Gift of life
‘There is life after transplant’
Jessica Leyte has been the beneficiary of the gift of life twice in the past few years — first when she was the recipient of a liver transplant and again when she gave birth to a healthy baby girl.
And, as she sat on a fluffy rug in her daughter’s nursery while feeding her a bottle, Leyte admitted feeling a bit sheepish calling the latter the best thing that ever happened to her, acknowledging that it wouldn’t have happened without the former.
“I feel Violet kind of goes to show the circle of life and what can come out of donation,” Leyte said.
“It’s the best thing that ever happened to me. I say that and there’s a little guilt there because transplant is so important, but she’s just such a miracle.”
The Sydney resident was diagnosed with rheumatoid arthritis as a baby. She went into remission until her high school years, when she began suffering severe pain. Just after she turned 20, seven years ago, Leyte was also diagnosed with Crohn’s disease and primary sclerosing cholangitis (PSC), a rare liver disease. Leyte knows only of one other person in Cape Breton diagnosed with PSC and as a result she said there was a lack of support from people who understood what the illness entails.
“I struggled mostly with the PSC,” Leyte said. “I was extremely itchy … I used to bathe in ice-cold Javex, I couldn’t get any relief because the bile is in your blood.”
Saying she had virtually “no quality of life,” the following year she was listed for a liver transplant. After seven weeks on the transplant list, Leyte received the call that an organ was available for her and she underwent a 16-hour transplant surgery.
“I feel like, at my age, it was the hardest part, you couldn’t make plans,” she said. “It was a learning curve because I felt I had my independence and then I lost some of it because I needed help, I needed to be virtually taken care of, I guess, post-transplant.”
Leyte dealt with two organ rejections — with the first she came close to being relisted for transplant but fortunately she didn’t require it, instead they were managed with hospitalization and medication.
“I rushed things, I wanted to get back to normal life, I guess, but when you have chronic illness it’s not that easy,” she said.
It’s only really possible to understand what it’s like to live with a donated organ if you or someone close to you has experienced it, Leyte believes.
“One time I was told by my doctor, ‘You received a gift not a debt,’ and that really hits home for me and I have to remind myself that often,” she said.
“When you’re waiting for a transplant you think that this monumental day is going to come and everything is going to be better but I had no idea, I was just starting a new posttransplant journey, which is just as hard and it’s overwhelming.”
And, as her health improved post-transplant, she admits she also had difficulty making the adjustment from having a “sick girl” mindset, saying she suddenly had to create a new identity for herself.
After three years without requiring any hospitalization, she and her partner Mark Tighe bought their home last year and the time was right to start their family.
“I felt as healthy as I had my whole life,” Leyte said. “With organ transplant, there’s so many unknowns, you don’t know what’s going to happen.
“You don’t know what’s down the road and I was so healthy and I had doctors’ OK. I felt like my whole life, that’s all I wanted … it’s always been being a mom.”
Leyte did not have an easy pregnancy. In utero, the baby at first developed slowly and at eight weeks Leyte began travelling to the IWK-Grace Health Centre in Halifax every three weeks to track her growth. Leyte also dealt with kidney stones and preeclampsia. Due on Valentine’s Day, Violet arrived almost a month early on Jan. 15, at 34 weeks.
After a two-week stay in the neonatal intensive care unit, Violet was able to go home, healthy and happy. The now 14-week-old is small but thriving.
“Since then she’s been doing fabulous,” Leyte said. “She’s tiny. At three-and-a-half months she’s nine pounds, nine ounces. She’s our little Thumbelina, but at the same time she’s definitely healthy, she’s eating well, she sleeps like a dream. She actually is a dream baby.”
Leyte describes organ donation as being the essence of humanity because it involves doing something for someone and expecting absolutely nothing in return. She welcomes the growing discussion about requiring people to opt out of donation rather than the current practice in most jurisdictions of having potential donors opt in. Even if someone has signaled an intention to act as a donor by signing their health card — as 52 per cent of Nova Scotians have done — the final decision is actually made by their family members.
“I think people really need to realize the possibilities that come out of it,” Leyte said. “It’s not all critically ill patients that don’t have a life ahead of them, a family ahead of them. Sometimes people need to see that there is life after transplant, there’s life after critical illness. Everybody should be a donor.”
Nova Scotia has the highest deceased donation rate in the country, based on per million population. In 2014, there were 17 organ donors in Nova Scotia, 20 in 2015 and about 20 last year.
Leyte added that she hopes that if there is anyone else affected by primary sclerosing cholangitis they will reach out to her.
Jessica Leyte of Sydney has received two precious life-changing gifts — a liver transplant and her 14-week old daughter, Violet. She believes her daughter is a living demonstration of the legacy and importance of organ donation.
Jessica Leyte’s 14-week-old daughter, Violet, may be small for her age, but she’s healthy. Before Leyte received her liver transplant, she never thought becoming a mother would be possible.