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During the same period, Health Minister Manto Tshabalala-Msimang had a successful liver transplant in the Donald Gordon Medical Centre in Johannesburg.

But there was no liver for little Lara, who died a week after her second birthday in the Red Cross Children’€™s Hospital in Cape Town.

‘€œI cannot begin to describe the anxiety and the stress and the fear we felt during that three-month waiting period,’€ says Rennie Price, Lara’€™s father.

‘€œIt was absolutely horrific. Your primary reason for living is your little children. All you need is a liver. But you can’€™t get it. I would have given anything. I would have given myself but I couldn’€™t.’€

Little Lara was born with a rare genetic disease that affected her liver’€™s ability to process enzymes and eventually caused cirrhosis.

The Prices, who live in the small farming community of Sunland in the Eastern Cape, spent almost 18 months going to and fro to the Red Cross Hospital in Cape Town.

‘€œThe level of care by the doctors at the hospital is absolutely amazing. It’€™s up there with the best in the world,’€ says Rennie.

But despite the excellence of care, Lara lost her life because of the desperate shortage of organ donors in the country.

‘€œLara became an organ donor,’€ says Rennie. ‘€œLet me tell you, it’€™s very hard to decide to leave your little child behind when the time comes. But you need to take the decision beforehand and commit to it.

‘€œOur entire extended family has become organ donors. It’€™s an investment in life. Not only can you give some the gift of life. But the more people become organ donors, the more you and I have insurance because you never know when you might need it.’€

Monde Somangaca has been waiting patiently for a donor kidney since December 2006.

Monde, aged 12, suffers from acute kidney failure. A tube has been inserted into his abdomen and every evening he connects himself up, via a myriad of connections, to the bulky dialysis machine next to his bed.

Then six litres of saline solution are dialysed through his body as the machine cleans his system as his kidneys should.

This usually takes 12 hours to complete but the sporadic power cuts have caused complications at times.

‘€œSometimes I have to send him to school with a big tummy, because all the water has not been removed. But the teachers are good about allowing me to fetch him once power is restored,’€ says Monde’€™s mother, Nola Somangaca, as she lowers her hefty frame into a chair in the sparsely furnished living area of their RDP house in Khayelitsha’€™s Site B.

‘€œI used to be happy going to work. I love my job,’€ says Nola, an Assistant Nurse at GF Jooste Hospital on the Cape Flats. ‘€œNow I am going to work unhappy, knowing I want to be at home, looking after him,’€ she says, glancing lovingly at Monde.

The Somangaca’€™s lives changed irretrievably in December of 2006.

‘€œMonde came to me and said, ‘€˜Mommy, I have a pain on my stomach that does not feel as if it is because of something I ate’€™. He started losing his appetite and he wasn’€™t active the way he used to be,’€ says Nola softly.

‘€œI took Monde to Site B Clinic and they referred us to Red Cross. They very quickly told me he needed a kidney transplant.’€

Monde then spent six months in hospital with Nola keeping vigil, sleeping under his bed at night.

Nola smiles when asked about the wait for a donor kidney. ‘€œWe are new in this. Our hopes were so high in December when they called Monde for blood tests as there are many more accidents over Christmas and the chances of a kidney are so much higher.

‘€œBut we’€™ve since learnt that this is standard practice. We are really praying and wishing. It’€™s hard. We fasted for 21 days in February, praying for a kidney,’€ she says.

‘€œ I don’€™t know where on the (waiting) list he is, I just know the donor needs to be O positive, which is apparently a common blood type, giving us a better chance of finding a donor. But I know of children who have waited for five years, I just hope we don’€™t as well,’€ says Nola.

Unlike the United States and United Kingdom, there is no national waiting list for organs in South Africa. Different provinces run their own lists with the provincial state and private sector sharing organs in some instances.

‘€œA national list is not necessary as it works well on a regional basis,’€ says Alexia Michaelides, transplant co-ordinator for Netcare in the Western Cape. A veteran of 10 years, Michaelides says there is a good working relationship between herself and the few transplant co-ordinators employed by the state.

‘€œWe are all in communication with each other all the time and if there is an urgent case, it will always take priority over the others.’€

In the Western Cape, Michaelides says, sixty percent of organs go to state patients.

Organs procured in the state sector in the Western Cape go to state patients while organs procured in private sector are shared between private and state, depending on the urgency of cases.

Fiona McCurdie, transplant co-ordinator at Groote Schuur for the past 17 years, says there is no doubt that there are significantly less organs to go around.

‘€œI believe lack of referrals by doctors is a major stumbling block,’€ she says.

Doctors, nurses and transplant co-ordinators interviewed all agreed with McCurdie.

‘€œWe aren’€™t doing enough. We could be doing more,’€ says Professor Del Kahn, head of General Surgery at Groote Schuur and kidney and liver transplant expert.

‘€œDonors worldwide have not kept pace with the need worldwide and the numbers of patients waiting are getting longer,’€ says Kahn.

He believes that it easier for a doctor in a trauma ward to switch off the ventilator of a brain dead person than referring them for organ donation, which involves keeping the patient on a ventilator and conducting a battery of tests. The kidney unit at Groote Schuur now relies increasingly on live donors, usually family members, donating one kidney to the patient.

There are currently 110 patients on dialysis at Groote Schuur, all waiting for a kidney. The state limits the number of patients allowed to receive dialysis and only those who make it onto the programme get onto the organ waiting list.

‘€œI am part of the multi-disciplinary meeting that decides which patients can go onto dialysis and it breaks our hearts when we have to say no, as we know that person will die,’€ says McCurdie.

Past chairperson of the South African Transplant Society, Dr Elmin Steyn believes government should be involved in the management of waiting lists.

‘€œWe need government to get involved in guiding and encouraging doctors to refer potential donors. There is a desperate need for organs and waiting lists are just getting longer,’€ says Steyn, a kidney and pancreas transplant surgeon.

Groote Schuur Hospital heart transplant surgeon Professor Johan Brink says the hospital that conducted the world’€™s first heart transplant has gone from doing 35 to 40 transplants a year to seven.

‘€œA limited number of organs come to the state and we have limited transplant co-ordinators and not enough resources to look after brain dead patients,’€ says Brink.

‘€œI think it would be useful to have an independent body to match potential donors nationally, but Government seems loath to take control.’€

A protégé of Chris Barnard’€™s, Brink warns that the expertise to conduct heart transplants is fast dissipating. ‘€œI cannot train surgeons doing only seven transplants a year. I need to do at least 15,’€ says Brink, adding that the limiting factor is not funding, but organs.

Praveena Vather was one of the lucky ones. The thin scar that disappears between her cleavage is hardly noticeable, completely overshadowed by her vivacious face.

Yet nine years ago, Praveena’€™s faltering heart was removed and replaced with a donor heart in a nerve-wracking operation.

‘€œAll I know is that my heart came from a man from Pretoria. He’€™s in my prayers every morning because he gave me the greatest gift of all: life,’€ says Praveena, relaxing in an armchair in her immaculate Pietermaritzburg home.

Not only does Praveena have her health back, but she went on to become the first heart transplant recipient in South Africa to give birth to a daughter, Netanya (meaning ‘€œGod’€™s gift’€) five years ago.

‘€œI was completely normal and healthy until I was 28 years old,’€ says Praveena. ‘€œThen I got flu and that led to bronchitis. I went to the doctor and he said that I had viral myocarditis. The virus had caused my heart to swell and it couldn’€™t pump blood or oxygen properly.’€

For the 14 months, Praveena’€™s life was a misery as her lungs filled up with water and blood and she was slowly starved of oxygen. Eventually, doctors gave her 10 days to live and she was put onto the priority list for a donor heart.

Miraculously, within two days of being on the list, a donor heart from a man with the same blood type as hers was found and flown from Pretoria to St Augustine’€™s Hospital in Durban.

‘€œIt was a miracle,’€ says Praveena, her eyes filling with tears. ‘€œThe operation went very well. I remember waking up and seeing my husband, Rajesh, through the glass of the ICU smiling at me. I told the nurse to tell him I loved him from the bottom of my brand new heart. There wasn’€™t a dry eye in the place.’€

Praveena takes medication every day to lower her immune system to ensure her body doesn’€™t reject the heart, but this makes her vulnerable to sickness.

‘€œI have always been a positive person, but now I appreciate every second of every day,’€ says Praveena.

Back in Groote Schuur Hospital in Cape Town, the surgeons grunt as they lift Wayne Schaefer’€™s limp body, turning him onto his side.

Four surgeons, led by Professor Del Kahn gather around Wayne’€™s body, now covered in theatre green cloth, bar a square spot of exposed skin between his rib cage and hip bone.

A petite, blonde woman in orange Crocs and a theatre gown, Dr Elme Miller holds up a latex-gloved hand: ‘€œKnife please.’€

The incision is clean and Kahn and the others lean forward as Miller delves deeper in search of the life-saving kidney.

A few hours previously, Wayne had been sitting in the hospital canteen, listening to heavy metal on his ipod as he waited to donate his right kidney to his five-year-old son, Zachary

Tall and lean, with short cropped salt and pepper hair, Wayne lost 22 kg in five months after doctors gave him the thumbs up to donate to Zachary if he lost some weight.

Zachary fell ill with acute nephratic syndrome, a condition which destroys kidney function, in June 2006.

To improve Zachary’€™s survival chances, Wayne, his wife Charlene, Zachary and his 7-year-old brother, Nathan, packed up their Mossel Bay home and moved to Cape Town.

They rented a flat near the Red Cross Children’€™s Hospital and Zachary underwent dialysis every day. But it was soon clear that his only shot at survival was a kidney transplant.

‘€œI had psyched myself up that Charlene was going to be the donor,’€ says Wayne. ‘€œMany people rely on my business to survive. I guess I was arrogant and felt I did not have to do it. Even when they said my wife’€™s kidney veins would not be compatible with Zac’€™s, I still said no.’€

Then Wayne smiles: ‘€œI guess I then thought about it. I knew that by doing this I would give my child an opportunity at having a life. I decided to do it.’€

A few days after undergoing the major procedure, Wayne confirms that it was a great success: ‘€œIt is really tough to stay upright at this stage. But I did see Zac for about five minutes. He is doing so, so well. All his levels have come down to being normal. It has been worth it, no doubt! Seeing anyone’s life change so dramatically does something to you that is very difficult to describe.’€

Meanwhile, little Joshua Laurénz also has a chance of a normal life, thanks to a kidney transplanted from his mother, Liesl.

‘€œJosh is like a bull in a china shop. He’€™s loud, naughty, cheeky and funny,’€ says Liesel, smiling at the thought of her boisterous four-year-old.

But Josh has spent most of his life fighting for survival, thanks to a rare disease called Denys-Drash syndrome which causes cancer of the kidneys.

The little Durban boy’€™s ordeal began when he was diagnosed with kidney cancer at the age of nine months.

‘€œHe had two months of chemotherapy which made his immune system so weak that he was sick all the time,’€ says Liesl.

Ten days after his first birthday, Josh had surgery to remove the tumours along with most of his kidneys. Eight months of chemotherapy followed.

Then there was a brief three-month respite. But at his next check-up, Josh’€™s heart was enlarged, his blood pressure dangerously high and he was in renal failure!

Josh’€™s condition deteriorated rapidly. His heart failed twice. He got viral pneumonia. For 37 days, he was on a ventilator hovering near death.

‘€œThe stress of not knowing whether your child will live or die is unbelievable. There were lots of times we didn’€™t think Joshy was going to make it.’€ Liesl looks out of the window, twisting her newly washed blonde hair.

By June of 2006, Josh was off the ventilator but having dialysis every second day. He was restricted to just half a litre of fluid a day. His blood pressure was still very high and putting his heart at risk.

The Laurénz’€™s then moved their little boy to the Red Cross Children’€™s Hospital where he could be cared for by paediatric nephrologist Professor Mignon McCullough.

After nine weeks on dialysis, the Laurénz’€™s were told that Josh’€™s only hope was a kidney transplant. But the hospital would only do a transplant if he was cancer-free for the next seven months. The remaining parts of his kidneys were removed to reduce the risk and the family started their agonising wait.

Both Liesl and Josh’€™s dad, Sean, could be donors as they had the same blood group as their son.

‘€œSean really wanted to donate his kidney,’€ says Liesl. ‘€œI think he felt that I’€™d been Josh’€™s main carer and, being a man, he saw a way to fix the problem by giving one of his kidneys to Josh.’€

But the hospital recommended that Liesl’€™s smaller kidney would be more suitable.

‘€œAs a mother, you don’€™t think twice about doing whatever you can to save your child’€™s life,’€ says Liesl, showing the neat diagonal scar curving around her right side.

Liesl’€™s kidney worked immediately in her son and he was discharged three weeks after the transplant. While Josh is on permanent medication to lower his immunity to make sure his body doesn’€™t reject the kidney, he is doing very well.

‘€œWe are just loving our life at the moment,’€ says Liesl, from the family’€™s newly renovated home. ‘€œWe don’€™t go out much over the weekends. It is so special to be together and at home.’€

 

Becoming an organ donor

  • Anyone under 70 without cancer, hepatitis, diabetes or HIV/AIDS can be a donor. Even those with some medical conditions can become donors.
  • After death, the potential donor’€™s organs cannot be removed unless his/her family gives their permission.
  • Hearts, lungs, kidneys, liver, pancreas, corneas, heart valves, skin and bone can be transplanted.
  • Organs and tissue need to be removed as soon as possible after brain death to ensure successful transplantation. Brain death has to be certified by two independent doctors who perform detailed tests.
  • The recovery of organs and tissue are carried out with great care by surgeons do not disfigure the body or delay the funeral.

·                 To become an organ donor, contact the Organ Donor Foundation Toll Free 0800-22-66-11 or register online at www.odf.org.za

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