Thursday, March 31, 2011

Day 11 31/03/2011


This year it will be 10 years since I had my liver transplant. I was diagnosed with liver disease at the age of five and it was due to the CF that this problem occurred. 3% of all people with CF have liver disease and then not all of them go on to have transplants. I was the lucky 3 I always say. So as I said I was diagnosed at five years old. Then from there I went onto have a work up to see if I could be put onto the transplant list at the age of six. But at that time the doctors felt that I would not survive the transplant as they had never done a CF at that hospital and again at that time only 75% of people were surviving. So the doctors told me that as my case wasn't so bad yet I could go on living but if my results went down they would have to re-look at transplantation.

So life went on with out a transplant and it was hard! I looked like I was born out of poverty in Africa, and my brother used to call me the Rwandan child. This was because my belly was so big and filled with fluid, but the rest of my body was so skinny. When I got to high school some of the kids thought that I had anorexia because I had to wear clothes so much bigger then me because of the belly, but they also looked lost on my frame. I was yellow looking, with my skin and eyes turning that tinge. This is called jaundice and is caused by increased levels of bilirubin in the blood. I also had an enlarged spleen, spider veins and varcus veins, which all meant I could do the things I really wanted to which was touch football and gymnastics because if I hut myself I might cause a bleed that no one could stop. It also meant no yelling because the veins could burst and if you have ever met me or my family that is not an easy feet!
Oh and I just wanted to wear normal pants and dresses like the other girls! Basically I wanted to be normal!

*More on this story tomorrow! Enjoy the photo of my scar!

Wednesday, March 30, 2011

Day 10 30/03/2011


This blog post is for my mum. She is the beautiful lady that you see in two of the photos below.
She is my inspiration to life, she is hard working, loving, funny, warm, truthful, kind and most of all supportive. She has been there for me even when I have let her down and she is the voice in my head telling me I can do better. She has been on the CF association almost all my life and has found great friends amongst the other parents. And when I lost a friend to CF she was at his bedside for the both of us until he passed away.

Thank you mum I would not be here without you.

Day 9 29/03/2011


People often ask me how I deal with everything. And to be honest I don't really know. I know that I have the most amazing and supportive family who have been by my side through everything, even when I have been self destructive. And if I am being honest I am not the most, what do the doctors call it "Compliant" patient. Also having beautiful friends who I count as family, all of these people give me hope and laughed.

But in the end the biggest copping tool that I have is my humor. The ability to laugh at yourself and to laugh at the situations mean to me that there is always something to hold on to and some thing to reach out for. I trust my humor. It's my strength.

Also one more thing that helps me deal is the spider boy.
About 10 years ago my auntie went to India and there she met this boy who was begging the tourists for money. This boy had, had his arms and legs broken so that he now walked like a spider. One of the tour guides told my auntie that the people who owned the boy had broken his arms and legs like that so that he would get more money from the tourists.
So when she came back she told us all the story of the spider boy, and from that day on my mum has never let me forget it! Every time I cry or complain she says to me 'your not the spider boy!' And while after ten years it has turned into a huge joke between me and my mum, it does help to remember that I have great things in my life and I have been able to do great things and there are people who wont. The best way to get over yourself is to help others!

A new find

My sister found this blog site for me! It is of a CF girl like me living in America, she has passed away but I love this blog. A little different from my own but really truthful, deep and fun. Check it out!

Tuesday, March 29, 2011

Day 8 28/03/2011


So again today we are learning about CF. From the last post we have learnt that it is the most common life threatening genetic disease. And that I have had it since birth and it SUCKS!
But did you know that 1 in 25 people in Australia carry the CF gene, and that the life expectancy is 35 years old.

Little bit of a diagram for the viewers:

Day 7 27/03/2011


Hey guys another day in the life of a sick girl!
Well what can I educate you about today.... Lets start at the very start of my life.
I was born with Cystic Fibrosis and was diagnosed at six months old. So I guess you could say that I have had it my whole life. And what is CF you may ask? Well here is some info I pulled off wikipedia earlier:
Cystic fibrosis (also known as CF or mucoviscidosis) is a common recessive genetic disease which affects the entire body, causing progressive disability and often early death. The name cystic fibrosisrefers to the characteristic scarring (fibrosis) and cyst formation within the pancreas, first recognized in the1930s.[1] Difficulty breathing is the most serious symptom and results from frequent lung infections that are treated with, though not cured by, antibiotics and other medications. A multitude of other symptoms, including sinus infections, poor growth, diarrhea, and infertility result from the effects of CF on other parts of the body.

CF is caused by a mutation in the gene for the protein cystic fibrosis transmembrane conductance regulator (CFTR). This gene is required to regulate the components of sweat, digestive juices, and mucus. Although most people without CF have two working copies of the CFTR gene, only one is needed to prevent cystic fibrosis. CF develops when neither gene works normally. Therefore, CF is considered anautosomal recessive disease.

Thank you wikipedia! Anyway so I have lived with this disease my whole life and let me tell you it has been hard! But of all the things wrong with me this is not one of things I would take away! But then again this disease did lead to everything else so maybe I would let it go!

So what can I tell you about it, well it means that every time I eat I have to take medication to help me absorb the great stuff out of it (ect vitamins). And that I go into hospital alot! (and I mean alot) in my life time I have been in hospital over 50 times! And when I go in I am stuck to a drip which then becomes my best friend, even coming me to the toilet!
There is so much more to share with you about this disease, but I want to share the hardest part. For me it's the thought of dying young, and the last years of my life being attached to an oxygen tube and then suffocating to death. At the moment my lung function is at 76% and I am so scared every time that number goes down. The thought that I don't really get to dream about a future is the hardest part.

Day 6 26/03/2011


The next few blogs are all going to be about education. I have been through how long it takes and what time I have to take my tablets but I think it's time to educate. I want to inform you about what illnesses I have and what each of the medications do.

Today we are going to start with what illnesses I have:
-Cystic Fibrosis
-Liver transplant

I will go through each of these illnesses in more detail in coming blogs. But today I want to educate you about MONEY! And how much it costs me to live with these disability's.

Cost per year:
-Creon $67.20
-Taculims $67.20
-Insulin $65.41
-Vitamin D $14.95
-Multi Vitamin Free
-Flo 50 Sachets $320.47
-Salt tablets $320.83
-Baby Shampoo $21.13
-Magmin $167.52
-Pulmicort $67.20
-Saline $160.60
-Needles Free
-Test strips $12.88
-Movicol $315.72
-Pill $16.80
-Antibiotics $204.40
-Misalliances $150


-Privet Doctors Visits $636
-Missed days of work (estimate)
=20 per year
=$144 per day

All up meds, doctors ect cost me an estimate of around $5375.76
Which works out to be 17.5per cent of my income.
Enjoy the blog!