After 15 years of hospital care, Discovery Home Care brings Juan's life saving treatment to his home
For 13 years, Juan Senekal (16) and his family rearranged their school and work lives every four weeks so Juan could get his life-saving medicine in hospital. Life changed for the better in 2019 when he started receiving the same hospital-level care at home through Discovery Home Care.
When Juan was only 11 months old, he became dangerously ill during a family holiday in the Drakensberg. His mom, Priscilla, says: "He started vomiting and panting. Then he became grey and unresponsive. We rushed him to hospital where he was diagnosed with meningitis caused by the Haemophilus influenza type B (Hib) bacteria."
Neither Juan's initial Hib vaccination nor a subsequent one was effective. That's because he was eventually diagnosed with an immunoglobulin deficiency.
Having an immunoglobulin deficiency means the body doesn't make special proteins called immunoglobulins (also called antibodies). People with immunoglobulin deficiency are more likely to get infections as they don't have antibodies to help kill bacteria, viruses and other germs in their bodies.
Juan needs a drip every four weeks to fight life-threatening infections
To prevent Juan from becoming seriously ill, he has taken antibiotics every day since his diagnosis at 14 months old. "He also had to start going for Polygam infusions every four weeks to help him fight infections," says Priscilla.
Polygam is a medicine used to strengthen the body's immune system and to lower the risk of infection in people with a weakened immune system. The medicine is made from healthy human blood that has a high level of antibodies, which help fight infections.
"My husband or I would have to take a day's leave every four weeks to take Juan to hospital. The drip takes a whole day to administer and comes with a host of side effects and possible complications. Because of Juan's compromised immune system, he'd receive the drip in a private room, so it was important I was with him all day."
Priscilla would also have to arrange for someone to look after Juan's two young siblings on hospital days.
Regular hospital treatments hang over Juan "like a dark cloud"
When Juan was five years old, he was well enough to stop getting Polygam infusions for five years. But in 2016 he had to start getting them again.
"Each hospital visit involved a lot of planning. I'd have to take leave, book Juan's medicine in advance, contact the hospital and get preauthorisation from medical aid. Juan also has a sensory disorder, which means he only eats certain foods and I'd have to pack enough food for him for each hospital stay."
"My husband or I would fetch Juan from school, drive him to the hospital and we'd sit there on our laptops working or doing conference calls. One of us would always sleep over in hospital with Juan."
"I was finished, mentally and emotionally. It's a horrible thing for your child to go through. And Juan is a quiet, gentle child and all these hospital visits started taking their toll on him. I stopped telling him when treatment week was scheduled for, because the thought of it would hang over him like a dark cloud."
"We realised Juan's treatment needed to happen in a more sustainable way"
"When Discovery Home Care was first mentioned to me, I was sceptical," admits Priscilla. "I wanted our home to be a safe space for Juan and was worried about the impact of his bedroom being turned into a hospital room."
"But Juan will need his treatment for the rest of his life. So we came to the realisation that we needed to find something sustainable for him and for us. Especially because now that he's older, he's becoming more independent. He goes to friends and plays sports and does other extra murals."
Priscilla's family decided to try Discovery Home Care. Juan's pulmonologist applied for the service on their behalf.
Discovery Home Care allows patients to receive hospital-level care at home. Discovery Health Medical Scheme (DHMS) members like Priscilla and her family can receive high quality care from a qualified nurse in the comfort of their own homes.
"Discovery Home Care has changed our lives"
"Home Care is so convenient. I just pop them an email telling them which dates and times we're available. The medicine gets delivered to us and a nurse comes to the house with everything else needed for the infusion. Juan can choose what he wants to do while he's on the drip - he can sleep, spend time gaming, or study. His younger sister, who also has an immune disorder, often watches movies with him while he's getting his drip."
"Thanks to access to Home Care, Juan gets his treatment and his life is almost normal. He used to try and hide his condition. He didn't want people to know he was having treatment. Now he's even had a friend over to visit while he was on a drip, which he couldn't do in hospital. Getting treatment is no longer this huge, invasive event."
"Our lives in general have also become much more relaxed. In the three and a half years that Juan has been receiving his treatment through Home Care, my husband and I both graduated with three-year degrees. We wouldn't have had the time to study if we were still taking Juan to hospital so regularly."
Home treatment minimises Juan's chances of getting sick in hospital
Juan and his sister both have immune disorders and are at risk of getting sick easily. So Priscilla was relieved that Juan didn't have to go to hospital for his treatments, especially during the COVID-19 pandemic.
"Hospitals are dangerous for Juan. He had to go once in 2020 to see a specialist and it was traumatic to take him there. There were signs everywhere warning of the high risk of contracting COVID-19."
"Also, now that Juan is no longer being treated by a paediatrician because of his age, he would need to stay alone in hospital overnight to receive his infusions, without a parent. That would be upsetting to him because he's someone who likes to be at home, with his family. That's where he feels safe and secure."
Compassionate nurses give high quality care
"Each nurse we've had has been fantastic. They are so caring and build relationships with us. Once during a drip, Juan's blood pressure went up and the nurse stayed on longer to continue monitoring him. I used to come home from work when Juan had a Home Care visit, but I've become so comfortable with and confident in the Home Care nurses that I don't need to do that anymore."
"What's also nice is that Home Care is flexible. We've had to ask them to change dates so that Juan can get his infusion before a school camp or before holiday and they are always so accommodating."
"We are so relieved that DHMS pays for everything - the medicine and the nurse. Each treatment comes to almost R15,000!"
Juan can lead a normal life despite regular treatments
"When I look back, I don't know how we managed with all the hospital visits. Having experienced hospital care for so many years, I was initially worried that care at home might not meet Juan's needs, though I knew that ongoing hospitalisation wasn't sustainable. However, honestly, Discovery Home Care has had the most positive impact and exceeded all of our expectations. We are so grateful that Juan's infusions have become a normal part of his life and we know now that he'll be able to study and get a job. And if he wants to, he can get married and have children, without his treatments disrupting his dreams."
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