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'Why are we not donating our organs?'
Liver comes too late for Yellowknifer Gary Potts; family makes plea for national donor database

Laura Busch
Northern News Services
Published Friday, May 3, 2013

When Gary Potts first went on the transplant list to receive a new liver in September 2012, his wife Nancy was hopeful the new organ would be found quickly and her husband would be able to overcome his medical ailments.

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Seven-month-old Anabel Brost, left, has lived in Edmonton since she was born on Oct. 3 while she waits for a heart transplant. Here, Anabel tries swimming for the first time with dad, Matthew, mom, Trish, and twin sister Aryana in March. - photo courtesy of Matthew Brost

"The biggest thing I have to say is we still had that hope. We had hope that that organ was going to come and Gary was going to be OK," she said. "The wait was agonizing to say the least because you live and die by that cellphone all day long, sitting in the hospital waiting to hear that they have a liver."

However, when the call finally came it was too late for Gary, who died on April 15 at the University of Alberta Hospital in Edmonton.

The Potts family got the call they had been waiting for on April 14 - a liver was available and it was a match for Gary, who was by then at the top of the transplant list.

The 46-year-old had been getting sicker and sicker and on Feb. 25 had been moved into the intensive care unit. When the time came for the liver transplant, Gary was being kept alive on a life support system.

Nevertheless, he was taken into surgery at about 10:30 p.m. Sunday night. However, it became apparent to the surgeon soon after opening Gary's abdomen that the transplant would not be successful, said Nancy. There was a lot of scar tissue buildup from previous surgeries, and pressure from fluid that continuously built up in his abdomen - a common occurrence for those suffering from liver diseases - had caused his liver to adhere to his intestine.

"The surgeon made the decision that they couldn't do it," said Nancy. "So, they essentially closed him back up and sent him back to the unit and we removed life support that morning and he passed away in the afternoon."

Nancy Potts said her experience waiting for a new liver for Gary has opened her eyes to gaps in the current organ transplant system in Canada.

Currently, the medical system in the NWT is unable to allow for the harvest or transplant organs and this is unlikely to change because of the specialized surgeons and equipment required, said Donna Allen, director of territorial health services with the Department of Health and Social Services.

"We would never have the ability to harvest organs here," she said.

When people die at Stanton Territorial Hospital, it is possible for them to be flown to Edmonton on life support where they can donate tissue and organs, she added. However, while this has taken place in the past, it has not happened for several years.

"I don't think it's fair at all because we have recipients here, so why are we not donating our own organs?" said Potts.

The transplant wait list and organ transplantation services are managed by the Human Organ Procurement Exchange (HOPE) program in Alberta.

Only two to three per cent of deceased persons qualify to be an organ donor, said Mike Bentley, patient care manager with the HOPE program. The best-case scenario for organ donation is usually the worst-case scenario for the family of the deceased - a sudden death, unrelated to disease or infection.

Yellowknifer Roman Welna died last week while waiting for a double-lung transplant. He had been on the transplant list since November 2012.

Roman spent his last months in Yellowknife awaiting new lungs, confirmed his wife Cindy Welna. However, the call never came for the Welna family and on Thursday, April 25, Roman died.

"He tried to remain as positive as possible," said Cindy.

On the day Roman died, Jackie and Edward Hardy were in Edmonton accepting a medal on behalf of their 18-year-old son, Josh Hardy, who donated organs to six individuals after succumbing to a head injury sustained while skateboarding on the McMahon Frame Lake Trail last July.

Josh donated one lung, his kidneys, his heart and his liver, which was split into two pieces.

Knowing how serious his injury was, she and her husband had made the decision to donate Josh's organs a couple of days before he was declared brain dead.

"It's a difficult decision when you're dealing with the pending death of a loved one," Josh's mother, Jackie, told Yellowknifer.

However, the family took solace in the fact that Josh had discussed wanting to be an organ donor with his brother before his accident, she said.

The best thing people can do to improve organ donation in the territory is to sit down with their families and let them know what their wishes are, Bentley and Allen agree.

"It's very important that when you're discussing what you want to have happen at the end of your life - and this is for healthy people or anyone - your family and whoever would be making your end-of-life-care decisions really knows what your wishes are on organ and tissue donation," said Bentley.

In Alberta, having a donor card in your wallet is not enough for a physician to harvest your organs and tissue. This is a decision ultimately left up to the next of kin and doctors involved at the time of the patient's death.

This extends to all NWT residents who die in hospital in Alberta, as often happens with traumatic injuries, said Allen.

"When people are dying, it's an emotional time and it's difficult for people to make those decisions," she said. "That makes it even more important to have that conversation with your family."

For the Hardy family, the decision to donate Josh's organs was the best possible outcome of a terrible situation, said Jackie.

Through an anonymous service which allows the families of organ donors to check in on recipients, the family learned one recipient has since died but the other five are doing well.

"It's amazing what one person can do," she said. "It's a wonderful gift. Yes, you are giving virtually to strangers, but it's the gift of life."

One Yellowknife family is currently waiting for someone to give the gift of life to their baby daughter.

On Oct. 3, twins Anabel and Aryana Brost were born by emergency caesarean section at the Royal Alexandra Hospital in Edmonton. The two are a rare form of twin, called mono amniotic, which means they shared the same amniotic sac and placenta in the womb.

Aryana is healthy, weighing a little more than 20 lbs. and is already trying to talk and expressing her personality, said dad Matthew Brost on May 1.

Anabel is also a happy little girl, often smiling and laughing, and despite the odds has put on weight and now tips the scales at 13 lbs., he said. However, she is not yet healthy enough to leave the hospital.

On Dec. 14, doctors surgically installed a shunt in Anabel's heart, which she has since outgrown. Currently, Anabel is in the emergency ward, waiting for surgery to increase blood flow between her heart and lungs.

After this surgery, the family hopes Anabel and Aryana will be able to come home to Yellowknife for the first time. However, Anabel needs a heart transplant if she's to survive her childhood, doctors have told Trish and Matthew.

"I don't think many people realize how important it is, that they could be saving someone else's life when they pass away," said Matthew, adding one of the first things the family did after learning Anabel would need a new heart is join the donor list. "You don't know what it's like until you're in it."

Fact file

NWT Organ transplant wait list

7 - NWT residents on waiting lists to receive organs in February 2013

1 - Heart transplant patient

1 - Double-lung transplant patient, deceased

5 - Liver transplant patients, at least one deceased

7 - Organ recipients in 2011/12 fiscal year (five liver recipients, one Islet cells recipient, one partial liver recipient from a living donor).

4 - Organ recipients in 2010/11 (all liver recipients)

3 - Organ recipients in 2009/10 (one heart recipient, two kidney recipients)

4 - Organ recipients in 2008/09 (three kidney recipients, one liver recipient)

Source: HOPE program, Department of Health and Social Services

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