A teenager is waiting for a kidney to survive

A teenager who needs a new kidney to live a normal life manages to face the long and growing waiting list thanks to demanding dialysis treatments that she documents on TikTok.

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Sitting in her hospital bed, Elisabeth Mai Tram Nguyen puts together short videos that delight her 3,600 TikTok subscribers. The 13-year-old has already racked up 121,000 likes for his stories about waiting for a kidney transplant.

“I can’t wait to have a new kidney, but I know it won’t be soon,” explains the young girl at the Integrated Center for Extra-Corporal Therapy (CITE). Like her, 12 patients come here for their dialysis treatment three times a week.

In addition to a cocktail of drugs aimed at strengthening her immune system, the teenager had to drastically change her diet.

But the most difficult are certainly those hours of doing nothing in a hospital bed, a time that she devotes to video editing.

Before receiving a new kidney in a context where there are fewer donors, Elisabeth will have to be sure that her disease will be stabilized. She won’t be placed on the waiting list until next August.

Fewer donors

However, she could see the delay stretched out by another year due to the scarcity of organs.

“There were two years of waiting before the pandemic; it’s over three years now,” says André Bélisle, assistant head nurse at the CITE of the Sainte-Justine Mother-Child University Hospital Center (CHU).

The periods of confinement and the increase in teleworking due to the pandemic have reduced travel on the road network.

And fatal accidents are one of the biggest sources of organs for transplant.

A young girl who loves dancing, Élisabeth saw her world turn upside down on August 10 when simple flu symptoms (difficulty breathing, body aches, headache) escalated to the point of forcing her father to call 9-1-1.

Admitted to the Saint-Eustache hospital in the afternoon, the teenager was quickly transferred to the Montreal hospital where it was found in the evening that her illness was very serious. Without treatment, it was death that awaited him in a few days, even a few hours.

Rare in children

“Elisabeth suffers from a very rare disease in children, ANCA vasculitis, which destroyed her kidneys,” explains Dr. Geneviève Benoit, the specialist who made the diagnosis. Only a transplant of a new kidney can restore her to a normal life, given the fact that she will have to take medication.

Each dialysis session lasts about five hours during which she does not leave her bed, while her blood is pumped through a machine that filters it to purge impurities.

“It’s not always easy for young people to remain seated while the artificial kidney is doing its job,” explains nurse Catherine Sarrazin, who has accompanied Elisabeth since the start of her treatment.

Dialysis is very different in children, because they are in full development and the treatments must be constantly adjusted; this is why the CHU staff has devoted its expertise to the CITE.

The school in the hospital

All this time away from school has led the pediatric hospital to hire teachers who come on site to ensure academic progress.

“I like French, but less math,” says Elisabeth with a mischievous smile.

The high school student who dreams of becoming a video editor is known in the unit for her good humor.

Her father, Thai Binh Nguyen, who runs a hair salon in Saint-Eustache, underlines his daughter’s courage and resilience.

At the last report from Transplant Québec, 620 people were on the waiting list for a kidney transplant. “We cannot overemphasize the fact of signing your organ donation card,” says Dr. Benoit, nephrologist at the CHU Sainte-Justine.

Disease in numbers

◆ ANCA (Anti-neutrophil cytoplasmic antibodies) vasculitis is a disease that attacks the immune system and causes, without warning, blood vessel and kidney damage.

◆ The disease affects one in 50,000 people.

◆ Rare in young people, the disease is mainly seen in people between 65 and 74 years old.

◆ There is no treatment to cure it, but medication can reduce its effects.

Source: ancavasculitisnews.com/what-is-anca-vasculitis/


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