Ahhh-It's half way through December!!

Went to my final clinic for the year. CRP (infection markers in the blood) have come down to below 3, which is normal!! Lung function went up again - now 103% which I'm thrilled at, considering I thought I was coming down with a chest infection last week! I took no painkillers for my leg today- it is still sore to walk around for long periods, but I haven't taken any pain relief so that's a big improvement. I'll probably dose myself up with painkillers tomorrow since I'm satisfied there is a good improvement. College is nearly over for this term. Injections are going grand- I still wince and stick out my tongue and do them so slowwwwwwwly but overall, life is great.

Unfortunately, due to the leg thing, I missed my beautiful goddaughter's christening last weekend, as the pain was just at its peak. But I have plans to go over and spoil her soon.

In other health related spuds, if you could spare a thought for my poor sister who is still ill, that'd be great! Obviously, being a perfectly and unusually healthy person, being anyway ill is obviously hard. So especially now, she could do with good thoughts :)

And finally, because I should be reading, I thought I'd post this Christmas Quiz to pass the time:

1. Wrapping paper or gift bags?
Both but mostly wrapping paper- depends on my prepard-ness

2. Real tree or Artificial?
Real every year until transplant, now artifical. But you can't beat a real.

3. When do you put up the tree?
December...sometime....early...(this weekend just gone)

4. When do you take the tree down?
January.....sometime...early...

5. Do you like eggnog?
Em, never had it!

6. Favorite gift received as a child?
Anything Sylvanian Families related

7. Hardest person to buy for?
My sister

8. Easiest person to buy for?
Parents

9. Do you have a nativity scene?
Yes. Someone keeps sticking the Jesus in, even though he shouldn't be there since he's not technically born yet, so I keep taking him out. And then someone sticks him back in again.

10. Mail or email Christmas cards?
Em....I don't!

11.Worst Christmas gift you ever received?
I think I've been pretty lucky, or else I've banished any bad present from all memory...

12. Favorite Christmas Movie?
I'm useless at sitting through films on TV, but I guess Harry Potter is on TV every year and I like that....but that probably doesn't count as a Christmas movie

13. When do you start shopping for Christmas?
Disastrously late

14. Have you ever recycled a Christmas present?
I don't think so!

15.Favorite thing to eat at Christmas?
Ooooooooh, Christmas dinner with all the works- my Mum does a FANTASTIC Christmas dinner!

16. Lights on the tree?
Yes

17. Favorite Christmas song?
I love ALL Christmas songs! East 17, Wham, John Lennon, Band-Aid (the 1984 one), Shakin' Stevens, you name it!

18. Travel at Christmas or stay home?
At home every year.

19. Can you name all of Santa's reindeer's?
No- Dasher, Prancer, Rudolph...

20. Angel on the tree top or a star?
Angel - with one arm. Sad times.

21. Open the presents Christmas Eve or morning?
Christmas morning

22. Most annoying thing about this time of the year?
When people start talking about it in September, and then the 27th when it's all over. Or what kind of irks me is when people who aren't even remotely religious in any sense celebrate it, since it's kind of hypocritical of them, and I shouldn't really say that but oops I just did! But I guess if it brings people together then that's good too...

23. Favorite ornament theme or color?
In 1995, I made a teddy bear ornament out of dough stuff that was varnished, and that was my favourite, but then one year my dog ate it. So now my support lies in the one arm fairy up the top.

24. Favorite for Christmas dinner?
All of it

25. What do you want for Christmas this year?
I don't really want anything in particular (a new car ahem), but I love being with my family and if we're all healthy and happy, that's enough for me.

REAL Improvements

I last posted on Tuesday saying how I felt that things were improving. So on Wednesday I moved back to taking just paracetamol. Whoah, I was wrong. Turns out the 'improvements' were merely the symptoms being covered up by taking so many Tylex tablets.

Yesterday, however, I felt I'd have to just put up with the pain as the side-effects from taking Tylex began to outweigh the benefits. They're rather sickening on the stomach.

As it happened, today overall was a much better day. The pain has decreased a great deal, and while I've moved to taking Solpadeine (which has paracetamol and codeine in it, but is available over the counter) I'm confident this is genuine progress.

Of course, with it being me, there IS always something. That 'something' being that my CRP (infection markers - should ideally be 0) were 25 last week. Luckily, on no treatment, they're down to 16 today. IV antibiotics were discussed in a spontaneous clinic visit today. But it's Friday, I don't do little cannula lines so really they were a no go. I took a combination of strong oral antibiotics instead.

My sister, however (normally perfectly healthy, no attention seeking illnesses or ailments for that one) has something along the lines of suspected mumps. I've been told to stay away from her, which to be honest isn't a big deal. However she's planted herself in the main TV room these past few days so that confines me to the other end of the house where there isn't too much to do. I'm beginning to wonder if it's a coincidence I'm suddenly improving!

Improvements

Today I collected my Heparin injections from the pharmacy and administered my second shot. It was a bit nerve wrecking but I did it with minimal fuss. I worked out that three months' treatment equates to 93 shots. So far I've given two. So I have 91 left. In the grand scheme of things, that's not too many (imagine if I had to take it for a year!).

I'm finding today the pain is a bit less than it was yesterday. I'm don't feel the need of urgency to sit down after a couple of minutes of being up, and rather when the pain sets in, I'm able to stretch a little bit. There's still a good deal of discomfort but I'm seeing it begin to lessen (I think/hope). This morning I took two Tylex tablets which is more than I had yesterday. I had been warned about drowsiness, but I survived my 9am-11am class grand, but I was very distracted and then sleepy by about 1pm. But that could be because missus over here isn't overly used to 9am starts. Or it could be the drowsy tablets either.

So this is a bit of a nothing post really. I'm going to go work on assignments after my nap, imagine that, maybe I'm sicker than I thought!

Mystery Solved - It's a long one!

My Sunday yesterday was a paracetamol popping one, as the mystery pain in my leg just wouldn't let up. My brother used to (or maybe still does???) have a problem with the cartilage in his knee and he'd sometimes put it out when playing rugby or soccer so there were crutches in the house which I soon found.

So after a miserable, sleepless night, I decided I'd mention the pain to the team this morning while I was over for bloods. Not wanting to appear dramatic by hobbling in on crutches, and with my leg feeling just a bit stiff this morning I decided to just catch a lift over and walk in.

But y-owwwww. It was y-ooowwww-some. The doctor happened to be standing outside the clinic when I arrived and said 'Ow, what 'appened to yo leg??' (He's Swiss). I told him I didn't know, but I reallllly needed to sit down. He examined it and sent me for an ultrasound.

When having the ultrasound, the girl was pretty quiet so I asked if she'd spotted the problem. She said everything seemed absolutely fine on the top of my leg. And then she moved down towards the knee and she went quieter (which is pretty hard considering she was silent anyway). And then she said 'Excuse me, I'm just going to get the doctor, I think I've spotted a clot there'.

So the 'mystery pulled muscle' is a clot. I feel slightly less stupid now. There's a 'Deep Vein Thrombosis' which can be dangerous or, there's the one I have, which is a superficial type. Interestingly the 'silly sore arm' was most likely related. I wasn't really paying too much attention, I just realllly needed pain relief.

The treatment is either Warfrin tablets for three months, or Heprin injections for three months.

If I go on Warfrin I'll need to attend a Warfrin clinic twice a week (I think?) and have levels checked, and I can't drink alcohol on it (which is the least of my worries). Unfortunately, the Warfrin doesn't really work out well for me in terms of being able to get to clinic twice a week.

The Heprin injections are pre-drawn up syringes, given once a day into my stomach. In terms of monitoring there's just a set dose, and I take it for three months. My stomach will be 'black and blue' by February and the injections will likely sting. But it will be my more flexible option.

So I went for the latter option. I administered my first Heprin injection this morning and of course I cried, out of frustration, out of leg pain and out of the fact that I couldn't get the needle in. So I now have three pink marks where I attempted it.

The best part is I was prescribed Tylex for the pain. It contains codeine so it's stronger than paracetamol. So far I've only taken one tablet with one paracetamol because I was warned if I took two Tylex together I could end up asleep on the floor, and with an exam in college this afternoon, I kind of needed to be awake (I'm more intelligent awake).

So I have the crutches, I have the painkillers, I have the treatment and so it's just a matter of being grateful that I'm able to have the aforementioned, and seeing it all through. And of course, grateful that it's not something more serious, and that for the most part, I can get on with my life.

Except that icey ground and crutches are NOT a good combination. Stay tuned for the 'broken arm' installment coming soon!

Balancing act

The good news: I've had a great weekend. I went out on Friday, meaning to only pop into town for a couple of hours, coming home and having a nice sleep. In reality I got in at 3am. Such is one of the results of living life and having a good time!

This morning, I was up and dressed by 10.30 as myself and two guys from college were heading down the country for the afternoon to a friend's house for some college related work. In fact we left at midday as the driver overslept. The countryside (about 8km from where my Dad grew up) was a bit of an eye opener. I don't know how people survive living with nothing but fields around them for miles in every direction. Where is the MacDonalds??? So coming back up to the city this evening was a bit of a relief. (And I mean that with no disrespect for people who live in the countryside - it's just, I've grown up in a very limited little bubble which consists of a farm across the road, and the city centre 20 minutes away and every conceivable shop or restaurant down the road from me. And I don't do change very well. )

The bizarre news: I seem to have taken a 'step backward' with my leg pain (boom boom). I'm taking painkillers (beautiful, beautiful killers of pain) about twice a day for the pain and I'm having difficulty walking on it. I'm beginning to think I probably underestimated what I did over a week ago- thinking I merely pulled a muscle, I probably tore something or something equally ridiculous by placing my foot up on a chair. I mean who on earth lands themselves walking with a limp by putting their foot up on a chair for goodness sake??

The leg is slightly swollen (and obviously sore) at the moment. Post transplant, fluid retention (kind what very old ladies look like with 'c-ankles') is something to be taken very seriously. So now I'm questioning whether I'm swollen, whether there's an infection, whether I have fluid retention. Did I really just pull a muscle? When did it start getting seriously sore? Is this something that happens a 'normal' person, or is this because I have no immune system? Who do 'normal' people call when this happens? Am I being a hypochondriac? Should I just keep popping the pills and hope it will all just sort itself out? Have they ever performed a leg transplant??

[This is the thinky-thinky, waffle bit here now- you can stop reading here. Run.:] There is always a balance to be found when dealing with life post transplant. You push a little, you pull a little (I don't actually know what I mean when I say that, but I think it relates nicely here somehow). You have an obligation to do the most you can to take care of the gift you've been given which means you get yourself treated the minute you suspect you have an infection, a cold, a temperature.

And then you go out (actually, you stay in, work on assignments) and do silly things, which really in the bigger picture are just a tad embarrassing (I wasn't even exercising when it happened!) and you wonder whether it constitutes as a 'real' problem.

It's just one of those 'thinking out loud' situations which a lot of people don't really think about- someone gets a transplant- that's it, they're pretty much fixed right? Thankfully, for the most part, yes, but the thinking doesn't ever stop. And maybe it's that 'thinking' which ensures that all bases are covered so everything does stay fixed: For every ten queries ("Oh my gosh, is that a bruise on my eye?" "No, that's smudge mascara"- "Oh my gosh, why are my hands blue??" "Because it's cold outside"), you catch that one real problem. Better to be safe than sorry.

I just wish I didn't feel guilty about wishing I had crutches!!

Keeping them on their toes - even if I can't walk!

So last week, I very foolishly pulled a muscle in my leg. I howled and felt rather silly. The next day the leg muscle kept seizing into cramps and releasing. The days that followed were ok, in that I could walk but it just stiffened up if I sat down or stopped walking. But yesterday the pain turned to a 'growing pain' ache, which I took to mean the muscle was fixing itself, regrowing etc. Except with all this 'growing' I couldn't sleep, because growing is a painful business. Which brings me to today, where I can't put very much weight on the leg, and now walk with a ridiculous limp! Except if I concentrate really hard to not look like an idiot/grandad, I can walk normally-ish.

So that problem, I live with - I know what caused it, and I know it will fix itself.

Now backtrack a couple of days, when lo and behold, my *arm* started to hurt. This pain was in my forearm and a rather stingy pain. I couldn't stretch my arm because it stung too much. It felt like a cannula had tissued or leaked in my arm (for anyone who's experienced that yeee-ouch feeling), but I couldn't pick a cause or pinpoint what was wrong. There was just a faint pink line which looked like it was following the path of a vein.

My mom wanted me to ring the hospital, but at the risk of sounding like a complete doofus ("Hi, em, I have a sore arm today, what should I do?") I refused. But today, whilst in college I went to see the nurse when the waiting room was clear. The nurse was most puzzled so charged me €10 to see the doctor. The doctor, who was also most puzzled decided to ring the hospital as she suspected I had Phlebitis (swelling of the vein). The hospital, who wanted to see me straight away. Grrrr.

So I left and went to the hospital. They asked me a few questions but I then told them that the pain was still present despite me taking painkillers. What was i taking painkillers for? Oh no, not the sore arm which I couldn't stretch, not the sore leg which made me walk with a limp. No I was actually taking painkillers for a sore, cramping stomach.

So basically, I felt like I'd been hit by a bicycle with a heavy man on top. And then to top it off, they couldn't make any solid conclusions as to what was wrong with my arm so I was sent home. And the worst part? I got a paper cut. Grrrrr.

I suppose I should be grateful there's really nothing seriously wrong. And grateful that someone invented paracetamol.

Mundane Monday (har, har)

But seriously, phew what a mundane day. I have no 11th hour assignments to do so really I should probably prepare for those assignments which will ultimately become 11th hour assignements next week. If only....

Also, one of my best friends got to wear a gown and cap today as she was handed her degree in Economics and insert other subject here (if only I paid attention these past three years...). I haven't seen any photos yet but I am still very proud.

It gives me hope that I can someday acheive the same honour and get to wear the gown. And maybe the cap. Interestingly, anybody know why only girls have to wear the cap (over here anyway) ?

Answers on a postcard!

Weekend tornado

I had an enjoyable time this past weekend. I went out on Friday night for one of the girl's birthdays. I had a small amount of alcohol to drink but for some reason, in the early hours I became highly annoyed at something and my mood just plummeted. I'm guessing it's the stress of assignments and college and a host of other things that gathered together to put me in a mood and the alcohol just made it come to the forefront. I think I shall edge slowly away from the drink in the near future...

Then last night was a most exciting evening as I was invited to a ball in the Four Seasons hotel. I got to wear a nice gown and it was a great night altogether. The compare (host?) for the evening was Alan Cantwell who presents the news on TV3 so my friend Grey (!) was delighted to meet him and have a grand old handy dandy conversation with him.

Having arrived home after 3am, I then got up at noon today and got ready for a luncheon one of the girls was hosting. And my, how she knows how to host! My idea of putting on a lunch would involve ordering pizza or putting sticks in cocktail sausages - this girl had a three course meal with full silverware and white wine. Impressive.

So now I'm home and ye ole assignment briefs are glaring at me. Depressing me. I took an oath of hibernation last week which I hope to live up to this week.

The most bizarre problem of that pulled muscle in my leg is *still* at me, and it has me limping around if I stop at any time. It's grand if I walk on it but those initial first few minutes are a killer. I seriously don't know what I've done. Maddness.

Assignment blues

Logic would suggest that the busier I am, the less frequently I would post here. In fact, that's contrary to the reality which says that the busier I am, the more things I need to get done, the MORE I post here. In fact if I was ever to become a smoker, I don't think I'd have time to fit it in! But yet, this must be my kazillionth blog in a week.

Today the first of my many, million assignments was due in - it was worth 25% of my overall grade. So last night was the last straw, I couldn't let 25% go down the drain, no matter how much of a dedicated procrastinator I am.

So I sat down to my laptop. Got a headache. Panicked. Then started typing. I opened a book. I opened another book. Panicked. Left the room. Watched TV. Dropped my sister off out somewhere (my sister, who, when I become a fully fledged mystery detective will be come my number one case). Came back. Looked at my laptop. Browsed the Internet. Looked at the books I had opened. Then I put my leg up on a nearby chair and pulled a muscle. Howled and danced around the room in pain. Looked at my open book again. Panicked. And then I got really, really tired and decided to go to bed.

The project wasn't due until 4pm, so I went into college this morning for my 9am class. Then I signed into my 11am class and left to start working on this silly project. In reality I started working at about 12.30pm. Then I went for lunch and came back at 2pm.

And then I ploughed through and miraculously finished it and handed it up at 3.45pm.

But the problem is my leg, I now can't put any weight on it at all! I'm thinking this has something to do with trying to work hard. I've learned my lesson on that one!

The Recession Tumbles On...

Today my friend told me that she'd died her hair brown. My friend has been colouring her hair blonde for years and years. The only time she went brown was when she moved to America for the summer and didn't want to go three months with roots. And then she came home and went blonde again.

But now she can't afford it anymore. So she's gone one colour all over in attempt to save the pennies.

It's the recession. It's making life expensive.

And on Friday I'm booked in to have the same job done.

Morning After Choices

After college, I got working on my assignments today. Then I watched Grey's Anatomy for a while. I believe there must be a balance of work and play! I haven't been eating much this past week either, so I've just had a scandishake (600 cals), a bag of crisps, four chocolate bars and a bag of butter flavoured microwave popcorn, so hopefully that should ensure my weight stays stable today!

Regarding yesterday's post, it's not really all that serious a matter (for those who have expressed worry!), but at the same time it's a decision and I don't want to have make it. I thought the problem I had would be an easy fix and it's not. C'est la vie. Anyway, like a procrastinator's dream, I won't be hearing from the team about it for a few months, so I can just forget about it and pretend that it's gone away until then! :-)

PS: Just to reassure people about the title- I refer to it as the 'morning after' as I wrote the other post late last night. I didn't go out and get hammered and drown my sorrows or anything, just incase your mind has an active imagination

PPS: the recession still really hurts!! ;-)

Appointments and Choices

I had an important appointment today yesterday (see how late these assignments have me procrastinating 'til?) in St Vincents. The consultants I met were very nice although what they said wasn't really what I wanted / was expecting to hear. Of course, everything medical is done in my best interest but this one I'm not so sure about. I'm not going to go into what it's about and I apologise if it feels like I'm dangling a carrot here. It's generally not considered a serious problem but it's still a problem and fixing that problem may cause other problems. (I'm thinking my calling in life is NOT to make up cryptic clues for things...if that exists...) But generally in my medical history the majority of choices I have to make are pretty much already made for me in the sense that the alternative isn't much of an option. But here, I'm not so sure.

So after my appointment I had planned to go to the chapel. The same chapel I cried in on my very first admission as it happened. I think as much as a religious place my need reminding of my face, right about now it's kind of where I should be! But I couldn't afford it.

Don't worry, the priests and nuns aren't charging in, but, for two hours parking I had to pay €4.70 and I was risking going over and I honestly couldn't afford it.

Needing someone to tell you what you're supposed to do and not having that person hurts. Recession hurts more.

Riddles from the library

Riddle 1: Why is it that noise is absolutely forbidden in the library and yet the librarians in here SHOUT their conversations to one another?

Am I really interested in why the man librarian now cycles to work to lower his carbon foot print or why in recent months, he's been looking more and more like Tom Hanks in Castaway with his ever growing beard??

No.

Riddle 2: How is it possible I've made it as far as the library - that's as much work as I've done in a LOOOOOOOOOOONG time!

Maybe I'll do a bit of this to pass the time:

Yikes

It's been a while, and yet in a sense, nothing has changed! I'm still no further on with ALL my assignments but I'm confident I'll get there somehow! I've calculated that after this week, I only have 4 more until Christmas break. I'll make a countdown of the days, hours and seconds when I attempt to write my essay later.

Nothing much exciting is happening around me the moment, which is rather how I like it. I finally meandered down to Hamley's Toy Shop which opened a couple of weeks ago. At €27 for a medium sized (but very, very soft) teddy, I don't know how much 'meandering' I'll be doing there again anytime soon. They do have an awful lot of toys, but I was expecting them to have some sort of slide or trampoline to play on. Disappointing. Maybe if I bring a child with me the next time I'll have more fun!

Health wise it's all very mundane, which again, is exactly as I like it! I have an appointment on Monday to have my little leaking tummy looked at. I had blood taken this week but interestingly the biggest bruise I have comes from whacking my hand off some random object on the corridor as I was leaving:

I had to park on the street and my meter was 10 minutes over time and I hadn't even had anyone LOOK for a vein at this point. I was very anxious about getting clamped. So after two sticks, they got their blood and I literally ran. It was when I was running, I heard a very loud clang (made louder by the fact that it was a rather echo-ey corridor). I saw people coming towards me, open their mouths and glare at me. I think I hit a fire extinguisher, and it seems I obviously have a hand made of iron or metal. Flustered, my handbag having fallen off my shoulder, I smiled meakly as continued on my "run". When I try to explain that's why I have a big yellow/black/blue hand, people seem to think I was running flailing my arms wildly. I assure I was not. I think the fire extinguisher got in my way.

Anyway, I wasn't clamped.

And that's exactly how I like it.

Procrastination- Pieces of Me

Things are seriously busy all of a sudden with college stuff. I have 5 major assignments due with another two to be handed out before the end of the week. And yes, this is all sudden. Anyway as you can tell I have passed the panicky, butterflies in stomach, get an insy bit breathless stage and moved on to the old reliable procrastination stage.

I found this fun game to pass the time:

You go into itunes, make sure 'shuffle' is selected and then click play. For each question, press the 'next song' button to get your answer. And you have to write your first answer (otherwise you're a cheat!). Which is why some of my answers make no sense....

1. IF SOMEONE SAYS "IS THIS OKAY" YOU SAY?
Super Trouper (with a cheesy annoying smile!)

2. WHAT WOULD BEST DESCRIBE YOUR PERSONALITY?
ABC - I want you back

3. WHAT DO YOU LIKE IN A GUY/GIRL?
Falling Slowly (I hope in the loving sense not physically falling...that would get annoying)

4. HOW DO YOU FEEL TODAY?
Piece of me (?)

5. WHAT IS YOUR LIFE'S PURPOSE?
Believe Me Natalie (Gotta go find that girl and make her believe me??)

6. WHAT IS YOUR MOTTO?
Trip Through Your Wires (I guess this could mean, overcome your obstacles!...or more literally, try to get out of my bedroom alive...)

7. WHAT DO YOUR FRIENDS THINK OF YOU?
Overkill (oh dear)

8. WHAT DO YOU THINK OF YOUR PARENTS?
One Thing (but they real question is WHAT!)

9. WHAT DO YOU THINK ABOUT VERY OFTEN?
Move! (Only when I drive...)

10. WHAT IS 2+2?
Rule The World (Abstract that one)

11. WHAT DO YOU THINK OF YOUR BEST FRIEND?
Jenny Was A Friend Of Mine (Freaky.... but I should point out that actually Jenny *still* is a friend of mine....)

12. WHAT DO YOU THINK OF THE PERSON YOU LIKE?
Swallowed in the Sea (where there are plenty more fish)

13. WHAT IS YOUR LIFE STORY?
Please

14. WHAT DO YOU WANT TO BE WHEN YOU GROW UP?
Accidentally in Love (specifically *accidentally*)

15. WHAT DO YOU THINK WHEN YOU SEE THE PERSON YOU LIKE?
The View From the Afternoon (...)

16. WHAT DO YOUR PARENTS THINK OF YOU?
Welcome to the 60s (must be my new beehive)

17. WHAT WILL YOU DANCE TO AT YOUR WEDDING?
Daysleeper - REM (I'll have a boring wedding)

18. WHAT WILL THEY PLAY AT YOUR FUNERAL?
Out of My Mind

19. WHAT IS YOUR HOBBY/INTEREST?
Hey Jude

20. WHAT IS YOUR BIGGEST SECRET?
Fake Plastic Trees (It's a conspiracy)

21. WHAT DO YOU THINK OF YOUR FRIENDS?
Big Girls Don't Cry (Ohhhhhhhhhhh but they do)

22. WHAT'S THE WORST THING THAT COULD HAPPEN?
Jim Dandy (don't know who that is but maybe that's for the best...)

23. HOW WILL YOU DIE?
The Playboy Mansion (I'm intrigued)

24. DOES ANYONE LIKE YOU?
Some Girls (I'm intrigued)

25. IF YOU COULD GO BACK IN TIME, WHAT WOULD YOU CHANGE?
1973 (economically a baaaaaaad year)

WHAT HURTS RIGHT NOW?
Trouble

27. WHAT WILL YOU POST THIS AS?
Pieces of Me (now that's just freak-ay)

Voting

I've never voted for a president before. And, seeing as I'm not an American citizen, I won't be voting today (d'uh). I think I know who I'd vote for, but that's irrelevant. But I'll be watching. And call it fate, but college has been cancelled tomorrow so leaving me free to watch a good bit of it tonight.

Across the pond, for voting you get a free coffee from Starbucks, free ice-cream courtesy of Ben & Jerry's and a free donut from Krispy Kreme. (Except, according to PerezHilton, in California where the law bans giving things to people to vote or stay away from the polls.) Land of the free indeed! *Imagine*

Riddle

How is it possible that it took me an hour and a half to get ready to go out the other night and yet it took me only 11 minutes to look like a convincing pirate on Halloween - make up and all?!

Whoops

I just realised I wrote a smally and never posted last week. It was just about my college library, nothing exciting!

My lung functions today were 102% which is an all time high, and that elusive 100% has finally been captured! It's really amazing and so fortunate that despite the random sickies I seem to have picked up these few months, that my lungs are doing so well. (Whacks head off wood)

My weight is also up by 2 kilos (4.4lbs) which is a relief. I've been really trying and it's good to see it pay off.

At this stage the team want my Prograf/Tacrolimus (anti-rejection tablet) level aiming to be between 6 and 9. Or 5 and 10 depending on who you talk to. I mentioned before it should be between 10-12. The reason they'd like a lower level has something to do with the fact that I'm a 'couple of years out now' and something, something...trail off.... Anyway, It's always great to hear 'couple of years out' said in such a relaxed way. It also reminds me that technically they're not 'new' lungs anymore either.

Thinking about the two years, I think at some points I've *maybe* pushed myself a bit too hard, or maybe done things that have had some people raising eyebrows. I do need to constantly remind myself that despite the fact that I'm now freakishly well (touch wood), I still have to find that balance, and that 'balance' perhaps needs to be more closely monitored than that of my friends. But at the same time, in two years, I'm healthier than I've ever been (bang wood) and I've had the opportunity to travel (which is my number one favourite thing to do!) to 14 different countries (give or take one or two, can't quite count). I've had countless late nights and got up the next day (not necessarily early, but up nonetheless...) and I've managed to complete one year of my degree course (still three to go...). It's true that your health is your wealth!

Weedsday

Things are going swell :) This week I went back to college and today we have the day off. There are protests in town to protest against the proposed re-introduction of fees for people in third level education. Basically, it's not going to be free anymore. It's not an issue I feel particularly strongly against (I could go into details before yet another person bites my head off, but I won't) and considering it's cold outside and I don't like marching, I'm not going. And I have a million other things I need to get done. I'm not actually a busy person, rather a very, very disorganised one.

I had my long/picc line removed on Monday and am so far doing well off IVs. I have to go back to clinic next week for bloods and review and to check my lung function etc. I should point out an error I made a while back in relation to CRP (infection markers in the blood). I said the level should be between 10-12, in fact it should be below 3-point-something. My last result back was 5 so I expect the bloods taken on Monday should (hopefully) be nothing.

That's all really :P

Smursday

I have come to a few conclusions today. First of all, today I went to clinic, which meant I had to be up, showered and dressed early. None of which actually happened "early" (must work on that) so my hair was in a horrible fuzzy state once washed. I have concluded that I *definitely* need to get my hair done pronto, the colour needs urgent fixing and I need to start straightening it again.

Secondly, it must be nearly over two weeks since I last wore make-up, which sounds so vain I know. But it's scary how different I look without it on. That sounds vain too, I know. Probably because I'm grey pale at the moment anyway, and I have fuzzy hair, but seriously, I need to start doing *something*.

Thirdly, I feel better. Not one hundred percent by any means (yet), but better. I'm unfortunately still struggling in the 'gaining weight' department, which needs attending to. I've reached that "oh that girl is so skinny" stage again. I have a target weight, and once I've reached that, I'll be happier. Plus I'll enjoy food without thinking about it. And with my hair done and make-up on, I'll feel better too. Because, yano, I'm vain.

Fourthly, I feel better.

Fifthly, there are SO many bigger problems in the world at the moment, and SO many people who have such worse problems in their life, which is why I feel so grateful that I feel better :)

Thank You!

And of course thank you to everyone who wished me well during that rather random blip as well - it means a lot to know people are thinking of you when you're not your best. :)

Updee-datie

I was discharged this afternoon and it feels wonderful to be out and free! I'm still on IVs, but the PICC line which was inserted last week is still holding well (*touch wood*) and I'll continue that treatment until Saturday.

I've been put back on some of my anti-rejection tablets (Prograf) albeit at a low dose and we're holding off the other (Cellcept) as well as some of my other tablets. I've got clinic on Wednesday to check blood levels etc. I've also found my hips are rather painful when walking (I am very aware I am managing to sound like an old lady here) so I need to have that checked out otherwise I may as well confine myself to a sitting position for a while, as that's generally when I'm not sore!

The plan is to take this week off college and rest up at home. Unless I begin to feel really energetic/bored and sneak off for a lecture or two but to be honest, at the moment, it's one of the last things I feel like doing.

I might get my hair done though. That only requires sitting after all.

Oh and in super exciting news, I'm now a Godmother! I was incredibly honoured to be asked and get rather excited every time I think about it :)

Septecemia - or "where I've been"

Where to start? Well, it's been a manic and crazy and slightly scary week- rollarcoaster in the best sense of the word.

It began last weekend, on Saturday night when we went to a family party and I wasn't feeling my best. I felt out of sorts- very cold and my throat hurt but after a couple of paracetamol I was grand again, if just a little bit tired. I was glad to see my bed at the end of the night.

And then came Sunday. I woke up at 6am getting sick. And I couldn't stop. I was shaking and in my head just needed to get back into bed. That would solve my sickness. And then it came again. Two hours later, it was the same story and my Mum found me, knowing something was seriously wrong. While I was back asleep she woke me to check my temperature. I felt so weak but told her I was sure it was fine. Unfortunately, it was 40.03 (104 something)- not good at all. We rang the hospital and were taken into the unit an hour later where I was hooked up to fluids and IVs.

I was pretty out of it (I mean, me in my right mind would never let someone *attempt* to give me fluids or IVs in anything but a PICC/long line) and just needed to sleep. I do remember trying to bargain with the Intern telling her I'd promise to drink a glass of water regularly if she didn't put me on fluids (a constant drip) though.

I was pretty much a puzzle to them. How I had ended up so sick so rapidly was anybody's guess. The diseases/syndromes/illnesses that were tossed about the first day included Meningitis, Tonsillitis, Pneumonia, Strep-something and a Gastric bug among a whole load of others which I can't remember.

For the medically speaking people, my CRP (infection markers- should be below 10-12?) were 193, although weirdly my White Blood Cells (Infection fighters) had fallen down. By Monday I was neutropenic meaning I didn't have enough White Blood Cells at all (Medic Speaky- they were about 1) so this meant it wasn't safe for me to be around anyone not gowned up in a sterile apron- so I was marked 'isolation'. I was taken off all my immunosupression drugs in a bid to get my body to start producing some sort of immunity again.

Tuesday (or Wednesday, not too sure on the days) the temperatures had settled to the mid 37 range (normal should be below 37) and i stopped spiking them. My mouth, however became very sore and it was too sore to eat. The couldn't treat it however because I was already 'taking too much stuff as it was', so I had to sit that one out. I was visited by the Haematologist who suggested I should start taking shots to encourage the bone marrow to start making WBCs. The Infectious Diseases doctor came along and he believed I had a Gastric Virus (something I disagree with). My Consultant spoke with my Dad and the actual diagnosis was that I had (have?? - pretty sure it's 'had' ) Septicemia, blood poisoning. And possibly Strep-Pneumonia as well? There's a lot of confusion still a bounty so I'm going to chat to the team next week and find out exactly what they'd document it as.

Luckily and so thankfully, I have improved. My CRP is down to 24, my White Blood Cells are now 2.2, my Neutrophils are 800 (I think normal is above 1500??), the temperatures have settled completely and I'm feeling a LOT better. I'm on and off my anti-rejection drugs and they're keeping a careful eye on my bloods. I'm still on IV meropenum, oral Azithromycin (I was on IV Ciproxin but it turns out I'm allergic to that one as evidence by a nice 'rash' reaction!)I'm hoping to be discharged early next week, all going well!

It just goes to show how quickly things can change. I just was incredibly unlucky and yet I know that I am so, so fortunate that I got treated correctly and in time too. I don't ever wish to be given a fright (or indeed, be giving others a fright) like that in a *loooooooooonnnnnnnnnnngggggggg* time! :P

Home!

I arrived home from Edinburgh this afternoon having had an *amazing* weekend away. We left Friday evening, having packed in a record 30 minutes (forgetting nothing except my hairbrush) and caught a night flight over. This meant we still had time to catch a pub/bar night out when we got there. We stayed on Princes Street which is as central as you can get (unless you count the Royal Mile as the centre which was a 5minute walk away anyway...)

On Saturday, I went to Gap and got new jeans. Gap are *amazing* for jeans and it's the only place I buy mine. Well, when I say that, I mean I bought my last pair there a couple of years ago and was so impressed by the sizing, that I went back and got a new pair on Saturday. So technically, yes, it is the only place I buy mine. I also decided, should Gap ever come to Ireland, I'm going to work there. The people who work there get to wear Gap clothes. And they're friendly too. Even the Gap clothes are friendly. It's like they talk to you, saying 'Buy meeeeeeee!'. Not that I'm obsessed with Gap. It's just good. Gapgapgapgapgap.

We also did the Edinburgh Dungeons on Sunday which I highly recommend!!! We saw street performers too but we had no sterling with us to give them a donation but they were actually really good! Each night we went out in search of different bars/pubs/places but invariably, we ended up at the same bar each time. I guess we're creatures of habit.

Also, as hard as we tried to find Scottish people, EVERYONE we talked to was Irish. Everywhere we went, walked, stood, sight-saw, gossiped, whispered, an Irish person was standing beside us. Heavens, we even met people who we were in school with.

I'll try and get a photo up soon as I realise it's been a while since I've shown my face about the place!

On the health front, I'm feeling really well. I've put on weight in the last couple of weeks which is a relief too. I still get coughing fits and cough when I laugh so while I don't think this is normal/healthy I'm hoping it will improve.

*OH* and it's nearly that time of year again where I go on my SKIING lessons. Oh that brings back memories....except the time I fell and got a concussion. I have no memory of that.

Cleaning

Ever since I had those nice new wardrobes installed, the rest of my room has been a bit of a mess. I make the bed every morning and that gives the illusion (if you keep your eyes away from the floor area) that my room is really nice and tidy and generally really cool. Unfortunately most people tend to see the floor which was a bit of a problem. So I began to tidy. I made the bed.

Then I organised my dresser and the drawers. Then I fixed the desk. And then I attacked the bookshelf. I'm not much of a reader anymore. Compared to the time when I would get through a few books a week, now I don't read at all. The last book I read was the last Harry Potter. I read the paper from time to time but that's it.

Tidying my shelves, I found books I read when I was a teenager, and ones I read as a child! I even found three unfinished books with bookmarks in them. I have a million books I've never read too. I flicked through each of them and if the writing type was large they were put in the 'dump' pile. If there were pictures in them, they too went to the 'dump' pile. I still was itching to throw a few more out so I judged them on their title or cover picture. The Hardy Boys for example was out. I don't even know how something like that ended up on my shelves in the first place... And now my shelves are all tidy and clutter free.

I even found two Virgin Mary paper-weights!

So now I've got even MORE clutter on the floor but it will get sorted. Eventually. And when I can't sleep at night, that's what I'll be doing.

On a side note, college has already become ridiculously hectic between lectures, after college stuff and social business which means this blog is a bit neglected. And so I've decided to blog once a week now. Probably Sunday. But that could change. Just letting you know!

Weekend :)

This morning I finished my IVs and went over to the hospital to have the line removed and have bloods taken. There was no traffic at ALL and I flew across the city. It would appear all the cars seemed to be stuffed into the Hospital car park however as it was full. I parked on the street and was in and out in an hour so it made no difference.

Today marked the end of my first week back to college. It was a tiring week but I think most of that stems from the IVs. Hopefully with a quiet weekend full of rest and lounging in front of the TV, I'll be ready to go on Monday.

I got around to doing my stationary shopping today (my all time favourite geeky thing to do), and will do my clothes shopping for the year next week. I got fabulous new wardrobes built in my room last week and in my opinion they are far too bare. The fact that they are very big has absolutely NO impact on this at all.

Whatsoever.

Check-Home

I was discharged this afternoon and promptly caught a taxi home! We had a bit of a panic moment last night where my PICC line wouldn't give blood out. Twenty minutes later, it was determined that there was blood coming back out so it was OK to go. I can't say I saw any difference but I am NOT complaining as the line is *touch wood* still standing.

I'm taking the IVs four times a day but only have one week left. And each IV *should* only take 30 minutes which is fantastic.

Incredibly and bizarrely my prograf (anti-rejection tablet) level came out at 25.1 today, making it extremely high. I have no answers to that puzzle. So tonight I'll take nothing and then in the morning start back taking 2mg and 2mg, which is half the dose I'm on now. It's a bit nerve-wrecking taking no anti rejection at all but whatever sorts it, whatever.

But I'm home! :)

Check-In

On day release/ out for hours so thought I'd post a small update!

Went into hospital on Friday and following three attempts, a PICC line now dangles from my bicep (tricep?? Can never remember which one's which). I'm on Tobramycin and Meropenum for a while. The hospital room is lush and equipped with essentials like a bathroom and flat screen telly with ALL the 18 or so channels- no complaints!

I've been feeling a bit sick with the IVs, and got sick yesterday but since then feel good. What really helps is the fact that I'm well-ish coming into this course of IVs which is a positive. The PICC line also ensures that I don't need to be jabbed for blood which is always good!

I've started watching Grey's Anatomy too - epic stuff!!! And that's about all that's going on right about now...

*Slight* Turbulance

Along the, for the most part, smooth life post transplant, on occasion bumps will be hit. A depressed immune system combined with a history of CF and transplanted lungs sometimes means little glitches arise.

I went to clinic yesterday where my lung functions were 99.6% (a personal best for me), a good x-ray was reported and all things look good. Except that I have some sort of chest infection as evidence by the 'not so nice' stuff I have been coughing up for a few weeks now. (Symptoms for the medical peoples= "green") Plus I've noticed I can't laugh or scream without coughing first.

But everything else looks super which is a great sign. However we agreed that there's no point in waiting until something serious comes up regarding this infection and so considering the smarties tablets (ciproxin) failed to have any effect recently the next step is I.V.s.

I will go into hospital tomorrow morning at silly o'clock and have a PICC line placed and begin as soon as I can. I will spend a couple of nights in hospital itself and hope to continue/finish the course at home early next week. It was my decision to go into hospital as I found the last course incredibly draining as each set of IVs takes 2 hours and must be done every 8 hours. This requires early starts and way too late finishes - ignoring the tiring effects IVs have on the body.

Although I was rather frustrated by the whole situation yesterday, I realise that, in reality, it's not so bad. The timing is just perfect (as I'm not working and college doesn't start until next week) and having IVs again just means I'm fuelled up and ready to hit the ground running when the course is completed. Two years ago I couldn't even run. Not that I can now, but the potential *is* there if I wasn't so self conscious about sounding like a clumping elephant on a treadmill in the gym. That's for another day....

Home-io

Just a quick little update: I saw Hungary, Austria, Poland, The Czech-Republic, Germany and The Netherlands over the past two weeks. We stayed in one hostel and then ran away the third day because we didn't like it so much. Thanks to work connections with one of my fellow traveller, we were able to stay in Marriott Hotels everywhere else. This really made the whole 'back-packing across Europe' a lot easier. Especially going to the whirlpool/swimming pool bit.

Berlin, we considered as 'sunken cost' and was the worst bit. It's hard to put a first on the rest, but probably Krakow or Amsterdam would be my favourites although they were all excellent.

So I'm home and have two weeks to myself before I head back to education land. This next two weeks will be spent running errands and getting myself together. In fourteen days time I will probably be questioning where the time went and analysing how I could have spent it wisely whilst staring at a ridiculously long/out of date 'to do' list.

Clearly You CAN Make This Up!

I discussed earlier, the Jessica Fletcher worthy mystery which unfolded yesterday regarding a young dying girl with Cystic Fibrosis, who it transpires doesn't in fact have CF at all. Now I really should have pointed out that there is no concrete proof either way and although it is plainly obvious what opinion I am of (as by my clearly bias writing), everybody should remain innocent until proven guilty.

I feel it important to echo others' thoughts on the matter however. Whether it turns out this 'Gina/Pepe' is real or a fake she needs some real help. If it's true and there really is indeed a poor girl struggling for life like she said then I really hope that she can find strength to get better soon.

And if she's a fake? I really hope that she can find the strength to change her character and outlook on life so that she can contribute something positive to the world in her life.

And if she's a fake (again)? .....I'd be reaaaaaaaaaaaaaaallllly worried about a little thing called karma.....

You Can't Make This Up

"Munchausen syndrome is a psychiatric disorder in which those affected fake disease, illness, or psychological trauma in order to draw attention or sympathy to themselves." (Wikipedia, 2008)

I've heard about this illness and read about it a little bit too. But I've never seen first hand someone who suffers from it. And technically, today I wasn't witness to it in person, but in one of the most bizarre cases I've ever heard of, I read about it on the internet.

The story begins with Gina, or 'Pepe' as she was known, a young girl in her mid twenties who has Cystic Fibrosis. Her condition, so bad, so dire she really, desperately needed a lung transplant, and yesterday. She was on and off a ventilator like a yoyo, she suffered every kind of man eating painful manifestation of the disease - from constant lung collapses to chronic bleeding. Her lungs were 'calicified' they were that bad. And really on the brink of death, a donor set of lungs came for her. Her surgery and subsequent recovery were as difficult as life beforehand, again suffering every possible complication that could arise. Last week, things were just not good, she was told her new lungs (now functioning at 24%) were useless and she needed a second lung transplant. She had had a high temperature for about 6 months, high carbon dioxide levels in her blood for longer. It was just not good. And yet she fought. And fought. And fought. Until tonight.

...When her blog was shut down. Every spec of evidence of her existance poofed into thin air. And then it became clear that the whole thing was the figiment of one's (or twos') imagination. The whole thing about as real as a tooth fairy with one leg.

Now a bit of backround: Gina or 'Pepe' was a friend of Paul's. Paul himself has CF and had a lung transplant last year. He emailed me a few times for advice about recovery and I received his group emails about his progress. He also read this blog. So when 'Friends of Pepe' started, on the blog list (as in a list of people's blogs) was yours truely. I don't really mind that sort of thing as as much as it's sometimes weird having strangers reading your blog, it's what helps to educate people about CF, Diabetes, Transplants etc.

Paul last year wanted to buy 'poor Pepe' a Nintendo Wii and sent an email around requesting money. I didn't give any because...I'm selfish really....plus I didn't know the girl personally...actually nor him come to think of it.

But anyway, they've scarpered. Now I believe Paul really does have CF, and has had a transplant, but Pepe doesn't exist. There is a girl involved but she does not have CF.

I guess that everyone has their cross to carry, but when I consider what I've had in my life (medically speaking) I'd chose that hand of cards anyday over having a disease that makes me WANT to be ill. Of course they may just be down trodden fraudsters either.

Incredible.

Update-y part 2

I mentioned before about my tacrolimus dose being switched to 4mg and 4mg. This meant that instead of bringing 2 tablets x 16 (for the 16 days of my trip) I now had to bring 8 tablets x 16.

So I rang up today and asked if possible to switch to 4mg and 5mg. That would mean 5 tablets a day. More practically it means I don't have to bring 4 boxes of one tablet. My tacrolimus level was 13.9 (I thought it was 15.9) so the dose is still lower than before and I'm willing to switch back to 4mg and 4mg once I'm home.

That is all.

Apart from the floods around these parts lately.

Random Spottings

Tonight I had the third of my birthday celebration dinners. For once I arrived early and had the pleasure of watching an unfortunate old woman use an escalator, clearly something she was not used to doing. She stood up nice and tall like she had a rod in her back, and gripped the railing tightly. She even had her eyes open wide, focusing straight ahead for effect.

I imagine for her it must have seemed like a rollarcoaster. Poor old woman. And then when her daughter went on to the next escalator coming down, the poor old woman was left stranded at the top crying out for help, not knowing how to get on board. Luckily the daughter seemed nice and cried back to her to 'stay where you are, I'm commmmmminnnnnnnnnnnng!' I honestly don't believe she needed to be so forceful in her shouting (ie, no need to deafen me as well!), 'cas that old lady was going nowhere.

I hope I don't ever get like that when I'm old. Because if people figure out I can't use an escalator they'll know exactly how to abandon me. And they may very well want to.

Update Time!

OK, what's new? Or old, but I haven't mentioned so technically new...

Healthy wisey/unwisey: I'm back on the old ciproxin for a chest infection-ish. That's ok though as I feel alright. My dose of my anti-recjtion tablets (prograf / tacrolimus for those in the know) has been lowered to 4mg twice a day. Although this is good, it means I now take 8 of these tablets a day. Unlike when I took 5mg twice a day (just two tablets as they came in 5mg size) , the next size tablet down is 1mg. It's all gravey except that I'm off travelling for 16 days so it increases the number I have to bring with me.

I have no voice at the moment but I would call this being horse as opposed to having a 'sore throat'. At least if I still have it tomorrow so I may get sent home from work. We went out to dinner on Friday night, followed by a pub, followed by random 'frolics' follwed by 'my house for a dvd' followed by no sleep. Well, I fell asleep at 6am, woke briefly at 7am and then slept until 11.30 am. Squished on a couch with three other people. Fun times!

I went and got my inter-railing pass for Saturday. We fly into Budapest and will travel across Europe taking in Vienna, Prague, Krawkow, Berlin and Amsterdam along the way. I have my MASSIVE back pack which makes me look like a turtle. I might note it has been suggested that I may be over doing it with all the non-stop travel and 'frolics' but life is for living.

So with ALL that going on, tomorrow sees the beginning of my LAST WEEK IN WORK! Yahooo-umbles!

Celebrations?

You know you're getting old when you get flowers for your birthday.

Or clearly it's a hint to start acting your age when you receive baby bibs for same celebration...

The Glass is Always Half....

...falling over! No seriously.

I began working full-time back in May but I never told my employers anything about my health status. I thought it would be easy to hide the daily pill popping, drug injecting etc. And to be honest, it was. But two things happened. I decided to go on multiple holidays (the most recent lasted two weeks), and my extremely generous employers let me do this. Of course, this meant I felt a bit guilty and so really try to give 100% all the time. And to cut a long story somewhat short, do not pull sickies or take any other days off. I work 9-5 and do over-time (unpaid I think...but I'm not grown up enough to work out what I'm being paid...) all to get the job done.

So seeing as I need blood tests every 6 weeks and review on average every 1-3 months (and that's just my set routine, which doesn't include any appointments for other scans etc going on) it was a tricky thing to work out how to do it. But masterful me, I came up with the idea of telling my employers I was going away a day earlier than I actually was, thus using these extra 'travel' days for my appointments.

I had it all figured out. Brilliantly. And then I began to get sick about a week ago whilst in Boston. Nothing bad, just....the start of a grumble in my chest. And it seems I've lost about 6 kilos since March (About a stone). So today being my 'travel' day, my clinic were pretty accomodating to get my bloods done but it seems the lung function lab now operate a strict 'Tuesday Only' opening slot for us clinic peoples. (Which seems ridiculous to me, so I shall sit back and complain about that to myself for a few weeks.)

Anyway, this didn't bother me, I just needed my bloods done. But then the doctor saw me, prescribed me an antibiotic and told me I *MUST* have my lung functions done in the next two weeks. I begged for September, but nope.

Considering I have been given the opportunity to travel across eastern Europe with friends for two weeks, having holidayed in America for two, been to France for one, all in this summer, I think my glass is most definately overfull and spilling over. And perhaps the teeeeeeensy price for this to pay is a few antibiotics and a few appointments here and there, and honestly, as hassle-y as it is to jumble around my schedule, and tell a few porkies I'll take it.

See....I'm not quite sure what I was trying to say or what the point really is. I'm like that, there's never a point!! I think perhaps I'm in one of my 'thinky' modes and remember back to the time where I wasn't off IVs for more than 2 weeks, tied to oxygen and simply couldn't plan anything.

Of course, I still can't plan anything, but that's for a different reason...I'm just too indesicive now. I think.

?

Excuse me

I was on vacation. I worked my way through Boston, MA., Newport, RI. and New York, NY with a couple of zip throughs through Connecticut - once whilst lost and the other whilst road-tripping.

Naturally the shopping was *amazing*, the food portion sizes were epic, and all in all everything (literally everything) was larger than life. And of course it was simply super to see our amazzz*droool*zzzing family :P

I'm now back into the familiar rainy damp 'summer' weather here at home, but well equipped with my new clothes. I plan on staying put for approx two weeks.

Pit stops are scheduled for Hungary, Poland, Austria, Germany and The Netherlands before September 1st!

Buses

I seem to always have a problem with the buses. They hate me. If I'm honest, the feeling is pretty much mutual so I don't really lose sleep over it.....much.

So this evening I was going out with a friend. Where we were to meet meant that I could either drive (keep in mind, I only need to spin around on my feet and I'm lost) or take the bus. I opted for the safer option and went with the bus.

So I wait at the bus stop and four buses proceed to drive by, none of them stopping. Cursing the buses with my fist I began to wonder what on earth was their problem.

The fourth bus driver then raised his arms up in a 'what do you want me to do?' fashion. Eh, stop perhaps! Not only had I my arm out, I had my thumb stuck up in geeky fashion too!

And then I look up. At the bus stop. Which turns out is merely a speed sign. (50 k/ph if anyone cares) Ooops.

The buses probably thought I was an idiot or someone who was very concerned about the speed of buses.

And so I walked off to find the actual bus stop. And life goes on....

Ooops

It's official, Ireland are in a repression again. I was born when were coming out of the last one and my only understanding of it comes from a clip made in the mid eighties. It was filmed outside the US Embassy where a queue were waiting to get visas to leave. Asked why they were leaving a girl said 'I have a degreee in Law and all I can get is a job in Mac Donalds'.

Now, I wouldn't be complaining if I had endless Mac Donalds food at my finger tips, but maybe with a law degree I wouldn't be so McHappy about it.

So all of Ireland pretty much left the country for work and for jobs back then. Except for the farmers.

I hope they bring back easy Visas for my generation because I'm not living in a country where I'm no longer allowed to live spending disposable money!!!! What a waste!

Rattling Bones

I thought this posted during the week:

So I'm now into year three of my new life! This past year has definitely been the best year of my entire life. I got to do new things, maintain a good lifestyle and just really thoroughly enjoyed myself :P


I started college (full time) and only missed a couple of days. I went skiing, I joined the gym (I'll go back someday...), I got my driver's licence and drove my new car around (and crashed, too), I did my second mini marathon, I went on SO many nights out on the town I can't even count (which is a change from before), I've been able to do things without planning and I've been able to plan things too, I've got a FULL TIME job and I'll be going travelling (as in not a holiday) very soon too.... and I'm sure there's a bazillion more things I could add but I can't remember them all...


Today I went for my dxa (dexa?) scan to see how good/bad my bones are. The last time I had this test done was three years ago. I'm now on permanent steroids, drink no milk, eat no yogurts or cheese and do not a whole lot of exercise.... Looking for bone problems anyone??


So the results, as expected, were a lot worse than three years ago, with a lot less density in my bones. BUT I don't have Osteoporosis yet and am only borderline Osteopenia (pre porosis). I'm not sure if that's correct as I thought I was Osteopenia-ac last time but we'll see. I sneaked a look at the screen and my hip doesn't look too white so I don't think that's right! Oh well!


When I have a chance I might pop in and speak with my pharmacist as my taking of calcium tablets is non-existence, I'm useless at it!

Two Years Ago Tomorrow...

...was a REALLY hot Saturday and one of the most bizarre of my life.

The day after that was probably the scariest.

And it's been two years already....

Bonjour!

I just got back from my trip to Vichy for the European Heart & Lung Transplant Games which I was competing in. (The grammar in that sentence looks a bit funny to me...) I swam and ended up getting a Bronze, Silver and Gold medals for my panting.

Vichy was really nice and the pool was an Olympic size 50 metre which was a little bit daunting at the practise and training session. Especially considering I haven't been swimming since Christmas, so it really seemed VERY long!



Even the diving platforms seemed VERY high the first day! It was a spectacular venue though, all outdoor and in the 35 degree heat it was stunning. I managed to get myself quite a bit sunburned at the practice session which wasn't too wise but I wasn't thinking much!



Luckily the races and competitions started at 8am so before the midday heat. Our morning was even quite overcast to begin with as well, so it was grand.



As always at these events, it's great to see the true athletes perform as it shows what IS possible. And if I wasn't ever so lazy I'm sure I could get some muscle on my arms and my bum into training for the next games as I was pretty much relying on my stroke and ability to sprint yet again which really hurts the next day!



This guy seemed to follow me everywhere and took the whole games EXTREMELY seriously to the point of ridiculousness. He did seem to do very well though so perhaps his technique is one I should employ. Beside him is one of our supporters...

The Lisbon Treaty

....and we voted 'no'. I use the term 'we' lightly as I didn't actually vote. I couldn't understand what the bloomin' heck the thing was about so rather than vote for the sake of voting (and risk picking the 'wrong' choice by accident) I didn't vote. Actually I did intend to vote late yesterday evening, but I was too late by the time I had my mind made up.

And it would seem with the 40 percent turnout that I was not alone!

I would catagorise the grouping of votes in the following way:

The group who understood the Treaty and voted 'Yes'.
The group who understood the Treaty and voted 'No'.
The group who didn't understand the Treaty so voted 'No' so that nothing changed and felt they should vote for the sake of voting.

In the first two groupings I would say there was a higher 'yes' support but that the 'no' group picked up a LOT of votes from the misunderstood.

See, I can talk politics too from time to time....

Now if I could just understand what it was all about I would be oh so much the wiser.

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.

*silence*

Yikes, it's been a while-eo. I'm off the IVs about two weeks now and *touch-wood* am doing really well. A positive sign is that I haven't even rebooked an appointment back at clinic and am going to try and give them a break for a while!

I'm also working 5 days a week for the summer, 9-5. This means I leave the house at about 8am to do the 30 minute drive so it's a world and time of day I'm not overly familiar with but am getting there (and getting there on time!).

My life, revolving around a series of countdowns (I countdown EVERYTHING) means I have already worked out that I've done two weeks of work, which means there's only 10 weeks left. At least I can count that on my two hands. I remember when I was in fourth year, I counted down to the time I had left that year and then the number of days until my graudation, two years away!!! So needless to say each day I go into work, I count down the 8 hours I'm there...

I do actually like work but am definately not ready to join the working world fulltime yet. Mentally I find it's just so claustrophic coming home at nearly 6pm and if I don't go out (which funnily enough has only happened two evenings so far) means by 10pm I'm getting ready for bed, to go to sleep, to get up and do it all again. I'll do it some day but I'll enjoy my next three years in college while I can!

So anyway, that's why there are a few cobwebs around here....

Oh and I survived the Mini Marathon, finishing the 10k in 1hr52mins. That's 6 minutes faster than last year. Now if I could just get my Mom to stop stopping and gabbling to people FOUR times and teach her to jog (although she is an impressive power walker) a little bit, we'd do great.

But sure not to worry, I'm going to jog/run it myself next year anyway, because I reckon I could SOOOOOOOOO do that....

Ooops

It's the Bank Holiday Weekend and gloriously hottt and sunny and boootiful. But I have a mere 10k (6 MILES) to walk tomorrow for the Women's Mini Marathon. Unbelievably I only realised this on Thursday or Friday, it was 'ages away' for so long.

I survived it last year, but in this past year have spent everyday driving. I made a last ditch attempt at 'training' when I brought the dog for a five minute walk and then walked down to the shopping centre. Sore legs afterwards probably suggests it's just a few weeks too late! Yikes.

Sex and the City...

*no spoilers*

But, I went and saw it tonight. I never followed the series, but would watch episodes here and there, mostly late at night, in hospital, when I should be studying for exams, when I should be sleeping the night before exams, when it was cold outside, you know, wherever, so I knew who was who and the jist of the story!

The cinema was probably 99.99999% girls- the only boys being poor boyfriends dragged along. This made it funny, as there were a few reactions, which any normal girl makes whenever something scandalous happens/is said, but put 100 girls together and you have 100 girls making these same gasps all at once...

The movie (I don't know why I don't say 'film'...) was good, but just very like a LONG episode. It wasn't bad, but it wasn't really 'film' quality. I mean honestly, without the background of the series, it would not have made it into the cinemas. But it was ok! Very....thinky type film... although that's quite possibly just me, as I always think profoundly, and try to apply anything that could be remotely seen as a metaphor for my own life! - which requires a lot of thinking and mulling over right now - well actually it doesn't, I just like to analyse things...

And I feel *so* much better for getting that all off my chest.

Ahem

*Edited to take my email off the public interweb space*

In other news, I'm working now. It means getting up and leaving the house by 7.45 each morning. I don't actually live at that hour, but am doing so now and honestly, it's not so bad. There's never much traffic around and it's kind of peaceful.

This does in no way mean I will make my 9 o'clock lectures next year. I think I made a grand total of 9 last year, so can't go changing a habit of a lifetime!!

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.

Hmm...

I went shopping today with my Mom. She was busy getting my stuff in different sizes because I am so awkward and every shop has different sizes. Interestingly I found my shape is much more balanced at the moment (as opposed to my size 6 waist and 10-12 top which used to be the case last year- eeek). And this is despite having lost 4kg (over 8 pounds) in the last 10days- spectacular.

So she's busy buzzing about. Then she makes a turn around the aisle too soon and bumps into a woman. She notices the woman carrying blouses, and she immediately apologises. It turns out she had walked into the mirror.

I think I need to watch her from now on.

The PICC line has been pulled out which is great. It was probably as long as from my hand to my shoulder, so realllllly long. They used it to get bloods first though and drew 20mls, as I just sat there, arm relaxed and chatting. I don't think that will ever happen again soon. My lung functions are at 98% (still can't get that extra tiny 2% to reach the 100 mark yet!!!) so fingers crossed that's it with the IVs.

I think the doctor was trying to make me feel better about myself, but he did say that he's telling all the CF people who come to clinic now (pre transplant) that they are to expect to have IVs at some stage post transplant, that that doesn't finish. They won't need them all the time like before, but they may need them once every while. I think in the same way that I believe all people with CF should be warned that waking up after a lung transplant does not give the immediate feeling of 'I can BREATHE!'. You notice it more in action, by way of talking and walking, but I found it very worrying when I wasn't suddenly able to take a 'magical' breath.

Anyway as I say I do believe he was trying to console me as I'm the only one I know who's needed IVs post transplant, but he has a point that sometimes if you want to get decades out of new lungs, then that all comes with the price tag. Either way, I'm happy. :-)

Last Dose

I'm about to clock on my last set of infusion pumps with the aim of being told I'm finished tomorrow morning at clinic. I might take a dose tomorrow morning on the way to clinic but probably won't.

I've come to the point where I feel I've reached the optimum results from these IVs. While my chest has improved, the side effects of the drugs have really taken their toll these past couple of days. I suppose putting something which smells like cats' wee (that's actually a FACT not an opinion!) into oneself three times a day when I've been so fortunate not to need to do this regularly for nearly two years has just been a bit much for me to handle. It harks back to the fact which I find amazing: that the body has the ability to adapt so well to something, such as taking IVs pretty much full time for nearly three years (excluding the regular IVs the 15 years before that), as I don't recall ever having much stomach illness while on them before.

I haven't much of an appetite since the weekend, my mouth is in bits from one thing and another, and last night I actually got sick. Getting sick when you've had a transplant is a strange experience as so many of the nerves in the chest-ish area are now gone and so there's no real gag reflux as such; and there's no real 'feeling' of 'OMGOSH I'm going to be sick!'. It just...happens.

I hope to have the weekend to recuperate and rest as if I'm honest, I really didn't do enough 'resting' whilst I was on these antibiotics. My slaves should have done their job better really.

Hopefully this will be the last course of IVs I'll ever really need. Hope all are well! x

G'day Steo!

...Who is in Australia.

I had a bit of an emergency at the weekend when I realised that I was seriously short of bits and bobs for my IVs. Typically it would be that I discovered this on Saturday evening. I rang the hospital to see if I could have my antibiotic more concentrated as I didn't have enough mixers (saline) to put it into. They couldn't tell me, so about 6 or 7 phone calls I got the go ahead that I could do that.

This morning I went across and got my dressing changed and I got to see the line for the first time. It's a lot thicker than I thought, but they kindly put a 'window' dressing on so I can watch it all I like now. It's a bit throbby since, probably since it's been touched but it's a lot prettier looking, although not quite the 'latest fashion' yet I don't think.

The good news is I'm set to finish the course on Friday (as I'll be unable to give IVs realistically from Monday for work reasons) but the bad news is that it's been hinted that the line will stay in place after this. I have NO veins for blood and it's been mentioned that in case I need more treatment in a few WEEKS time, it'll make things easier.

I've had a very sore throat (to swallow) since yesterday so maybe that's a good decision to leave an accessible vein, accessible. Other than that I'm in slow motion flying form!

Steo: the 'stamping the foot' mechanism was an involuntary twitch I used to have actually, which manifested itself when I was annoyed. Granny's magic sock thing was pretty cool too. For everyone else: this is the Granny whom I used to cheat at cards when playing against, taking advantage of her slight memory loss at the time. I was a good child really and my tactics were highly ingenious!

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.

Sailing Along

I really have debated about whether to post this or not as I really do NOT wish to jinx myself. It being Friday, and the end of the week, I decided I should probably break the silence.

I went to the radiology department on Tuesday afternoon, where they (about 6 people!) did an ultrasound of my arm, found a vein and inserted the PICC line. I wasn't knocked out as hoped, but they used two bee-sting shots which completely numbed the area. In hindsight (despite the silent tears) they did the job very well, and having been sedated and wooopy wooo for an entire day would have been unnessecary.

I can't really feel anything when the drugs are going in which is fantastic. Because I take three infusions in total, it takes about 2 hours to complete each round, which I then do three times a day. I found this incredibly tiring for the first few days as it means going to bed at about 1-2am and getting up again at for about 8am. As well as this, one of the drugs (Ceftazadime) makes my eyes very heavy so it feels like I could sleep whilst taking it. I think I'm getting the hang of it now though and am employing different tactics to pass the time!

I won't post any pictures as I wouldn't want anyone to feel "the room spin" or cause anyone to faint (you know who you are!). I'm having the dressing changed next week so it will look a lot less dramatic then. I'll post a good diagram of what exactly a PICC line is, so to further educate everybody!




It goes into the arm and passes all the way up and ends just near the heart. My line has two bungs, one which is totally redundant but I think I could use it for bloods if I needed next week.

A normal cannula (or venflon) has the bung part and finishes at about the 'enterance to vein' part of the diagram. I think for this reason, they always succeed in collapsing my veins as it's a bit like them 'slipping out'.

Blog Away

Going in tomorrow to attempt the picc line. I signed the consent for the whole yoke today (since I'll be sedated and all that malarky) and have my slot in theatre for 10am tomorrow. My mom's coming with me to look after me (and my stuff!) so she can bring me home after. Probably a good thing that I didn't get done today as I drove and probably wouldn't have been up for driving home again.

I won't be on here for a few days, but should be back by the end of next week. Take care of yourselves :)

Saturday

Today I had the lie in that I've been waiting for since my exams, and it was nice! My anti-rejection tablets were a *little* late however. But the sleep- so nearly worth it.

We had our class party last night which was mental too.

This evening I've been sorting out my room which contains a forest of papers which I am S.L.O.W.L.Y. getting rid of. Among them I found notes for projects which were due when I was in first year two years ago, notes for school exams, two letters that should have been sent a LONG time ago and millions of bank stuff.

And among the 'bank letter pile' I found a loving letter from my credit card peoples. In companies the person who sends the letter usually concludes it with a photo-copied signature after the 'sincerely' bit. Probably because they didn't actually write the letter, but rather their secretary did, and so to avoid the whole 'fraud' issue, they write it once and then it can be put on everything.

This letter was dotingly signed 'Customer Service'. What a funny name.

Vein

Yesterday I went to the hospital to get my cannula (line that goes in to attach drip to) inserted and begin my 7 day course of IVs (Meropenum and Ceftazidime three times a day for those with medicy speaky). The doctor (one whom I didn't have much time for before, but was actually good today) searched for a vein (read: Didn't go looking for the worst vein, or a mediocre vein which might/might not stay up: but the best vein with the best chance of working) to insert the line into.

After much a treasure hunting, he found one in the side of my arm, half way up. We went with a blue needle (smallest size I think) and it was really promising. He got blood and it flushed with water well. It tingled a little bit but it was good.

I was then handed a GIGANTIC bag of paraphernalia and sent on my way with instructions on how to make up the potions and how to give them, seeing as I didn't get my first dose in hospital.

So I got home, the area was a little bit sore but again it was OK. I decided to wait until 4pm to do my first dose (making it midnight for the second, being a good 8 hours). When I went to make everything up, I did it well and highly hygienically and sterile-lly. But then I couldn't attach anything because of the angle of the line (needed two hands, so kind of like trying to lick your elbow antics).

Mum came home and put it in, and two MILS after my 10mil flush of water it burned. And stung. And was impossible. I said this can't be happening- I haven't even had any drugs yet. I told my Mum to leave the room as she was watching me intently. So she did. And I tried again. And I just couldn't take the pain. So I cried and bawled. I knew that if I couldn't get 3mils of a flush in, there was no way I could tolerate 20mils of Ceftaz being pushed in either (one that *can* sting even when everything is fine).

So Mum came back and we attached extra tubing on and tried to see if it would make a difference but it didn't. So I took the cannula out. As I was taking it out slowly, there was one point where it seemed to connect with the vein, making it bleed, which makes me wonder if it just needed adjustment. But I wasn't a medical person who was able to judge that and I wasn't going to start pushing more fluid in to a line that was now half pulled out.

So I got no drugs. I'm taking the weekend off and going in on Monday to try a picc/long line instead. These didn't work when I was younger but they may well do so now. In the meantime, feeling a LOT cheerier than yesterday afternoon, I'm going to enjoy this free weekend.