A change of heart

Most women her age are stressing about reaching their 30s, panicking about how to reduce visible signs of ageing, or trying to juggle career and family.

For Tina Beckbessinger (31) life has just begun.

Tina was born with a cluster of congenital heart defects, including a missing tricuspid valve, three holes, narrowed arteries, and a fast and irregular heartbeat. She was what’s known as a ‘blue baby’.

“As time went on, my heart got bigger and bigger because it was working so hard to get blood and oxygen around my body,” she says. “The doctors didn’t think I would reach double digits.”

The tendons around Tina’s heart suffered under the strain of the enlarged organ and eventually Tina suffered heart failure and had her first pacemaker fitted at the age of 14. The second was when she was 22.

Normal life was out of the question for Tina and her childhood was punctuated by doctor’s appointments, hospital stays and oxygen machines. Repeated chest infections kept her almost continuously on antibiotics during the winter months.

Tina was unable to complete her normal schooling and had to be home-schooled for the last two years of her school career. She managed to attend Varsity College two years after she matriculated, but her second year of studies was just too much for her and her cardiologist, Dr Dave Gilmer, suggested she stop.

“Her lips were deep purple, she had black rings under her eyes, and although her frame is tiny, her tummy was distended due to a swollen liver as she was retaining water due to heart failure. She was devastated: She was 21 years old and destined to spend the next eight years of her life almost bedbound,” says Tina’s mom, Bev.

“I would sleep 22 hours a day, and I had to be on oxygen 99% of the time. I couldn’t bath, wash my own hair or get dressed on my own. Eating was a major task for me. I would eat very slowly because I couldn't breathe and eat at the same time and was so weak that chewing was very tiring. I find it difficult to describe how debilitating the weakness and tiredness was.

“The lack of oxygen gave me blue lips, and as the bone marrow, which was starved of oxygen, tried to make more red blood cells to carry more oxygen around my body, my blood became thicker and more toxic and more difficult for my heart to pump. Every six weeks I had to have blood drained (a procedure called venesection) through a large needle.”

But her problems didn’t end there. The small arteries of Tina’s lungs became narrowed, resulting in abnormally high blood pressure within the lungs (pulmonary hypertension). It became clear that she needed a heart transplant as well as a new set of lungs.

Tina’s name was placed on the transplant list in 2009 and the wait began. Two and a half years later, on October 29 2011, she got the call that changed her life. “It’s extremely rare to receive a heart and double lung transplant as three organs can save three lives, not just one.”

“I am so grateful to the woman who became an organ donor and gave me a second chance at life. She must have been an incredible young woman because she decided just before she went into theatre for repair to damage resulting from a stroke that she would like to gift her organs should she not survive the surgery. If she hadn’t done that, I probably wouldn’t be alive today.”

Tina’s cardiothoracic surgeon, Dr Robert Kleinloog, and his team had a race against the clock to fly to another province to collect the organs. It was an anxious wait for Tina, who spent five hours at Ethekwini Hospital and Heart Centre in KZN, while doctors checked to see whether the organs would be a match for her. They had to be a tissue match as well as the right size to fit exactly in her chest. It was 10pm on a Saturday night when the hospital’s transplant co-ordinator, Cindy Goldie, came to tell Tina and her anxiously waiting family that the transplant would be going ahead.

The surgery took all night. “I remember saying to my mum ‘see you tomorrow morning’ as I was wheeled into theatre,” says Tina. “I wasn’t scared, just so, so excited.”

“It’s been more than a year since the transplant and I have literally never felt so fantastic in all my life. Each day just gets better and better!”

“There have been some teething problems getting the combination of medicines right, and adjusting to a constantly suppressed immune system, which is necessary to keep my body from rejecting the organs. But in relation to how I felt before, I feel phenomenal. A few weeks after the op I was able to do things normal people do; I said to my mum: ‘do normal people feel this good all the time?’ I couldn’t believe it.”

“I noticed her colour had changed by the time she came out of surgery,” says Bev. “She had never had pink lips and nails before. She went from strength to strength after that,” she says.

“Discovery Health has been incredible in their generosity and support,” says Bev. “More than just paying the bills, they showed an interest in Tina’s progress, were genuine throughout and were with us at every step. She was rejected by other medical aids because of her condition, but Discovery Health took us on and our needs have never been an issue.

“If it weren't for Discovery Health we would never have been able to afford this life-saving operation, not to mention all the different medications I will have to take for the rest of my life.”

Tina is able to go shopping for groceries, swim, go out with friends and have a job for the first time in her life. “When I lift a 5kg pocket of potatoes I feel superhuman! I appreciate every minute of my life and live it with joy. Just walking my dog to the end of the road, or blow-drying my own hair is marvellous!”

Tina is feeling so strong that, providing she has resolved her medication concerns, she has her sights on some pretty big goals. “I would love to participate in the World Transplant Games that will be held in Durban in August 2013.”

“Slowly I am becoming the person I always dreamed of being, and I owe that to my donor, medical team and all the people at Discovery who have made it possible.”

How does Discovery Health Medical Scheme cover organ transplant?

Tina’s transplant costs and her ongoing medication costs are covered by Discovery Health:

• Discovery Health pays for organ transplants as long as surgeries are done by a Board of Healthcare Funders (BHF)-registered health care provider.
• You need to authorise and approve the procedure with DiscoveryCare Hospital Services.
• Discovery Health will cover the appropriate, approved costs of the transplant for the recipient and the donor from your hospital benefit.
• Pre-op tests such as X-rays are assessed for cover on an individual case review basis. For instance, Tina’s chest was X-rayed to see whether the donor’s lungs would be able to inflate properly in her chest cavity. Claims are paid from your Medical Savings Account/MSA or by the Scheme, depending on whether your transplant is a Prescribed Minimum Benefit (PMB).
• Compatibility testing for the recipient is paid from day-to-day benefits (ie: your Medical Savings Account/MSA.), unless the transplant is a PMB, in which case the Scheme will fund these costs.
• Discovery Health will pay for the transport of harvested organs for transplant.
• Cover for hospital admissions is based on your specific plan. Most plans cover the hospital account up the Discovery Health Rate.
• Medicines can be paid from Discovery’s Chronic Illness Benefit, depending on your plan type.