The day after boxing day...

Ugggghhhh!!!! I'm trying to load a new photo and it keeps on turning up as a brown square?!?!? I've uploaded it 3 times now and I give up! I HATE it when computers don't work dammit!!!

Anyway... Christmas was very nice, better than I expected. Went to church in the morning with my parents and grandfather to my old church. I don't go there anymore but my parents still do. Haven't been there since Xmas 2005, except for a wedding and a funeral in between. was quite a weird experience with my disabled arm and portable O2, but I'm glad I went. After that a whole bunch of family came over. My sister, 2 cousins and I watched Red Eye on dvd, not really a christmas movie, but ok I suppose. Then came all the eating!!!! Turkey, lamb and gammon with salads. Everything served cold, with Ice cream, fruit salad and strawberry yoghurt pudding for dessert... YUM!!!! Still eating left-overs...

Yesterday and today was just spent lounging around the house, eating, building puzzle and playing cards. Not much happening... So I don't have much to write about... the weather is great, perfect summer day, and I wish I could go for a swim at the beach :-( Better luck next year!!!

10mins later... I managed to upload a different picture in the 'about me' section... it was taken on xmas day!

'Twas the night before Christmas...

Tomorrow is Christmas!!!!!!! Looking forward to it, although I wish I could have the same level of excitement that I did when I was little... I guess it's just part of growing up, but Christmas just seemed that much nicer then! This year it's a bit sad that I can't breathe properly (although a lot better than 2 weeks ago!) and don't have anyone special to share the day with or watch Love Actually with (my favourite xmas movie, but you have to watch it with someone special!), but I do have things to be thankfull for... having the most amazing mom and dad and sister ever (even though they sometimes drive me mad), and some good friends etc. I feel positive that by next year I will have my new lungs and having an awesome christmas!!!! That would be so great...

The last 2 days have been very nice. Just watching movies, eating, hanging out with my family etc. Seems like we're going to have a rainy Christmas tomorrow! I love rainy weather, it's not something we get very often!

Healthwise I'm doing good, almost NO mucus, it's soooooo nice! The thing i hate most about having this picc line in my arm though is not being able to do anything to my hair!!!! My left hand can't reach my head! So I can't wash, brush, or even tie up my hair! And I hate not being in control of how my hair looks! It's frustrating for all of us when my mom or sister try to do my hair, because handling curly hair is hard enough when trying to do so by yourself!!! At least it's washed and as ready for Christmas now as it's ever going to be...

Hope everyone has an awesome amazing Christmas tomorrow filled with love and remember the real reason we celebrate it.. it indirectly marks the beginning of our eternal life!!! So much better than just a lung transplant!!

Thank goodness it's not this time a year ago!

Just a short post...

Last night (or early this morning to be exact) a year ago I was rushed to hospital in an ambulance at about 02:30 AM because I was finding it so hard to breathe. It was the closest I had ever come to dieing, at least that's how it felt anyway! When they loaded me in the ambulance my O2 sats were 36%! The paramedic thought the machine was broken... (if I were able to speak at that moment I would've politely pointed out that the machine was in fact working, and that I could definitely feel the 64% oxygen that was missing from my body!) Luckily in the end I survived after some IV's etc, just lost some serious weight.

So even though I'm on IV's again for xmas, at least I feel a whole lot better! my grandfather just arrived, got to go!!!!

Five days to Christmas!

Ugh!!! I was halfway through typing this post when I lost it! I'm not sure what happened, but it had to do with uploading the photo!

I'm doing well. been on IV's a week now, 2 weeks to go! At least time flies, can't believe it's been a week already! Yesterday was a crap day for me emotionally, due to various reasons, but luckily I'm feeling better today. Got all dressed up and washed my hair (well my mom did actually, it's impossible with just one usefull arm!), as we had to take a photo of me and my sister to be used in some Christmas gifts! (I'm the short one without the tan!!! And before you assume she's older, she's not. I'm 3 years older than her.) We're also going out for coffee later in the afternoon. I'll probably be wearing something with sleeves to hide the picc line, which is not cool, as the weather is hot today!!!! Not much news apart from that. My grandfather's coming tomorrow, looking forward to seeing him. It'll be his first time here without my grandmother, who passed away last year. The other grandparents are also coming down sometime over the weekend. Also looking forward to lots of eating!!!!!!!!!

Just an update...

Yesterday was very nice, saw 4 of my very good friends during the day, which resulted in me being pretty tired last night, but feeling nice and social for a change! Two of them have gone off on holiday now, so had to squeeze them in! So glad I did!

Still feeling a lot better, it's sooo great. Able to sleep well and breathe so much easier, coughing a lot less and easier as well. I've got an appointment with my doctor today, so then i'll know how long I'll be on the IV antibiotics. Don't mind if it's quite a while! I can get used to the not-coughing and easier breathing (obviously me and my new lungs will be a match made in heaven!).

Also seeing another friend today before she flies home, and I'll spend some time with my sister as well. She's been so busy so far this holiday, haven't actually seen much of her! Speaking of holiday... i feel totally out of touch with the Christmas shopping thing. I'm not doing any Christmas shopping and haven't been to the shops in ages (been feeling too crap and shops are VERY busy, I'll do a bit of shopping after the rush), whereas normally this time of year it's always shopping and going to the beach! Obviously haven't been to the beach either, but the weather hasn't been that great anyway. Haven't really considered if I'll go to the beach with my portable oxyginator. Definitelly not in peak time!

Have to go and get dressed now, quite tricky with only one available arm! Until next time.. bye!

The weekend

My weekend was quiet, relaxed and a bit of a blur... Feeling a lot better thankfully! Very gratefull to be coughing less and breathing easier. Energy still comes and goes a bit, but managed to get a lot of rest in.

Saw three friends this weekend, each one very unique. Seeing them got me thinking quite a bit though. It is interesting to observe the effect that my whole situation has had on my friendships... Actually, that is an understatement. Some of the reactions have upset me quite a bit, and I'm sure I'll be getting more suprises in the future. And I'll have to learn how to handle them.

The worst is having to go from being close to someone, to the other person just not really giving a damn, getting too caught up in their wildly exciting life to spare a few moments to send an e-mail or text message, nevermind making a phonecall, even if they know you're 'sick'. (they're most probably not reading this so don't start stressing thinking it may be you!!-however if you really think it might be you, just ask me) Then you get the people who you were always friends with, but not close friends, who've been great, and shown care and support all the way, making the friendship so much tighter. Next up is the weird group, although I generally don't deal with them myself, it's usually my friends or mom who have to face them. They're the people who fake an interest because it's the appropriate thing to do. They don't care how I'm doing or what exactly's wrong with me, but they ask anyway. And then finally, there's the group who's always been your best friends, who're still there for you all the way, and who have to put up with your moods and frustration and anger caused by all the groups of people just listed. To you guys I want to say thank you. If I sometimes act like a bitch, it's not you I'm angry with, it's the situation and all the people NOT supporting me... But rest assured... when I get those lungs and show my friends the time of their lives (you will have to pay for yourself though, I didn't win the lottery!), they won't be included!

So to conclude.. cf and especially transplant is the ultimate friend-o-meter (AND love-o-meter, but that's a story for a different day!), and at the end of the day it's a good thing. Who wants to waste time and energy on fake friends?

I feel a better day coming on!

Yay, the picc line insertion was so much better than expected! Even less painless than the normal drip needle (obviously the Emla patch- numbs the area- played a role!), and my doc said it went in 'beautifully'! And my favourite nurse was there! It's still early in the day, but definitelly breathing easier already! Looking forward to my body getting a bit of a break after all the coughing and trying-to-breathe it's been through the last week. Need to pick up a kilo or so as well. Another amazing thing that happened that I'm SO thankfull for, is that on the way to the hospital my dad phoned saying that the final sputum results were back and my evil friend Pseudomonas WAS SENSITIVE TO AMIKACIN!!! Let me explain for those who don't have cf... Pseudomonas is a very 'promiscious bug' (yes, those are a doctor's exact words), that quickly becomes resistant to any antibiotics introduced. Lately the ONLY thing that my Pseudo is sensitive to (meaning the only drug that works) is Colistin, which I nebulise. However, by some kind of miracle (according to me), one of the drugs I haven't used in the past year is going to work again! Yay!!! Furthermore my dad and sister are coming home today, they should be here by lunchtime! My dad works in johannesburg now, where I'm going to have my transplant. He's on holiday now for 3 weeks or so over Christmas. Will be great to have him around again for longer that a weekend! Then I just want to thank everyone who has posted comments or sent me messages on Facebook or e-mail! I REALLY appreciate it! Hope everyone has a great weekend!

Weird day...

I would've made the title 'bad day', but something that is potentially life-changing also seems to have happened today, so it's not all bad. I'm feeling horrible right now, all weak and trembling and feverish and tight chested! Not a good combination! I sent in some sputum (fancy term for mucus, pretty gross, but you'll get over it) on Monday. Phoned my doc today, and the results aren't back yet, but feeling the way I do and not wanting to feel like this for much longer I told him that I want to go on IV antibiotics (a drip in other words) TODAY!!! So my mom and I are off to the ER at St George's this afternoon. I don't know what to expect though, as previously my doc and I talked about getting a long-line/PICC line the next time I have to go on IV's.. I've never had one of those, and it sounds scary, and I can be quite a wuss when it comes to these type of things! (transplant's ideal for me then! Haha!) I will do an update on how it went.. hope my favourite nurse, Jackie is there! The life-changing thing... I really can't say anything at the moment, as it's just a thought/idea. What I can say is that last night when I did some half-decent praying for the first time in quite a while, I told God that the two things I'm really scared of at the moment is not getting to JHB in time when I get the call for lungs (It's a 1hr 40min flight on a commercial airline, and 2.5hrs on charter plane. I've basically got 2-4hrs to get there! So it will be tight! And I can't stay in JHB, as the altitude makes it 10 times harder for me to breathe! I will need very high O2 support. And obviously my social and medical support system is here.) and the other thing is not getting lungs in time, or having an infection or something when I do get the call which means they probably won't do it. And the fact of the matter is they've only done about 3 lung transplants this year! Which scares me. So this morning I got a phonecall from a family friend, with the most unexpected story about a man who had 2 lung transplants who she met via her sister by coincedence! I phoned the guy and talked to him and it was SO INTERESTING! It felt like God might have been answering my prayer right there. Will keep you updated if this should lead to anything... While on the topic of prayer.. One of my new transplant friends (she had hers in October) and I said last night how much our faith has helped us through all of this, and it's so true. And the most amazing part is that should the operation not happen in time or the new lungs are rejected, then we've got ETERNAL LIFE to look forward to anyway! So it's really a win-win situation for us. Whereas if you don't believe in God you have nothing. All you have is luck, and you have to put all your faith in people. And while there are brilliant people out there they make mistakes, and in the end they're just like you, with no real power whatsoever. I will leave you now to go and cough some more and try to get myself ready for this afternoon..

Welcome

Hello!! I'm not sure if anyone except maybe some friends and family (because I'll kindly force them to do so) is going to read this blog, but I was inspired so much by reading another girl's blog who went through this and much much more, that I decided to try it out for myself...
Apart from the obvious therapeutic properties all of this will have, it will also be a great tool for me, as everyone always wants to know how I'm doing. Now they can read how I'm doing anytime they want to. Especially those people who are afraid to ask me and end up asking my friends :-)
Right now I'm ok-ish. Had a difficult morning. It started out fine, did my first neb (inhaling medication using small machine called a nebuliser), had breakfast and did my normal morning e-mail/facebook check, then proceded upstairs again for remaining nebs and lying on physio-mat (don't know the technical term for this device, it's almost like a back-massager that you lie on, which pounds out mucus! It belongs to my physiotherapist). After coughing my lungs out etc, I realised that I'm running a fever. Got back into bed. Realised I've only got an hour before I need to be at physio (I go 3 times a week, she 'beats'/pounds my chest to get more junk out). Decided that I don't have the energy to go and asked her if I could postpone it or something. They're so amazing, both of them, that I ended up receiving a home visit! (I also received a home visit from some dude from from the municipality who wanted to read the metres... think he got the shock of his life when I opened the door in my pj's with my O2 restraining me like a dog tied to a tree or something, and acting like nothing is wrong!)
Luckily my day got better after that, had a peacefull afternoon and my mom and I just got back from having some McDonalds drive-thru cappuchino at the beach parking lot!
I think this is enough for today...
P.s. I'm not very technologically advanced.. and still figuring out how everything here works, so bear with me!