BILLERICA — Haylee Reed is on the lookout for a hero.
At simply 25 years previous, Reed, of Billerica, is in liver failure. She joined the waitlist for a transplant in May, however she may wait years to succeed in the highest of that checklist.
Instead, Reed’s household is on the lookout for a residing donor, somebody who may donate 60% of their liver in order that Reed can survive. Amy Varrell, Reed’s aunt, runs Haylee’s Hero, an internet site devoted to discovering Reed a possible match, asking guests, “Are you Haylee’s hero?”
Several relations, herself included, have tried unsuccessfully to change into donors, Varrell stated, so now, they’re increasing their search.
“You don’t have to be dead to be an organ donor,” Varrell stated. “A very important part of organ donation is those donors that are living donors. People say, ‘Oh, I’m going to be an organ donor’ or whatever, but then they put it on their driver’s license, and then don’t think about it again. But there are certainly a lot of things that can be accomplished in saving lives of people even when you’re alive.”
Reed has cystic fibrosis, that means her well being journey has had its ups and downs. But her signs rapidly worsened final November, and all through January and February, her well being continued to say no.
Her situation compelled her to go away her job as a payroll administrator at ALKU, and her high quality of life decreased considerably by July, Varrell stated, prompting her household to attach with Mass General Brigham Liver Transplant Program coordinators to find a residing donor who may higher Reed’s probabilities.
“The treatments that she’s getting are providing temporary relief, but not,” Varrell stated.
Haylee’s sister, Jenna Reed, 21, has additionally battled cystic fibrosis all through her life, coping with the numerous challenges the sickness poses. CF is “a disease of the unknown,” Jenna stated, including that she by no means is aware of how her physique would react to a light illness from which most individuals can rapidly recuperate.
It’s been tough watching her sister endure this, she stated, particularly not figuring out what’s going to occur subsequent.
“Luckily, Haylee and I have both been very fortunate throughout our whole lives, and we’ve both been pretty healthy. Haylee always just has to take the one-up,” Jenna stated with fun.
The liver donor waitlist relies on sufferers’ MELD rating, or mannequin for end-stage liver illness, a 6-40 level scale that’s calculated utilizing a variety of totally different lab values. The larger the quantity, the extra pressing the affected person wants that transplant, stated Delia Kirgizboeva, a recipient coordinator at Mass General.
The median MELD rating of MGH sufferers receiving transplants over the past six months is 31, Kirgizboeva stated, whereas Haylee’s rating fluctuates between 12 and 18.
But MELD overlooks many components that play into folks’s liver well being, Kirgizboeva added, equivalent to abdomen fluid or bleeding points.
“Because her MELD score is not that high, her chances of getting organs with that score are very slim, almost none,” Kirgizboeva stated. “Unfortunately, the MELD score does not take into consideration everything else that can be caused by liver disease.”
Finding an appropriate donor can also be fairly tough, involving intensive blood work and cardiac work-ups, imaging like CT scans and MRIs, liver biopsies and psychosocial evaluations. And all potential donors will need to have Type O blood, like Haylee.
“If they’re willing to donate, we urge everyone to come forward and talk to coordinators,” Kirgizboeva stated. “If we don’t get any live donors for patients like Haylee with lower scores who are very sick and in and out of the hospital all the time, those patients, unfortunately, this will be their new normal, living with this for the rest of their lives.”
Haylee was recovering from pneumonia however was not too long ago readmitted to the hospital with a relapse, Jenna stated. Haylee’s “spirits are high,” she stated, and the assist from family and friends has made all of the distinction.
To unfold the phrase and probably discover a donor, Jenna took to TikTookay, the place movies of her sister’s determined scenario have garnered simply over 7,000 views.
From beginning a household fundraiser bike experience — now in its twenty fifth yr — to watching Haylee change into a “motivational speaker” for different households coping with CF, Varrell has nothing however phrases of reward for her niece.
“It’s hard for me not to boast about her because I’m so, so proud of her,” Varrell stated. “She’s this amazing, caring and generous person, and I think that her smile is infectious, and she just knows how to light up a room.”
Haylee is all the time one to face up for what she believes in, Jenna stated, so it’s their flip to do the identical for her.
“Think of the most important person in your life, and then think of not having them,” Jenna stated. “Haylee is obviously the most important person in my life, and I know that I myself cannot donate a liver, but I will do everything in my power to get her a liver donor.”
Source: www.bostonherald.com”