Giving the gift of life

"At the end of the day it's me and him, he gives me peace," Rosemarie Hartnick says of her relationship with God.

A Plumstead woman is one of a handful of patients selected to undergo a transplant at Groote Schuur Hospital’s new lung transplant centre for state and private patients.

In 2013 Rosemarie Hartnick was diagnosed with a rare lung condition, stage-4 sarcoidosis. The cause is unknown and there is no cure. She needs a double lung transplant.

According to the Organ Donor Foundation, only 14 adults received lung transplants in South Africa last year.

The procedure was previously only offered in Johannesburg, but, after years of preparation, is now a reality for both state and private patients at Groote Schuur.

Ms Hartnick, 49, a mother of two boys, Ross, 17, and Connor, 15, has been unable to undergo the procedure in Johannesburg as she is reluctant to leave her support base in Cape Town and cannot cope with the oxygen demands at altitude on the Highveld.

Sarcoidosis most commonly affects the lungs and skin, but other organs can be affected, and in a few cases, can progress to extensive lung scarring and respiratory failure.

Ms Hartnick had always been relatively fit, so she was surprised when, in March 2013, she started coughing when walking on any incline or taking stairs.

After three visits to her doctor, she was sent for an X-ray, which picked up a lung disease. An open-lung biopsy confirmed it was sarcoidosis.

Now, four years later, she is on oxygen therapy all the time. Her immune system is being suppressed by medication so she is unable to be among crowds of people.

The disease has now caused problems with her heart – secondary pulmonary hypertension. “There’s no pain but I struggle to breathe,” Ms Hartnick said.

Dr Greg Calligaro, of the pulmonology division at Groote Schuur and the UCT Lung Institute, said despite the hospital’s “prestigious pedigree in organ transplantation”, lung transplants were sparingly attempted at Groote Schuur and had not been performed there for more than two decades, although more than 25 000 of the procedures had been done around the world since the early 1990s.

“But there is no academic centre in the country (possibly in the rest of Africa) offering lung transplantation therapy to patients who don’t have a medical aid,” said Dr Calligaro. “This is what differentiates our service from the Johannesburg one, which is based at the Netcare Milpark Hospital.”

In preparation for the procedure Ms Hartnick is undergoing pulmonary rehabilitation, building up her body, getting fit despite lungs that no longer work. She said her lungs and cavity wall had shrunk so much that she would need the organs of a child or very small person.

Dr Calligaro said a transplant work-up was an exhaustive process. “We investigate patients and try to identify any problems that may affect their post-transplant survival. Several of these problems may be accelerated by the immunosuppressive drugs used.”

Another big limitation is donor numbers. However, Dr Calligaro said the Jenna Lowe Trust had supported the lung-transplant service by educating the public about the benefits of organ donation.

In 2012 organ donor and social activist Jenna Lowe, then aged 17, was diagnosed with an extremely rare lung disease, pulmonary arterial hypertension (PH). During her illness, she established the Getmeto21 campaign to get more people to sign up as organ donors. Following Jenna’s death in June 2015, the trustees continue the work of the trust.

Ms Hartnick’s friend and supporter, Kasuba Stuurman said anyone who knows her would attest to how driven, selfless, and motivating she is.

Early common symptoms of sarcoidosis include a dry cough, breathlessness and sometimes a discomfort in the centre of the chest.

Samantha Nicholls, executive director of the Organ Donor Foundation encourages all South Africans to register as donors – regardless of age or illness as the medical professionals will do a thorough evaluation at the time of the person’s death. And even in the case of HIV positive donors – their kidneys can be used for HIV positive recipients as there is a transplant programme in place at Groote Schuur.

In South Africa there are more than 4 000 patients awaiting a life-saving organ and cornea transplant. Last year only 512 transplants were performed of which 361 are solid organs. One third of patients waiting for hearts and liver will die and not receive an organ in time.

“The process is simple – fill in a registration form, online or manually – it takes a few minutes, costs nothing. The registered donor receives an information pack electronically and a donor card with stickers is posted on request. The next important step is to speak to the family because they are approached at the time of death,” said Ms Nicholls.

To register as an organ and tissue donor visit www.odf.org.za or call toll free at 0800 22 66 11.

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