Gift of life

‘There is life af­ter trans­plant’

Cape Breton Post - - Front Page - BY NANCY KING

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.

NANCY KING/CAPE BRE­TON POST

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.

NANCY KING/CAPE BRE­TON POST

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.

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