ONE8FIFTY: Gift of Life
April is National Donate Life Month, featuring an entire month of local, regional and national activities to help encourage Americans to register as organ, eye, and tissue donors and to celebrate those that have saved lives through the gift of donation. We recently spoke with Thomas Jasinski Jr., founder and executive director of ONE8FIFTY.org about his organization, and his own organ donation story.
How did you get involved with organ donor activism and advocacy?
In September of 2010, I was diagnosed with end-stage renal failure, which put me on dialysis. Through additional testing, we found out that the only remedy for that would be a kidney transplant. While being worked up continuously to be validated as a potential recipient, my wife and I were doing research and found out that New York State was then not only last in the nation as far as percentage of population registered to be donors, but it was below Guam and slightly ahead of Puerto Rico. That had a direct impact on my ability to secure a kidney via the traditional route of being on the transplant donor list and waiting for a cadaveric, or deceased, kidney to come my way.
We were told that, due to the limited registration in New York State, my wait would have been seven to ten years. We knew that mortality starts at year three or four of dialysis. It definitely has a huge impact. We were blindsided by that and decided to take actions to increase the odds for myself at that particular point in time and for future people pending organ transplant.
The dynamic that’s important for people to understand is, although the recipient always receives the best possible match, the preference in the transplant community is that organs come locally, regionally, and then nationally, predominantly because of the time factor involved, depending on what organ you need. Luckily, with kidneys, the timeframe is extended. It can be as far out as thirty-six to forty-eight hours, though there’s been additional trauma to the organ waiting that long. But, if you’re talking about somebody who needs a heart or lungs, you’re talking about three to five hours, max.
At any given moment in time, there’s about 9,500 New York State residents waiting for organ transplant. The impact is, 500 of those people absolutely will die within one year, because the organs they need are not available. An equal number will have become too ill while waiting to remain being viable transplant patients.
In light of all that information, quite candidly, it scared the hell out of us. We wanted to make sure the opportunity was greater for people who came after me.
You ended up getting a kidney from a living donor.
From my wife’s cousin, yes. We were very fortunate in that regard. I had not had a long or detailed relationship with him; I’d met him briefly at family events. At his wedding, I shook his hand, congratulated him, gave him the card and said, “I’m heading to the bar.” Four or five years later, he’s giving me his kidney. It’s a pretty amazing story.
As crazy as times are right now, it was incredibly encouraging at that point in time and even now, the altruism that really exists. There are kind, caring, considerate people who do things just because it’s the right thing to do and not for their own gratification.
That’s a generous gift.
Tell me about the meaning behind ONE8FIFTY.
I joke around that it was harder naming this organization than it was naming my kids. From a marketing perspective, you can understand—you want to create curiosity: what is that? What does it mean? One-eight-fifty means one donor can provide up to eight lifesaving organs for transplant and impact at least fifty other people through tissue donation.
People do not commonly recognize that, under the umbrella of transplant, all these other things fall into place. At speaking engagements, I’ll commonly ask how many people are athletes, who’s had knee injuries, how many people have had to have ligament or tendon surgeries on their knees. These things come from deceased people, cadaveric donors.
And corneas. My wife and I have talked to volumes of donor families whose loved ones passed away from horrendous cancers and, almost invariably, they’ve been able to use their corneas to give people the ability to see again.
Human heart valves. Skin grafts. Cartilage for reconstructive surgery. There are so many things that the medical and scientific communities have been able to enhance or adapt in order to create more stable lives for people in need. That includes blood donation and bone marrow.
Many people want to be part of organ donation. How can people be sure that they are actually organ donors and that their wishes will be honored?
About a decade ago, New York used to be a state of intent. Since that time, New York has become a state of consent. In the intent mode, people may have registered to be donors. Their family, friends, doctors may not have been aware of their wishes and there was bound to be a point of contention at their demise with comments from their family or survivors saying, “I don’t remember our loved one saying they wanted to be an organ donor.” There was an issue with that. Now, generally speaking, because the vast majority of people register via the Department of Motor Vehicles—there will be a heart on the front of your driver’s license indicating you’re a donor. There are other platforms in your medical records when you go to the hospital that signal on your intake that you’re registered as an organ donor.
At ONE8FIFTY, we have a registration platform that’s through Donate Life of America, where anybody in the country can register to be an organ donor. And we are the only organization, to the best of my knowledge, to offer the ability to register via text by texting “register” to 57838. People can also go to ONE8FIFTY.org. You can also go online to the DMV or the health department to join the organ donor registration.
No matter what your wishes are, you should communicate that with your family. One of the missions of ONE8FIFTY is alleviating the stress at point of death on your family. Making sure you have that conversation and loved ones are aware of your wishes and giving them the courtesy of not putting additional pressure on them at terrible point in their lives is important.
What happens after a donation is made? Does the family know where their loved one’s organs or tissue were donated? Is it too complicated to let them know?
No, not at all. For some donor families, it’s very emotional and they say they don’t want to know. For other families, they approach at a later point and say they’re now comfortable to know what’s going on. While other families want to know instantaneously—that’s almost invariably the case when young adults or children pass away. The donor families want that comfort and emotional assurance that their loved one didn’t die in vain. The impact their donations have is overwhelming. There are bonds made between these families that are astronomical. Some of these recipients have become extended family to these donor families.
What do you wish people knew about organ donation?
The majority of the population have misconceptions about organ donation: I’m too old. I’m too young. I’m too fat. I have all these health issues. At the point of demise, there are two particular things in play. First, it is a brain-dead death occurrence that triggers the inquiry for organ donation. Second, the determination on what can or cannot be used is made by a team doctors at the hospital at the point of the person’s demise. There’s not a categoric decision that you’re too old or too young—there are varying degrees on what can be used. For instance, a few years ago, there was a ninety-two year old gentleman who was in relatively good health and they were able to use his liver for a transplant for a sixty-eight-year-old grandmother.
It’s important to know that a living donation is also a viable option and an important consideration for people waiting for organ transplants. Kidney, partial lung, liver, and partial pancreas, as well as bone marrow, are now commonly accepted living donations.
Register to be an organ donor via text by texting “register” to 57838, visiting www.one8fifty.org, or email firstname.lastname@example.org.
Wendy Guild Swearingen is editor of Forever Young.