Waiting and hoping. That is how critically ill, 44-year old Guy Read has spent the past four years. Read, who suffers from a kidney disease, has been on the waiting list for a transplant for four years now. He is yet to find a matching donor.

“Over the past few years about eight people who were willing to donate a kidney to me have been tested. But all of them were found not to be a match. Every night and day I wait and hope for that call saying ‘we have found a donor for you’,” says Read.

Read, who lives in Johannesburg, is not alone. The Organ Donor Foundation estimates that around 5,000 South African adults and children are waiting for a life saving organ. 

Few organ donors

Deceased organ donor rates are extremely low in South Africa – there are only 1.4 donors per one million people. Some organs such as kidneys can be donated by a living donor. Living donors account for about half of kidney transplants. But this is not enough to meet the need. 

Samantha Nicholls, executive director of operations at the Organ Donor Foundation says that waiting periods for organ donation can vary dramatically. It’s dependent on various factors such as the urgency, the suitability and availability of donor organs.

“This can therefore vary from months to years depending on the specific organ. For example if a person is waiting for a heart and has been placed on the urgent list, and a donor is found matching their specific criteria. They will receive the next available organ,” explains Nicholls.

Read needs a blood type A or O kidney. Waiting for the organ has been torture –  emotionally, physically and financially. He is losing hope of ever finding a matching donor.

“This is hard, so incredibly hard. The reality of my situation gets a little more difficult everyday, and hope is harder to find as weeks go by. I would never wish this on anyone,” says Read.

How it all started

He was first diagnosed with IgA nephropathy, which is also known as Berger’s disease, when he was doing a physical check-up at the age of 21. He has been managing the condition through maintaining a healthy diet, regular exercise and medication.

IgA nephropathy is a disease of the kidney and the immune system. The most common symptom of IgA nephropathy is blood in the urine (hematuria). But it takes many years for the condition to progress to the stage where it causes problems.

For Read,who still works a full-time job as a sales manager in the tooling industry the disease progression began in 2010. Then his health started to deteriorate. He was diagnosed with kidney failure and immediately put on dialysis. It’s been 13 years, and he continues to receive the treatment three times a week, for four hours at a time.

“I have gone from a size 38 to 30 in a very short period of time. I feel cold and exhausted most of the time. The dialysis has also been difficult, I am drained physically and emotionally after each dialysis. My life has completely changed. I really need a kidney transplant so I can live a normal life again,” says Read.

Long wait for kidney transplant

Nicholls tells Health-e that the number of patients awaiting kidney transplants is far higher than any other organ. Some patients wait between five to seven years for a transplant. 

“The demand for kidneys is typically higher. This is for a number of reasons but specifically linked to poor lifestyle choices and bad diet that leads to an increase in lifestyle diseases such as hypertension and diabetes. These conditions can lead to kidney damage over time,” says Nicholls.

Nicholls says that patients who require kidneys can receive dialysis treatment and can be kept alive for a limited period of time. Though their quality of life decreases year after year.

Read, who is a married father of a seven-year old daughter, says that he gains courage in knowing that he is not alone. 

“It is difficult to accept all these challenges I am going through. But it helps to know that there are other people who are going through the same thing.” 

His wife, Alicia has shared in the difficulty. 

“We have lost friends who just don’t understand that our lives are hard and vastly different. This whole situation is draining on us. Though I am emotionally strong on most days, it is difficult on others,” she says. “It is so painful watching someone you love so much waste away. It’s incredibly hard but I need to be strong for all of us.” 

Alicia pleads with South Africans to register as organ donors. “There are thousands of people whose only chance of survival is getting a new organ.”

Reasons behind reluctance to donate 

Terry Adams’ PhD research focuses on organ donation in the Catholic Church in Gqeberha in the Eastern Cape. Her anthropological study suggests that reluctance to donate organs often stems from religious or cultural teachings.

“However, beliefs and doctrine are not static and are ever changing. Also, the low organ donor rate is a problem worldwide, and the need is great in South Africa because of the increasing rate of non-communicable diseases,” says Adams.

Nicholls says a large portion of the South African population needs more  education on organ donation and the process of registering. 

“People who are exposed to the message frequently sign up as donors. Many know about organ donation and simply need to be encouraged to take the next step.” 

Register to be an organ donor at www.odf.org.za or call toll free on 0800 22 66 11. It is free and no medical tests are required.-Health-e News.