Kidney dialysis patients in the UAE, facing up to seven-hour round trips for hospital treatment, are urging they be allowed to receive treatment at home.
The majority of haemodialysis patients have to be connected to a machine at hospital for at least three hours, three to four times a week — with lengthy travel only adding to the ordeal.
Some family members have had to leave their jobs to care for their loved ones while others have relied on domestic helpers and drivers.
Here are three patients who have had their lives changed for the better thanks to home dialysis:
Firas Khalaf, 35
Mr Khalaf has Down syndrome and suffers from kidney failure.
The Emirati qualified for home haemodialysis last year after 10 years of dialysis. The home service has lifted a weight off his family’s shoulders.
His eldest sister, Enas, quit her job eight years ago to care for him full-time. Enas, 41, would drive him to his sessions at Sheikh Khalifa Medical City from their home in Al Shamkha several times a week.
“We had to drive 100 kilometres going and coming after peritoneal dialysis was no longer an option,” her father, Aref Khalaf, said. “It took us at least an hour and each time we took Firas to the hospital, we had to stay with him for four hours.”
The family found out about the home service by chance.
“We approached the company and there was complete co-operation from all sides,” said Aref, who has five children. “I’m always searching for ways to make him more comfortable.
“After home haemodialysis. It’s much easier for us. It’s more comfortable for him and for us to stay at home. It’s a big change.”
The insurer approved the home treatment, but Ms Khalaf says she wishes she had known about it earlier.
“I can’t say I have regrets, but my life would have been different,” she said. “It’s been eight years, but I probably would still be at my job. At the time, physically and mentally it was very difficult so there was no way I could keep my job.
“Dialysis was the main reason I resigned but he also has special needs and I didn’t want to leave him with a stranger.”
Saleha Al Seiari, 29
Ms Al Seiari was studying pharmacology during her first year of university when she says her life came to a halt.
At 20 years old, the Emirati suffered kidney failure and had to be put on dialysis three times a week for up to three hours at a time.
“Life on dialysis is very difficult,” Ms Al Seiari said. “After going to one session, you would be exhausted throughout dialysis and for the next day.”
She had to drop out of university. “I shut myself away from the world. I didn’t speak to anyone or do anything,” she said.
A few years ago, Ms Al Seiari slowly began to put her life back together.
“I’d had enough and I felt like I was going nowhere so I began studying for my IELTS (English language testing) and applied for a job.”
She was hired as a secretary at a private company but broke her leg and was put on home haemodialysis.
“I only heard about the service from another patient in the hospital waiting area,” Ms Al Seiari said. “My doctor didn’t tell me about it.”
Insurance approved the request because she could no longer drive herself to hospital. But after her leg healed it stopped.
“What hurts the most is that I could have led a completely different life if I was on home haemodialysis,” Ms Al Seiari said.
“I could have continued my education and regained my life. I could have adjusted my hours. I would be at home with my family instead of leaving them for so long. Psychologically and mentally, I would have been happier.”
Ms Al Seiari also suffers from epilepsy and is hoping that insurance will take that into consideration when looking into her request for home dialysis care.
“I’m hopeful that they will agree,” she said. “This service should be available for everyone.”
Saleh Al Kaabi, 47
Mr Al Kaabi describes his life as one of torture. The Emirati takes care of his diabetic brother who lost his sight because of the disease.
“I work in Abu Dhabi and I live with my brother in Al Ain,” he said. “I used to drive down three times a week to take him for his dialysis.”
His brother, Saeed, is two years older than him and unmarried. His condition was diagnosed in 2011.
“It is just me who takes care of him,” Mr Al Kaabi said. “The rest of my siblings are all married and living further away. It is so stressful.”
Mr Al Kaabi works on night shift and his job often requires travel.
“Do you know what it is like to not be able to take off work while knowing that you have a family member who could die because you can’t take them to the hospital?” he said.
“I used to beg anyone to take him to the hospital when I couldn’t leave work.”
But each time someone else took his brother to hospital, he said, Saeed would return home with an injury or a bruise.
Nine months ago, Mr Al Kaabi heard about home haemodialysis from a friend and applied for the service on behalf of his brother.
“Home haemodialysis changed all our lives,” he said. “Saeed is a lot better, and you can see the improvement.
“When I used to take him to the hospital, he would come back and sleep for the entire next day, and now I’m not panicking over who will take him to hospital when I am abroad or at work.”
_______________
Read more:
UAE dialysis patients call for vital home care lifeline
Demand for law to allow kidney patients dialysis without fearing for job