Paul Chung would love to blast out tunes on his saxophone or play sports, but he can’t risk working up a sweat because it could cause a problem with the medical port he must wear to receive dialysis treatments.
The treatments are keeping the 20-year-old Walnut Grove man alive.
Until Feb. 28, he was on a drug, Soliris, for a rare condition called atypical hemolytic uremic syndrome (aHUS). The drug costs $750,000 per year.
The provincial government initially refused to cover his drug cost but the family gathered 2,000 signatures on a petition and the province agreed to provide it for a few months.
The provincial government has told him he is not sick enough to be on the drug. But he’s too sick to live a normal life.
By the time he was put on the drug, Chung’s kidneys were damaged and scarred, although Soliris did stabilize him.
“It turns out the government will only give me the drug” if his kidneys become worse, he said.
It’s his understanding that his only option to have anything resembling a normal life is a kidney transplant.
But because aHUS is genetic, he can’t have a kidney from a family member, lest he or she develop the disease and suffer kidney failure.
Chung is on the transplant list, but that is an unlikely route, for a few reasons.
It’s unlikely he would find a match and then there’s the timeframe.
“They did say six to seven years,” to get a matching kidney from a deceased donor. In addition, a kidney from a deceased donor has a 12- to 36-hour window of opportunity for transplant.
That’s not enough notice for Chung.
“Even if I get a transplant, I need the Soliris” before and after to protect the kidney from the aHUS, he explained.
The family has consulted a geneticist to try and determine whether the aHUS comes down from the maternal or paternal side of the family. But that will take several months, time he doesn’t have.
So the family must look at paying for the testing themselves.
The family has a GoFundMe page to raise funds (Pray for Paul).
His repeated encounters with the Ministry of Health have left him underwhelmed.
He received a phone call and email from the government specifying that he did not meet the criteria to continue on the drug. He asked to see the criteria.
“They wouldn’t send it to us,” he said.
Chung was initially on a four-hour per day dialysis but it was very hard on his body and caused too many side effects, such as headaches and severe fatigue.
He had to sleep most of the day away to keep the headaches at bay.
Now he’s on a nighttime eight-hour format, which is working better for him.
It still means trips to St. Paul’s Hospital.
The illness has taken a toll on him and his family. His mother was driving him when she was rear-ended by another vehicle and cannot work as a house cleaner due to her injuries.
His dad had to take time off work and his older brother dropped his university courses to support Paul.
Chung had finished one year of criminology at university with an eye to becoming a police officer, was an avid musician, and was active.
“Playing my saxophone makes me too tired,” he said.
Even if he had the energy, he couldn’t do sports and misses swimming at the Walnut Grove pool.
Now his life is an endless series of medical procedures and doctor visits.
“I spend my birthday in the hospital,” he said.
Chung’s diet is carefully regulated as basic foods such as potatoes and tomatoes have too much potassium, which can cause kidney problems.
He’s on blood pressure meds and must control his sodium intake – not something a young man normally keeps in check.