Friday, February 29, 2008
My parents have to do some shopping but the mall is too busy for me to join them! Doctor's visit went great today. No problems, weight's picking up, and fev1%/lungfunction is 90%! That's AMAZING! I didn't think it would increase from last week's 88%! Not holding my breath for next week though, no pun intended!
Looking forward to the weekend, going to visit my grandfather on Sunday! Haven't seen him since being in hospital, but he phones every day. He stays in Pretoria, which is a city next to Joburg. So it'l be my fist big outing! Haven't been able to breathe there (and in Joburg obviously) for years!
Now.. Some people asked why my mom and I are scared to go into the nature reserve alone.. Well, Joburg is one of the most dangerous cities in the world. People get killed, shot, raped, mugged etc ALL THE TIME. For 2 woman to be walking alone 'out of the public eye' would be looking for trouble. Crime is HORRIBLE here, which is the reason so many people leave the country. EVERYONE I meet here have had an encounter with crime. I'll probably never drive around alone at night. Port Elizabeth was better, and part of the problem is that Joburg is relatively close to neighboring countries like Zimbabwe and Mozambique, and lots of illegal immigrants come here, also lots of Nigerians. So it's really sad, because it's such a beatiful and diverse country. I guess you just learn to adapt! Hope that answers the question!
Hope you have a great weekend!
Wednesday, February 27, 2008
We're still strugling to get internet... I spent an hour on the phone with Telkom yesterday and we're waiting for them to call back... whenever that's going to be. Also had a visit from an aunt of my mom's whom I've never met, which was nice.
Going to the doctor again on Friday, so will update again. Doubt whether it's possible that my lung function has increased more during the week! Below is a note from my mom...
Dear Blog Readers
This is Alice's mom; I want to thank every one for their prayers and support during the past month. We as parents thank the Lord for what he has done for Alice and the support He has given to us during this time. The most amazing thing for me is just to watch her; her nails and lips are pink again and she can walk without O2.
Whenever we went somewhere and I wanted to know where Alice was, I just listened for a cough; today in a shop I also wanted to know where Alice was, I listened and there was no cough!
We have met awesome people during this time; especially people from the Milpark hospital, doctors, nurses, physiotherapist, transplant coordinator, receptionists and the list can continue. These people work tirelesly to help and support Alice and always with a smile and a word of encouragement.
I thank the Lord for this road that we have walked with him.
May God bless you all
Monday, February 25, 2008
My dad was home this weekend and he's bringing up some more of my clothes and stuff, can't wait to get it! Tired of my limited clothing range :-)
Some more answers:
- My gene mutation is also 2/double delta F508.
- And concerning physio, I had to see a professional physiotherapist 3 times a week while being listed. I only had physio while in the hospital after the op. Now I just exercise without overdoing it.
Today's going to be quiet, going to watch a dvd, exercise, eat, knit, read, the usual.
SO HAPPY FOR TRICIA GETTING LISTED!! May you get lungs soon and enjoy life with Nate and Gwyneth!
To register as an organ donor in SA go to www.odf.org.za
Saturday, February 23, 2008
Tamara M- I read about lung transplant on the internet, but I was still doing fairly ok then, and thought that I was miles away from that, but at least I knew about it. My health really started getting bad all of a sudden in Jan/Feb 2006 when I started colonising Pseudomonas. In October of that year I asked my lung specialist in PE about lung transplant and if they even do it in South Africa? He said yes he knows they've started doing it at Milpark Hospital in Joburg. So we asked him to please find out more for us, as well as finding out as much as we could about it on the net. I got an appointment with the lung specialist at Milpark in Jan 2007 and they immediately did a work-up. I got listed roundabout at the end of May 2007. It is quite a new programme in SA, they only started a few years ago, which is why so many CF doctors around the country is not aware of it.. Yet. And I would like to change that. I'm only aware of one other succsesfull CF transplant, although I think we are the perfect candidates! I was also extremely lucky to get lungs in 8months time, as the waiting time can be LONG and I was a late referal! I should've been listed earlier. The CF people that DO get listed here often get listed TOO LATE!
As for the hygiene.. It's the same as anywhere else. I have to be extremely careful of germs. It's not like SA is 'dirtier' than other countries, lol! Except maybe for state hospitals! Hope that answers your question.
The American Brownie- it was BIGGER and CRUNCHIER than a normal brownie! Other than that I'm not sure why they call it 'American'. Don't know how brownies taste in the USA! Maybe one day I'll find out...
Friday, February 22, 2008
My Dr's appointment went well this morning, fev1%/'lung function' is 87.9%! Up from last week's 81%! It's positively NORMAL! Going again next Friday.Only did 2km on the bike yesterday, was lazy and didn't sleep well the previous night. Couldn't stop thinking, felt like my thoughts were just racing and couldn't stop! So last night I took a sleeping pill to prevent it from happening again! My thighs are stiff today! And it's going to be worse tomorrow ;-)
Our internet is only going to be up and running in about 2/3 weeks time because Telkom has a 'backlog'! Ugh!!! I've got more than 1700 e-mails to go through and it's getting more by the day. At least it will keep me busy once we do get internet. Until then Antoinette will just copy and paste for me!
My mom and I went to an outside coffee shop again this afternoon to celebrate my 1-month 'birthday'. Had an American Chocolate Brownie!!! And insulin! With my sugars having been all weird except for the past week when they were fine, I haven't had anything sweet to eat during this whole month! And I've been craving it like crazy! I used to eat quite a lot of sweets, since I've always wanted to pick up weight rather than lose it. (except for my 'fat' years when I was 15/16, when I weighed 8kg more than now!) Luckily with my sugar levels being better now I've picked up a kilo since last week and hopefully in the weeks that come I'll pick up another 2/3 kg.
I almost forgot, someone asked about not seeing my scar... You wouldn't see it when I've got clothes on, as it is horizontally accross my chest, on my bra-line. I'll even be able to wear a bikini without it being too noticible! But I'm proud of my scar, so I don't mind.Enough blabbing..
Just want to end off by saying that it's been especially cool the way I've been contacted by CF people and mothers of CF children in South Africa saying that I've given them hope and options for the future. I really want other people with cf to experience this amazing gift, and most of them ARE NOT AWARE OF THIS OPTION! If I hadn't heard about lung transplant through cystic-l on the internet in 2003 I would've died somewhere in this year and probably wouldn't have seen my 24th b-day. So I'm seriously going to do my absolute best to promote it. As well as organ donation. If any of you aren't organ donors yet you better register! 'don't take your organs to heaven because God knows we need them here!'
May you all have a good weekend and may God bless you as much as he's blessing me!
Wednesday, February 20, 2008
Monday, February 18, 2008
I've had the best weekend in a long time!
Friday evening my mom and dad and me watched Marie Antoinette on dvd, interesting movie, I liked it! Cool soundtrack!
On Sat morning Andrew and his sister Patricia, who stays in Pretoria (next to Joburg), arrived after getting lost! We had brunch of scrambled eggs (my first 'cooking' experience with these beautiful new lungs), toast and muffins. Trying to eat while wearing my mask proves to be quite a challenge! Have to wear a mask when I have visitors and we're inside. Then we went for a drive- I showed them Milpark Hosp and we drove/walked (I could keep up!!!) around looking for a open-air coffee shop where we could have something to drink! Found a News Café with a nice outside area with no-one smoking. We laughed so much, because I can't laugh! I CAN'T DO IT PROPERLY! I always used to turn blue and start coughing like crazy whenever I laughed, with the result that I just sort of smiled and suppressed my laugh! And now that nothing's stopping me I can't really stop when I start, and no sound comes out. I just shake and later tears start to form all the 'laughing'! It better not boost my immune system ;-)Then we returned to the flat and had lasagne for lunch.
Andrew bought me a bunch of stuff from home, which was great to get. Shoes, exercise takkies/trainers (HAVEN'T WORN THEM IN YEARS!!!), books from friends, letters from overseas! Thank you Clarey, Lisa and Matthew&Sylvie&kids! Felt so special! Put them all up in my room! Sat evening my mom and I watched a tv movie, Love comes softly. And I did 2.8km on my bike. I've increased the resistance a lot. So my legs and lungs work, with the former giving in first!
This morning I was just lazy, read the news paper etc, and did 3km on the bike, might do some more later. Andrew, his sis and her boyfriend came again for lunch, had yummy beef pie and salad. Laughed some more..So it was an awesome weekend, and I'm really starting to feel like I've got my life back! And it's such a good feeling. I can't wait to do all the things I've been wanting to do forever!
Had a horrible dream last night: dreamt I was coughing up blood again. I used to cough up as much as probably half a cup of blood at times. It's one of the most scary feelings, almost like drowning. The worst was when it happened while I was driving and couldn't even spit it out but just had to swallow the whole time! Pretty gross. May I never experience that again! Luckily I woke up quickely after the dream and realised I was breathing easily and without O2.
I pray for everyone on a transplant list (thanks for the comment Allison), because the waiting sucks.
Hope everyone had a good weekend as well.
And lastly I just want to say that the best part of the whole tx experience, apart from the lungs, was all the WONDERFUL people I've met. Through the blog, at the hospital (all the nurses, amazing doctors, physiotherapist, x-ray people, the list is endless!) and through other people/friends. You guys all rock! xxx
Friday, February 15, 2008
Thursday, February 14, 2008
Tuesday, February 12, 2008
- the lung x-rays are looking great - one can see the difference between the ones taken today, and those taken a week ago
- the remaining clips and stitches was also removed - apparently it did hurt a bit when they took out the stitches
- she bumped into her physio, who was glad to see her
- her favourite surgeon introduced her to his receptionist and one of the other surgeons on the transplant team - showing off, no doubt! - both surgeons can't believe how good she's looking and doing
- she also went to say 'hi' to the nurses at the intensive care unit
- she can start driving in 6 weeks time
- and, I believe this is the best part ... one of our friends, Andrew, is going to visit her this weekend, flying up from Port Elizabeth, and she can go to a coffee shop with him, in other words, she can venture into public places!
She's seeing the lung specialist on Thursday, so we're all hoping for more good news then!
Monday, February 11, 2008
'Hi everyone!!! I've managed to reach my blog via my phone, but it takes forever to load and I can't post! I should get internet this weekend! A friend is coming to visit (yay!) and he's bringing our modem with! Firstly, words cannot describe how grateful I am for all the prayers. You have really strengthened my faith! I'll thank you properly when I can post again... Secondly, I feel amazing.. I have forgotten how deep a breath is supposed to go! It's the best feeling in the world! I pray that everyone on the waiting list may experience this. Thirdly, thank you Antoinette for doing such a great job! I have the best friends in the world, which is why I miss you all so much and can't wait to show off the new updated, pink and wireless version of me! Thanks again! Alice'
Sunday, February 10, 2008
Alice is doing really well, physically she's getting stronger every day, and she can now manage to climb 2 sets of stairs 7 times a day! She's just incredibly bored, and considering getting herself a exercise bike!
She's also had visitors for the 1st time this past week. Her uncle and aunt came to visit, as well as a old school friend, Suzanne, who now stays in Johannesburg.
Alice says it's quite weird to not have to nebulise, or to cough as much as she used to, but she's slowly getting use to her mre normal life! She's also so amazed at how quickly she can get ready to go somewhere, no more need to cough as much as possible. She says she lost about 1,5kg since the transplant, but she's not worried as she's got a healthy appetite, and I'm sure she'll gain the weight she lost in no time.
This week she's seeing the surgeon on Tuesday, and the remainder of the staples will come out. Her wound is progressing well - it's starting to get better as every day goes by. On Thursday she's also seeing the lung specialist, who'll be doing some bloods, and another lung function test.
She's also going to discuss the possibility of coming to Port Elizabeth over Easter with the doctors.
I will be updating the blog again on Tuesday, after she's seen the doctor.
Thursday, February 7, 2008
Her mom is cleaning her wounds at the moment, and I've been told that she almost passes out each time ... can't be fun! :) And, she has just sent me a mms, with a picture of the right side of the wound, with 2 of the 'cuts' where the drainage tubes were - and, yes, I must confirm, it's looking rather gross and scary! Her poor mom ...
Wednesday, February 6, 2008
She's missing all her friend terribly, and I'm sure we'll all feeling the same way, at least, I am missing her very much! She's also VERY frustrated because she's without internet, but I'm sure this is only a temporary problem!
Tuesday, February 5, 2008
Again, just to remind everyone .... in particular the South African followers of the blog: please DO NOT send flowers or chocolates, she has CF related diabetes and can't have flowers close to her, at all! If you feel that you would like to send her something, although (and quoting her mom), 'it's really not necessary', you can rather send a voucher for Exclusive Books etc. or just a card! If you need to get an address, just mail me at firstname.lastname@example.org.
Sunday, February 3, 2008
- She went for coffee with her parents and sister in the garden of the Hospital, walking around WITHOUT oxygen, not getting out of breath at all. But she can't walk very fast as the bandages (on her chest) is keeping her back.
- She has less pain today.
- Some of you might know that she needs to write a thank you letter to the donor family - she hasn't done that yet.
- She was too nervous to ask the doctors to take pics during the operation (I know she really wanted to do this), but there is some pictures of her from after the operation and ever since.
- She doesn't know what her plans for the rest of the year is ... at the moment she needs to stay in Johannesburg, and she will probably stay there for quite some time as she feels safer closer to her doctors.
- Once she is discharged from hospital she needs to go almost daily for bloods to check the anti-rejection medication levels; to change the bandages; and, to remove the staples, which I presume is keeping everything closed.
- The plan of action with the staples are as follows: first they'll remove every 2nd one and then the remaining ones at a later stage.
- She had to cough up some mucus today which was sent away to determine if everything is ok because she is off of all antibiotics - she's quite nervous about the results.
- For the first couple of months she'll be wearing a surgical mask in public places to ensure that she doesn't come into contact with germs.
Hope this answers some of the toughts you might've been having .... If there are any questions you can mail me and I'll forward them to her. My e-mail is: email@example.com
Saturday, February 2, 2008
Friday, February 1, 2008
Tonight I'm going to our church cell braai (like a barbeque), and I'm sure that we will say a special prayer for the family and Alice, who is together with her sister, part of the group, and tonight they'll both be missed terribly!