legs (or wheels of course) to take part. It's on the 2nd of June. Trust me, if *I* am still here typing this this year having completed it last year, anyone can do it. I was more concerned about the rain's devestating effects on my fake tan let's not forget!! If anyone is interested in walking/running/wheeling (in chairs only) around with us please contact me!

Update on me

I'm doing rather good at the moment. I'll be calling to the hospital at some stage this week as I've got a rather annoying chest infection again. Ciproxin followed by Augmentin Duo hasn't had much of an effect so I'd be curious to see where my lung function stands and to see if either the chest infection or the subsequent tablets have had any impact on it.

I joined the gym and have been following a programme made out for me. It involves 15mins on the treadmill, 15mins on the bike and an assortment of lifty things that work on all sorts of parts of my body. I'm not sure exactly what, but all I know is when I do any of them, my muscles shake like jelly. I think that means I have a bit of a way to go before I'm Arnold Schwarzenegger just yet. I've been managing to go up every second day for a workout. Friday was my first 'slacking' day since I began, where I just didn't have the energy to keep going and stopped on the bike. This may be related to the chest infection as I had a pretty crummy Saturday.

I've got my dreaded driving test on Tuesday. Note the word 'dreaded'. If only I could drive then I'd be able to pass. I'm on an excellent website at the moment which is really helping me to minimise the faults I can get marked on, but at the same time has me freaking out because it's rather clear I'm rather unprepared. Rather.

Did you know, on "Reacting Promptly and Properly to Hazards" bit one can get marked a fault "Where an applicant splashes pedestrians with surface water.*"!!!!!!!!!

I hope everyone is well and dandy,

Love Froggay...

*Does that mean I should use bottled water instead?

A Boy Called Alex

...was a documentry about a guy called Alex who is so incredibly talented and a fantastic musician. He also has CF. He attended Eton and the programme followed him as he prepared to conduct a performance of Bach's epic choral work, the Magnificat.

Watching him and the documentry was kind of weird as it's a bit like watching yourself in so many ways. He reminds me a lot of myself in the years leading up to my transplant, except for the whole musically talented bit that is! Everything from what he was saying about his own health to how he in a sense wanted to 'put aside his illness' was so familiar.

When the show began I thought that it was going to be a bit 'dramatic' and that he wasn't actually as sick as he was going to be portrayed. You know the way in the media CF is a 'You Could Die Tomorrow' sort of thing and then the subject is actually incredibly well! But it was fairly accurate I felt. Alex a week(?) before the concert ended up in ICU fighting an infection. I always feel that the word 'inspirational' is used too causally, but this guy would be someone who would make my very short list

And as well he came across rather modest too. I mean with CF he could easily exploit that and become a 'musical cf-er' or even a 'professional cf-er' (as in he tours everywhere as the boy with CF who is a prodigy) but he doesn't. Not at all.

Below are two videos, the first is the add for the show. The second is of when Alex got cosy with Richard & Judy and just chatted to them about the documentry. They even seemed taken with his charm! For anyone who cares, he mentions his lung function is about 50% which his mother and he somewhat laughs at. I know in the programme at highest it was 35% so I'm guessing it's about that.

If you missed it and have access to More4 I believe it will be repeated on Wednesday night.