Saturday, August 16, 2008

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.....

Friday, August 15, 2008

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 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.


Monday, August 11, 2008

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.

Sunday, August 10, 2008

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!

Wednesday, August 06, 2008


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...

Friday, August 01, 2008

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.