SPECIAL REPORT: Life on the Waitlist
Corning, N.Y. (WENY) - Quinn Hale is an 18 year-old Senior at Corning-Painted Post High School who is living with Cystic Fibrosis, and is in need of a life saving organ replacement.
Quinn says, "I was diagnosed at 2 and a half with Cystic Fibrosis and basically it's a chronic lung disease. So like really thick, sticky mucus kind of traps my air ways and the older I get the more, I guess, aggressive it becomes."
Quinn says the disease causes a ripple effect. The more her lungs deteriorate, other ailments begin to stack on to each other.
For Quinn, this has resulted in both Diabetes and Liver Disease. Quinn is on 24/7 oxygen and uses a feeding tube to supplement calories. She says, "I don't have very much independence because if anything were to happen, I wouldn't be able to help myself. I do hours of treatment, hours of therapies, pills, lots of doctors appointments, lots of phone calls."
Quinn is in need of both a double lung and liver replacement. Despite this, she maintains a positive attitude and is open about her experiences, sharing them on her Facebook page "Quinn's Lung Journey". She says, "I think it's important for people to know that even though I'm doing all of this stuff and I have to work really hard to keep my body the way it is, that I'm still normal. I'm still an 18 year old girl. I have boy problems, and I still go through school. This is my last semester of high school so I'm freaking out too."
Though Quinn is enrolled at Corning Painted-Post High School, she does not physically attend the school. She says, "I'm technically enrolled at CPP, but I have a teacher come to my house."
Quinn has felt an outpouring of support from the Corning community. She says, "It's crazy. I have no words to describe how good it feels. It's great knowing that I have a team of friends and family behind me that really are looking for me to succeed."
Quinn's situation draws attention to a statewide issue. Enrollment and donor rates for the State of New York's Organ Registry are among the worst in the country. New York State Assemblyman Phil Palmesano says, "When I looked at the numbers, I was kind of blown away."
Palmesano has a personal connection to Organ Donation. He donated his kidney to his sister before she passed away from complications with juvenile diabetes. Palmesano says, "My sister was lucky. She was fortunate to have 2 kidney transplants. Some aren't so lucky. If you look at the statistics in New York right now, we have nearly 10,000 New Yorkers on the waiting list waiting for a transplant. 1,500 have been waiting for more than 5 years. There are 52 registries across the country. New York is rated 51 out of 52, we're only ahead of Puerto Rico."
Quinn has experienced the deficiencies of the New York Organ Donation Registry first hand. She says, "I actually went to New York for my initial transplant evaluation and I was denied because I am too sick, or was too sick."
Quinn says she was denied due to her low liver function. She then sought treatment out of state, and found a place where her family felt comfortable at the Cleveland Clinic, undergoing numerous tests with a team of medical professionals.
In January, Quinn learned she was officially active on the Ohio Transplant list. She says, "I got a call from my mom and she was crying so of course I was like freaking out. My mom doesn't cry at all and she told me, I started bawling, my grandma started bawling, my nurse started bawling. Everyone was like, this is crazy. It could happen 12 minutes from now, it could happen 2 years from now but I've done all this work and now I'm there."
Dr.Matthew Novak, a Nephrologist at Robert Packer hospital who also deals with patients in need of organ transplants, discussed the possibility of using two separate donors for patients who need multiple organs. He says, "Preferentially it would all come from the same donor. The reason for that is if you have two different people's organs in the body, and this does happen that occasionally you do have organs from different people specifically in kidney and pancreas transplants, you have different chances of rejecting because it is two different people's organs whereas if you have one person's organs completely in you the chances of rejecting separately are very low."
Meanwhile, there is still plenty of work to be done in the state of New York. The state has made improvements to its registry, now offering online enrollment, taking just minutes. To register to be an organ donor in the state of New York, click here. Just fill out your information, answer a few personal questions, and just like that, you are all signed up.
Another legislative action the state has taken is they now allow people 16 years and 17 years of age to sign up to become organ donors, becoming the 49th state to do so.
In regards to signing up Quinn says, "It really will change tons of peoples lives, not only just that one and one person can save up to 8 people. So really you're doing a world of good for a bunch of people."
Palmesano adds, "Think of one of your loved ones. Your son, your daughter, your mother, your father, your brother or sister were in need of a life saving organ transplant and you lived in New York and then you see these statistics. They're kind of scary.They're kind of frustrating and we can do better."
As Quinn continues to live her life on the waitlist, she offers a bit of advice we can all take to heart. She says, "That a bad day only lasts 24 hours. You can get through that."
To register to be an organ donor in the state of New York, click here.
Here are some statistics about organ donation from "Donate Life New York State":