Patients
“Without the organ donor, there is no story, no hope and no transplant. But when there is an organ donor, life springs from death, sorrow turns to hope, and a terrible loss becomes a gift.” – United Network for Organ Sharing (UNOS), US
We can all be heroes in our own way and do something meaningful to help others during our lives as well as after we die. As there is a significant shortage of organ donors in South Africa and a massive waiting list for patients, this is something that most healthy people can do.
Donating your organs and your tissues after your death can help save seven people, and transform the lives of a further 50, according to the Organ Donor Foundation (ODF). Solid organs that can be transplanted from deceased donors are kidneys, pancreas, liver, intestines, heart and lungs, while tissues include corneas, heart valves, and bone and skin tissues which can help people with a range of medical problems, from blindness to burns. Living donors can also donate a kidney or part of their liver to help very ill or injured patients.
As we mark National Organ Donor Awareness Month and commemorate the important role South Africa has played in organ transplantation, Chantelle Griesel is celebrating the life of her late brother Eugene Strydom, who would have turned 45 on 25 August 2022.
A second chance at life
Chantelle, a secretary at Mediclinic Potchefstroom for 12 years and a mother, became a living donor in 2020 when she donated 70% of her liver in an effort to save Eugene who was suffering from autoimmune hepatitis and a suitable cadaveric liver could not be found in time. Although his body rejected the new liver and he passed away seven days after the operation, Chantelle has no regrets at all about the decision she made.
Chantelle Griesel, a secretary at Mediclinic Potchefstroom donated 70% of her liver to try and help her brother.
“One of the main reasons I did not think twice about donating was that it would have been the best thing ever to give Eugene the opportunity to have raised his son, now three-and-a-half years old,” she says.
Despite the risk that Eugene’s body might not accept the donated liver and that Chantelle might develop complications after her surgery, she was adamant that she wanted to do it. “We didn’t have any other chances left because he was so ill and his liver was damaged so badly by the disease that it would not respond to medication,” she says. “I knew about the risks to me, but I didn’t really care. I just wanted to help.”
Chantelle’s mother died 10 months before Eugene, also after liver failure due to autoimmune hepatitis, but she chose not to have a transplant, saying she had had a good 64 years of life and wanted others younger than her to be given a chance. Chantelle and her surviving brother need to test every year for the disease, which can be hereditary. As a precautionary measure, Chantelle needs to look after her liver very carefully for the rest of her life and not use medications that are excreted through the liver, such as paracetamol, aspirin and cough medications with alcohol. Since the operation, a recent CT scan has shown that her liver has regrown almost to its original size.
A vital history
South Africa has been a pioneer in the field of organ transplantation and one of the world leaders in establishing transplantation as a life-saving or prolonging therapy for end-stage organ failure.
In 1966, the first kidney transplant in Africa happened in Johannesburg at the University of the Witwatersrand in Johannesburg. The world-first human heart transplant took place the following year in 1967 at Groote Schuur Hospital, Cape Town under Dr Christiaan Barnard. Pioneering work on kidney transplantation with HIV-positive patients also took place in South Africa, as did the first living donor transplantation between a living HIV-positive mother to an HIV-negative child. With advances in immune-suppression drugs in the 1970s and 1980s, the success rate following organ transplantation has also improved.
More donors needed
In South Africa, as in other parts of the world, there is a huge shortage of organ donors. It is sobering to learn from the ODF that more than 4 000 patients in South Africa are awaiting a solid organ transplant, although the actual figure is probably far greater.
Dr Francisca van der Schyff, an abdominal organ transplant surgeon at the Wits Donald Gordon Medical Centre (WDGMC), says the lack of a central database in South Africa means that it is difficult to know the real number of people needing an organ and it is probably much higher than 4 000.
“Most patients needing an organ probably do not even make it to the waiting list,” she says.
WDGMC is the first private academic hospital in South Africa and one of the country’s 10 private transplant units for organs and tissues. Most liver transplants, including all living transplants, in South Africa are conducted at the WDGMC for both private and public patients. There are also eight state facilities that conduct organ-specific and tissue transplants in the country. Legally, organs can only be donated and are never sold for money in South Africa.
“Seventy percent of all organs transplanted in the world are kidneys, so these are the longest waiting lists. We have about 500 kidney patients on the waiting list at our unit, and they can wait eight to 10 years for a cadaveric kidney,” says Dr Van der Schyff. This time is greatly reduced if there is a suitable living donor. The WDGMC manages to help 90% of liver patients with a transplant before they die of organ failure, she says. Heart and lung transplants have the added challenge of not being able to use living donors and these organs are less frequently procured.
The importance of consent
Anyone under the age of 70 and in good health can register to be an organ and tissue donor via, although after death the family/next-of-kin still need to agree to the donation as well.
“In South Africa, family members still need to give consent for organ donation following the death of their family member, even if the deceased was a registered organ donor and had a living will stating that they wanted to donate their organs and tissues after death,” says Dr Van der Schyff.
“This is why everyone needs to talk to their families regarding their wishes after death and organ donation, so that when that difficult time comes, families know what their next-of-kin wanted. This conversation is so important.”
Eugene Strydom and his sister Chantelle Griesel, before Chantelle became a living organ donor for her brother.
Organs from people declared brain dead by two independent doctors need to be removed as soon as possible to ensure successful transplantation.
“When most families are approached in the correct manner, with compassion and support, they do give consent. While in the past, some cultural groups were not keen to give permission, this is changing and there are lots of positive movements in this regard,” says Dr Van der Schyff. “Religious leaders have stated that there is no religion that forbids helping another person and that if you are willing to accept an organ, you should be willing to donate one. When transplant patients return to their communities, they act as living ambassadors for transplantation, which also encourages others to become donors.”
“If you choose to donate your organs, you need to know that it is a very dignified process. The body is handled after death with dignity, respect and compassion, and we have a moment of silence in theatre to thank the donor and the family for this gift. And patients are extremely grateful for receiving this gift of life. In this way, we can do a lot of good after we die.”
Says Chantelle: “Before my mother passed away, I didn’t accept the idea of organ donation. But as we gave permission for her other organs and tissues to be donated, and since I have been involved as a living donor, I saw how many people, especially children under the age of 10, are really suffering with organ failure and are in need of organ donations. I feel very strongly that if you can give someone a second chance at life, why not try it. I am living proof that your life doesn’t change so much after being a living donor. And I want to encourage others to become donors too.”
Chantelle has kept a diary since starting with the living donor process, documenting her experience about the effect of the medications and the physical and emotional recovery process, advice which could help others at some point cope with the process.
“If I can help just one person to get through this then I have reached the purpose I was supposed to take. It is not an easy road and I have had an emotional setback accepting his death, but I am trying every day,” she says.
(Written by Sarah Taylor)