''Fabulous and Fighting CF'' Proposal

Nicky was born on 21st September 1990, in Vryheid, Kwa Zulu/Natal, to a teenage single mum. She was for the first 2 months of her life raised by her maternal grandparents after which she was taken away by the Welfare Department and hospitalized for reasons thought to be neglect. She was in Vryheid hospital for a month, however did not respond to a normal diet and care, so was subsequently 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 then that we met her through our late son’s paediatrician, who at that precise time was treating him for a lung infection in the same 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 Nicky, to find her a foster home, instead of the alternative, which was to be sent to a children’s home. So it was that at the age of 7 months, Nicky came to live with us and has stayed to this day.

As a youngster, Nicky 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 to 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 field and bowling skills, allowing very little batting time.  Lol  When at home, when 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.

In her younger years, together with Mark, our late son, she attended the cystic fibrosis clinic at Addington Hospital.  The doctors from the clinic worked hand in hand with the paediatricians in Pietermaritzburg, looking after them both.  I don’t remember exactly when we stopped attending the clinic at Addington Hospital, however it was sometime between Mark passing away in 1995 and 2000. 

It wasn’t that we wanted to move away, but with government policy changing, we were advised that because we did not live in the greater Durban area, we would have to attend the hospital closest to us, which was Greys’ Hospital.  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 Nicky regularly in their rooms at no expense.  When the paediatrician who consulted with Nicky on the most regular basis left South Africa to return to Holland around 2003, we had no option but to consult 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 Nicky at the general clinic decided that because her condition was in his opinion, stable, she would be transferred to Northdale Hospital.  It was at this point that we realised if we wanted Nicky 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.  (The reason we chose Gauteng was because Johan, my husband and Nicky’s father was at that time doing contract work in Pretoria.)  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 Nicky 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 presented 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 only 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 life.

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 be a photographer, however due to our own current financial position this has been put on hold.

Nicky usually has hospitalized treatment every 3 months, where she is admitted to Steve Biko Hospital under the care of well qualified and learned specialists, for a period extending from 2 to 3 weeks at a time. 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, then she may be 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.  Nicky 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 time 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 medication:

Current Medication:

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	Ursotan	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 3 times a day (intravenous treatment only)
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
25	Sporanox	used intermittently for Aspergillus infections

Eighteen months ago Nicky was given the opportunity of employment, which well suited her health condition, as the hours were mornings only, and weekends when required. She enjoyed what she was doing and her salary gave her some semblance of independence. In July of last year when she came home from hospital having responded extremely well to treatment we discussed with her that as she would be turning 21 in a few short months, that she move into the separate flat next to our house. This would allow her to be more independent, whilst at the same time she would be close enough to home to receive her daily physiotherapy and any other help if needed. She spent her money that she had initially been saving for a camera, on making the flat tasteful and kitting it out with what she required to maintain that level of independence.

A month later she was already feeling the effects of being independent and the extra load, on her health. She received 2 weeks of oral medication, which didn’t help as it was hoped and she has been ‘cruising’ along since then. Unfortunately at the end of September, she, together with 3 others, was retrenched from her job, due to the economic climate.

November last year she was admitted to Steve Biko, stayed 2 weeks and then returned home.  Less than a month later she was admitted once more for treatment and it was the week between Christmas and New Year that we realised how seriously her health was deteriorating and we thought we might very well lose her.

  

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 at the beginning of January this year and he reckoned that she would be a good candidate for a lung transplant, adding that her cystic fibrosis hadn’t deteriorated too far as yet.  We had discussed amongst ourselves before seeing him, the possibilities of funding such an operation, should he feel it might be possible.  Our initial thought was to try fund-raising as we are no longer on a medical aid.  (In fact we have not been on a medical aid for about 10 years now as the monthly premiums became too costly for us to pay.)  When he broached the subject of paying 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 Nicky onto a medical aid and then look at attending Jo’burg General CF clinic as all the lung transplant patients are cared for from there.

It is now 7 months later and to some it may seem that we have done little to help Nicky in the interim, as we are no further than we were at the beginning of the year however that is not the case at all.  We immediately contacted all the medical aids that we found listed, writing to them with her history and asking questions that we felt were relevant to monthly medications, the lung transplant and future treatment and anti-rejection medication.  None of them responded with anything other than a pro-forma type letter to contact a consultant, except for Discovery health.  This is very interesting, considering that a week after consulting with the specialist at Milpark and discussing medical aids with Nicky’s dr.’s at Steve Biko Hospital, that they mentioned Discovery is the only medical aid willing to work with cystic fibrosis patients and eventual lung transplants.  The consultant from Discovery suggested she start on a hospital plan and after the year of exclusion, we upgrade the hospital plan to a fully comprehensive medical aid.  We have done our homework in this regard and to date our problem is most definitely of a financial matter.  We cannot afford to pay the monthly premium otherwise we would have done it long ago.  Our next problem lies with the fact that, according to government policy, should Nicky go onto either a hospital plan or a medical aid, she may no longer be a hospital patient.  This in reality means that for the year of exclusion, we would have to fund any hospitalisations together with treatment, as well as her monthly medications.  This is impossible for us to do as we do not have the means.  We have not priced all her medications currently, however we have been given a ‘ball park’ figure of needing to have about R30 000 per month for medication alone.

Since January, Nicky was admitted for two weeks in April and is currently entering her fifth week of hospitalisation at present.  Her health has rapidly deteriorated, with her lung functions being in the low 20’s; her weight gain has become problematic, in that with all that she eats, plus having nutritional supplements, it is not enough and her body is using more energy to fight the infections than would normally be required.  Finally, even with IV anti-biotics, she is not improving and the infections remain present, which does not bode well for her imminent future.  This week she had a PEG inserted into her stomach, which will be used for daily feeds at night to hopefully help with weight gain.  She has at times had a naso gastric tube inserted, however never with much ‘luck’ or for lengthy periods of time or with much success.  Last week when inserting the naso gastric tube, she stopped breathing and was in and out of consciousness.  The doctors have now also diagnosed her as having paradoxical vocal cord disorder. She is presently dependent upon oxygen at all times and we have recently heard that someone has kindly organised that for her, so at least when she is discharged from hospital she will be able to travel home.  Once at home we have a machine that she is able to use to provide her with the oxygen required.

We met with her doctors from Steve Biko on Tuesday this week and they bluntly said that unless she is immediately put onto a medical aid and funds raised for a transplant, should lungs become available, that she may not survive longer than 6 months.  As parents who have already lost one child to cystic fibrosis, we are doing our utmost within our own ability, to save Nicky’s life.  I (Suzanne) gave 24 hours’ notice from work to once more be able to care for Nicky 24/7.  I had in fact only been working for the last 6 months anyway, with a view to trying to save funds for this huge ‘thing’ that feels like it is hanging over our heads and weighing us down.

In May this year Nicky rallied round and managed to get people involved in the CF Genes day.  She took it a bit further than asking everyone to wear jeans and asked that they also wear purple…the both the SACF Association and her favourite colour.  She made a facebook page reminding everyone in the run up to the day and had them send her photos which she duly put together and posted on her blog. www.fabulousandfightingcf.blogspot.com.  The money she helped raise was deposited to the SA Cystic Fibrosis Association and money is still coming in.

This is Nicky, our precious daughter and friend, sister to Matthew, sister-in-law to Jess, cousin, niece, and grand-daughter…a child brought into this world by the grace of God and given to many to love and cherish and hold dear to their hearts.  If you are able to help with this daunting task of saving her life…please…please…please contact us.

Johan Lucas – (+27)083 334 9945

Email: johanlucas91@gmail.com

Suzanne Lucas – (+27)073 515 9175                

Email: suzieqzn@gmail.com

Cystic Fibrosis is a hereditary disease caused by a defective protein gene carried by both parents.  It usually presents itself within the first few weeks of birth and may rapidly become severe.  The condition causes the failure of the glands which produce mucous in the lungs and pancreas, and excessive sweat in the skin.  The mucous glands of the lungs produce thick sticky sputum that clogs and dilates the air passages causing bronchiectasis.  This leads to severe breathing difficulties and respiratory infections.  The pancreas degenerates and the lack of pancreatic digestive juices means that not enough fat is absorbed from the intestines.