Jamal El Ali thought he had reclaimed his life.
It was mid-2018 and after "losing the battle" against chronic kidney disease and heading toward complete failure of the vital organs, several months under the watchful eye of staff in the Home Hemodialysis Unit at Toronto General Hospital (TG) had led to a return to his busy routine.
An accomplished marathoner, Jamal was back running long distances. He resumed teaching a university course in project management and was preparing to travel to England to revive work on his PhD.
"My dreams were becoming unlimited," says Jamal, 57. "Everything was coming back to me."
But a second serious condition, one he describes as "far more devilish, far more destructive," lurked.
Last fall, Jamal had a bowel obstruction, which led to a month in hospital, abdominal surgery and a diagnosis of encapsulating peritoneal sclerosis (EPS). It's typically a complication for someone who has spent years undergoing peritoneal dialysis, not someone like him who had been on it for mere months.
Two teams have come up with a plan tailored to Jamal
The pain at times was paralyzing. In six weeks, he lost about 30 pounds from an already-slender frame.
Suddenly, the daily challenge became more complicated than just getting the toxins out of his blood – there also had to be a way to ensure that Jamal could get enough nutrition into his body, and keep it.
One patient. Two conditions. The solution has been a unique partnership between the team in Home Hemodialysis and their counterparts in the Home Parenteral Nutrition Support Clinic, also at TG.
Together, the two teams have come up with a plan tailored to Jamal. In addition to his nightly dialysis, several times each week, while dialyzing, he ingests about 800 calories of total parenteral nutrition (TPN) in a liquid food mixture, which is administered using the same machine at his home.
The treatment has been transformative. Jamal is back to work and exercising. He's as busy as ever.
"I feel good," he says.
The Home Hemodialysis and TPN teams did more than just work together to come up with the solution to get Jamal healthy enough to go home. The collaboration between the teams is keeping him there.
"This is truly integrated care," says Rose Faratro, a registered nurse in the Home Hemodialysis Program. "If we want to keep Jamal home and thriving, we can't be separated, we have to work together."
Rose, a nurse at Toronto General since 1988 who has for the past 20 years taught patients, including Jamal, to do Home Hemodialysis, says it's not common for people to combine dialysis and nutrition treatments.
And, having the treatments done simultaneously, means the teams also must join forces. It's about physicians, dietitians, pharmacists and nurses from the kidney and nutrition teams coming together.
Jamal's regular blood work is shared between Home Hemodialysis and TPN. Same for his weight. Copies of the educational binders each team has to keep track of his treatment have been given to the other.
"It takes a lot of work, a lot of consultation," says Dr. Ennaliza Salazar. "Any changes we make to Jamal's care plan, one team informs the other.
"Communication really is the key."
A gastroenterologist with a subspecialty in nutrition, Dr. Salazar, a Fellow working under Dr. Johane Allard, UHN's Director of the Nutrition Support Program, says since she started working with Jamal last October, she's realized "he's someone who's not letting his disease define him."
She says that Jamal's positive attitude and willingness to be "an educated patient" has served as a motivator for everyone on both teams to work even harder on his behalf.
"It would be easy, as two separate teams, to work at cross-purposes," Dr. Salazar says. "But the complexity of our communication makes this work. We talk a lot. Our consultations take a long time.
"We're thorough with each other. It can't work unless every member of both teams works together."
It's a painstaking process. In addition to weeks of in-hospital training to educate Jamal on how to complete dialysis properly and safely on his own at home, Rose also visited to ensure his in-home equipment was set up correctly. A similar audit is done once every six months to ensure it remains so.
Jamal returns to TG once a month for blood work. He's also in regular consultation with the TPN team to discuss his nutrition intake. Every three months he meets with his renal team to monitor his kidneys. In between these visits to the hospital, he also is in regular contact with the teams via email and phone.
"What we're all trying to do is getting patients back to their lives," Rose says.
"That's what we hope we've done with Jamal."
Jamal is well aware what the teams are giving him – it's treatment, it's not a cure. And, he adds, learning to live with a disease that's difficult if not terminal, means it's crucial to have a positive outlook on life.
Knowing he's not alone, certainly eases the burden.
"The two teams are constantly collaborating," Jamal says. "They work together to look after my health.
"It's a beautiful thing. It makes me feel safer."
