ChariTea Speech

So, here is the Speech I gave at the Event

You know the saying, if you fall off the horse, dust yourself off and get back on,

Well living with cystic fibrosis is exactly the same. There is many a time that you have to pick yourself up and carry on.

Life with cystic fibrosis is hard, you love, you laugh, you cry, you want to scream and shout, you want to know why, why me?

Why is it me, who can’t breathe?

Why is it me who has to go back and forth to the doctor, why is it me that has to live on oxygen,

Why do I have to go into hospital every 3 months for 2-3weeks?

These are just some of the questions that myself, and other cystic Fibrosis sufferers ask ourselves on a regular basis.

Being a CF sufferer is such a strenuous thing, it is exhausting. Having to wake up at early hours of the morning every day to begin our treatments and to do our nebulisations and physiotherapy, it never stops, it just keeps going on and on. Once the morning routine is done, it’s time to find a good hearty breakfast, only to be followed by pills, pills, and more pills. Throughout the day you’re taking medication, and before you know, it’s time to do your evening treatments, only to fall asleep and wake up to start it all over again.

Keeping myself alive and healthy is my main goal in life.

I am at the point in my life, where I now need a double lung transplant.  This is what I am living for. To get new lungs because mine are deteriorating, they are dying and so am I. It is a waiting game, lung roulette shall we call it.

My whole life I have known I’ve had Cystic Fibrosis, but thought that I was normal, I haven’t known any other life. I used to get teased for always being too skinny, or coughing too much.  My peers always asked about my pills.  They were fascinated by them and I had to tell people over and over again what they were and why I was drinking them.  When I was in junior school it was sometimes easier to just leave them in my lunch box instead of drinking them which didn’t help my digestive system and then I would have to hide them away from my mother so she wouldn’t know I wasn’t drinking them.

I was never in a relationship for very long, because when things got bad, and I got sick, my boyfriend at the time couldn’t handle the pressure and would break up with me.  It eventually makes you wonder if you are worth it? Do you deserve to be loved? Why won’t anyone love me?

I almost live in a bubble because I am afraid of catching germs that will make me sicker.  In 2012 I nearly died, because I had picked up a pneumonia, which then caused my right lung to collapse and I ended up in hospital for 6 weeks.  At that stage my doctors told me to seriously give consideration to having a lung transplant.  It was scary to think that a lung transplant was the only option the doctors saw to prolonging my life. At that stage my Lung Function was 17%, I was wheelchair bound, I never left my bed and I was on continuous oxygen.  From Steve Biko hospital I was referred to Charlotte Maxeke  to the cystic fibrosis adult clinic and ward 496.

Since then, many admissions and lots of hard work, my lung function is up to 29%. I no longer need the wheelchair and 24 hours oxygen.   I only use oxygen now while I sleep and when I need it. All the hard work from the staff, the physio and me has paid off. I realized I wasn’t going to die.  Look at what  has been  accomplished since then.

It has been a rough road these past couple of years.  At the same time that I became so ill, my dad lost his job and he has always been the breadwinner in the family.  The doctor I was referred to about having a lung transplant said it would be best for me to go on a medical aid in order to have the transplant but with family finances being as they were we decided to open a trust fund to raise money for the operation.  Other CF’s kept telling us I had to be on a medical aid to be listed but no one could give a reason why.  My dad read the Health Act and wrote to the minister of health as well as the state hospital superintendents’ and no one could tell us why I had to be on a medical aid.   Eventually after almost a year my doctor at Charlotte Maxeke gave us the reason.  After that I joined a medical aid and have recently seen through my year of exclusion.  It has been just been one month of being able to benefit from using the medical aid and so far it has been one email after another and one phone call after another trying to get approvals etc.  I’m sure once everything is in place it will be easier but at the moment it is frustrating and stressful. I am sure that there will still be many more obstacles for me to conquer in the future, but it’s all along the path to having a transplant which I still need even though I have improved so much since 2012.  It is just not as urgent now as it was then.  I have been very blessed with my improvement but there are days I really wish it were over.

So now begins the waiting game, my lungs are still deteriorating but I am not afraid of dying, I am afraid of the calls I will get saying they have new lungs for me, only to find out when I get to the hospital that the call was just a ‘dry run.  I am afraid of how long I will have to wait, will I wait, days? Months? Years?  Or Will I ever get lungs?  I believe there are only about  5 lung transplants done a year in South Africa because there are not enough organ donors and matching donors to recipients is tricky, but I am still prepared to wait.

To end I leave you with this thought:  One organ donor can save 7 lives. If you take all the ladies who are here today, (60 Ladies, become 60 donors,   60 donors x 7lives =  420 lives saved) you can give 420 people like me, a second chance at life. So please, sign up to be an organ donor, let’s pay it forward and help our fellow man.

Thank you.