Fabulous and
Fighting CF
Background
This is a page
about a brave young lady, born with a disease called Cystic Fibrosis (CF)…and
the illness that she lives with on a daily basis. (Story told by her mother,
Suzanne Lucas)
NiQi was born on 21st September 1990 to
a teenage single mum, in Vryheid, Kwa-Zulu/Natal. For the first 2 months of her
life she was raised by her maternal grandparents, after which she was taken
away by the Welfare Department and hospitalized for reasons thought to be
neglect. After a month of being in Vryheid hospital and not responding to
treatment, she was transferred to Greys’ Hospital in Pietermaritzburg.
After months of treatment and various
tests, she was eventually diagnosed at the age of 6 months with Cystic Fibrosis. It was at this point in time that we met her through our
late son’s paediatrician. Mark was being
treated at the same time for a lung infection in McDonald ward of Greys’
Hospital. It was because of her
diagnosis that both Welfare and the paediatricians thought it would be in the
best interests of NiQi, to find her a foster home, instead of the alternative,
which was to be sent to a children’s home.
On the very same day, three different
people from three different areas of our lives contacted us to tell us about
this precious baby girl that required a home! We felt in our hearts it was
God’s will that maybe we bring her home and care for her. After discussing it with our own two boys and
they deciding they might like to have a sister at home with them, we began the
process of fostering and were able to bring her home with us upon Mark’s
release.
So, at the age of 7 months, NiQi came home
to live with us and has stayed to this day….
As a youngster, NiQi enjoyed an active lifestyle
and with correct diet, proper health care and a rigorous medical regime, we
were able to keep her fit and healthy.
It was advantageous to her wellbeing that she preferred to be playing
outside, climbing trees and being a regular ‘tomboy.’
She swam daily in the summer months,
using both our pool at home and that at school, participating in the school
swimming team. She loved nothing better
than to be active on the sports field and excelled at both netball and
athletics. She enjoyed playing hockey
and even tried her best at cross country, although she did not have the stamina
for long distances and most often arrived last at the finish line. Her sheer determination to finish made her
see the end of each feat and after every event said she wouldn’t run
again…until the following week.
She played cricket in junior primary and
was proud to be the only girl on the team, most times showing the parents of
her ‘boy’ peers that a girl can field and bowl as well as any of their
sons. She owed her cricket skills to the
many hours of playing with her older brothers, who honed in on her fielding and
bowling skills, allowing her very little batting time. LOL.
When at home, if she wasn’t swimming,
she was racing down hills on her skateboard and tumbling down banks on her
bike, or riding with her friend and neighbour, on a pony called Snowy. Over the years her love for horses and riding
has stayed with her and at any opportunity she will ride someone’s horse for
them. Taking youngsters with her and
sharing her passion of these magnificent animals with them is a part of NiQi’s
life she has been loath to give up.
It was all to do with budgeting and
serving the local community and we understood the reasons fully, however it did
mean that by attending Greys’ Hospital, we were not privileged to have the
expertise of cystic fibrosis practitioners, as had been the case at
Addington. The paediatricians, who had
in the past been part of the medical team of doctors attending to children in the
hospital, were by this time no longer working as consultants at Greys’, however
they saw NiQi regularly in their rooms at no expense.
When the paediatrician who consulted
with NiQi on the most regular basis left South Africa to return to Holland
around 2003, we had no option but to consult solely with the clinic doctors at
Greys’ Hospital, none of whom appeared to have the experience required in the
treatment of cystic fibrosis. Finally
near the end of 2004, a particular doctor who attended to NiQi at the general
clinic decided that because her condition was in his opinion, stable, she should
be transferred to Northdale Hospital.
It was at this point that we realised if
we wanted NiQi to have a better life and more positive prospects, we needed to make a
move away from KZN to Gauteng, to a more stable life of better healthcare. So it was at the end of her Grade 8 year,
2004, we made the move, knowing that it was in the best interests of NiQi and
any future health care that she may require.
Unfortunately when she hit puberty, her health
started to show signs of decline and the older she has become, the more
difficult it has been to keep her at an optimum level of health. The move did however present another problem
for her being that her asthma which had up till then been seasonal and very
much under control became exacerbated with the change in air and environment.
This hasn’t helped with the
deterioration of the cystic fibrosis, in fact it has hampered her lifestyle
more so at times than maybe would have, had she been dealing only with the
cystic fibrosis.
What many people who have little or no knowledge
of the disease don’t understand, is that as normal and healthy as the person
may look on the outside, it is what is happening to the body on the inside,
that determines their prognosis. The disease is debilitating and because there
is no cure, it is a daily battle, to try to keep the patient at a level where
they can enjoy a normal lifestyle.
We settled on a plot north of Pretoria
and because of both the distance and her early morning regime of nebulising and
physiotherapy, she completed her schooling through Damelin Home Schooling,
attaining first her ‘O’ levels and then her ‘A’ levels.
Since then she has battled to find sustainable
employment because of her illness and the fact that she is hospitalized so
regularly. Her dream is to one day be a photographer. Friends and neighbours have at times very
kindly lent her their cameras to document special occasions in other peoples’
lives, like weddings and birthday parties and social functions…something that
she thoroughly enjoys.
Hospitalization
NiQi usually has hospitalized treatment every 3 months. Sometimes however, she has to be admitted
earlier than that…it all depends on how she is coping between admissions. The time of the year, different seasons, all
have an influence on how she is. For
many years after moving to Pretoria, she attended the CF clinic at Steve Biko
hospital. The doctors are well qualified
and learned specialists who really care for their patients. Hospitalization is
usually for a period extending from 2 to 3 weeks at a time although there have
been a couple of occasions when she was hospitalized for longer. Most times, if she has a lung infection that
needs treatment before the 3 month time period is up, she is given oral
medication to help tide her over, however if it becomes really bad and is
reduced to having added oxygen on a daily basis, it is then when she is
admitted earlier.
One problem that has materialized with
her current treatment is that she seems to have developed a resistance to ALL
antibiotics but one. This makes treatment and eradication of infection much
more difficult and less easily treatable.
Miraculously, she pulled through and the
attending doctors managed to make an appointment with a pulmonologist from
Milpark Hospital, with a view to discussing a lung transplant for her.
She saw him in January 2012 and he
reckoned she would be a good candidate for a lung transplant, adding that her
cystic fibrosis hadn’t deteriorated too far as yet.
She continued to attend Steve Biko
Hospital both at the clinic as an out-patient and in the wards for IV
treatment.
In July/August 2012 she once more had a
massive set back and the doctors predicted that without a lung transplant, she
would not live for more than 6 months. Her lung function had rapidly decreased to 17%
and she was wheel chair bound, having no energy or strength to move around
without receiving 24 hourly oxygen.
Medication
NiQi has a fairly extensive list of
medication that she uses on a daily basis, which is a lot for anyone to have to
remember to take even for a short time period, however after all these years
she has formed a pattern in her daily life, so each day she wakes in the
morning or before she goes to bed, she sticks to the same routine of nebulizing
and physiotherapy. By the same token, as
often as she eats a meal or snack, she reaches for the pills that will digest
her food…and so each day has become habitual. Just so you may understand the
enormity of such responsibility here is the list of her current medications.
No
|
Name
|
Dosage
|
1
|
Seretide
|
2 puffs once a day
|
2
|
Osteobon/Fosamax
|
1 tablet daily
|
3
|
Creon 25000
|
30 capsules per day
|
4
|
Zithromax
|
1 tablet 3 times a week
|
5
|
Ulsanic
|
10 ml 3 times a day
|
6
|
Ursatan
|
300 mg 3 times a day
|
7
|
Texa/Allergex
|
1 tablet daily
|
8
|
Ipvent
|
puffs when necessary
|
9
|
Singulair
|
10 mg daily
|
10
|
Tobramycin
|
80 mg twice a day
|
11
|
5% saline
|
nebulise when
necessary daily
|
12
|
Nebrafin
|
1 ampoule twice a day
|
13
|
Losec
|
20 mg daily
|
14
|
Naproxin
|
250 mg twice a day
|
15
|
Solmucol
|
1 sachet 3 times a
day
|
16
|
Vitamin A
|
200 000 IU once a month
|
17
|
Vitamin D
|
|
18
|
Calciferol
|
1 tablet once a week
|
19
|
Vitamin K
|
2 ½ ampoules once a
week
|
20
|
Vitamin E
|
1 capsule daily
|
21
|
Colimycin
|
2 000 000 IU 2 times
a day (nebulized)
|
22
|
Amikacin
|
1 g once a day (intravenous
treatment only)
|
23
|
Ensure meal
supplements
|
2 shakes per day
|
24
|
Protifar powder
|
2 scoops per shake
|
Nutrition and Feeding
In August 2012, NiQi had a Mic-Key PEG
feeding tube inserted into her stomach.
Her weight had decreased at a rapid rate and if something wasn’t done to
help her gain weight, her body would not have been able to cope with recurring
lung infections. The PEG allows her to
‘hook’ herself up at night time, with supplementary feeds. These feeds add vital kilojoules to her daily
intake and in turn help her gain the kilograms that are needed to help her ward
off infection.
Good nutrition goes hand in hand with
staying healthy and although she eats a normal well balanced diet, it is not
sufficient to add the weight that she needs. A CF patient requires more than
double the number of kilojoules in their daily diet because of the mal absorption
of foods taken in and the fact that they cannot be digested.
The fact that the disease is the primary
cause of her poor nutrition, can be helped by the intake of artificial enzymes,
called Creon 25 000. These
capsules are taken before and during a meal or snack and replace the enzymes
required to break down the foods ingested.
In other words they do the work for the pancreas which does not function
properly due to the thick sticky mucus that is secreted and blocks off the
release of the enzymes required for this function.
Administering IV Medication
NiQi has had Intravenous (IV) medication
so often over the years and with each admission, the veins in her arms
developed phlebitis more and more frequently.
Each time a new needle had to be inserted to set up a drip site which
caused undo pain and stress. In 2009 her
doctors decided it would be best for her to have a portocath inserted under the
skin, giving a direct line to her heart and making it easier to administer any
IV medication that she needs. Since then
she has had two removed and a third one inserted due to blockages and infection
that occurred. The use of the portocath
is a much better option than the needle in her arm and when not in use is
flushed through with saline to help keep the line open and prevent further
blockages
Options for a Lung Transplant
We had discussed amongst ourselves
before seeing the lung specialist, the possibilities of funding such an
operation, should he feel it might be possible.
Our initial thought was to try fund-raising as NiQi is not on a medical
aid.
When he broached the subject of how we
might pay for the operation, he dissuaded us from fund-raising as he said it is
far too much money to try to raise as it would be in excess of R1 million and
if there were any complications that arose after the procedure we could be
looking at millions more. He advised us
to put NiQi onto a medical aid and then look at attending Charlotte Maxeke
Adult CF clinic as all the lung transplant patients are cared for from there,
pre being entered onto the transplant waiting list.
It has been a long complicated process,
but finally NiQi is on a medical aid. It
is unfortunate that due to rules and regulations of medical aids, NiQi now has
to wait out a years’ exclusion period before she may either claim from the
medical aid or be entered onto the lung transplant waiting list.
Fabulous
and Fighting CF Trust
October 2012 a trust
fund was set up with the hope of raising the much needed funds to cover a lung
transplant. At the time we felt it was
our best option in the situation, not realising that through an executive
decision made some time ago by the lung transplant team, they would not consider
performing a lung transplant unless the patient is on a medical aid. This information was only conveyed to us
about 8 months after seeing the specialist pulmonologist, however we are hoping
that if we raise enough funds, that they will rescind their decision and NiQi
will then be able to be listed for a bilateral lung transplant.
NiQi was up to the
end of July 2012, working at a local accounting firm as a data-capturer. She resigned due to ill health and until her
transplant is not expected to work again.
Due to this, the trust fund is not only to gather funds to be put toward
the transplant operation, but also to pay the monthly medical aid contributions
and pay for any other treatment or equipment that she may require pre
transplant.
How can you help?
The banking details for the Money Market
Investment account in the name of The
Fabulous and Fighting CF Trust
are as follows:
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
Swift
Code Firnzajj
I have just read your struggle with this debilitating disease. You have tremendous fortitude, God indeed has blessed you with a loving and supportive family and care. I hope you do not have to wait long following the end of the exclusion period for the required treatment that will restore your life. In the meantime I will pray for you and look forward to hearing about your progress.
ReplyDeleteI absolutely adore you my cousin. And my amazing aunt and uncle for loving her so unconditionally. xxx
ReplyDeleteI absolutely love you my cousin. And to My Aunt and Uncle for loving her so unconditionally.
ReplyDelete