WHAT?!

"Your ears aren't what they once were and you have resorted to doing online hearing tests.

The highest pitched ultrasonic mosquito ringtone that I can hear is 12kHz"

I am clearly DEAF. My mom says it's because of years of IV Tobramycin. What makes it worse is that my result is worse than the one which says:

"You thought you were really with it and in with your younger colleagues but they just laugh at you because you can't hear beyond this!"

Keep in mind that most laptop speakers don't have a capacity much beyond a 20kHz frequency, and obviously there are are a LOAD of compromising variables which could have adverse effects on the results and blah, blah (I've spent too much time sitting in Research Methods class I think...), but if you want to try it yourself, click here:

http://www.ultrasonic-ringtones.com/

Needless to say I'm booking myself a hearing test next week. And an eye test while I'm at it.

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).

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.

Same Old & Parties

Some of you who have been wasting your lives reading this dribble for a while will remember EILEEN. She used to be the one I always had to mention but then I stopped. Anyway you oldies will be interested to know that EILEEN is also growing old. She's now (nearly) 21! It was her party tonight in fact. We went to a restauant and had nice food and then went off out to McGowan's.

I went off to a lecture in Trinity today where I learned all about careers available for psychologists. Then I went shopping and searched high and low for the present I wanted to get the girl and couldn't find it anywhere!

Anyway along my travels I received a text fromher. Having read this blog she was concerned I was rather unwell and perhaps I shouldn't come out after all. Now, I don't remember but I'm sure I said 'I'm not worried so you (all) don't need to be either" and that still stands. Yes I am sick but most importantly, I STILL HAVE MY APPETITE. And as I mentioned, EILEEN'S party was at a restaurant - paid for!!

...In all seriousness though, please don't be getting worried about me! I'm fine. And I'll have a much clearer picture of things on Tuesday where I promise to blog right from the clinic walls*.

Things I enjoyed tonight: Being able to sit down with friends and have a three course BIG meal. If you did not know me 19months ago, you may not realise just how significant that is. (Anyone from school remember me trying to eat a banana for lunch?!)

Anyway, happy birthday, birthday girl! She doesn't have any friends so please wish her a happy birthday if you read this; it will make her feel like a human.

*So not happening but you get me!

Rant About Ranters and NonFact Readers

So in Ireland there are three children's hospitals: Tallaght Hospital, Temple Street Hospital and Our Lady's Hospital for Sick Children in Crumlin (commonly called Crumlin Hospital).

I can't remember exactly when, I'm guessing about two years ago, it was decided that ONE hospital with everything in it should be built for the children, and ideally it should be located on the grounds of an adult hospital site. Bascially so that the country's expertised was housed in one building etc. To me it makes sense.

A report was undertaken and it looked at several hospitals around the world in order to make a list of what the new hospital should have and what it should be like if that makes sense. Then the report do-ers looked at a few different sites to relocate the new hospital: A greenfield site was one, Tallaght I think was another. So skip the light fandango and The Mater Hospital (incidentally where I attend now) site was chosen. This is located in the north inner city - loads of traffic, hard to get to from the country etc, etc.

There was hoo-haww because it happens to be in Bertie Ahearn's (Taiseach/Primeminsiter)constituency and he "coulda rigged it!".

My opinion: It should be built where RTE is located - a mere minutes away from Vincent's Hospital. It's a PERFECT site, just beside the dual carraige way (easy access) and yet it's its own site. Of course trying to get journalists to move out of RTE just wouldn't happen so it wasn't evenm considered.

ANYWAYS, browsing bebo today I come across a page entitled "SAVE OUR LADY'S CHILDRENS HOSPITAL IN CRUMLIN" which is run by a mother of five who feels "The loss of this Hospital to the local people and patients far and wide would be a great blow". I think from the gist of the site that "the loss of this Hospital to the local people" is probably the main concern. There is a great deal of bias on the site and when people come in who don't read facts and are so easily swayed by hype it gets annoying. For example some of the support comments read:

"Cant believe they want to shut down a childrens hospital -You have all the support from us mums" and "hope our stupid Government dont close de hospital down." - They're not shutting down a hospital full stop, they are relocating it. Big difference.

Most of the other comments speak of their own experiences with Crumlin but nearly ALL of them want to save Crumlin for emotinal reasons. "They saved my life" etc.

What people don't realise is that it is paramount that they rebuild the hospital. A simple 'lick of paint' or 'get it done up' won't do. Like Vincent's there are no ensuite rooms. Even in the Oncology ward which includes the Bone Marrow Transplant unit (where people are SERIOUSLY unwell - we're talking no immune systems at all) they don't have the facilities. Chemotherapy for Irish children is housed in a porta-cabin!!

The point of this ramble is one I privately...or who are kidding, PUBLICLY rant about all the time. People and moaners who sit back in their chairs, read absolutely nothing of FACT and then shout their opinion from the highest building. Everybody blames Mary Harney our health minister for what's wrong with the health service. Was she the one who mucked it up years ago? No she has been health minister for four years. Where do you begin untangelling a spider web? Are people so naive that they believe things can be fixed overnight? I'm not getting into a politics rant as goodness knows I could be here all evening.

Cruicially and this backs up my last point is that nearly ALL the comments on that page say "think of the children". Yes, we should. And that is why a new hospital is needed.

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.