more news from jaan to alice to everyone else...

hello again. i was at the hospital with jaan today when some of the doctors came in and said "we have no idea why you still feel sick so we might give you some prednisolone and see what that does". they think jaan might have a fungal infectional in his lungs - which is weird if they would give him pred. for it cos the internet told me that if he had a fungal infection he shouldnt take that sort of drug... - but hey. we'll see. i think the intern's exact words were "we are clutching at straws now" so that instills enormous amounts of hope in their future diagnosis. i think it will be good when we get the next lung function results back because then we can see if its cf sick (he says he still feels cf sick) or sillyness with his throat or something else...

okay, so if jaan does go on this inflamitry steriod prednisolone, it could have side effects. the most common is mood swings and "changes in behaviour" so that should be fun... i think we should all avoid him for a bit. well, at least do what he says for a while... (dont tell jaan i said that). there are also other icky side effects but ill elt everyone know them when/if they happen. and if he wants everyone to know.

but mr. jaan is happy. ive had comments from others saying its good to see him so chirpy and "himself". i like it when jaan smiles a lot, and he is at the moment. again, its the "acceptence of the feeling sick" he says that is making him happy. its hard to explain... especially when its not me who feels this way. ill let him do that on his next entry of his very own.

anyway. thats the next update. i hope everyone is well and happy.

love alice

update

hello everyone, its alice again. Jaan is still in hospital and will most likely be there til the 3rd or 6th, depending on how well he goes with the aztreinum. He seems a lot happier than he has been for the past 2 or so months, so thats positive. he tells me he's getting used to feeling sick all the time and cant expect to miraculously get better in the sapce of a week like he used to. i feel like his attitude is a step forward psycologically and a step back phyically, but its not like he's not trying to get better. double negative... he IS trying. it will just take a bit longer than it used to. but its good to see a happy Jaan. im not sure what else to say. i just thought i should write something to keep the poeple who read this blog up to date. so there.

love alice

alice is taking over jaan's blog...

hello again. the antibiotic is Aztreinam. its a strong one, but here's hoping that it kills whatever infection the cef didnt want to get rid of. jaan will probably be in the Royal Adelaide for about 2 weeks for the full course of the Azt (we're on abrieving terms now...) so you'll all have to talk to me for a bit. sorry. im a bad speller and my writing isnt as witty as jaans, but hey. tough luck! heh heh!

love alice

another quick update

its alice again, another quick let-everyone-in-on-the-deal post. i lied about the antibiotic starting with the letter S, it starts with the letter A. again, i dont know its actual name. that might be in the next post... anyway, jaan has to do four one hour iv sessions with this new drug, 6am, 11am, 6pm, 11pm. he will find out in a couple of days whether he still has mrsa. if the test is negative again, this will be the third test where it's absent from his body, therefore he cant use any of the side bathrooms and showers. which is pretty funny because one of the bathrooms is being re-tiled so he has to use the public toilets and go without a shower for a few days - unless he comes home, which i recommended to him. but good news about not having mrsa though! ill sign off for now. bye!

love alice

hello. my name is jaan...

no, its not. its alice! filling in for jaan and the writing of the blogs and the what-not. this will be a short one to fill everyone in on what's going on. jaan is back in hospital for a week or so because the doctors told him he had to. i mean, come on. 5% more in lung function? talk about annoyingly crap! so they're putting him on a new antibiotic that starts with the letter S... thats all i know. ill write another short blog soon because its fun to pretend to be jaan on his blog. "hello, im jaan..." and also i will let everyone know whats going on. yay! love alice.

my rating.... lets say 7.5... ha!

Iv's no more

Well, that's not entirely true. In fact, it's none-true. I got up this morning at around 9:50am to the sound of my mobile ringing. I decided that I wasn't going to get there in time to answer it, so I left it. When I finally decided to check who called me, I remembered that I had lung function sometime in the morning. It turned out that it was at 9:20am, so I had missed it by quite some time. Oh well, shit happens.

So I got my crap together and drove to the clinic. Even though I had missed my lung function appointment, they were able to squeeze me in. I did my test, and out the results came. Not as good as I had expected... Now, we all remember that my lung function was a record low 45% when I started my antibiotics 2 weeks ago. Well, today it was a whopping 50%. 5 whole percent difference. That's all my lungs have decided to improve by. I can tell you I wasn't all that impressed. That's only 1% higher than my previous low. Pretty crap to put it frankly. So the docs decided that I am to stay on the antibiotics until Monday. It probably won't do much, but it can't do any harm.

So that has been my day. And to top it all off, my throat is now sore again. I woke up this morning with quite a tickle, and now it's sore, dry and inflamed. Woot. AND my nose has been runny all day. These aren't great signs... let's all hope I haven't caught another bug. That wouldn't be good.

Anywho, I'm feeling crap so I'm not going to write any more. One last thing - for those of you who are in Radelaide, try and get to the Exeter on Monday nights this month to hear some lovely tunes from Cookie Baker. It will be good. I promoise.

Rating: 5

One week on

I came home from the hospital on Friday. As good as it is to come home, there are parts of hospital that I miss and are nice. For one, Foxtel. I forgot how great it is to wake up to Simpsons during the mornings on the weekend. So theraputic. But on a more serious note, being admitted for the week really gave me time and a place to completely tune out, rest and concentrate on getting better. Since you are in a hospital ward which is very boring and sterile, it's hard to relate to the outside world. While this may seem depressing, the distance and separation you feel from the outside world actually makes it easier to think about nothing and to completely rest, both mentally as well as physically. Being at home, you have little niggly things that are on your mind, such as keeping the house clean, cooking all your meals, just normal stuff that may not be such big issues, but when your sick, it's nice to not have to think about them all. And being in hospital means you get waited on hand and foot. Another little perk... But after a week, I was ready to come home, so here I am.

My health has definitely gotten alot better since I was admitted. My lungs have cleared up enormously, and I'm no longer having fevers and chills. I still get quite short of breath, but that's only because I don't have my fitness back. I'm pushing myself to go on small walks each day to try and build that up. Slowly but surely. This virus that I had really knocked me back. Never that much before. So it's going to take a bit of time and effort to get things back to what they were. It was actually a bit scary for a while. I'd never been that sick, and to feel like you have absolutely no control over something you once thought you did is a big challenge. I'm hoping that I dealt with it alright, but time will tell.

Aside from health stuff, not alot has been going on. I haven't really gone out or anyhting, for one because I really don't have the energy, but also because I don't want to ruin the good progress by going somewhere where there's smoke and crap like that. Oh, there are a couple of things actually. Hehe, silly Jaan and his forgetfulness...

Last weekend, Sia (a singer from Adelaide who lives in London) came down to Adelaide to shoot a film clip. She's really taken off in the States now, so I guess another single was calling out to her. There were about 30 extras, all running around in crazy costumes doing crazy things in a park in Stonyfell, and it was such a blast to be a part of. The song is Sunday, so keep an eye out for it when it gets released, and those of you from Adelaide just may see some familiar faces... So that day was very fun and interesting (from a filmmakers point of view watching them shoot the clip). That was followed by a night of catching up and drinking at the Exeter. But since I really wasn't feeling that great, I was only out for about an hour before heading back to the hospital.

The other bit of news is that my friend Ben who moved to Montreal a year ago is back in Adelaide for a few months. It's good to have him back and to have him staying at The Fortress is a nice touch as well (that's what our house is called now). Friends are nice to have. Espcially when you come to the realisation that you have no friends in your home town because they have all moved away overseas (by friends, I mean those REALLY good friends that you don't have to organise things with. You know, the ones you can just pop over, say nothing to, do nothing with and then part without feeling like you have to apologise for being boring. Not to offend the friends I have here, all of youse are awse. But everyone has those couple of people they are really close with, who are the true meaning of a best fried. Bah, nuts to you if you don't get me).

So that's about it. I have an audiology appointment today (because Tob, one of the antibiotics I'm on, has a nasty tendency to make you go a wee bit deaf), and I think that's about it. Thanks for all your comments and sms's'ss. It's nice to know peopel are thinking about you.

Rating: 5.7

What I'm listening to: Red Hot Chili Peppers - Stadium Arcadium

Details of clinic and PICC line

nice and clean
Originally uploaded by jaanus83.

Sorry I didn't write yesterday like I said I would. Although I think George was the only one who probably noticed... Anywho, I had clinic on Tuesday and as I said before, it wasn't the best news I could have hoped for, but I wasn't really expecting anything else. I'll go through the whole clinic procedure for those who may not know what a 'clinic' is.

I made it to clinic without passing out in the car, which is always an awesome way to start the day. Got to the clinic and made my way to the scales to weigh myself (the first part of the clinic). I was 72kg - a loss of 2kg; that's in two weeks mind you. Not bad (if I was a tad on the heavy side). However, since my goal is to always gain weight, not the best thing. I haven't really had much of an appetite at all lately. The thought of any food other than cucumber, lettuce (basically water) makes me feel really queezy, so no real surprise that I had lost some weight. Also with infections and stuff, a bit of weight is going ot be lost with your body fighting it. You'll be glad to know that since then however I have got my appetite back a bit...

So lost some weight, as I expected, then I made my way to the seating area. I saw Craig, or Bones as he's called, who is an awesome cf guy who by now must be in his 40's. Great guy and good for a laugh. We discussed how there should be a lounge there for cf's while we wait the hours to see the doctor. Except I don't see it being very easy to grab a spot on since cf's aren't the most considerate people you meet - especially if they are in clinic and are feeling shite.

So I sat there for about 15 mins and then I was called into the lab where they do your lung function. Now the way they measure your lung function is quite simple - but also a bit of hard work, especially if you're having trouble breathing at the start. There's a computer, a big box with a big plastic hose coming out of it, and a mouth piece on the end of that. When ready, you take a big deep breath in, preferrably the biggest you can, then you breath out as hard as you can into the tube. Once the initial force of the breath is out, you have to keep breathing out until there is absolutely nothing left in your lungs. Then there is the obligatory coughing, spluttering, redness in the face, headaches and general crapness. Well, when you're well there isn't so much of that. But with my form lately, I'm genuine in saying that I was lucky not to pass out. There are usually 3 breaths done and the best gets the tick as the one the docs use.

So my results were as follows. 45% for the FEV1 (which is your ability to exhale air in that first second (hence the 1)). 74% for my FVC (full volume capacity). And finally 17% for my MMEF (which is your small airways). The MMEF doesn't really mean alot with cf since your lungs are screwed anyways. The one the docs mostly look at are the FEV1 and the FVC. The lower your FEV1, the more blockage you have, which is why I usually only refer to this one when I'm discussing my lung function (and a big cheers to co-chief Kenny for giving me all the definitions...).

So now that lung functions are done, I go back to the seating area and chat a little to whoever's there, but not a whole lot since I can hardley breathe from the lung function. Finally, maybe half an hour later, it's time to see the doctor. They bring you in their little room, talk about how you've been feeling, which in my case is that I can't breathe and nothing's working, and discuss what options to take from there. So since I've been sick for quite a while, and my lung function has decreased more than 10% in two weeks, it was decided that I better get admitted into hospital for 2 weeks of iv antibiotics.

My PICC line (basically a drip that is designed to last up to 12 months) was scheduled to be put Thursday (today) and so I got dropped off and went to radiology. The procedure for a PICC line is a little bit gruesome, so if you don't wanna know the details go to the next paragraph. You first take off your top, lie on the table with the arm you're getting stuck laying out to the side on a board. The doc then gets the ultrasound machine and searches your arm for a nice juicy vein. Once they find one, they get all steralized, clean your arm up all bacteria-free like, and get ready to start sticking you. The order of the steps vary from doctor to doctor, but this is what they did today (and coincidently the way I prefer it). They start with a local anaesthetic at the point where they are going to put the drip in. If you haven't had a local before, it stings like absolutely buggery, but then leaves you with a nice numb pin cushion. They then get the ultrasound on your arm again to find the vein and get a big needle to make the first hole into the vein. It's cool to watch because you can see the needle entering the vein wall on the ultrasound. Way cool. Once they get the needle in, they thread a tiny metal tube up your arm. You can't really feel it, but if you concentrate hard enough you can feel the pressure of it moving inside your arm. Now a little more local for the scapal, which is used to make the entry hole bigger. After this, they get a really big plastic needle canula thing, about 3 inches long, and push that over the tube, into the entry wound and into the vein. This part always hurts a bit. The pressure is quite tough on the arm, and the feeling of it trying to be squeezed into the small hole in the vein is quite unusual. Think of it as, well, someone trying to shove a big plastic tube deep into your arm. Often this is the part that causes the most blood. Today it was quite excessive... I couldn't actually see it, but I started to feel something very warm drip down my arm for about half a minute or so. And the blood that comes out of a PICC line is very dark red, very thick and literally oozes out. Nice. Once in, the metal tube is removed and they replace that with a plastic tube (which is the PICC line) and thread that up through the vein and all the way to your heart. The big plastic needle canula thing is taken out and you are left with a nice blue tube entering your arm and worming its way to your heart. To make sure it's in the right place, they take a live x-ray to see where it is. Lastly is the dressing which is pretty uneventful...

So there ya go. That's what the last few days have had in store for me. My arm at present isn't feeling too bad - just a very deep, dull pain in the muscle. Kinda like if someone were to punch you very hard in the middle of the muscle. I get admitted into the ward tomorrow sometime, and I'll be there until early next week. If I'm lucky enough, I'll be able to go home next week to do the remainder of my IV's at home. Let's hope that nothing is seriously wrong with me that would want them to keep me in the ward.

Rating: 4.9

What I'm listening to: Sia - Colour the Small One

Update coming your way tomorrow

I wanted to write something tonight, since I had my clinic today, but I'm a bit tired to go through all the details, so I'll do that tomorrow. It's not the BEST news I could have hoped for, but I'll elaborate more tomorrow.

Sleep well.