For those waiting for an organ transplant, every single day matters. There are currently about 119,000 people in the United States on the registry waiting for an organ. Men and women of all ages, religions, races and socioeconomic statuses can only sit and wait for the call that will save their lives. No one can know how long they might remain on the list or when a suitable match will be available. The wait can be deadly.
According to Donatelife.org, 22 people die every day waiting for an organ, and a new person is added to the list every 10 minutes. But, there is a glimmer of hope. In 2016 a record 33,600 transplants were done in the United States alone. The number of people signing up to be donors is increasing — there has been a 20 percent increase in the number of transplants over the past five years. With more awareness, hopefully that number will continue to climb. While that is good news, the need for organs to transplant always grows at a faster rate than those being donated.
How does organ donation work?
Organ donation goes beyond a simple symbol on your driver’s license. There are two types of donors — living donors and deceased donors. A living donor can donate organs (or parts of organs) that the donor can live a long and fruitful life without. A kidney and parts of the liver and lungs can all be donated by living donors. Family members are oftentimes living donors. However, a donor does not need to be a family member. When in need, a living donor will be “matched” with a recipient based on blood type. All living donors must be at least 18 years old and must be tested for any diseases or health conditions that would prevent a successful transplant.
Jennifer Frederick, RN, BS, CCTC, the thoracic donor coordinator for UF Health, explained that there are actually two different kinds of deceased donors. The first is when blood no longer flows to the patient’s brain and there is no brain activity. Frederick explained that this type of donor is eligible for all kinds of donation. After the patient is declared brain dead, doctors will use medications, replace electrolytes and maintain a normal blood pressure to keep the donor’s organs viable. The other type of deceased donor is a donor after cardiac death. This is when the patient’s family, after two physicians have declared that he or she will not recover from a devastating injury, elects to withdraw care. In this case, not all organs may be eligible for donation due to lack of oxygenated blood flow once the heart has stopped beating. Once the machines have been turned off, the team only has one hour to remove the organs before they begin to deteriorate. In both instances the family of the donor and an organ procurement coordinator work together under specific timelines to ensure the organs remain viable for transplant. Organs can stay preserved outside of the body anywhere from 36 hours (kidneys) to six hours (heart/lung).
The entire transplantation team is specially trained and has the utmost care and respect for the donor. In many instances special readings and/or moments of silence are observed at the wishes of the donor’s family. Being an organ donor does not affect final arrangements or funeral plans.
Matching is a big word for anyone needing a transplant. The United Network for Organ Sharing is the registry used by transplant hospitals to generate a ranked list of transplant candidates, or “matches,” based on blood type, tissue type, medical urgency, waiting time, expected benefit, geography and other medical criteria. Since organs are time sensitive, the country is divided into 11 regions, with Florida being in region 3. Although organs are received from and sent outside of regions if necessary, the closer the organ is, the better the chance for a positive transplant outcome.
Who does transplantation benefit?
Those receiving lifesaving organ transplants have been given a second chance at life. Those with lifelong diseases are able to lead fuller lives than they did prior to surgery. Frederick said many of her patients have told her that after receiving their new organ they were able to do things they never could before and were in the best shape of their lives!
Kathy Patrick is one such transplant recipient. She was diagnosed with pulmonary fibrosis in 2007 and the only cure was a double lung transplant. Although she was placed on the transplant list in 2008, it was not until March 9, 2012 that she got the call telling her it was finally her turn. At that time she was very sick, on 32 liters of oxygen with tanks and cannulas accompanying her from the bed to a scooter to a chair and back. Her family was told she had only days left to live; she had almost given up and signed for hospice care. That was almost five years ago. She just celebrated 47 years of marriage and has gotten to spend time with her grandchildren.
“Without my donor and her family, I know I wouldn’t be here. Every moment I had for the past five years is because of her gift,” she said.
Patrick feels the best way she can give back is to be involved with support groups for people waiting for organs and for those who have received them. She never leaves the house without wearing her pin that states “My lung transplant gave me a second chance to live, be an organ donor.” She hopes that by sharing her story she might inspire others to consider donation. “Not a day goes by that I don’t think of and pray for my donor’s family. My transplant gave me a second chance to live.”
How to donate
The hard truth is that a tragic accident could happen at any time to any one of us, and we could become a potential organ donor. Frederick said the most important thing is to register with DonateLife. Once you’ve registered, you can sign in to edit your account at any time and specify what you want or do not want to be donated. “It’s a very personal decision,” she said. “There is no right or wrong, anything you are willing to donate is commendable.”
TIP: If you have an iPhone, you can quickly register through DonateLife under the Medical ID app.
She also stressed the importance of discussing organ donation plans with your family and next of kin. Ultimately being on the registry will give the first consent for organ donation, but your family must still give their consent. An organ procurement organization will be there to walk your family through the process, but it is important they know your wishes ahead of time.
Patient Life Post-Transplant
Post-transplant patients always fear rejection and must remain on immunosuppressant medications for the rest of their lives to help prevent this scenario. They also must take precautions against acquiring new diseases and have to avoid things such as live vaccines and raw foods. Re-transplantation of the same patient is rare due to the long waiting lists. Prior to being placed on a transplant list patients must go through several series of screening and tests to ensure they meet criteria for transplant. Those criteria carry from center to center, but include things such as being cancer free, smoke free and in otherwise good health.
CONSIDERING BECOMING A DONOR? HERE’S A FEW FAST FACTS TO KNOW.
■ A person of any age can be a donor.
■ Financial or celebrity status does NOT affect where you are on the transplant list.
■ It costs approximately half a million dollars for a double lung transplant, which most insurance companies cover.
■ 82 percent of patients waiting for an organ are waiting for a kidney.
■ Organ donation is permitted by major religions, including Christianity, Islam, Judaism, Hinduism, Buddhism, Mormons and Jehovah’s Witnesses.
■ You can donate your heart, lungs, liver, kidneys, pancreas, corneas, tissue (including skin, bones, valves and veins) and/or intestines.
■ According to DonateLife.com, vascularized composite allografts (VCAs) are transplants that involve multiple structures that may include skin, bone, muscles, blood vessels, nerves and connective tissue. They are most commonly used for face and hand transplants.
■ At no time prior to a time of death being called and confirmed by two physicians is the donation status of a person discussed. Saving the patient’s life is always the first priority!
■ The family of the donor is not responsible for any costs associated with the organ donation itself.