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Tuesday, August 7, 2012

The hard reality

Hey everyone

As you know I recently started a blog, so you can join me on my journey. I was going to be taking through all the trials and tribulations that go along with having Cystic Fibrosis. However today I am not able to do this. I am afraid I am going to be blunt, and say things as they have been said to me.
Today has been a very emotional day, so please excuse me if I may come off sounding a bit hard. I am not bitter or anything J Just tired.

Today, my parents, my doctors and I had a meeting and things were explained to us very bluntly that, I am not doing well. Over the last 7 months, my disease has digressed at such a rapid rate, that I have no other choice but to have a Lung transplant. I have reached that stage now where Simply, if I do not get a transplant within the next 6 months, to a year (God willing I will have more time), I will not make it.
The doctors are now very concerned, as I am being hospitalised so often, constant lung infections, my battle with picking up weight. For example, when I came into hospital almost 4 weeks ago, my lung functions were sitting at 25%, and now 4 weeks down the line, even though I am feeling better, they are still the same. Scary, considering I have been getting all the things I need to help me. Physio 2 times a day, Antibiotics 5 times a day, Corticosteroids, exercise, protein shakes etc. and they are clearly not helping to the extent that I need it to.

I am having a PEG put in tomorrow, so one problem has already been solved, my weight battle, with tube feedings every night, I will be able to pick up the weight I need for the transplant, and it should hopefully make me a little bit healthier too.

Another thing that I am going to have to look into now is portable oxygen. So I will be assessed by the hospital and I will hopefully be given one, as at this stage in life, I do not think I can function without my oxygen. I will be needing it as I do not want to be putting further strain onto my other organs.
I AM NOT giving up, there is still hope. The Lord knows his plans for me, and I trust he will keep me around for a long time to come. I am not just going to lay back and let life slip away, I am a fighter, and this is my life I am fighting for.
What has to happen next is I need to get onto a medical aid. That is the easy part, the hard part is the year between being on medical aid and being able to claim anything. The thing is, my doctors don’t know if I can wait that long to have the transplant. So, what I am going to be asking of you all, with the biggest please in the world, I need help to raise funds for my transplant. I need sponsors. Anything will do. For I need to have the money available for if I need the transplant before the year of the medical aid is up.
I am not very good with these whole proposal things, but from the bottom of my heart I am asking you from the bottom of your hearts, to please help me do this. Please help me with any thoughts and ideas that you might have as to how we can get money for this transplant.

How should we do this? Should we write a letter every single day to ‘’Good Morning angels’’ on jacaranda? Should we contact Çarte Blanch? How can we get support and people to know about this disease? Any ideas? And please if you want to fund raise yourself, please do. I know I am going to do everything I can, even if it only brings in R50 at a time :-D

I want to start a revolution of some kind. Not to just benefit me, but to benefit EVERY single person in this world who has this disease. I owe it to myself and to all Cystic Fibrosis sufferers to help them for I am not alone in this.
I have a long way to go, but with all your love and support I can do this 

Thank you for taking the time to read this. And please do give me feedback.

Fabulous and fighting <3

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