hahaha!!!!

Saturday and The Zoo

For some reason I didn't really take any pics, so you'll just have to live without it! Will remember next time I go to the zoo...

So yesterday was great! Went to the zoo with Jenny and Aerin, who is just too cute and smart for words. It is really big, so we only checked out about half of it, and watched the polar bears being fed. I really don't like the idea of animals in captivity, but these animals were all rescued, and have large enclosures. No cages or anything.Then we had lunch, and Paul, Byron and Caitlin joined us. Very nice and lazy in the sun!!

I went to a party last night. Didn't know anyone there, except a friend of Annelie's. It would have been better if I knew some more people, as the music was too hard to really have a conversation with anyone, and it was too cold to be outside for long. So I didn't stay too late, which would please my mom when she reads this.

Today is just a lazy day... went to buy some food, and now I have to do some writing (WATCH THIS SPACE!!!!!), and we might get KFC or something for lunch. Can't wait for tomorrow, when ANTOINETTE IS COMING!!!!

The parentals are on their way to Italy so we're FREE for 2 weeks!!!!!!

YYYAAAAYYYY!!!!! Two weeks of freedom!!! Just me and Chrislie... in our own little appartment... bliss...


What else? Yesterday we went to have coffee and did some window shopping. We also went to the same mall for supper this evening, to celebrate our 2-week independance. Had the most delicious chicken kebabs, and afterwards browsed around in a bookstore, which is a horrible idea, because I just want to buy all the books... A lady also came up to me asking if I was Alice Vosloo... first I thought someone recognised me from the O article, but turns out she's my aunt who stays in New Zealand's sister, and just recognised me from pics! Almost though I'm a celebrity there for a moment, lol!


My blood results also came back last night... Everything is fine, but the Prograf level still low, although it has improved from last time!! Also blew on the new machine that measures Nitric Oxide, and the result was 18 this week (was 20 last week), so that's also good.Tomorrow we're going to the zoo!!! I've only been to a zoo once before in my life, and never to the Joburg Zoo, so looking forward to that a lot!



I appologise for the quality of the pics, my parents have taken the camera with them, so the only thing we have to take digital pics with is my phone!!


P.S. Someone asked about an autographed copy of the O mag... I am really flattered SO MUCH by it, but my financial situation due to my unemployed-ness does not allow for me sending mags to the states!! However much I would love to do that, really!!!

I'M IN THE OPRAH MAGAZINE!!!!!!!!

So I FINALLY managed to get hold of the July issue of the O Mag!!! For the past 10 days or so, every time I enter a shop, I would first check to see if it's out yet. I think it's a very good article, and I'm very pleased with it. Even the picture is quite nice! Although I'm wearing a lot more make-up than I normally would, lol! And even Aviva can say she's been in the O Mag now!!

Last night Aviva came over for supper, and we went to see a movie first.... Forgetting Sarah Marshall... it's pretty crude (which we didn't expect), but it did have it's funny moments. So all in all it was a great evening.

I was paging through my diary the other night, and came across something that I had written on the 25th of June 2007. It was obviously written in Afrikaans, but will translate as best I can:
"It will be so great if my dad gets the job in Joburg, and I can stay with him after transplant. Can't stop day-dreaming about the first time I come back to PE for a visit after transplant. How awesome will it be if everyone sees me with pink lips and nails, for the first time in years. And I'll be fatter, and strong, and not all weak and coughing my lungs out all the time. And I'll be able to keep up with everyone, and be able to help around the house and not look like the lazy one."

So now it's SOOOO COOL to realise that everything I had written had in fact come true. My first visit home was everything I had hoped it would be, and more. I really am SO blessed.


Went for bloods this morning, and will get the results tomorrow. Hopefully my Prograf levels are up!!! And my parents are leaving for Italy tomorrow as well!!! So it's going to be just me and Chris for 2 weeks...yay!!!!! (although please don't get the idea I don't love them!!! just nice to be alone sometimes!!)

I PLAYED SQUASH!!!!!!!

So I tested out my new lungs on the squash court today, and they PLEASANTLY surprised me!!!!!!! It was SOOO easy!!!!!!! And pain-free!!!!!!! And just felt absolutely entirely awesome.... We played 4 games, and I won 1 of them. Hopefully Craig didn't let me win on purpose... but I'm sure he wasn't prepared for what he encountered on the court. The scores were 9-7, 9-8 (I won that one!), 9-4, 9-6 I think. So they were really good games!!!

Last night's DVD was very nice, although a bit sad. At least the company was great! Other than that I don't have much news...

Someone asked how Antoinette's health was... well as far as I know it's OK. Will check out for myself next week when she's here!!

Also, someone asked about TBI's, and I'm going to post the explanation that Jennifer sent me...

They are small. Some are small as the size of the period at the end of this sentence. However, ticks carry big diseases. Some that you may have heard of are Lyme Disease and Rocky Mountain Spotted Fever. Not only are there other diseases, but each disease has many different strains making it difficult to diagnose and to treat. There are several diagnostic tests for tick borne illnesses, but those tests only test for a few of the strains of each illness causing many false negatives. The best lab in the United States to test for Tick Borne Illness is IgeneX in Palo Alto Califnornia, but even they don’t test for all the strains of the bacteria. Lyme Disease is a spiral bacteria. It bores itself into your cells and hides. Because of it’s corkscrew shape, it travels in your tissue and hides itself in healthy cells. Therefore your own immune system doesn’t start to fight it because it doesn’t even realize that there is bacteria there. The bacteria also can change form when in a “hostile” environment (antibiotics) and can form into cysts which are safe from most antibiotics. Lyme Disease reacts differently in each person and there can be a multitude of symptoms. Some people infected with the Lyme bacteria have over 75 symptoms. Most people associate joint pain with Lyme Disease, however not everyone has joint pain. Also another marker of the disease is a bulls eye rash near the site of the tick bite. Again, most people do not get the bulls eye rash or it is in an area where it can not be detected (scalp under your hair). Because the bacterium multiplies so quickly, when the bacterium is killed it creates toxins which make the patient feel worse on antibiotics. There are two types of physicians that treat Lyme Disease. It is a very controversial illness and the two types of physicians believe different things. One particular group of doctors believes that long term antibiotics is not the answer. That if you are on antibiotics for more than a month and still have symptoms that you have Post Lyme Syndrome. The other group of doctors believe that if you have symptoms of Lyme Disease (or any of the other tick borne illnesses) that you still have Lyme. Most Chronic Lyme patients side on the group of doctors that believe in long term antibiotics. I do not know a whole lot about the other tick borne illnesses. I personally have Lyme Disease and another one called Bartonella. I do not know a whole lot about Bartonella except that it is just as difficult to get a positive on a blood test. The symptoms of Bartonella include a cat like scratch rash, fevers, headaches, back aches, fatigue, abdominal pain and many others. Lyme Disease causes multi system symptoms. Lyme Disease can cause flu-like symptoms, joint pain, muscle aches, fatigue, headaches, rashes, muscle twitches, sore throat, sensitivity to lights, seizures, ringing in the ears, diarrhea, abdominal cramps, sweating, heart pain, poor balance, dizziness, mood swings, sleep deprivation, over sleeping, memory loss, speech difficulty, reproduction & sexual dysfunction, low body temperature, continued infections, increased allergies, and many many more. I have had or still have most of the symptoms on the list above and even some more that I haven’t listed. I could go on for days and days about doctors, testing, treatment, and the politics of Lyme Disease, but I think Alice will run out of room.  Thanks Alice for letting me share. These are some of the best websites on Lyme Disease and the last one is a newsletter for tick borne illnesses and other public health issues.
http://www.canlyme.com/patsymptoms.html
www.truthaboutlymedisease.com
http://www.nclyme.org/
http://www.publichealthalert.org/

Monday Morning

We've had quite a busy day so far! Walked around in Melville a bit, and had coffee/tea and cake at the best 'tea-room'/bakery ever! They just make the yummiest stuff. Had Black Forest Cake... After that we went to Cresta shopping mall and did some window shopping (although Chris did get some jeans), and bought lots of food. And now we're just chilling at home.

Looking forward to tonight!! Having supper and watching a DVD (PS I love you) at my physician Paul's house. Although he'll be working late and it's definitely not his type of DVD, so it's going to be more of a girls night! Can't wait to see Aerin, the cutest little GIRL ever!!

I asked Jennifer to write something on TBI, so will post that when I get it! Oh, and Antoinette (who blogged for me a lot when I was in hosp, and after that when Telkom prevented us from having internet) is coming to visit in a week's time, for 3 days!! Looking forward to that a lot too.

Oh, almost forgot...

Today is my 5 month anniversary... and I'm doing absolutely nothing to celebrate it, which is a bit sad. Although I did to to gym, which is a celebration in itself I guess. Yay for 5 months!!! Maybe I'll eat a packet of cherry cookies that I saw somewhere around here.

Late Night thoughts...

A few nights ago, I lay in bed, not being able to sleep for a while, and made a rather interesting emotional discovery... I realised that the biggest compliment anyone can give someone who's waiting for an organ transplant, or has had one, is to become an organ donor, without you having to ask them...

This has happened to me, as three of my best friends, as well as my sister and parents of course, became organ donors somewhere in the time that I was listed, and I didn't even know. I only found out a while later, either by seeing the sticker on their driver's licienses, or just finding out in conversation a few months later. And it really felt better than receiving an actual gift from them. It's like they're saying to me: "If I could, I would seriously give you an organ".

On the flipside however, you get friends who just never register, and sometimes I find it rather upsetting. It's one thing if they openly say they've told their family they want to be orgen donors, then at least I know their intentions are good, although it would be more concrete if they actually just registered. It's shocking how uninformed some people are, and even though I've mentioned countless times how easy it is to register etc, some of them still don't know how to!!!! THERE IS A LINK ON THE SIDEBAR OF MY BLOG. FOLLOW THE LINK. GO TO THE BOTTOM OF THE PAGE. THERE IS A BANNER SAYING "GIVE THE ULTIMATE GIFT". CLICK THERE. FILL IN YOUR DETAILS. IT TAKES LESS THAN 5 MINUTES. NO MEDICAL EXAM NEEDED. JUST DO IT DAMMIT.

But it's another thing altogether when people just avoid the subject and keep quiet about it. It's like they're saying to me "I'm really glad you got lungs, but you would never have gotten them from me..."

Apparently in Spain, if you're not an organ donor, you can't get an organ. And I assume you must have been one for a while, as it's no use becomming one just when you realise you need an organ. In fact, they've also got the opt-out system, where everyone's an organ donor, except if you register NOT to be one. I really wish we could have that here...

So... if you're a real friend to someone who needs an organ, or who has had one, GO REGISTER YOURSELF. NOW.

Thank you.

Chrislie's first day in the Big Smoke!!

Today was great!!! First we went to the hosp, so that I could do the usual x-rays, lung functions, get blood results, visit Aviva etc etc. Was much more fun with her tagging along! Blood results looking better than last week. White and red blood cell count up (white was way too low), heamogloben normal (was a bit low too). The only problem is that my Prograf (anti-rejection med) levels are too low, so that has been increased! Other than that everything is perfect!! FEV1% is 96 point something %. My Dr also bought this fancy machine that measures the nitric oxide (I can't remember much chemistry from school ok...so I think that is what it is...) that you breathe out, and this may be able to predict rejection!!!! This is great news, and brings down my stress levels a bit, because if I blow into it every week, I shouldn't have any problems. Anyhow, my levels were low (in this case low levels are good!!!), so that is excellent.

We then had lunch at 44 Stanley Street, at a little place called Salvation Café, which is delightful. The food is lovely, and had to finish my sister's food for her as well... Then we went shopping!!! And the best thing is that I got a SQUASH RACQUET!!!!! I've been given the go-ahead to go play squash again, after years of not being able to do so!!! Hopefully the guy I'm wanting to play with has some free time next week...

We're leaving for the funeral tomorrow morning, and I'm driving back in the afternoon, as we're going to be celebrating Suzanne's 24th birthday tomorrow night!!! Can't wait for that, going to be lots of fun.

Just having a quiet evening at home tonight, seems like I've tired Chrislie out a bit! Shame... must be hard keeping up with me ;-)

My sis is arriving tonight!!!!!!

Firstly, thank you to everyone who commented on my last post, it was really appreciated!!! I found the pic on someone's Facebook profile, and thought it's a truly South African way to 'ask' for comments, lol!!

So my sister, Chrislie, is landing tonight!!! She was only supposed to come next Friday, but my dad managed to change her ticket! I haven't seen her in quite a while, so I'm really excited! And we're going to be alone for 2 weeks, as my parents are going away in a week's time. It's going to be 2 weeks of FUN!!!

Yesterday Peter and I went to a place that does embroidering (hope that is the right way of saying/spelling it!) on clothing. We want lung transplant t-shirts... I ordered 2 gym-tops, and a jacket. On the front, in the left-hand corner I want "BECOME AN ORGAN DONOR", and on the back "LUNG TRANSPLANT SURVIVOR". I think that will be very cool, especially to wear in the gym!! People are going to ge falling off their treadmills when they read what's written on my top!!

Tomorrow is x-ray, lung function, blood, and check-up day again!!! At least the waiting (because it's normally a LONG wait...) won't be boring with Chrislie there.

Something sad... my grandfather's brother passed away yesterday. So we will be going to Pretoria again for the funeral on Saturday. I didn't know him very well, but have met him quite a couple of times, and he was also very supportive during my transplant. And I'm feeling bad for his wife. I remember going to their 50th wedding anniversary about 10 years ago. So Rest In Peace Oom Piet... looking forward to seeing some of my cousins who are coming up from PE for the funeral.

Listen to the monkey!!!! :-)

BOOK REVIEW: SIXTYFIVE ROSES, BY HEATHER SUMMERHAYES CARIOU

“What I finally realised,” Pam softly continued, “was that God gave me life, and it’s up to me to live it the best I can, for as long as I can. All we can do now is to love each other, and keep hoping the doctors find something new.” My sister hugged me, and looked away. Her eyes turned steely and she set her jaw. “Don’t worry,” she promised. “I’m not giving up.”

Sixtyfive Roses is a memoir written by Heather Summerhayes Cariou, whose sister, Pam, suffered from Cystic Fibrosis. The quote above was the one I could relate to the most in the book. It just perfectly sums up Pam’s attitude, as well as that of thousands of Cystics across the world. Pam passed away in 1980, at the age of 26, which was pretty old for a CF in those times. (And I guess it still is… I wouldn’t have made it to 26, maybe not even 24) Pam’s last words to her sister, was an instruction to write their story, and Cariou has done a fantastic job… one which her sister would’ve been VERY proud of.

Their relationship as sisters is also very close to my heart, as it made me think of me and my sister’s relationship a lot. A part that really touched me, and describes their close bond so well, is where Cariou thinks about what she would miss about her sister… “I would miss her laugh. I loved how we made each other laugh. We didn’t laugh with anyone else the way we laughed with each other. Her laughter was contagious, a jumper cable wired straight to my heart. We laughed at everything, at nothing; our laughter swooped and turned like a roller coaster. We laughed until we were weak in the knees, until we had to hold each other, until we fell to the floor and ran out of breath and she coughed so hard we had to stop laughing, but still we couldn’t”

Another statement that I could really relate to was: “It was not fear of death. Pam was afraid of an unused life.” How true this is. Even after my transplant, I still feel this way. So throughout the entire book, I could really relate to Pam, and I thought Cariou did an outstanding job, not only in portraying her own feelings, but also those of her sister.

Having had this transplant however, it was so sad to read the book and realise that there was no hope for Pam in the end. Her only hope was a peaceful death. At a certain place in the book, someone they knew had received a kidney from her sister, and Cariou states that “I ran back and forth between their rooms as they recovered, wishing medical science would reach the point where I could give Pam a lung and say, ‘She breathed, she breathed right there on the operating table!’ and Pam would say, ‘You have no idea how wonderful it is to be able to breathe! People take breathing far too much for granted!’” It was also strange reading about her death, and knowing that I was (according to my Dr) quite close to that, and yet by the grace of God, I have been spared. It feels like I have won the biggest jackpot in the world, being given a second chance at life.

Sixtyfive Roses just makes you so grateful about everything that you take for granted, and it is one of the best books I have ever read, although I may be biased of course! I certainly recommend it to absolutely everyone though.

For more info, go to http://www.sixtyfiverosesthebook.com/

Pretoria Botanical Gardens

Father's Day and the long-weekend...

The weekend in Pretoria was very relaxing and nice. Not that I've got a hectic life otherwise, but you know what I mean. My visit to Pta started off with visiting a friend, Patricia, and her boyfriend Jacques and his sister and her boyfriend. So even though I was the only single one surrounded by couples, it was a lot of fun, and we had a great time. Had some yummy mexican food and even yummier Southern Comfort with lemonade...

Yesterday was Father's Day obviously, and I took a pic of my dad and grandpa, as we were having 'pap en wors' ( it's sausage and like a stiff porridge with tomato stew on top- very nice and traditional) for breakfast. Two of my dad's brothers and their wives, as well as my cousin, her husband and her 2 adorable kiddies, came over for lunch. I saw my niece and nephew for the first time this year, as because I found it so hard to breathe at this altitude with the old lungs, I never came up to visit. It was SO much fun chasing them around on the lawn, something I wouldn't dream of doing 5 months ago.

This morning my dad and I went to Pretoria's Botanical Gardens for a walk and some coffee. Took lots of pics, which I will post tomorrow!

I'm off to Pretoria.

You won't hear from me again before Monday, as we are going to visit my grandfather in Pta for the long-weekend!! And I'm going out with a Pta friend of mine tonight, so looking forward to that a lot!! And tomorrow the rest of the family are coming over for lunch at my grandfather's place. Should be very nice indeed.

I've been invited to be an "exclusive health blogger " at http://www.wellsphere.com/ It seems like they are busy launching a CF health community. This should be very interesting!!

Don't have much more news... yesterday was a great day, gym was fantastic, and spent a lovely afternoon and evening with 2 new friends, Craig and his sister Bronwyn. So happy to have met 2 such wonderfull people!!

And to all the dads reading this: HAPPY FATHER'S DAY!!!!!!!! (for Sunday)

The good, the bad, and the very bad

I'll start off with the good... Someone got a lung on Wednesday night!!! It was a guy who probably had pulmonary fibrosis or something, but he only needed one lung. And he's doing great, so that's excellent. Now for bad #1: a woman who had a heart transplant (along with the previous lung tx), died yesterday. I never met her, but I did meet her family in the hospital coffee shop, and they were SO nice, and excited about her transplant. Really sad... and bad #2 is REALLY BAD...

Tricia may have cancer, in fact, it looks like she definitely has it. It's a post-transplant cancer called PTLD. And she has to undergo a surgical biopsy today. (although with the time difference it's happening tonight) That means surgery and another chest tube, which is really the most evil thing in the world. I am REALLY so bummed for them. They've come SO FAR, and now this. They were just back home, and now she's back in the hospital. My heart and prayers really go out towards them. Please pray for them!!!!

Yesterday was very domesticated. Did loads of ironing, had to clean the kitchen real good, because it was quite a mess, had to go buy lots of food, cause the cubboards were empty, and of course had all that blood sucked out of me! Will get the results today, hopefully the adjustment in my meds has delivered the desired results.

Last night I went to a very interesting ethical discussion. It was about END OF LIFE CARE. Two of my Drs lead the discussion, and one had a hypothetical case study, and the other a real life one. I was more interested in my Dr Paul's hypothetical one, as it was about a 20 year-old CF girl, who had seen 2 older brothers die of the disease, and had decided that she did not want mechanical ventilation. However for some reason she had gone into renal failure, and by giving her dialysis there was a chance that her respiratory situation would worsen and she would need to be ventilated. She had also rejected the transplant option. So the discussion was on what treatment to give her, and how important her autonomy was etc. The discussion got more interesting when it moved towards transplant, and at some point someone was talking about how it would be wrong to persuade her into transplant when she clearly wanted to die or something like that... all that I can really remember was that I was really itching to say something, and so I did. I was pretty nervous, as I haven't talked in front of even a smallish group of people like that since high school, so I can't remember exactly what I said. I do remember saying that if I was in that situation I would WANT someone to persuade me into having a transplant, and that I would want to talk to someone who HAS had one, and that the medical options had probably changed since her brothers died. Well whatever I said, I seem to have made my point, so that's good.

I'm off to gym now, after I've had a small breakfast. The pic I put on is something that I found on Sam's (the girl who died because she didn't get lungs...) blog. Ironic.

(Annelie's) leaving... on a jet plane...

So it's almost time to say goodbye... Taking my mom and Annelie to the airport in a while... quite sad! Last night's supper was great though, in the end we didn't go to the Greek restaurant, but Founder's Grill, as it seemed more warm and cosy. Had a steak (of course), and they even brought my mom a suprise birthday cake!!


Went to gym this morning, starting to do some upper-body stuff as well now. Had a horrible dream last night... dreamt that my Prograf fell on the ground, and that I didn't see it. I then only realised at 4pm that my Prograf was laying on the floor, and that I had missed a dose. I then frantically tried to phone my Dr, but he had disappeared off the face of the earth, and I didn't know what to do...

Anyway... going to see a movie tonight with a friend, so looking forward to that. And I have to get some blood taken tomorrow morning. Well, actually, about 10 tubes of blood, so I can't really say it's 'some' blood... it's loads of blood!!!

My mom's birthday so far...