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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