Innu face ‘life or death’ situation as wait for transplant continues

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Simeon Poker had no trouble finding a kidney donor. In fact, he had a dozen people lined up to help save the Natuashish man’s life.

But nearly two years after learning he needed a transplant, Poker is still waiting. He fears his time is running out and is backed by a growing chorus of voices, including his legislative representative and First Nation Chief Mushuau Innu.

“I just hope it’s soon, the transplant, and I just don’t want to live like this,” Poker said in an interview with St. John’s last Thursday. “I go down every day. I’m getting sicker and sicker.”

“The kidney is there”

Poker, an Innu father and businessman, said he walks at night to calm his restless legs. The effects of constant nausea and vomiting show on his thinness. With little hope, Poker said he was contemplating suicide.

“I can’t sleep, I can’t lie down, I can’t sit on the couch, I can’t do anything,” he said.

Poker, 41, has battled diabetes for nearly two decades and developed kidney failure in 2020.

Her younger brothers were tested to see if they could donate her a kidney. Two of them tied, and Timmy Poker prepared for the transplant.

“The kidney is here, and he’s ready. I want him to have a normal life,” Ruby Poker said, shaking her husband’s hand.

Timmy Poker, left, waits to donate a kidney to his older brother, Simeon, right. Their middle dad Prote Poker says his son’s condition is getting worse day by day and is disappointed with how late Simeon is getting a transplant. (Ariana Kelland/CBC)

Simeon Poker said he and his family learned in June 2020 that it would take him three to six months to get the kidney transplant in Halifax.

Since then, he said, there has been a lack of communication and differing opinions from doctors about what medications he should be taking. He and his family moved to St. John’s last summer to be closer to the Health Sciences Center, but Poker said his health was getting worse.

Over the past few months, her fingers and toes have turned black due to slow circulation.

keep hope alive

Prote and Christine Poker, his father and mother, traveled to St. John’s three weeks ago after Ruby called to say her husband was losing hope. He was sinking into a deep depression and wanted to skip his vital dialysis appointments.

“I keep telling him it’s gonna happen soon. Every time I knew he had nausea and vomiting I said it’s gonna be soon, soon I keep saying it,” said declared Prote Poker, the former chief of the Mushuau Innus. First Nation.

“[The doctors] maybe say [you can get the transplant] after another test, they keep changing the dates.”

The longer Poker waits for a transplant, the sicker he gets. If he’s too sick, he can’t have surgery — a frustrating Catch-22 for him and his loved ones.

Poker’s toes started turning black months ago while he was in St. John’s preparing for a kidney transplant. One of his fingertips also turned black due to lack of circulation. (Danny Arsenault/CBC)

“Sometimes I don’t know where to go to ask for help, or where to call. It’s hard to see him like that, in pain all the time, and I feel very helpless as a mother, I have l ‘I felt like I let him down,’ Christine Poker says, tears streaming down her cheeks as she sits next to her son.

“When I came here he was begging me, begging me to let him die.”

In 2019, nearly 4,500 Canadians were on a waiting list for a transplant, according to the Kidney Foundation of Canada. Of these, 77% were expecting a kidney.

According to the Kidney Foundation, wait times range from several months to several years.

The website for the Multi-Organ Transplant Program in Halifax lists the wait time for a kidney transplant as 2.8 years, but does not say whether that number includes people waiting for a kidney donor.

MHA takes the case

The fate of Simeon Poker landed on the floor of the House of Assembly earlier this month when MP Lela Evans asked the Minister of Health what he was doing to help. Health Minister John Haggie said he could not speak to individual cases and asked Evans to follow up directly, which she did.

Evans, the MP for Torngat Mountains, took on Poker’s case in August 2021. Since then, she has been in contact with the CEO of Eastern Health and the Vice President of Clinical Services.

Evans said she learned COVID-19 played a role in the delay, but she said the biggest setback was a lack of clear communication with the Poker family about what Simeon needed to do to get the transplant.

“For me, we have an Innu man who speaks his own language, he also speaks English, he has the support of his parents, the support of his wife, and yet he falls through the cracks because of communication and follow-up,” Evans said.

Lela Evans, MHA of the Torngat Mountains, has been studying Simeon Poker’s case since August 2021. She says poker failed due to a lack of proper communication from medical professionals. (Danny Arsenault/CBC)

“When he is sick, he goes [emergency] and where is the team?

Evans said she was shocked by his rapid physical decline, especially since he uprooted his entire family to move near a larger health center.

“In 2020, Simeon Poker was a healthy man. He may have had issues, but they weren’t major issues,” Evans said.

“It’s almost like when he was taken into care, his condition got worse.”

“Its a question of life or death”

In a letter dated March 14, Mushuau Innu First Nation Chief John Nui expressed his support for Poker and urged the province to look into his case.

“We are extremely concerned about the toll on him from the long wait times, the plethora of medication, the prolonged uncertainty and the real displacement of his home, his community and his people and we are carefully monitoring his descent into loss of hope and depression,” Nui wrote in a letter, provided to Evans.

“We see a young member of our community spiraling down despite his valiant efforts throughout this ordeal he faces.”

Nui demanded that a decision be made on a drug regimen that would reduce Poker’s pain and allow him to sleep, and that a date be set for the transplant.

On Thursday afternoon, Poker said he was told his case would be sent to Halifax for review. It’s an encouraging sign, but the Poker family is cautiously optimistic.

Simeon Poker, left, undergoes a kidney transplant from his brother Timmy Poker. To show support and raise funds, Tommy Poker, right, walked approximately 600 miles and raised over $30,000 in the summer of 2021. (Heidi Atter/CBC)

In a statement, a spokesperson for Eastern Health said it has a role to play in preparing a patient for an organ transplant by providing medical care and education, and coordinating with the multi-organ transplant program in Halifax.

The health authority said the primary point of contact is a transplant nurse coordinator who works with a team of healthcare professionals, including an Indigenous patient navigator.

“All patients have a prescribed treatment plan, and it is imperative that they follow their plan to ensure the necessary preparation for transplant eligibility,” the emailed statement read.

“Eastern Health pays for all tests, procedures, and consultations needed to prepare for the transplant, which vary depending on the clinical needs of the patient.”

For its part, the Department of Health and Community Services, which is responsible for overseeing the provincial kidney program, said it would not discuss individual cases.

A statement from the department sent on Tuesday says treatment decisions rest with specialists who work with regional health authorities.

The Poker Girl is set to graduate from high school in Natuashish this spring. The hope is that she will be accompanied by her father and uncle, the man who is willing to help save her brother’s life.

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