The heartache of waiting for an organ transplant

Published Aug 24, 2017

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For many patients in need of organ transplants, life is a waiting game waiting for the call that will change their lives and possibly give them a better and longer lifespan.

For UCT medical student Khanyisa Pinda, 23, who was diagnosed with dilated cardiomyopathy (DCM) (enlarged heart) in 2013, the waiting game already feels like a lifetime and has made him feel he has been “on-call” since the day, earlier this year, when he was told he needed a heart transplant.

DCM is a condition in which the heart’s ability to pump blood is decreased because the heart’s main pumping chamber, the left ventricle, is enlarged and weakened.

In some cases, it prevents the heart from relaxing and filling with blood as it should. In January, doctors put Pinda’s name on an urgent transplant waiting list after his condition deteriorated so much his heart was left with only 10% functionality.

“I have my phone with me all the time, I wake up at night to check if I haven’t missed any calls from the hospital. If I miss any calls with a similar number to the hospital, I panic,” he said.

The young student, from Aliwal North in the Eastern Cape, said his life changed four years ago when he experienced severe shortness of breath, swollen feet, and exhaustion. He was in his first year in the medical school when the diagnosis was made. Although he remained stable for another few years, his health condition took a dip after he developed gastric ulcers, which contributed to his heart failure.

In January, doctors told him he had 10% functionality of his heart, which made him an emergency patient.

“My life changed drastically. I had to take a break from my studies because I was not coping physically. I couldn’t walk up a flight of stairs, without standing to catch my breath.”

Pinda was fortunate to have been doing two degrees at the same time - he pursued the less strenuous degree, BMed Honours in Medical Biochemistry at UCT.

Pinda is one of more than 4000 South African adults and children desperately waiting for a second chance at life - through organ donation.

According to South African Medical Association (Sama), the number of South Africans willing to donate organs remains critically low at 0.2% of the country’s population, owing to cultural and religious reasons.

Sama hopes that this month, being Organ Donor Month, awareness of the critical shortage of organs will spread.

Living with his heart failure has negatively affected Pinda’s emotions. “There are days when I sit in my room and break down. I don’t know how I got this condition. There is no genetic trace and I had a healthy lifestyle.

“Every move I make, I have to inform the hospital: even if I’m travelling to Paarl, an hour away from Cape Town, because anything can happen anytime. I don’t even know how to plan my life next year because I don’t know if I will be fit enough for the medical school. I just have to wait and hope for the best,” he said.

Transplant co-ordinator at Groote Schuur Hospital, Sister Fiona McCurdie, says organ donation saves lives.

She strongly advised families members to engage in conversations of organ donation as it made it easier to make decisions about organ donation.

“Most family members don’t donate a loved one’s organs because they don’t know if the person would have liked to do it. So if family members cultivate a culture of speaking freely about it, it will make it easier.”

She explained the families might not even see if their family member had donated the organs: “Medics who harvest the organs treat the deceased with great respect.”

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