Thursday, January 31, 2008
She's also very excited to watch Private Practice (the 1st season started last week here is South Africa) as she missed the first episode ... And she is enjoying a coffee table book about Elizabeth I, which her mom bought for her.
I think, all and all, a good day!
I again spoke to Alice last night! I'm sure that once she has internet access again, and is able to update her blog she'll have tons of stories to tell!
We spoke mainly about the operation and how scared she was - but, seriously, who wouldn't have been??
She is also managing without O2 for longer periods of time, which is great news - I can't wait for the day when she doesn't rely on O2 all the time. As friends we always use to joke that we need to 'plug her in' (referring to her portable O2) whenever she came to visit ... and, when she would laugh, the machine would start to beep like crazy (probably thinking something is wrong) because she wasn't inhaling from her nose - we use to tell her that the one of fundementals of living is breathing, and she shouldn't confuse her machine (and I think, deep down, scare us)! We had some wonderfull times, and I'm sure there'll be many more to come in the future, albeit without her O2 machine :)!
This morning she is in a lot of pain, but as she said, when somebody 'ripped' open your chest, who wouldn't be in a ton of pain? Please pray that the pain subsides and that she can manage.
Also, a message from her mom (which I forgot to post earlier) - although the thought is appreciated, please do NOT send flowers or sweets to Alice. She may not have flowers and she is diabetic (CF related diabetes) - just a card at this stage will be great!
I also posted some photo's of Alice ...
The one of Alice and her sister, Chrislie on New Years Eve this year - Alice is on portable O2 and she still has her PICC line for the IV antibiotics.
The other one was taken last year in October, at my birthday party - we've been friends since primary school ... from left to right it's Louzanne (now living in Cape Town), Alice, and me.
Wednesday, January 30, 2008
Alice is back on planet earth... i.e. she can communicate to everybody! Just spoke to her - have been waiting for this moment for so long! She's sounding a little bit hoarse, but that's because of the vent pipe, but other than that she's sounding great - not short of breath at all! Isn't this just wonderful news?!
She's VERY bored, and annoyed - she's just irritated!
She's also in her own room in a general ward, having a view and verandah to sit on, as well as a TV set!
Will be talking to her again later this afternoon, so will write more then.
PS: Tried the photo thing, but not sure if the layout looks right....
Tuesday, January 29, 2008
Spoke to her mom, who reports that Alice will hopefully be moved to a general ward tomorrow - she is currently in isolation in the ICU. Once in a general ward she will have her own private room with a TV, and she will be able to sleep much better, and have some full time company via the TV set! She is also returning to her old self, not wanting her parents and sister to leave at the end of visiting hours, and I'm pretty sure she misses all her friends. As the weather has improved in JHB (it was raining last week) she also got to sit outside for a while today. And, she managed without oxygen for a while, with her O2 sats being 86%. The doctor's hope to take her off the O2 from tomorrow.
Her mom also said that the doctor's believe that the first 100 days are critical, as the lungs and her body are busy adjusting to one another. But things are looking very good thus far.
Alice is also in for some fun visits in the near future ... most of her PE friends will be flying up at to JHB over weekends, and I believe her aunt from England will be visiting soon too.
I can't wait for her to be back in Port Elizabeth. We are having a wonderful summers day here and I'm sure she would've loved to go to the beach for a swim and tan session. Thinking back to how she was before her CF became so much worse, I think all her friends will have a lot of trouble to keep up with her once she is back home. So we better prepare ourselves...
Monday, January 28, 2008
She's also developed quite an appetite - she's eating very well, and finishes all her food at meal times, as well as two Tab softdrinks.
On behalf of the Vosloo family - They would really like to thank everybody for their ongoing interest, support and prayers for them and Alice!
An update on Alice's progress: She's VERY GOOD! Since this morning she has been able to sit up in a chair, and she's been eating and drinking (she's managed to finish a whole packet of chips and a Tab softdrink). At the moment she still has two of the drainage tubes in, as well as some of the drips. The drip in her neck and the other tubes have all come out, and I'm very sure that she is much more comfortable now! She is in some pain, but, according to her mom, she's managing it fine. Her dad also told me that her O2 sats are 100% - this is really awesome and just breathtaking, really :)!
She also wants to let everybody know that she says 'hi'!
Will keep you updated as often as I get news!
Sunday, January 27, 2008
Riaan is also here and gives a hand where he can. It is strange to see my friend get ready to leave on her own. I am left with a fantastical sense of reality that Alice will be coming home, 'living' again. I don't know about you, but it is all to much for my small brain to even comprehend.
Sitting here is Alice's room, I suddenly (and actually for the first time), read a quote on her wall...
"It is the possibility of having a dream come true that makes our life INTERESTING"
Alice had a big dream; she wanted to live. That made her become the wonderful person she is today. Looking around, I see the nostalgic pictures that remind me what a full and amazing life she has lived up to now. We are truly excited to see what she will be able to do now that her body will not be restricted anymore!
Keep up the prayers...we feel God at work more and more. May we all see the glory of His love being enveloped in Alice's 'new' life...
Her fever and her white blood count is down. The doctor is very pleased with her condition, but Alice is struggling to stay awake. My parents sat at her side the whole morning and tried to keep her awake by speaking to her. She understood them and also wrote on a paper that she wants her oxygen (she doesn't need it). The ventilator is set at low level of usage and the doctor what to take it off but Alice has to be completely awake.
Alice is really doing good. She waved at my parents and showed a thumbs-up when they asked her how she is doing.
Thank you so much for your prayers!
Saturday, January 26, 2008
Please pray for her to be calm and that her fever will go down. Thank you
Friday, January 25, 2008
Please pray that Alice will be more calm and relaxed.
I think I'll be flying up to Johannesburg on Monday afternoon. Can't wait! I probably won't be allowed to see Alice, but it would be nice to be there and spend the day with my mom while my dad is at work.
One of our cats, Emma, turned 9 years old today! Emma was Alice's cat originally, but later on I adopted her because no one in our house likes Emma. I must admit she can be a pain most of the time (she is VERY demanding), but she has her nice moments.
Thank you so much for all the support and messages!
Thursday, January 24, 2008
Alice is still doing fine. She was awake and tried to tell my mom something, but she couldn't because of the ventilators in her mouth. She also seems confused. The doctor sedated her to make her sleep again. According to the doctor, Alice is still doing as she ought to.
The staff at Milpark is taking good care of her and is very strict with visiting hours.
On behalf of my mom and dad, I would like to thank all of you for all the prayers and messages. We really appreciate it so much! It still amazes me to see all the interest from around the world.
May our LORD Jesus Christ bless each one of you richly!
Wednesday, January 23, 2008
My parents are also doing well; my dad went back to work today in Johannesburg.
I'm also doing very well. Euzanne is still staying with me and tonight my boyfriend ,Riaan and one of my friends, Juan, came over to visited me. Juan made us some delicious honey and mustard chicken. I'm still so excited for Alice! And so grateful! I will never get over how God provided for us and how He is looking after His children.
I wish I could also be in Johannesburg to see her and be with my parents. But I will probably fly to Johannesburg later on this week once she is out of ICU.
Once of my best friends, Euzanne, is staying with me at the moment which is really fun. It helps having someone else around. Gardi, Alice's lifelong best friend's mother also came to our house last night to wait with us. It was so nice having both of them here!
Thank you so much for keeping Alice in your prayers. It amazes me to see how many people thought of her and continues to pray for her!
Tuesday, January 22, 2008
We will never forget the 22nd January 2008!
Praise be to God!
I still can't believe that Alice is getting new lungs. It's so surreal. Last night, just after falling asleep, I heard Alice and my mom doing something downstairs (we live in a double storey house). So I went downstairs to asked them what was going on. When they told me, I thought I must be dreaming! It was on of those moments where someone has to pinch you to make sure you are not dreaming. This is an absolute dream come true! An answered prayer! It just shows how good and faithful our LORD Jesus Christ is. He alone is worthy to be praised.
Please pray that God will be with the doctors, keeping their minds alert and making the right choices. The duration of the operation is about 6 hours.
We really appreciate all your prayers
Everything is going really well so far. Last when I spoke to my mom (20 minutes ago), they were still waiting. Alice is doing great, very calm but also very excited! The operation was suppose to start at 15h30 sa time, but they are running a bit late. The doctors are still not 100% sure that the donor's lungs are good enough, but it's very unlikely that it won't be fine. They are running late because the donor's heart first have to go for a heart transplant.
That's all I know at this stage. I will update as soon as I have news.Thank you so much for your prayers! To God belongs all the praise and glory and honour forever and ever! His timing is perfect!
I'm quite nervous!!! Shaking a bit! Had a bath now. Will lie down a bit after I've posted this. Please pray for the following:
1) that everything with the flying etc works out
2) that the lungs are good to go!
3) no unforseen problems
4) my parents' nerves!!
5) the donor family
6) that the op and recovery goes amazingly well
I think that's all... Don't know what else to say... this is surreal ;-)
Untill next time, when I will be breathing well!!!!!!!!!!!!! P.s. my sister will update this blog and keep you informed!!!
Monday, January 21, 2008
But I'm sure they'll be able to refer me to another hospital or something. I mean that can't be my only option. Will keep you posted. I want a tx THIS year! But what I do know is that when one door closes another opens. Now I'm waiting for that door!
Saturday afternoon I did a bit of exercise, followed by a nice bath. After that my mom and dad and me drove out to a restaurant just outside the city overlooking the sea, The Sacremento. Had wonderfull coffee and Lemon Meringue (my favourite). In the evening 3 friends came over. We had nothing planned, my mom and I had just made some food for us to eat. We just talked and talked, was great. Couldn't stop talking untill eventually at 11:30pm we were all getting pretty tired and they left.
Yesterday a friend of mine who is leaving for the UK on Thursday had a farewell braai (BBQ) at my CF doctor's house. (She knows him from church, and they offered their garden for her party) I thought it might be a bit weird socialising with my Dr but it was fine. They've got the most amazing house and garden! It was very nice, and the weather was perfect. So we all just sat under the trees and ate etc. Some people were swimming but I tried not to be jealous! Two hours after being back home my parents had friends over for coffee, chocolate and sherry. One of the couples' daughter is one of my best friends from school, who works in Cape Town. She was here for the weekend, so we managed to see each other for a short while before she had to leave for the airport again! She wants to really raise awareness about organ donation (especially under all those drunk university students!), so that's great. After that I went to church, which was also very nice, and we had coffee afterwards. Well, cooldrink actually because it was so hot!
So all in all it was my best weekend of the year so far. This year's getting of to a good start, I hope it's a indication of things to come! I'm almost off to physio now. And this afternoon I'm having coffee with my ex's brother. Really looking forward to it! It's horrible when you used to feel like part of someone's family and then all that comes to an end when you break up. So it'll be great seeing his brother again, it's been a few months!
Hope everyone has a great week...
Thursday, January 17, 2008
Monday, January 14, 2008
So after sending some medical records and info over, I've been waiting for a reply. And I finally got it today. I just have to add that after finally receiving the long-awaited e-mail and almost falling off the chair when seeing it, our suburb was hit by a POWER-CUT just as I was halfway through the e-mail!!!!! I almost freaked out. I had to wait 2 hours before I could finish reading it. Torture! But back to the story... The reply was that the amount of foreign transplants the hospital can do has been lowered to 5%, which translates to about 2 a year. And there are already 2 people from outside the US waiting there. BUT one of them might be going home if she doesn't receive any lungs by the end of Feb... (For various reasons) And it seems like I might be able to take her place then. So it's still more waiting ( they weren't kidding when they called it a WAITING list!), but at least I know a bit more of what's going on now. Really just praying and having faith that everything will work out!
Had a great afternoon/evening. Went to visit 2 sets of friends, was great getting out of the house! And just chatting and talking nonsense. Lungs were fine. HAVE to excercise again tomorrow! Going to have a quiet/boring day tomorrow. I'll dedicate it to my lungs... so what's new?! Hope the start of your week was also exciting...
Sunday, January 13, 2008
Saturday, January 12, 2008
My day was ok though I guess. Saw a friend, had tea with my mom and 4 of her friends, and went out for supper with my mom. 1 Good thing though... The mucus from yesterday is gone.. Today was like all the other mucusless days. That's very good and I'm really happy about that. Hopefully yesterday was just a weird glitch in the system.
That's all I've got to say. Hopefully tomorrow I feel less depressed and I get that all-important long-awaited news!!!!
Friday, January 11, 2008
I took a nap which helped with the headache and tiredness, but I didn't get round to visiting my friend. Watching tv with my mom right now... waiting for a BBC documentary, The truth about food. Looks interesting. Then last nebuliser and SLEEP!! Hopefully tomorrow is better! And thank goodness this week's finally over, it felt so long!!! Now if only all this waiting could come to an end.. that would make me very happy ;-)
Thursday, January 10, 2008
Didn't do much today. Exercised, nebulised, ate... all the usual stuff along with some building puzzle and watching TV. At least I saw 2 friends who popped in after lunch. Last night was very nice though, a friend and I went to the hospital to visit our other friend who had surgery, and then met up with other friends for coffee and cake! (I think I used the word 'friends' too much in that sentence!) Was great to be laughing and making jokes and feeling ok. Among our friends there's a new couple who got together a few weeks ago... I'm very happy for them, but they made me so jealous, they're so cute! Seems like new couples are just everywhere this week!!!! Ugh...
Tomorrow I've got a busy day, yay! Have to go to physio, and need to have blood work done for tx purposes, after which I'm going to visit the surgery-friend who is back home and doing better! Hope you also have a good Friday!!!
P.s. I almost forgot I actually...wait for it... played PIANO today!!! Proud of myself. Now I just need to keep it up!
Wednesday, January 9, 2008
The coffee with the friend on Monday was very nice. We had so much to catch up on, and after we left the coffee shop we had even more coffee at my house! She's so in love, I'm so envious! But not in a bad way, just miss that feeling! I've been to my friend in hospital twice since the last time I posted. She needs another operation, I feel so sorry for her! At least I know what's wrong with me and my goal is transplant. Not knowing what exactly's wrong with you and having operations and pain and stuff is luckily not something I'm familliar with!
Yesterday was like a shock 'back to reality' for me in the sense that all of a sudden I'm alone again! Holiday's over and my sister is doing summer school. And normally that suits me just fine when I'm feeling crappy and take hours to nebulise and cough and sleep and cough some more and nebulise some more etc. But now I'm feeling just fine, and find myself kind of bored and alone. Trying as hard as I can to find some stuff to do. Luckily I've got physio in an hour's time and then I might visit the hospital again. I've got a lot of stuff to keep me bust mentally (puzzles, books, internet...piano), but I want to go out when I feel good.
Ooo, I almost forgot... I've started doing some exercise again! Not a lot, but I'm working on it! My legs feel a bit weak when I exercise, but they're just lazy, because I'm not even stiff the next day! So I shall push them harder. I've got an eliptical trainer in my room that I exercise on, together with doing some leg exercises and we've got 2.5kg dumbells that I use for my arms (although my left arm is still stiff from the picc line, so I haven't used them recently). The eliptical trainer is really tough, so I can only go for a minute and then I have to stop to catch my breath. At the moment I do 5 minutes, which takes me about 20 minutes to do. The longest I've ever managed without stopping was 3 minutes (without O2), when my lungs were still a lot better. I then used to do about 10/15 mins in total. I'll try and work up to 10 mins for now. If I can do that as often as possible it would be great.
As you can see, I've added a counter to the site (applause for my technological skills please), to that should be interesting... Have to get dressed and clean my room now... bye
Monday, January 7, 2008
A close friend of mine is in hospital, she had an emergency operation and it looks as if though she might need another operation. So for once I'm not the sickest one! Quiet a weird feeling going to the hospital just to visit her. So nice not being the patient and not getting all the attention. I can get used to it! Just being part of the outside public... Although my portable O2 might've caused some stares..
This morning I didn't wear my O2 to the Bank or lunch, and thus REALLY felt like I could get lost in the crowd! It was a nice break, not having to feel a bit self-concious. I'm meeting an old friend for coffee this afternoon (I know.. all these people from my past keep popping up!), and I'm not going to wear my O2 again. I feel pretty much the same when sitting down, I just get breathless when walking and try to limit my movements. So sitting in the coffee shop with close parking should be a breeze. I don't like wearing O2 in front of friends that I haven't seen in a long time. To them it seems like I went from being 100% healthy to SICK in no time. I used to hide any signs of CF as far as possible, and if something seemed too much for me I just didn't do it. Now I'm wearing O2 and I can see them thinking 'O my word she's going to die!'. It's just tiring to say the least. At least the transplant thing is positive in that aspect as well. It allows them to think 'O my word she MAY die'! Just that bit of hope makes them act more human! I downplay the risks and inflate the success rate and everybody's happy! No more akwardness...
Have to go downstairs now, she's picking me up.. Will update on how it went. And I'm missing my dad! He's gone back to Joburg :-(
Saturday, January 5, 2008
Friday, January 4, 2008
AND... I also got a laptop yesterday!!!! Have been thinking about getting one for various reasons for a while, and yesterday I bought one! It's so much fun! Had a much more technologically advanced friend over this morning who helped me set up our wireless internet, so now I can do everything in my room, and there's no more fighting over the computer!
This afternoon 2 schoolfriends of mine who I haven't really seen in ages are going to visit our music teacher who we also haven't seen in 5 years. She was my favourite teacher, so I'm really looking forward to it.. just wondering how she'll react to the O2 though... she's kind of emotional!
Have to wash my hair and get ready for that. It's funny how you always want to look your best if you haven't seen somebody in a while, especially your peers. It's stupid really, because they're too busy worrying about how they look to really care. But we do it anyway...
Thursday, January 3, 2008
The pic line came out yesterday evening at 6:30. Was a bit painful, but worth it! It was so funny, when the nurse was busy waxing my arm (ie ripping off bandages), she asked the stupid question 'does it hurt?'... I obviously said 'Yes!', and so she laughed and said 'You should never get a tattoo'...The reason why this is so funny is because I do in fact have a tattoo! And it was honestly a more bearable pain than having your hair slowly pulled out of your arm! My dad and I just kept quiet and smiled... My arm muscles are a bit stiff still and my arm is 'dumb'! It's so weird, it feels like someone else's arm or a fake limb that I'm trying to manouvre! Had 2 of my best friends over afterwards last night to watch a movie on tv and play cards... I lost :-(
Feeling good, which is why I'm going shopping this morning! And all the post xmas sales are on! Yay!!!! Haven't been shopping in AGES!!!! And have a lot of xmas money that all the grandparents gave me! The only scary part will be taking my portable O2 with... I've never shopped with it before. I used to just do the getting-blue-in-the-face thing. But this should work better! I'll do a update later today to let you know how it all went (and what I bought!)
I also want to thank those of you who add comments! I LOVE getting them! It's so nice to know that someone is actually reading this! Untill later...