Gauteng, Freestate, Mpumalang, Kwa-Zulu Natal, Eastern Cape all in the span of 2 days.....
If you are wondering why that is, it is because I have just come home from two week IV treatment in Jhb. I have managed to stay out of hospital for 4 months, which I am and my doctors are very proud of.
After 2 weeks of treatment, my lung function only went up by 1%. That's alright I suppose, sometimes admissions don't always yield amazing results.
Anyways, Kyle came up to fetch me on Thursday and we stayed the night with his family. and drove back to KZN on Friday.
On Saturday morning mom and I had a brilliant time at the market, we almost sold out of cupcakes!! Thank you to everybody who has been supporting our business SQ CREATIONS :-)
Monday, March 21, 2016
Tuesday, March 8, 2016
News Letter 2/2016
The
Fabulous & Fighting
CF Trust
Registration No
IT 1010/2012/PMB
Supporter of
SACFA
DUM SPIRO
SPERO – While I Breathe, I Hope
Newsletter No. 2/2016
Dear Family and Friends,
I write to you today from Milpark Hospital in
Johannesburg, having been admitted on Wednesday of this week.
It has been slightly longer than usual since
my last clinic visit and admission, and the decision to lengthen the spacing
has been made for a number of reasons.
Instead of travelling up to clinic once a month, we are going to try and
stretch the timing to once every 6 weeks to a) cut down on personal expenses
and b) save on medical aid claims. On
discussion this week with one of my doctors, it has also been decided to cut
back on my admissions as much as possible without my health being unduly
affected.
Recent test results show that
I have CRE (Carbapenem-Resistant Enterobacteriaceae) as well as my usual
pseudomonas strains which complicate my wellness a bit further.
As my doctor explained to me, I have been
resistant to antibiotic treatment for many years now so this is not entirely
new in factoring my treatment base. I am
still managing to obtain a feeling of ‘wellness’ after being given IV courses
of Colimycin (Colistin), which I also have in my nebulizer daily as a
maintenance medication when at home.
This is always given together with another antibiotic so that maximum
effect can be achieved.
At the moment I
am having Tazibax and Colistin as Intra Venous antibiotics and Augmentin
orally. With each admission in the past
year, the doctors have had to be very careful to check my sensitivities to
antibiotics and initially slowly administer them to make 100% sure I am not
allergic to them. Sensitivity and allergy
do not necessarily go hand in hand….results to testing the ‘bugs’ in my system
may show that I am sensitive to a particular treatment if given, ie: I can use
it and it should ‘help’ in treating them, however allergies can only be
confirmed once administered. If I have
an allergic reaction of swelling, itchiness or constriction in my breathing,
like I did with my last admission and the use of Fortum, then the antibiotic
has to be stopped.
In other words, I was
sensitive to Fortum but allergic at the same time….if that makes any sense to
you. Being resistant to antibiotics is a
completely different matter however, as it means that no matter how high a
dosage I am given, it will make no difference what so ever as the bugs have
become immune to them and resist any ‘good’ they may be able to do. I have, as mentioned before, become resistant
to all antibiotics at present, so now having CRE is just another challenge for
my system and a complication for my doctors.
CRE for a ‘normal’ healthy individual is not of any concern, it is only
a concern to those whose immune system is impaired due to ill health.
I am in an isolation ward and the staff are
to be more meticulous when coming into my room and again when leaving so that
they do not infect any other patients on the ward, but I may have visitors….please
just remember to wear a mask when coming in if not feeling 100% yourself. My saturation levels are a bit low at the
moment if I am not using oxygen and today when tested without breathing in aided
oxygen, they were 76% but once ‘hooked up’ to the free flow oxygen they went
right back up to 95%.
Finally I have
been able to do my night feeds on a regular basis after medical aid relented
and said they would pay for them so my weight is now just below 57kg. Good – yes but not good enough to satisfy my
doctors who are determined that my BMI should be at a minimum of 20. I am almost there and am trying very hard but
it is a long slow journey. My lung
function is stable and seems to have hit a plateau which is good in that it has
not decreased.
So that is my health update and now for the rest
which will be very quick and very low key….
Before I came to hospital my aunt treated me
to a new ‘hair do’….colour and cut, which has done oodles for my self-esteem.
(Note photo at top of newsletter)
Finally, the day I was admitted to hospital, we lost
two of our horse children. Both on the
same day and it appears, totally unrelated incidents, but nonetheless
devastating to us all. Angel developed
colic and even though the vet was delayed in going out to us, by the time he
did arrive it was too late for her so she had to be euthanized. She was, as my mom told me, in huge amounts of
pain and very uncomfortable, so it was the kindest thing to do. Yash, my baby who we all loved immensely,
suddenly developed blindness and in a freak accident of not knowing where he
was going, crashed through all the fences and fell down the bank leading to the
back of our house. He hurt himself in
the process and the shock killed him. It
is still raw in my heart and I don’t know how I will feel when I get back home,
but for now I am coming to terms with them both dying.
This is last very time that I was with Angel and Yash
So
this is it for today.
Thank
you one and all for your presence and support in my and my family’s lives, we
love that you are always there for us whenever we need you.
God bless
you always
<3
<3 NiQi <3 <3
The Fabulous and Fighting CF Trust banking details are as follows:
Bank : First
National Bank
Account Name : The Fabulous and Fighting CF Trust
Account Number : (ZA) 62371509062
Branch : Midlands
Mall
Branch code : 250655
Account Type : Current
News Letter 1 / 2016
The
Fabulous & Fighting CF Trust
Registration
No IT 1010/2012/PMB
Supporter
of SACFA
DUM SPIRO SPERO – While I
Breathe, I Hope
Newsletter No. 1/2016
Dear Family and Friends,
I hope you all had a lovely peaceful and restful
Christmas period and managed to safely see in the New Year. I am not a philosophical person by nature and
do not make New Year resolutions, which I know I would not keep, but I am
believing in a year that will bring me strength to see me through the difficult
times and faith to know that God is in control of my life. That being said, I will embrace to the best
of my ability all that comes my way with as much positiveness as I am
able.
Since I last wrote I have managed to keep the summer
bugs away and hopefully the worst time of year for me is now over and done
with. The cortisone seems to have helped with my asthma and kept it under
control with limited whistling and wheezing.
I confess I haven’t been very active of late as the energy levels have
sapped a bit with the hot summer days and the best exercise I get is walking
down and up our steps. The rainy, cooler
days in between are a wonderful boost to me and the reason I think that I have
managed so well so far. I will not lie,
my happy bubbly spirit is tired at times and I have taken to resting more
often. As ever I push myself to go for
as long as I can without resorting to using my oxygen during the day but I
continue to use it while I am sleeping.
The never ending story of medical aid and gap cover
continues which does little to alleviate the stress I feel at trying to sort it
all out. Just when I think all is well I
receive another email with yet another tail with a twist. I guess it is one of the things that I have
to deal with and together with my mom we are slowly working away at it all.
I went to clinic almost two weeks ago and my doctor
was happy with my progress. She said
that it looks like the move has been good for me as my lung function increased
to 30% again, wheezing and all. My
weight is still a bit low for transplant but my appetite is still good and I am
eating well balanced regular meals.
I am
being admitted for treatment again on 2nd March and will probably
stay the full two weeks as between medical aid and gap cover neither seem keen
to pay for my TTO’s (medicines I am sent home with to continue my treatment
until 14 days is completed.) It will be
a lonely time for me as my mom and dad will not be able to stay away from home
for so long…dad must go to work otherwise it piles up and takes him a while to catch
up.
My mom and I have started baking and have a table
with cupcakes at the Farmers market early on Saturday mornings. We are only allowed to make and sell them as
there are already two other ladies baking cakes and tarts etc. My task is the admin and PRO work and mom
bakes and ices. Any other orders are
welcome and we are not limited in doing anything else.
We are trusting that we will soon be making
enough to cover my expenses of medical aid and clinic etc which will take the
burden away from fund raising in our weakened economy and we will hopefully be
able to build the trust fund up again ready for transplant.
Well I think this is all my news for now and as I
leave you I remind you of my motto – ‘Dum Spiro Spero’ While I breathe I
hope.
This is after all what my life is
all about….one breath at a time. Thank
you for reading this. Thank you for
supporting me.
Thank you for
understanding how much I need you.
God
bless you always
<3
<3 NiQi <3 <3
|
|
Bank : First National Bank
Account Name : The Fabulous and Fighting CF Trust
Account Number : (ZA) 62371509062
Branch : Midlands Mall
Branch code : 250655
Account Type : Current
Swift Code Firnzajj
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