Monday, April 30, 2007

A quote that went something along the lines of:

Helen: "No, no. I don't like her, she called me an AIRHEAD!!"

Eileen: "She called ME an AIRHEAD?!?"

Me: "She called EILEEN an AIRHEAD?!?"

Helen: "Nooooooo, MEEE is the AIRHEAD!"

That's right, our little Helen at the age of 19 and three quaters will soon be starting Junior Infants, and we hope her grammer will improve greatly.

Sunday, April 29, 2007

Day 4/183 - Roaacatane "miracle acne drug" treatement. "Just keep swimming!"

I went driving again today in my lil Delilah, and went as far as town today. Yes town, as in inner city, loads of cars, loads of traffic, loads of idiotic pedestrians who have no EYES, fools who insist on standing on the edge of the path and then WALK when my light goes green (?!) and lots of complicated lane changes. For this reason, my father accompanied me.

We went down dark small alleys, parked in small alleys and did all sorts of things that don't sound remotely dodgy at all!

Well all was going swimmingly well when IT happened. The lights went red. There were two lanes of traffic; the one on the right for people going straight, and the lane on the left for cars turning left. I went to the left. I was crawling up slowly to the lights while the lane on the right was stood still. And then what happens? A BIG FAT UGLY BLACK TOO-BIG-FOR-CITY-ROADS JEEEEEP decided that he would just PULL OUT, just like that, not in front of me, but INTO ME! He could have crushed me! His JEEP was so high that he couldn't even SEE me! Well, if he ever actually learned to drive he would have known to look in the mirrors but obviously he hadn't. My dad reached over and pressed the horn. And held the horn. And shook his fist. My foot just stayed on the break and my eyes just stayed popped out of my head. Luckily my quick thinking of applying break and handbreak saved my life!

See, I always HATED jeeps and their drivers, especially in the city, but now I despise them. *Squints eyes*. I know they're nice to sit in and probably nice to drive, but one hears that smoking and getting high is nice too, but we don't all go around doing that now do we? (OK, I know- terrible metaphor/comparison/example but I am raging!).

Anyway, once back from the city I sat out the back in the HEAT and SUN and read my book and ate my food. All done without insulin which would explain my lovely sugar reading of 15 a dinner time. Whoops! Here's to a good week!

And as you can tell from above I decided in the end to go for the harsh acne drugs to clear my skin. 1) Because I'm lazy and taking tablets I'm a pro at. 2) NOTHING else was working and at least these things have a definite success rate. Imagine where we'll all be in 179 days time...

Saturday, April 28, 2007

I had to be in work this morning at 9.15am (Grumble, grunt, shake fist) and at 9.10am, I decided I would drive up. Alone. Usually one or other of my parents would bring me but my Mum was going into town herself and hadn't decided upon her method of travel. My Dad was nowhere to be seen so early in the morning. I ran the idea past my Mum to make sure I was OK to drive up. Alone. We both agreed on a Saturday morning there wouldn't be much/any traffic so it was OK.

So I drove up. Found a space on the side of the road to park and all was well with the world.

At 5pm my Dad rings to say that he would be up to pick me up after work. I informed him that I had driven up and thus could drive home again. He said that he was well aware that I had driven up ALONE but he was coming up to sit in with me as I drove home as he wasn't impressed that I had been so irresponisble to drive alone so soon. Yawn...

Dad: I was rather taken aback that you would do such a thing
Me: Em....did you say that to Mum??
Dad: Yes I DID!
Me: Well what did she say?
Dad: She too was rather taken aback!

Yes, the same woman who reversed HER car out of the driveway so I could get out; the same woman who stood on the road so no pesky beepers could sneak up behind me; the same woman who then stood and waved merrily as I drove away was apparently TAKEN aback that I would drive alone!!!

Funnily enough, I only heard a report today that people born in the winter are more prone to having schizophrenia. I think my 'other' Mum was out this morning. That must be it.

And that same Mum who under NO circumstances would drive with a learner, came with me for a lift today and of COURSE with the ole pair both badgering me about what to do, I panicked and rolled. I don't think there's a hope in hell I'll be seeing her in my car any year soon now.

Please keep voting in the poll in yesterday's blog. Results look set but continue to do so anyway. I'm off to watch the Tele to spot Billy and G-raze who are on tonight! Oooh what fun!

Friday, April 27, 2007

I believe myself to be many things in life, and one of them is fickle. I make my mind up about something and then I change it again. It's like a serious problem of mine, no matter what I do, its there, niggling away in the back of my mind.

What has that got to do with the price of eggs I hear you ask? (OK, maybe you're not asking THAT, but let's pretend). Well, I recently said that I was changing my blog url from to and now I haven't. I'm still here as the Fat Frog-ess. You see, I got worried that some people, less computer abled, might lose their way and be desperately upset. So I left it. And now those goodie-goodies, the ones who in class would say with minutes to go "Oh Teeeeacher, you forgto to give us our homework" (UGH!! There was always one!) are asking why I haven't changed as agreed. I have had three people already TODAY ask me that! (Yes, can you believe I now have THREE readers?? Eileen has clearly learned that you can hit 'refresh' more then once!)

Now I am faced with the dilema also of waiting until I get my own domain. Why bother changing and changing again. Oh I don't know. So I have made this poll below for you to vote. Majority rules. Unless I change my mind.

The question:
Should I change my blog address?
Yes (to
No! (leave it as

Also, I am now driving my car! Eileen drove with me yesterday, and seriously that woman should be a teacher. She is SO calm (unlike fish-outta-water panicky me) and just tells me what to do! Amazing! She has a lot of functions that girl. She was my partner who ran the quiz with me, she is my chauffer, and my driving instructor. And one of the best friends I could have. (Maw get the grater, we're making cheese!) Tonight I picked my sister up from school and she was more excited about my wheels then I was. We also had an audience of her friends who just stared as I drove by. Weirdos.

Oh AND I had an A-hole who clearly had something stuck up his A-hole as when I was reversing from MY OWN driveway, he came up on top of me in one of those STUPID jeeps and BEEEPED AT ME!!! Well, I was fit to kill! My mum even came out of the house and would have killed him too. Luckily my brother was there to 'Eff' and blind him and flick him off. Here's something interesting that I shall stick on my car:


Do the poll.

Thursday, April 26, 2007

*RedBook-MedBook Blog updated*

I googled my name today because I wanted to check if the domain was available. had no results (yay!). I then googled 'Rosie Fitzgerald' and of the entire world wide web, I am second on the list! How weird is that?! That means wherever you are in the world, if you google my name, you will find a link about me on googles first page of results! If you're in Ireland, I'll be number two. If anyone is interested, the link is to information on me and my father when we apppeared on a show on RTÉ1. Ahem, now enough of the Tyra Banks-ness.

* * * * *

Dad: Now, where are we going to get those L Plates for your car?
Me: Oh maybe that pound shop (now known as 'Euro2' - what a jip)
Dad: Ah yes, perhaps, let's go!
*Skip merrily hand in hand to Euro2*
Dad: Oh look I found them, they'll do perfectly!
Me: Oh nice one, you have such a talent for finding these things!
*Bops up to counter with L-plates*
*Looks down at L plates and notices a chain*
Me: Daaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaad! These are for those parties that grown up ladies have before they get married! Ugh!

Me: Oh hey Maw! Can we go driving today?
Mom: No. I don't drive with learners. (So much for those ten lessons)
Me: Oh, OK, cry!

Me: Oh hey Paw! Can we go driving today?
Dad: Rosie, I'm wrecked! I'm exhausted!
Me: Oh, OK, sob!

Me: Oh hey G-raze, Billy, can we go driving today?
Them: Oh yeah sure, cool, yeah that's no problem!
Me: Oh fantastic, I'll wait here so.

Never turn up.

Me: Nobody will drive with me! What's the point in having a car if I can't practise, like HELLO!
Dad: I'll gladly drive with you. I'm the only one who actually said yes!
Me: Really?? Oh great, can we go?
Dad: No, now I'm exhausted Rosie, I was running around like a mad thing at that quiz of yours last night and blah blah blah....

Wednesday, April 25, 2007

It's Wednesday, which means we survived last night. We have yet to do a count of the money but we reckon we raised a couple of grand at least, which is fantastic. I was just overwhelmed by the number of people who turned up and showed their support, and those who spent so much money on raffle tickets too. Initially Eileen and I had set aside money to buy prizes with, but in the end so many were donated that we nearly had too many prizes! People can be SO generous.

I didn't come in until about 8.30 as I was greeting people at the front and showing them the way in. I presumed once I arrived the quiz would be well under way and we would be at round two or three. What a shock I got when in I walked and there was my Dad, trying to fix the sound, microphone in hand but not working. I began to really freak out then, but then decided that doing that wasn't helping so I went back outside again. Not that going back outside would help either, but at least it meant people wouldn't be coming up and complaining to ME! Eeek!

It ran over time a little bit (or by an hour) but from what I could gather, everyone seemed to enjoy themselves which was a good thing. And two Mounties formed part of the winning team which was impressive. Three of those girls (I think) are medical students, which is surprising, because for once the docs do appear to know everything!

I was part of the stragglers who stayed until the end. It was at this point I discovered someone who I shall call "Charlie" reads this blog. I call her Charlie to hide her identity, and also because I don't know how to spell Trish-with-the-red-hair. It's a toughie, that name.

I had time to take one or two (but not enough) photos last night which I will promise to put up. That's a pity, but maybe a thank you party for everyone would be in order...

HUGE THANK you to Jennáy, KM and Sz from CPA, Billy's friends, the football team, UCD people, Helen and her table, Swimmers, UCD staff, Maw&Paw's friends, Za Adams family and friends, MY friends, Ste's friends, the 'Orange Troopers', EVERYONE who couldn't come and yet still donated, G-raze & Charlie(!), Mounties (both my year and the year below) and anyone else I can't think of right now.

And of course to the wonderful and magnificent EILEEN, without whom this would never have happened. What came to light yesterday, was that a few people read this hunk-a-junk (my blog that is) and were wondering if I was making her up!! Well anyway, I've rambled enough for today so I'll do the 'Ode to Eil' blog tomorrow. Forgive me if I left anyone out in thank yous!

Tuesday, April 24, 2007

Tonight is the night where all of our (me and Eileen's) hard work, elbow grease, grit and determination, sweat and tears for the past....two weeks or so(!) comes together.

We arranged the table quiz about two weeks ago, pretty spontaniously it must be said. We arrived up in McGowan's of Churchtown and we told we could hold the quiz on said night. We then bluffed a little and told Mr McGowan that we could get 50 tables (because if we had 50 they would give us the venue for free). That night, lying in bed, I thought Of ALL the stupid things I've done, this must be top of the list. I probably don't even know enough people to fill 50 tables!!!

That story is a long one anyway, and while I say 'I'll blog about it tomorrow' knowing my laziness I will probably save it for a few months time, when I have a very mundane day and then tell you all about it. Same goes for the photos.

On other news, I got my car taxed today! Whoop-tee-doo!! I can now drive. Although knowing my laziness (have I ever mentioned that before?) it will be a while before I actually drive it. Besides people keep parking BEHIND ME IN THE DRIVEWAY (hint!) and I KNOW the minute I take that handbrake off, I'll roll into one of the cars and get in trouble. I know there's a way to prevent that happening, but I wasn't really concentrating in those lessons and now I can't remember!! It's a good thing Delilah is nice to look at. Delilah is my car's name. And my new best friend. And probably the only friend I haven't paid for. Oh wait no.

Monday, April 23, 2007

Guestbookers (Bookees?)

Here's a shout out to the people in the back! Or rather a blatent lazy attempt at writing a blog when I have absolutely nothing to blog about. In response to the people who left comments in my guestbook:

Pinkfink: How on earth did you guess I had a transplant?! I'm a bit of a quiet wallflower myself, don't really like to talk about myself much, never mind my transplant!

Amanda: Thank you for the lovely comment. I apologise for calling you a goodie goodie. I mean it's true, and everyone knows it. And everyone talks about it. And every day at clinic people stop talking when you walk by and then start whispering about how you're SUCH a goodie-goodie. But you're, what was my point?

Eileen: Yes I'm here. Now please stop stalking me!!

Now that is all, got to go outside (and sit) in my NEW CAR which hasn't been taxed yet so undrivable as of yet...

Sunday, April 22, 2007

I arrived home to a tropical and sunny Dublin with one silver medal in tow.

I was delighted with my win (women's doubles adults) as was everyone else on our plane when the air hostess announced it over the intercom. And then when we had a small welcoming committee in Dublin airport complete with GIGANTIC flag! Between the five competitors, we brought home 8 medals. Of course its the taking part that counts, but the wins are nice also.

After my third match, all I could think was how this time last year, there was no way I could have bounced around like this. It felt nothing short of fantastic.

I think the British people were a little taken aback by us 'Oirish' as we were a little enthusiastic from time to time.

As with most competitions there were the people who were outstanding, the people who were good and the people like me. Unfortunately some people were a little too competitive and I feel they perhaps lost sight of the object of the tournament and the celebration of why were there.

I myself, however had an AMAZING partner for the mixed doubles, but he in no way made me feel silly or useless, even though he probably could have taken on our competition single handily. That was really, really nice. That's what its all about really!

Dinner was nice, dance was nice, bedroom was nice.

Silver medal is nice. I've never won a medal for sport like events so it will now hang pride of place in my.....where did I put that darn medal??

If sources are to be believed Jennáy in the office is recruiting more lunchtime walkers!! Now they're all at it *gulp*. Although, come to think of it, if I can persuade them all to get fit and get them to leave at lunch I can stay and watch Home&Away!! Ugh, why didn't I think of this earlier...

Saturday, April 21, 2007

What looked set to be the hottest weekend of the year (so far, hopefully) in Ireland, was a world away from the cold, foggy, cloudy, cold, dull and COLD Gateshead (near Newcastle), where the badminton competiton for people who have had transplants was held.

Dinner was nice.

Friday, April 20, 2007

I am changing the URL of my blog. (The thing you put up in the address bar). From Monday 23rd, it will

Today I am off to a place I now hold dear to my heart. Well to a place which is NEAR to a place I hold dear to my heart.

Badminton calls, and though I am not really that good at holding a racket let alone hit a shuttlecock, I have been allowed to represent my country in the sport.

The event is for people who have had transplants (Did I ever tell you I had a transplant??) and there are 7 of us travelling over. It seems incredible that only 9 months ago I could have only dreamt of doing something like it.

I have also started jogging. Jennáy in the office is making me feel very guilty because she walks every lunchtime. My lunchtime is an opportunity to leave my computer and seat and find another seat beside a TV and eat my lunch. I'm far too lazy to do exercise. At lunch.

That's why I started jogging, every second night. I have surprised myself at how far I can go without tiring, and have set myself mini goals which I hope to achieve. That way, come June, I shall face the Women's Mini Marathon (10k) without guilt of lack of training. I just wish that pesky Jennáy wasn't so diligent. Puts me to shame!

(A reminder that there are two new blog posts below this one. I had to play catch up!).

PS: EILEEN, you owe me a nice good luck message in my guest-book! Make it nice now! I'll be reading...

Thursday, April 19, 2007

"Sick Waiting"

Yesterday a group of us met up outside the Dáil and launched the Cystic Fibrosis Association's "Sick Waiting" campaign, because we are SICK WAITING (Geddit, geddit??!!) for facilities. I know I mentioned it two days ago but there's no law against repeating oneself. Although friends of mine may campaign to bring one in...After the photo, I went inside the Dáil as I was rather thirsty.

Anyway, we took a few photos and one appeared in yesterday's Irish Times. I look rather dramatic in it, or melodramatic (I should look that word up) but it's OK. A little while ago, we decided that I had ridden this 'Wow, I've had a transplant' horse a little too long, and that the media needed new faces. I don't exactly know where that logic went (somewhere out the window me thinks) but I'm still hanging around. Like a bad smell. My retirement is in sight. (Note to any post transplant people, please volunteer!)

As a result of the coverage of the event, the story and campaign was picked up and I went on a Cork Radio Station this morning talking to a lovely and informed gentleman called Dave Young. It went well, and I was glad that not too many people I know (if any) heard me. Except Grace and KM in the office. And another colleague Sz walked right in mid speech and was promptly told to 'Shusssshhhhhhhhhhhhh', so I guess he knew too.

At the Launch of Organ Donation week.

(Martin Cahill, Godfrey Fletcher (both CFAI) and me)

Yes, I know it's not a photo of "Sick Waiting" launch, but I don't know of I ever mentioned this before, I'm RATHER unorganised. Be grateful you got this much!

Wednesday, April 18, 2007


1. OK, I KNOW I said I'd have photos but a combination of laziness (I prefer lack of organisation) and...em....lack of organisation means I haven't got them up yet.

2. The "big day" I was talking about was the removal of my feeding tube (Mikey). I took feeds every single night (with exception of sleep-overs) since I was two years old. The first two-three years involved a nose tube down every night and up every morning. And NO it wasn't as dramatic as last week's fiasco, because my Mum is very skilled at doing them. I was one of the first patients in Ireland (and the first in Crumlin Hospital) to switch from a 'peg' tube to a Mic-key Button tube. That totals 17, nearly 18 years of tube feeding.

3. The links to the pictures of the "Peg" tube and the Mic-key are not ones of me. ESPECIALLY not the Peg Tube one. Goodness knows I don't have quite the hairy stomach. Steroids aren't that bad!

4. Photo of MY mickey:

Tuesday, April 17, 2007

Today was a big day. A day, I really thought I would never see. I got pictures, but because my Internet has been down all day, I shall post them tomorrow.

In other news: The Cystic Fibrosis Association launched the 'Sick Waiting' campaign. The general idea is to try and get better facilities for those living with CF. I say 'better', but really facilities of any type would make us happy. Sharing a room with 3 other people with CF who also have chest infections is dangerous. Thank goodness I'm shot of that place now!

Monday, April 16, 2007

Today I was supposed to go and have bloods in the Mater but I slept in. Ooops! My friend 'Harry' was going in to have her G.I. studies done today (the same ones I had done last week) and she got her tube down in one go. Don't you just hate nerds?? AND she got to take her tummy tube out! Again, what a goodie-goodie two shoes!!

Saying that though, I was delighted to hear her good reports all the same! 'Harry' had her transplant a mere 9 days before me and I got to see her the night before my transplant when I was over in Newcastle.

Today was another spectacular day weather wise. It wasn't boiling hot but still stunning. My sugars went a bit all over the place today and I had one or two hypos. I need to start vigorous recording tomorrow as I have my diabetes appointment next week and it would be stupid to turn up unprepared, IE, with nothing to show them. I only get to see them every 6months or so, so I need to make the most out of my visits there.

I went for a cycle today which was really nice. My mum brought the dog along too. She walked him that is, not put him on the bicycle (I don't think his little paws would reach the pedals anyway!..haha, the image of my dog cycling is now imprinted in my mind). Mum took the bike for a while, but my dog got HIGHLY concerned and insisted we follow after her and MATCH HER SPEED! This required me to run with the dog, which felt great, but I was rather breathless afterwards. I hope that's just a sign of my lack of fitness. After transplant you tend to get a bit paranoid at things like this and even at 10months out, I still find it hard to distinguish from 'genuine' breathlessness and 'infection/rejection/flu' breathlessness. All part of learning I suppose...

Sunday, April 15, 2007

I am changing the URL of my blog. (The thing you put up in the address bar). From Monday 23rd, it will be:

Just warning you, because when it changes, the 'fatfrogess' will no longer be valid and will bring you to a weird archive place that you don't want to visit. No sir-eee!

Today I, having lost my beautiful sunglasses on Thursday went shopping. I was devastated at the loss of the perfectly fit, really snazzy glasses and needed a new pair. I also lost my eyeliner so REALLY need the glasses to cover my eyes up at times.

I walked into Dunne's Stores and saw some OK-ish glasses there. They cost €8 (£5.50). I dithered about buying them. I to-ood and fro-ed. I went back and forth. I tried them on, I put them back, I tried them on, I put them back. I inspected my purse for evidence of funds and saw some there. I looked out at the sun, at all the cool people with their cool shades. My old glasses were long gone, now was my chance. Moving on, onwards and upwards. It had been three days since my old pair had grown legs and ran away, I had searched my house top to bottom. They were not coming back to me.

I gave in and bought a pair. I wore them home. I showed them off to whoever would look at me and felt really cool. My Mum wasn't home but I bathed in the sun for a while with EILEEN and chatted.

Then my Mum came in. "MUMMMMAH!" I exclaimed "Check out da new shades" I cried! (I adopted a Brooklyn down-town accent for a brief moment you see). I pointed to the new 'bling' as a rapper would do. I gave a big grin and felt reaaaaaaal coool.

"Oh that's nice" She replied. "I found your old ones by the way - they were on your chair in your room".

Saturday, April 14, 2007

ONE for the parents!

OK, OK, I know I said no more depressing-ish type posts, which this isn't. But it IS about CF, so look away now! This one is more for the parents of lil ones with CF or PWCF themselves.

Every year the Cystic Fibrosis Association of Ireland holds their annual conference. This year it was held in Galway and last night while browsing I came across the links to their broadcasts (which are of particular interest to Parents Of LWCF in my opinion and worth a look!). Click Here For the Links

Rosie Barnes of CF Trust (UK CF association) spoke about the UK gene therapy programme.

Dr. Lee from Leeds talked about 'Ways to reach adulthood without chronic Pseudomonas aeruginosa'.

There was a brief talk (brief because I skipped it) on Nutrition and I think on CF Emerging complications of medical treatment (diabetes etc). In fact, you can view them all by just going to the link. I'm too lazy to type.

The conference was chaired by 'my very own' former Consultant, Dr Gallagher who looked after me pre-transplant. It was his opening speech that struck me when he said something (along the lines of):

" the early eighties, when most of the patients were in their early twenties or before that, and there were very few older then that. And those people who were 18 to 20 were almost always in hospital, all the time with a very poor outlook..."

When I heard that, I thought, 'Gosh, how awful'. And then it hit me. I WAS one of those 18-20 year olds, all the time in hospital, with a poor outlook. I never stopped to consider it. I was one of them. The revelation (which was staring me in the face for years I might add) came as a bit of a shock. I just never really thought of myself like that.

Anyway, I suggest you take a small peek at the links if you're interested. The first clip doesn't show video for a few seconds, and the great thing is, you can fast-forward the boring parts. And let's admit it, anything with the word 'conference' in it, is bound to be boring.

And in case you don't bother listening, something nice was: "..We now have a situation in Ireland, where half of the Cystic Fibrosis population are adults....I can think of no occupation, vocation in Ireland that does not have one person with CF in it and that will change more. So there is HUGE hope for the future."

The LINK again: HERE!!

Friday, April 13, 2007

Friday the thirteenth!!

Thank you to all those who sympathised with me on the awful event of the Nose Tube. I think I was a BIT dramatic as there are plenty of people who do these things all the time without complaint. But nonetheless I was upset and it was lovely to get such lovely comments. (Heads up to Jenny and The Country Singer!!)

*Gulp*.. *Gulp*... *Gag*.. *Cold Sweat*.. *Gulp*...*Cold S.... Oh never mind!

Well thankfully nothing majorly bad happened me today. Yet. Gulp!
I woke up and ate half a packet of refreshers and then remembered that I should have clicked 'event' on my PH studies monitor before doing such a thing. Nevermind. I didn't lose much sleep over that.

I returned to the Lady-who-does-these-things today and had the infernal thing removed. That bit only took a second and wasn't that bad at all. I think the fact that I knew it was coming out made me glad. Again, with the 'not letting me help at all', she insisted that SHE took my plasters off. I said 'Well no, I always do these things'. She then told me that it was sometimes easier if other people did these things, because 'one whip and its gone'. I think my eyes popped out of their sockets at that, I certainly do NOT like things being 'whipped off', no no! Slow and steady and MY way works best!

I've the day off work tomorrow which is fantastic. Since I shall not be working I shall go out and about and do something interesting. What with the lovely weather I feel I should take it all in while I can!

Thursday, April 12, 2007

Things I learned.

For today's "interesting" appointment, see my red-book blog

1. I have very small holes in the back of my nose.

2. I don't tolerate nose tubes very well.

3. I am a "very, VERY brave girl" (Better then a brave BOY I suppose - see yesterdays blog)

4. Private hospitals have funky carpets, funky plastic plants, funky music but NO alcohol gel to sterilise hands with.

It's only lunch time so that's all I have learned thus far today.

Wednesday, April 11, 2007

Eileen gave out to me because apparently my blogs of late have been 'too morbid' and irrelevant. Some people have no appreciation for things. Anyway as such, I shall take a break from such 'depressing' posts.

Nothing much is happening here these days. Oh except that time today when the phone rang and it rang and rang and then I ran to answer it and I answered it and they said:

"Hi is that Mr FitzGerald?"

What the?? MR FitzGerald?! I told him no, that this was his daughter and hung up.

Tomorrow is THE big day when my feeding tube is coming out. I know I said it was coming out months ago, but things happen and things change so I have an official appointment tomorrow. I then have to have a long tube put down my nose and into my stomach (which is gross I know) to test the PH and acidity of my stomach. The two events are unrelated.

And FINALLY, today is my Father's birthday. I won't say how old he is, because I actually don't know. I stopped caring when I stopped making him birthday cards and needed to know the number. I should get him something for his birthday. I want to get something different.

Socks, Tie, Book and Book voucher it is so! Sweets are off the list because he's a diabetic. He just couldn't stand me having the limelight and had to join the diabetes club too.

Tuesday, April 10, 2007

I'm THAT sick??

When reading today's blog post, one should have a little background information on the hospital I attended. I transferred to Adults and attended St. Vincents hospital from Christmas 2005. In Dublin you have a choice of two hospitals, each with their pros and cons. I was quite honestly dreading going to Vincents. Gone would be being treated like royalty (like in the Children's) and having my own room. That was the big thing, from now on I would be in a 6 bedded bay. Gone would be my own TV, my own privacy and comforts. It would certainly be different. There is no dedicated CF unit in Vincent's Hospital, and most often people with Cystic Fibrosis end up sharing rooms with other people with Cystic Fibrosis. There are only two single rooms which are reserved for the sickest of the sick. On my first stay there, one of them had a girl who nearly died.

I had spent the Easter weekend in bed. I had had a bath to freshen up and realised after needing to up my oxygen to walk to the bathroom that something really wasn't right. At the time, I didn't want to go to A+E as I thought none of my doctors would be there, I wouldn't get a bed so was happy to stay at home. I was just holding out for Tuesday morning when I could get some help.

My mum rang up the CF nurse first thing Tuesday morning. Usually I play down how sick I am, like when someone asks me how I am I will tell the facts but round it off with a 'But I'm fine/I feel OK/I'm better then this morning'. That Tuesday I shouted after my Mum and told her to tell them exactly how I was. I really couldn't face another day spent in bed. I needed help.

I was a little surprised when my Mum came back and told me they would have a bed that afternoon. Getting a bed in Vincent's the day you request it is very unusual/unheard of, unless you go through A+E.

That afternoon I watched on as my Mum packed some sort of bag for me. I sat perched on the bed wagging my finger at various items I thought I may need. We got the portable oxygen ready and I set off for the hospital.

On arrival on the ward, I was shown to my room. I got a shock as it was literally MY room. The physiotherapist came down to see me, and as nicely as she could, told me I could have called over the weekend. She then told me to lie back as sitting up was too much effort. After she left, I turned to my Mum and whispered "Am I really this sick?" The notion scared me a little but soon after I located the remote control for the FLAT SCREEN TV and got lost in some TV programme.

With my temperature continuing to spike most days, and my oxygen requirements remaining the same, I worried that I might never come off the oxygen. And while I would have gladly stayed on it if it made me feel well, I was determined that I could work and wean myself off.

One week into my stay, I attempted to walk slowly to the bathroom without the crutch of oxygen. I made it. And I made it back. Hours later I was cursing myself as it was decided I was no longer sick enough for the single room and was transferred to the six-bed bay. Who greeted me there? Three other people with Cystic Fibrosis. Charming.

I felt relief that I could see light at the end of the tunnel. I wasn't better by any means but I wasn't on the oxygen all day. That day I had a nap and when I awoke a nurse came into me. Her words were:

"Oh you're awake." (She was very observational that one) "Newcastle called. They told me to let me know that they're pretty quiet at the moment but they're thinking of you."

How nice, I thought. They're thinking of me. I took that to mean when someone comes up and says sympathetically 'Oh I'm thinking of you'. I didn't realise until three weeks later that they actually meant 'We Are Thinking Of YOU!'

Monday, April 09, 2007


We went up to Gile's Quay today and had a lovely time with an assortment of relations whom I see too rarely. I went out and sailed around the pier with my younger cousins and Mum's cousin. All in all, a fabulous day!

Easter 2006

I had been waiting on the transplant list for about three months. The first two had been spent on pretty much full time IVs, with one infection rolling into the next. Despite this, I felt OK, I was still getting time at home and still only needing to sleep with oxygen. I was breathless and coughing up my lungs most days, but the body adapts to these things. I think because I have no memory of complaining at the time, I look back and think I was OK.

Easter 2006 was probably the turning point. I had helped my phsyiotherapist with educating students and she had given me a beautiful Easter egg to say thanks. It was a magnificent egg, wrapped up in a big orange and cream bow, and although I knew I would only have to sniff it and I'd be full, I looked forward to taking it carefully apart.

I began to feel unwell the week of Easter, but what I was coughing out of my lungs was a good colour (no real indication of infection) so I thought I might have just been a bit tired. The day before Easter, I stayed in bed. I attempted to come down to the kitchen, but being off the oxygen was purely exhausting. I was concentrating on not getting out of breath just sitting in the chair. If you can imagine having run down the road and then having to speak to someone, you suppress your breathlessness to get the words out, well that's what it was like the whole time. My mum suggested I went back to bed and lay with the oxygen on for a while. I have only ever spent the day in bed (at home) on a handful of occasions, and this was one of them. I had no dinner and just watched TV. Once or twice I ventured as far as the bathroom but that became too tiring too. I ran temperatures and got sick. The whole time my Easter egg with the big orange and cream bow sat on my bookshelf begging to be opened. My brothers and sisters ate my other eggs while coming in to spend time with me.

What I couldn't understand though, was what was wrong. I had been feeling OK-ish that week, I had no indications of infection other then the tiredness and temperatures. Looking back, this was what they meant when they said 'you have severe CF, and it's unstable'. I was brought into hospital and ended up spending 10days on 4litres of oxygen, 24hours a day. 6 of those were spent in bed....

To be continued....

Sunday, April 08, 2007

I MUST insist you click the Google Video up above. It's a clip from youtube that I call "The Grape Lady". It is simply hilarious! You *must* have sound on, and the first 40secs or so are rather boring. But wait, it IS worth it!!

  1. I got up and went downstairs
  2. I injected myself with 14units of insulin (enough for a three course meal)
  3. I then went and looked at my Easter eggs
  4. I then realised I should have done step three at step two.
  5. I got four Cadbury's Cream Eggs, a tub of Pringles and a net of little sweets.
  6. Not enough for 14 units of insulin me thinks.
  7. I did not complain
  8. *Correction, I tried not to complain
  9. I sat in the sun and ate my food
  10. I definitely did not complain as it was delicious!!
  11. Had dinner
  12. Argued with sister
  13. Repeat step 12 four times
  14. Went to bed.

What a world away from last year's bed-ridden, oxygen dependant Easter of which I shall blog tomorrow. Or the next day. I'm going to the seaside tomorrow.

Saturday, April 07, 2007

The steady decline...

March 2005

It was a Friday, and a Friday we had off school - something about a teacher training day. I had been looking forward to this day off school all week and welcomed the lie-in it would bring. My mum told me that I would have a dental appointment that morning but I would have to walk down myself due to the fact that she was working. I didn't really mind as it was only down into the village which was down hill all the way.

That week I could feel a chest infection coming on, but had actually had three months without any antibiotics, so didn't really mind. We had been to NY and I had been well enough to enjoy that so it was a small price to pay. I figured I would call the hospital up the following week.

And then came Friday.

I woke up at about 8.30, and figured I would get up at 10-ish to leave time for a shower. A short time later I got up and proceeded to get sick in the bathroom- something that wasn't incredibly unusual as I did it about once a week anyway, but my whole face felt puffy. I was coughing and coughing. I felt cold and shivery but then too hot when I got under the bed clothes of my mum and dad's bed. By 10.45 I wasn't up or dressed and simply dreading my 11 o'clock appointment. I was breathless just lying in the bed and felt all clogged up everywhere.

But I did get up and did get dressed and walked down to the dentist. I was in no mood for small conversation and wanted to be anywhere but there. I didn't know what I wanted, or where exactly I wanted to be; I was just sick. Looking back I probably had a temperature anyway.

I remember struggling back up the hill afterwards, eyes half shut. It felt as though I was running but at the same time, home didn't seem any closer. I spotted two girls from my year walking down the hill on the other side and I just kept my head down. I was just sick.

I don't remember when I ended up in the hospital but I remember parts of the stay. My temperature rose up to 39.7C and I ran two or three a day. I slept all day and night. Without oxygen, my sats (the amount of o2 in my fingers) fell down to 70%. I wasn't allowed to go to the bath by myself 'just in case'. One night I even had some minor 'arrest' type thing, where my o2 had fallen off and my sats dropped to 56%. I awoke up to two doctors and a very worried nurse looking at me. A student nurse then stayed with me while the nurses did their morning report. I wasn't eating, I wasn't even living- I was just lying in the bed existing. I was just sick.

I did get better however, and shortly afterwards was referred for my transplant assessment, where I was told I was too well. But after that, things had changed. I had had my first bad infection, and was well aware of what damage could be done. After that, I pretty much stopped eating altogether. Before hand I had picked at food, after that for the MAJORITY of the time, I didn't bother. I went on feeds 2-3 times a day. I was well again, but things had changed.

When I look back now, I credit this time to what I see as my steady decline. I hoped I would pick up, and at times I certainly did- after all I wasn't even bad enough for a transplant then, but I was sick. And not getting a whole lot better.

Friday, April 06, 2007

Wow the weather was super-fantastic today. After transplant, sunbathing is NOT advised, simply because with a low immune system, you are more prone to skin cancer. At the time of my transplant, I vowed never to sit in the sun again. Well that was fine, as we heading into winter, but my goodness now that Mr. Sun has said hello again it is rather tempting!

I finished up work today, which was good. I have appointments all next week, so will take the week off. I'm also having my feeding tube removed on Thursday, so depending on how that goes, I may need more time off. I had better ring my boss about that come to think of it...

This morning we went out and picked my car. Actually we picked two, but my Dad isn't happy about getting me two cars, which I think is a very reasonable request. We have to wait for the insurance to come through next week. In the mean time my job is to pick between the two cars. I'm really bad at making descions however. I think.

Thursday, April 05, 2007

It would appear a LOT of people either watch Neighbours or The Simpson's, as a scary number of people saw me yesterday on my little 3minute interview. It all went well, except that I told the nation I needed a liver transplant rather then a lung transplant. People might be thinking I'm getting greedy! I managed to correct myself and apart from that it went well. Aidan was SO sound and showed us around the studio (teeeeeeny tiny). It's the same one that was used for 'Zig and Zag' years ago, so has had a host of big names pass through.

In make-up Brian Dobson who reads the news was beside us. That was weird because he (obviously) sounds exactly as he does on TV so it sounded like the news was on in the background.

After filming we drove around RTÉ and found the set of 'Fair City' which was predictably hilarious! We then spotted some of the actors driving about. One of them even saw me point at her and say 'Oh look, it's your one, Suzanne!!'. That was slightly embarrassing. Never mind.

The weirdest thing though, was in the canteen when a guy saw the three of us, did a double take at me, and then nodded, smiled and said hello. I didn't have a clue who he was, and perhaps with all my make-up he thought I was 'someone', but it was weird thinking he may know me and me not know him. Krazy Kat!

Wednesday, April 04, 2007

Aidan Power:
I must have been confused - I think THIS is organ donation week...or else it runs for two weeks? You'd think I would know, but have I ever mentioned how disorganised I am?

Anyway, if you ever watch Neighbours or Home&Away on RTÉ2, in between those, there's a bit of presenting that goes on. They do about 4minute slots and you hear what's coming up next and occasionly they have guests in doing various things. Tonight, I'm going to be one of those guests guessed it (OK pretend you did!)...organ donation week. Thankfully it's only a three minute slot where I tell him what my situation was, why I needed a trasnplant and how my life has been since.

EILEEN and my WHOLE FAMILY are telling me to get a plug in for the table quiz, but I'd feel so embarrassed!! I'll try my best but it doesn't look too bright! I mean I don't want to 'doorstep' the whole TV thing. (Doorstep kind of means you take something or someone and then get them to talk about something YOU want)

Now is it just me, or does Aidan Power look REALLY like Dermot O'Leary??

Tuesday, April 03, 2007

For someone as unorganised as myself with regard to ANYTHING beginning with LIFE, the fact that I have organised an event in under 24hours is nothing short of a miracle! A MIRACLE!

Myself and EILEEN got our thinking caps on last night and spent this evening scouring venues. We ended up in McGowan's of Churchtown (the place where I am always asked for ID INCLUDING tonight - funny story that, I'll tell you tomorrow)

The guy is highly sound and really friendly. So keeping it short and sweet the details are:

A Table Quiz

Where: Mc Gowan's Churctown (obviously
When: Tuesday, April 24th
Cost: Tables of four cost €40.00
For what:Cystic Fibrosis and the Mater Hospital (lung transplant unit

It should be a good night's entertainment! Well, I hope so anyway! Should any of you who I know who 'live around' are reading this and I haven't contacted, please contact me by leaving a guestbook entry, leaving me a bebo comment or calling me. Thanks! xx

Monday, April 02, 2007

Nurses on Steee-rike!

How inconvenient is that?? Typically I (thankfully) have had no need to contact my clinic whatsoever in the last few months, but due to a clash of appointments, and one or two which I don't want to attend, I had to call up the clinic today.

All patients with Cystic Fibrosis need to have the PH in their stomach tested (see if it's acidic or something), as per Dr. E's request. It seems like a rather invasive procedure and not one I really welcome with open arms. I actually thought this letter was sent to me by accident as I'm due to have my feeding tube removed that week as well. Anyway, in order to manage all four appointments that week I called them up to sort it out.

Thanks to the informative Spin 103.8 radio show though, I discovered that 'answering phones' is something the nurses aren't doing at the moment. Fan-freaking-tastic.

Also, my dad has pinched, stolen, knicked, thieved, burgled my room and TAKEN my old phone. Granted it is the nokia 3210, which doesn't vibrate, is a bit heavy, and I did buy it in 1999 so thus of little to NO use to me at all, but *still*. Anyway he told me if I could find it I could have it back, but of course I'd never find it. Well hawk-dam, I only walked into his room earlier and saw it there charging by the wall. I don't think he'd make a very good thief despite his constant attempts to!!

Sunday, April 01, 2007

Sign Lanuage People

Why is it that you only ever see those people doing the sign language over programmes at 3 o'clock in the morning?? It makes no sense! Do broadcasters think that the deaf community only live during the night? That when the rest of the world goes to bed, the deaf get up and run around, cause havoc, go about their business and WATCH TV while everyone else is asleep??...OK well maybe not 'causing havoc' as such...

I think not.

Anyway, just something I noticed and noted.

I did all of nothing today. I have my appointment for my dermatologist for two weeks time. I'm hoping to be put on Roaccutane for my acne like skin problem. This stuff dries out the base skin level, thus clearing pores and getting rid of the bad skin. As such, it dries out everything like hair, lips and all your skin. It's quite an extreme measure to go to in my opinion, but I'm done trying everything else. In the mean time I'm using a wash/scrub thing which also dries the skin. I'm also not wearing any make-up which is so embarrassing for me, because I wear it everyday. I guess it's something I'll get used to though as the results shall be worth it in the end.