He thought his battle with aHUS would be over after the provincial government approved funding of the $750,000 drug Soliris, but Paul Chung has found himself facing another medical emergency.
The 20-year-old Langley student now desperately needs a new kidney, as the rare blood disease caused too much damage to his body before his Soliris treatments began.
“I need a new kidney as soon as possible so that I can return to university to achieve my goals,” said Chung, who dropped out of Simon Fraser University after being diagnosed with the disease last August.
“My disease is a genetic disease, so my family is unable to donate to me. Currently, if I were to do nothing but wait for my turn in the organ donor waiting list, I would have to wait six to seven years from now.”
AHUS, short for Atypical Hemolytic Uremic Syndrome, causes the body to attack its own healthy cells, leading to blood clotting and organ failure, particularly in the kidneys. It is a genetic disease that can affect people at any age, and can be life-threatening.
Plasma exchange is often used as treatment, however the drug Soliris, made by the company Alexion, has proven to be more effective.
On Nov. 20 of last year, the province announced the high cost of the drug — $750,000 per year — would be covered on a case-by-case basis, after another young aHUS patient, Shantee Anaquod, went public with a plea for help.
Chung received treatments from Dec. 6 until Feb. 28, and saw immediate results. His LDH levels (lactate dehydrogenase) in his blood dropped from 340 to 190 (the normal range for a healthy person is 115 to 230), and his energy levels increased.
“Previously, before I had received the Soliris treatment, I had no energy, had no appetite. I had lost a lot of weight. I was always tired and was lying in my hospital bed most of the time,” Chung said.
“Before my diagnosis, I remember going for a jog and becoming completely out of breath after running for only 10 seconds. I had never been this sick before in my life so I was scared. I had a lot of negative thoughts in my mind. After receiving Soliris, I regained my energy, and I started to gain weight. I even had enough strength to go out and meet with friends. There seemed to be hope for me after all.”
In many cases, if Soliris is received shortly after diagnosis, the kidneys can regain full function. Chung’s, however, did not. He believes if he had received Soliris as soon as the funding was approved in November, it could have made the difference.
He is now reaching out the public for help. Since August, he has driven from Langley to St. Paul’s Hospital in Vancouver three times per week for dialysis, and will continue to do so until he finds a kidney donor.
When the kidney transplant is done, he will once again receive Soliris to protect the new organ from the disease.
“Dialysis patients tend to respond differently to their dialysis treatment. For myself, after each time I had dialysis I would either have an unbearable headache, or become nauseous, rendering me unable to study or work,” Chung said.
“I am pleading for help. I wish for someone to generously help my life. I wish to return to a normal life where I can fulfill my goals and dreams.”
For more information on kidney donations, contact St. Paul Hospital’s Living Donor Program at 1-877-922-9822 (toll free), or email firstname.lastname@example.org. More info on the program can be found at renal.providencehealthcare.org.
Chung is also collecting donations online through the “Pray for Paul” GoFundMe page here.