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Wednesday, August 6, 2014

News letter 6

Hi Everyone,

My but doesn’t time fly when you are busy and having fun!!!!  This last month went by in a whirlwind and all I remember is it’s been a very trying time for me.  This being an adult and responsible is such hard work, but I guess we all reach a point where we just have to grow up and show that we can manage with the skills our parents have been knocking into our heads all these years.

My visit to hospital was very good.  Being a patient on the ‘other side’ has its advantages – especially when it comes to the dietary side of things.  I was amazed at the fact that I was actually given a choice at mealtimes, something for me that proved as always to be a bit of a ‘headache’ as I am an indecisive person at the best of times…haha.  Double portions went down well and the fact that I was on cortisone and had an increase in appetite, meant the worms weren’t grumbling as much.  I was in ‘wifi heaven’ with the free wifi which saved my airtime on my phone and gave me an opportunity to update everything on my laptop.  I left hospital after a full two weeks with a new lease on life.  Thank goodness the physio’s there believe in doing percussion on sick patients as I have missed not receiving enough in the last couple of years of admissions.  My weight exploded and again I am a chubby cheeks and not gaunt and haggard as I had become before admission.  My lung function increased to where it was a few months ago and my energy levels made me feel like a little energade bunny going on and on and on…lol.  Whilst I was in I had my ‘work up’ for transplant.  I met the whole team, surgeons, physio, dietician and psychologist.  It is all rather daunting and I suddenly realized how very real this whole thing, if I can call it that, is becoming.   The last couple of years it has been an idea…a dream…and now it may just be real life.  I have so much to learn and I pray that I will be ready when the time comes to accept new challenges that are ahead.

Wow….since then I have sent e-mails back and forth to pharmacies, doctors and medical aids all in an effort to get my medicines and a new nebulizer.  At least I can say with confidence that I have a new nebulizer.  Approval had to be given by the medical aid to purchase it and it has now been paid for and delivered to my doctor, so I will collect it tomorrow when I go to clinic.  Sadly, I have not been so successful on the medication side of things.  Before I left hospital medical aid advised me they would not pay for my chronic meds!!!!!!!!  My doctor had to send through more motivation to them to get approval and the long and the short of it is that I have gone the whole month eeking out what I have and begging from other CF’s to see me through.  Too much drama for me I’m afraid which has left me highly stressed and frustrated.  I am at the point where tomorrow I hope my doctor will give me the original documentation for me to e-mail through as the pharmacy group providing my medicines say the scripts are illegible.

SACFA are promoting CF in South Africa this month having broken the mould from the regular May slot.  They are working together with a company who have experience in publicizing efforts for health disorders.  I am going to do a short interview on ANN television tomorrow which should be live streamed for those who don’t have access to DSTV.  I’m pretty nervous so please pray I will be able to pull it off.  It is also organ donor month this month and I am going to a charity event on Saturday organised by a fellow ‘CFer’ who received new lungs last year.  I am going to take photographs of the event for her as well as speak for a few minutes on what it is like waiting for lungs.  Please keep me in prayer for that too.  I am a very private person and not had any experience in public speaking so this is quite daunting for me.  I guess we all have to start somewhere and this is a first for me.

Being in hospital and with the medical aid now working for me, the bills started rolling in.  Lucky I don’t have to worry about that as the finances of the trust and gap cover pay the shortfall on the accounts.  It has made me realize anew that you are such awesome people for without you and all you have done and still do for the fund, I would not be in the situation that I am right now.  You are the reason I may one day have a lung transplant.  Thank you so much, I cannot express sufficiently what it means to me.
Well I think I have brought you up to date with my life now.  Sorry this is so lengthy to read, the next letter should be shorter.

God bless you always


<3 <3 NiQi <3 <3


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