To see and hear Myrna and Jerianne in a TV news interview click image above.                                  Jerianne on left. Myrna on right.

The Dilemma

Story by Michelle Wexler
for Medical ID Fashions
ALBANY, NY — While traveling the vast highways of New York, among the endless stream of commuters, New Yorkers expect to hear their GPS say: “you have reached your destination”. But for Myrna Bernstein, struggling to find a kidney donor, she found herself a long, long way from her destination. For her, finding a lifesaving donor—let alone getting the attention from even one of those faceless commuters—was nearly impossible.

In fact, according to the American Journal of Transplantation, organ donation rates in New York are the 3rd lowest in the country, leaving more than 10,000 men, women, and children on the transplant list alone. Nationwide it doesn’t get any better with 123,000 waiting, leaving 21 souls to die everyday—indicating an obvious discrepancy in the supply of willing donors.

Months, and very often, years can go by before people on the Organ Transplant List are called. Once her kidney function fell below 10%, Myrna was placed on that very same list—a seemingly endless one. That, unfortunately, was the easy part. Being placed on a list that long, she may as well have been in the purgatory of transplant surgery—eligible for the procedure, but with no potential kidney in sight.

Luckily, most New York commuters have their driver’s license though, which left but a glimmer of hope. This meant the majority of people have at least heard “organ donation” muttered in their local DMV. So Myrna decided to reach out to that elusive NY crowd on their busy commutes, with a plea to extend her life, on a creatively unexpected billboard.

The "Ah-Ha" Moment

This came to her while driving without even knowing whether it could be done or not. “When people see a real person in need of a kidney donor, I think it personalizes it,” she explained. Her ambitions were plain and simple: “I was doing something to save my life.” It wasn’t long before social media picked up on Myrna’s billboard, her only weapon to battle the odds against her. That post, and the “shares” that followed, was all it took for an old friend to land back to her doorstep, Jerianne Green.
 
What set Jerianne apart from other individuals who reached out to Myrna, was the sense of responsibility Jerianne took on once she discovered she was an organ match for her. Electing to voluntarily undergo surgery can be the most daunting part of becoming a living organ donor, but newer technology makes donating a relatively minor procedure. 

Easier Donor Surgery

Today, many hospitals do donor transplant surgery with a less invasive method that significantly lowers the chance of complications: laparoscopically, with small incisions away from vital organs. As Jerianne described it, “I knew that undergoing the surgery would be a risk, although I felt it was a calculated one with a high rate of success.”

The Uncertainty

Unfortunately, sometimes it is not the surgery, but the uncertainty surrounding organ donation which prevents people from signing up to be one. A persistent myth, held by much of the population, is that paramedics will not try as hard to save you if you are an organ donor. Of course, saving your life is always considered above all else by any emergency responder. See more about Donor Myths on the right. 
 
When asked what she would change surrounding “organ donation taboos”, Myrna said, “We need to get people talking about it. Of course we’re all afraid of talking about death, but it needs to happen [because] unless it has affected you directly, most people do not think about it.” The low rate of donors for the 10,000 person transplant list for NYC alone speaks to the magnitude of this crisis. We all need the courage to have a conversation with our families about organ donation. It may lead to saving someone’s life.

The Surgical Process

Understanding how the process unfolds for a kidney donation or transplant helps alleviate many misconceptions. That’s why expert coaching for the donor and recipient is available such as knowing that accommodations, or transplant suites, are typically within or near the hospital itself where both can stay prior to and following surgery. This avoids some of the in-hospital pressures that often build-up. In this way family and friends have a more friendly environment where they can calmly lend moral support to each patient.
 
For the Myrna and Jerianne, it was comforting to know they each had their own dedicated team of specialized doctors for their emotional and medical care—before, during and after. In this way, both donor and recipient can expect the best outcome.
 
Depending on the hospital and insurance, transplant surgery may not impose significant costs on the donor, nor are they required to go through with the surgery even if that decision came on the surgical table. “Knowing I always had the option to back out of the surgery was something that did put my mind at ease, despite also knowing I would not do that,” Jerianne had mentioned.

Life Goes On...

Immediately after the surgery, Myrna’s exposure to the public was limited being on immunosuppressant drugs. With this issue stabilizing, she is now finding ways to become an advocate for organ donation through the Center for Donation and Transplantation. Their goal is to promote awareness, educate the public, and increase donor registration.
 
Both Jerianne and Myrna have remained in contact and found a higher purpose from their reconnection. “It has given me a peace of mind and a commitment to take care of this kidney because of [Jerianne], considering what she sacrificed.” As for Jerianne, life after surgery has returned to normal and when questioned about whether she would do it all over again? “Absolutely, yes,” was her confident answer. 
 
Although her life is now moving in new directions, Myrna is hoping to get back to some of her pre-transplant pursuits such as volunteering at a soup kitchen for the Catholic Charities, helping at a hospital gift shop and even performing in some local theater productions. She admits that she cannot take on too much, often feeling “overwhelmed” and “anxious”, saying: “I have discovered that the patient must have patience with themselves!”
 
If you need more information about donating or receiving a kidney, please go to the resources area on the right. For more on kidney disease management see American Association for Kidney Patients. These are great resources for all things kidney and transplant related.


Myrna's Bracelet: Vita Robusta 1974

Dispelling the Myths about Organ Donation

Many people have misconceptions and fears about donating their kidneys. Here is a list of answers to common concerns that many people have.
• Emergency people will always save your life first even if your license says you’re an organ donor
• Identities of donors are always kept secret
• You or your family do not bear any costs of donation
• Once you sign a legal donor card, no one can change your wishes
• You can specify which organ(s) you want to donate 
• Very few illnesses disqualify people from donating
• Donating an organ will not disfigure and prevent an “open casket” funeral
• If you authorize family members, they can donate for you
• No major religion denies organ donations
• The rich and famous do not get preference on donor lists. What that matters are your physical characteristics and time on list.
• Being in a “coma” is not considered “brain dead”. Only after extensive tests will brain death be declared.
• You’re never too old to register
• Multiple medical requirements, restrictions, rules and laws make black market donations virtually impossible if not illegal

Where to Go for Help

If you or someone you know is considering organ donation, or would like more information check out the resources below.
 
- UNOS (United Network for Organ Donation) is the private non-profit organization that manages the nation's organ transplant system under contract with the federal government
- Organ transplant policies
- How organs are matched
- Facts about organ donation

2. www.aakp.org
- American Association of Kidney Patients
- Improve the quality of life
- Patient centered education
- Fostering of patient communities
- Advocacy of legislative reform
 
- National Kidney Foundation
- Prevention of kidney disease
- Information regarding kidney disease
- Patient education
- Information on organ donation and transplantation
- Nutrition and diet
- Advocacy
 
- National Kidney Registry
- Improves lives of people facing kidney failure by increasing the quality, speed and number of living donor transplants
- Is the largest paired kidney donor exchange program in the US
 
- Living Kidney Donor Network
- Developed the first national campaign to educate public about need for living kidney donors
- Assists recipients in development of their public campaigns to find a kidney donor

Protect your kidney with a medical bracelet

It's important to wear a medical id bracelet if you are a donor or recipient. To get more helpful information click here.
Paramedics and doctors need to know that you only have one kidney as a donor. If you're a recipient, they need to know that you're on anti-rejection meds which may affect your emergency treatment. And don't forget to add any other medical condition you may have.