Understanding Organ Donation

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Posted on Wednesday, July 12th, 2023 at 10:01 pm    

What is organ donation?

Organ donation is the process through which a person gives permission for one of their organs, such as the liver, heart, or lungs, to be removed from their body and transplanted into another person. This can happen after the donor has died or while they are still alive (as in the case of some kidney transplants).

Through the organ donation system in the US, individuals can give permission for their organs to be donated after death, or permission can be granted by their representative or next of kin. Donating organs can have an extraordinary impact on the well-being of others—the organs of a single donor can save up to eight lives.

What is tissue donation?

Tissue donation is similar to organ donation in that a part of the donor’s body is transplanted into a living person. Instead of organs like the heart or lungs, tissue donation involves body parts like skin, bone, cornea, and heart valves. These tissues are used in various treatments, including reconstructive surgery, wound and burn recovery, and procedures to restore sight. The donated tissue from a single donor can help up to 75 other people live better, healthier lives.

What can I donate?

Thanks to advances in medical technology over the last century, it is currently possible to transplant various organs and tissues from living and deceased donors. The first successful organ transplant, in which a donor’s kidney was transplanted to his twin brother, took place in 1954. Other organ transplants were developed and performed over the next several decades, and in 1983, the first drug that effectively treated organ rejection was introduced. As of 2023, the success rates for lung, heart, kidney, and liver transplants were 87%.

Most organ donors in the US are matched to recipients via state and national waiting lists. However, there is a significant and ongoing donor shortage—as of May 2023, there are more than 104,000 people on the national transplant waiting list. More than 85% of patients are waiting for a kidney. Every day in the U.S., an average of 17 people die waiting for a transplant.

Types of organ donation

There are several different types of organ donation:

Deceased donation, or donation upon the donor’s death. This is the most common form of organ transplant and can be authorized by the individual before their death or by their next of kin or representative after passing. Individuals of any age can become deceased organ donors.

Living donation, or donation of an organ or part of an organ while the donor is alive. Living donation has been developed due to the donor shortage and is most commonly used with kidney transplants. These donations are usually “directed,” which means the living donor chooses who gets their organ (often someone related to them). However, it can also be “non-directed,” in which the living donor is matched with someone medically compatible on the waiting list.

Birth tissue donation. This is the donation of gestational tissue, including placenta and amniotic fluid, after the delivery of a baby. These tissues can be used in reconstructive surgeries, as well as in burn and wound care. The donation does not impact the health of the donor or the baby.

Vascularized Composite Allograft (VCA) donations. A relatively recent field, VCA donation involves transplanting multiple complex structures like hands and faces. VCA requires specific authorization by the donor and is not included in regular organ donor registration.

A 2016 graphic published by the White House to encourage organ donation. Photograph courtesy of the White House Archives.

Organ donation in Illinois

Illinois has one of the most successful state registries, with over 7.5 million people signed up as organ and tissue donors as of January 2023.

In January 2006, the First Person Consent law was enacted in Illinois. This law states that individuals over 18 years old who sign up to be organ donors through the registry have given their legal consent. As a result, family permission is no longer required for organ donation—the individual’s decision while alive to become an organ and tissue donor is considered legally binding.

By August of 2006, the First Person Consent registry had reached one million participants; by the end of 2007, it had surpassed 2.5 million. In 2018, Secretary of State Jesse White introduced legislation that allowed 16- and 17-year-olds to join the Illinois Donor Registry. By the end of 2018, more than 50,000 individuals under 18 had registered.

In 2019, J.B. Pritzker passed a law forbidding workplace or insurance retaliation for people who become living donors. From a legal perspective, this means that workplaces cannot retaliate against people who take a leave of absence to donate organs or tissues, and insurance companies cannot raise premiums as a result of the medical procedures of a living donor.

Personal story: Alan and Debbie

Alan Pritts has had a defibrillator for the past 15 years due to an underlying heart condition. While at his job at Mitsubishi Electric in October 2022, the defibrillator saved his life when he went into a dangerous arrhythmia.

Debbie, Alan, and their grandchild. Photograph provided by Debbie Pritts.

Because of his history of heart problems, Alan and his wife, Debbie, a registered nurse, were thankful for the defibrillator doing what it was implanted to do. They were busy preparing for their daughter’s wedding, and though they knew a transplant might be needed at some point in the future, “it was the farthest thing from our minds,” says Debbie.

Alan’s cardiologist offered a new treatment to improve his heart function. The procedure was done in December 2022, and though Alan had to take time off to recover, the couple was hopeful that the new device would provide improved heart function and a much lower chance of an arrhythmia.

The transplant waiting list

On a Saturday in late February, Alan’s watch alerted him that his heartbeat was irregular again. He had developed atrial fibrillation or “afib,” an abnormal heartbeat in the heart’s upper chambers. He informed Debbie, and they went to the hospital for what they thought would be a relatively simple cardioversion procedure. After examining his heart, the medical team realized he had had total heart failure. By Monday, the couple had been informed that Alan would need a heart transplant.

To receive an organ transplant, patients must undergo an intense series of tests and interviews called a workup. This process usually takes a few weeks, but because Alan had recently undergone several medical examinations, he cleared the workup in two days. He was officially added to the waiting list on March 7th.

Initially, the doctors discussed sending him home to wait for a transplant option, a standard procedure for patients with relatively stable conditions. But Alan’s health deteriorated rapidly in the hospital, and instead, he was moved into intensive care and underwent emergency surgery to install a pump in his heart. The couple met several other patients who were too ill to return home but were still awaiting news of a donated organ. Everyone they spoke to had been waiting for at least a month.

While leaving the hospital late, Debbie spoke with a security guard. After confiding that her husband had just been placed on the list for a heart transplant, he told her he had received a kidney transplant five years ago—and here he was, working double shifts. The conversation felt like a sign of hope in the uncertainty of waiting. “It was like a message sent to us that people can have normal lives after a transplant,” she says.

Waiting for an organ donor

Faith plays a large part in Debbie and Alan’s lives. As they waited in the hospital, they prayed for a heart to come through—and wrestled with the possibility of another family losing a loved one. “At the same time, you’re praying for a miracle. You know it means so much sadness for somebody else,” says Debbie. “And so, we prayed for them too—you’re praying for a miracle, but you’re waiting for somebody else’s grief, which is just unimaginable, really.”

The day after, the balloon pump they installed in Alan’s heart failed, so he underwent another emergency surgery to put in a Left Ventricular Assist Device (LVAD). Then, as Debbie describes it, a miracle happened. Two days later, the doctor left the hospital room after making daily rounds, did a U-turn, and came back in. He said, “I’m not going to punk you. We’ve got a heart for you. You all need to play the lottery because this just never happens.” The hospital sent a surgeon to examine the deceased organ donor. Then, on Saturday, March 11th, Debbie and Alan got word that the surgery was a go. At midnight on Sunday, March 12, Alan was taken to the operating room for his transplant. About five and a half hours later, the operation was complete.

Due to post-operative complications, Alan’s return home was delayed, but he could check out the hospital on March 29th. The recovery process is long and difficult, and the couple continues to be grateful that Debbie is a nurse and can help navigate both the hospital system and post-operative care.

Still, Alan has no doubt that it’s been worth it. On April 29th, the couple attended their daughter’s wedding. “I had a goal of walking my daughter down the aisle,” says Alan. “We met that goal.”

Alan was able to walk his daughter down the aisle at her wedding. Photograph provided by Debbie Pritts.

Debbie and Alan continue to think about the family of the individual who donated their heart. “I feel like it’s the greatest gift you can give somebody,” says Debbie. “If there’s no hope, there should be hope for another family. And somebody gave that to us.” The privacy requirements for contact between donor families and recipients are stringent, but Alan and Debbie plan to reach out through the transplantation organization once things have settled down. If the family wants to be contacted, the organization will allow them to receive the letter and respond.

The hope of organ donation

Alan hopes that knowledge of his life-saving transplant will help the donor’s family as they grieve their loved ones. “Not only are you remembering them, but now you have all these other people that person helped, who are going to remember them as someone really special,” he says. “We hold that person and their family very dear to us in our prayers. I think that’s the best message, to make a positive out of a negative.”

While there is still a long way to go in the recovery process, Alan has seen remarkable improvements. For now, he’s returning to the hospital every week for a check-up, but soon these appointments will shift to every other week, once every three months, then once every six months. He’s been given permission to drive for short trips (by his doctors and, more importantly, by his wife). Once he completes physical rehabilitation, he’s planning to return to work.

Alan and his grandson, whose shirt reads, "New Heart, Same Pap." Photograph provided by Debbie Pritts.

For Debbie, who has navigated the hospital system throughout her career, waiting for a transplant has been life-changing. “To take a moment of grief so deep and turn it into a positive thing, to help so many people—that person’s life made a difference,” she says.

She has always been a registered organ donor, but this experience has reinforced her belief in the importance of organ and tissue donation. “You honor somebody by remembering something good about them and doing good in return. This is just another way to add to that,” she says. “I hope to do that someday.”

A 1968 poster from the National Kidney Foundation encouraging organ donation. Photograph courtesy of the National Library of Medicine Digital Collections.

What really happens in an organ donation?

Many people are nervous about what actually happens in the organ transplant process, especially organ transplants after death. However, it is an efficient and compassionate process that occurs tens of thousands of times yearly. Within a few hours after the donor’s death, their donated organs or tissue will be transplanted into a waiting recipient like Alan and will help them live and thrive.

Donating organs and tissue is only considered after all efforts to save the patient have been exhausted, the absence of brain or brainstem activity has been confirmed, and brain death has been officially declared.

While the process of deceased organ donation varies from state to state, it generally follows the steps below:

  1. Doctors run tests to verify brain death. This means there is no brain activity. The body cannot breathe independently, and no chance of recovery. Brain death is confirmed, and the doctor notes the time of death for the deceased organ donor.
  2. At or near the time of death, the hospital informs their local Organ Procurement Organization (OPO) per federal requirements. An OPO agent travels to the hospital.
  3. The state registry and national registry are securely searched online. The doctor or OPO representative also reviews the individual’s driver’s license. If they are not registered as an organ donor, the medical team may ask the next of kin for approval for organ donation.
  4. If consent has been given for organ donation, a medical evaluation is conducted, gathering the individual’s medical and social history from the hospital and family.
  5. The OPO agent searches the Organ Procurement and Transplantation Network (OPTN), a national database of all patients waiting for transplants. Using information about the donor, they build a list of recipients who are the most medically compatible for the donor’s organs based on several criteria, including blood type, body size, medical urgency, and distance from the donor’s hospital. The transplant surgeon makes the final decision about who will receive the organs.
  6. The doctors check the condition of each donated organ and keep the organs on artificial support with machines that maintain oxygen flow.
  7. The transplant surgical team replaces the medical team that treated the donor before their death. These teams are always fully separate from one another to ensure the best possible care.
  8. The new surgical team removes the organs and tissues approved for donation. They then close any incisions. It is possible to donate organs, eyes, and tissue and still have an open-casket funeral.
  9. After the removal of the organs, time is of the essence. The OPO agent carefully plans transport, sending the organs directly to the recipients’ hospitals by ambulance, helicopter, or commercial airline.
  10. The transport team arrives at the hospital where the recipient is waiting—sometimes, already in the operating room. The surgical team conducts the transplant surgery, and the donated organ begins its new life in the recipient.

Brooke Army Medical Center nurse Laura Vaughn signs up for the donor registry. Photograph by Robert Sheilds.

Organ donation today

There is an ongoing shortage of donors in the US. In 2021, 6,000 people died while waiting for a transplant. There are currently more than 1,800 children under 18 waiting for transplants, and over a quarter of the children on the waiting list are younger than five. As of the end of April 2023, there are still nearly 4,000 people waiting for an organ or tissue transplant.

However, there are many hopeful signs. The number of organ transplants continues to increase, with a new record for total transplants set in 2022—the twelfth consecutive year that donations have increased. In 2022, 14,903 people became deceased donors, a 7.5% increase over 2021, and more than 6,000 lives were saved through transplants from living donors.

The number of transplants per year has steadily increased, from less than 15,000 in 1990 to more than 40,000 in 2022. Graph courtesy of the Organ Procurement & Transplantation network metrics dashboard.

Over the past 12 months in Illinois, 868 individuals became deceased donors, and 2,106 transplants were performed. And in 2022, the US reached the milestone of one million total organ transplants conducted: more than any other country in the world.

While the situation continues to improve, far more people are still waiting for organ transplants than donors. Doctors are constantly working to ensure the use of as many donated organs as possible, and as a result of clinical successes, the criteria for donation matches continue to broaden. Still, though, more donors are needed.

The number of donors recovered in Region 7 (North Dakota, South Dakota, Minnesota, Wisconsin, and Illinois) has continued to increase over recent decades. Graph courtesy of the Organ Procurement & Transplantation network metrics dashboard.

One of the biggest ongoing challenges in organ and tissue donation is compatibility—transplants are often more successful the more similar the donor is to the recipient. While organs and tissue can be successfully donated from someone who does not share the racial or ethnic background of the recipient, transplant success is often higher when this is the case, as specific genetic markers tend to be more common in racial or ethnic groups.

African Americans and Hispanics are overrepresented on waiting lists but underrepresented as potential donors. Due to a history of medical racism, individuals in these groups are less likely to trust the medical establishment. In a survey of African Americans in Ohio, respondents reported greater mistrust in their doctors’ prioritization of their lives and a widespread opinion that organs would only go to wealthy and famous people. This historic mistrust of the health system is well-founded, and organ donation is no exception: a 2003 study found that OPOs don’t prioritize the recovery of organs from Black patients. African-American families with a loved one in the hospital are less likely to be approached about organ donation and have less complete discussions about the possibility when they are.

Compounding this issue, medical conditions like kidney disease, often requiring organ transplants, are much more prevalent in people of color than in white people. Nationally, more than 60% of transplant candidates on the waitlist are part of minority groups. Several hypothesized causes exist for this disparity, including lack of access to health care and insurance and higher rates of risk factors like diabetes and high blood pressure.

These factors combined mean that receiving a successful organ transplant is much more difficult for people in minority groups. While encouraging individuals of every community to sign up as organ donors is important, the more significant issue is reforming the healthcare system in general and the organ donation process in particular. In 2020, the Department of Health and Human Services finalized reforms to address these disparities. While organ donation and civil rights organizations

Nationally, nearly a third of transplant candidates on the waiting list are part of minority groups. To increase the chances of those on the waiting list finding a successful match, the work that organ donation and civil rights organizations are doing to resolve these issues is critical.

Frequently asked questions

How much does organ donation cost?

There is no cost to the donor’s family or estate to donate organs or tissue.

How do they decide who gets the organ?

Criteria for recipient matching include blood type, body size, medical urgency, tissue type, time on the waiting list, and distance from the person donating. Demographics like race, income, age, gender, sexual orientation, celebrity, and citizenship are never considered.

Who can register to be an organ or tissue donor?

People of all ages, genders, races or ethnicities, and with any preexisting conditions should consider registering. Ultimately, the medical condition of the organs at the time of death will determine what can be donated. Still, the more people sign up to become organ donors, the more likely individuals on the waiting list will find a match.

I’m under 18 – can I donate?

Teenagers from 15 to 17 years of age can register their intent to donate, but the parent or guardian makes the final decision until they turn 18. Individuals of any age should consider registering as an organ donor.

I’m over 50 – can I donate?

There is no such thing as being too old to donate. A third of deceased donors nationally and 40% of organ donors in Illinois are over 50. The oldest organ donor to date was 95 years old and successfully donated a liver (and the oldest ever recipient received a cornea at the age of 107). People of any age, including newborns and older adults, can successfully donate.

I have a chronic disease or health condition – can I donate?

Individuals with preexisting conditions or diseases are often still eligible to donate. The state of the organs and tissues at the time of death will ultimately determine eligibility. Since 2015, the HIV Organ Policy Equity (HOPE) Act has provided options for people with HIV. Sexual orientation is not taken into account when someone becomes an organ donor.

Bottom line: There are not enough donors in Illinois or the US. Everyone interested in signing up to become an organ donor is strongly encouraged to register.

Will being a registered donor affect the quality of medical care I receive?

Your status as an organ donor will never change the care you receive—the patient’s life always comes first. The organ transplant team is always fully separate from the team working to save your life to ensure the best possible care.

How do I know if I’m registered as an organ donor?

If you’re unsure whether you’ve already become an organ donor, there are a few ways to check. The easiest way is to look on your Illinois driver’s license for the red state outline with white text that reads “DONOR.” This confirms you have signed up with the state to donate your organs and tissue.

You can also check to see if you’ve become an organ donor through the national register at RegisterMe.org or the Illinois registry at LifeGoesOn.com. You can contact the IL registry at 1(800)210-2106 if you’d prefer to call.

Does my religion allow organ donation?

Most major religions of the world allow and support organ donation as an act of generosity and compassion. While views vary across individuals, countries, and cultures, the following summarizes the general views of a few major religions on organ transplantation.

Christianity – Protestantism: Organ and tissue donation is generally viewed as charity. Most denominations endorse and encourage donation, and the decision is ultimately left up to the individual.

Christianity – Catholicism: Donation is encouraged as an act of charity and love. The Catechism of the Catholic Church states that donating organs is “a noble and meritorious act and is to be encouraged as an expression of generous solidarity.”

Islam: Although interpretation varies around the world, a 2020 review of rulings by Islamic jurists in North America and abroad judged that organ and tissue donation is “morally permissible from the perspective of Islamic law and ethics, subject to several conditions,” including first-person authorization, minimized harm to the person donating, and the prohibition of the donation of reproductive organs.

Judaism: Donation is generally encouraged, except in conservative or orthodox communities. The concept of pikuach nefesh holds that if it is possible to save a life, one has an obligation to do so.

Buddhism: There is no injunction for or against organ/tissue donation. Across the many Buddhist traditions, the decision to donate organs is generally left up to the individual.

Hinduism: There is nothing prohibiting organ transplants in Hindu tradition. Due to the belief in reincarnation, the state of the body post-death is not generally seen as spiritually crucial.

While most religions support organ donation, the views of every individual, tradition, and faith community are unique. The best way to determine if your religion supports organ donation is to discuss it with your faith leader.

What parts of the body can I donate?

The following organs can be donated: heart, kidneys, pancreas, lungs, liver, intestines, hands, and face.

The following tissues can be donated: cornea, skin, heart valves, blood vessels, and connective tissue.

Other possible donations include bone marrow, stem cells, umbilical cord blood, and peripheral blood stem cells (PBSC).

Is becoming a living donor dangerous?

Organ donation is a major surgery, and like all major surgeries, complications are possible. Per the National Kidney Foundation, living organ donors report a boost in self-esteem, and 90 percent said they would donate again if they could. However, the most important thing you can do if you’re considering becoming a living donor is actively learning and researching the process to understand the potential consequences fully.

Can I sell my organs?

No – selling organs is illegal in the US by federal law. The law is intended to prevent wealthy people from unfairly receiving donated organs or tissues.

What if I sign up to be an organ donor but change my mind later?

If you decide to become an organ donor, you can change your donor status online through the LifeGoesOn.com website.

How do I become an organ donor in Illinois?

There are several ways to sign up to be an organ donor in the State of Illinois:

  • Go to LifeGoesOn.com and submit the online form.
  • Call the Secretary of State’s Organ/Tissue Donor Program at 1(800)210-2106.
  • Mail your request to become a donor, including a valid IL driver’s license or state ID card number, to:

The Secretary of State’s Organ/Tissue Donor Program

501 S. Second Street, Rm. 451

Springfield, IL 62756

While carrying an organ donor card is useful, it is not enough. You might not have the card, or it could get missed or lost. Signing up in your state registry is the best way to ensure your wishes are honored.

When you become a donor, sharing your wishes with your family and loved ones is important. This can help them understand and respect your decision and make the donation process after death proceed as smoothly as possible. Many donor families find that the organ donation of a close friend or family member is healing, as it allows part of their loved one to live on through the life of another.

What are the reasons to become an organ donor?

Becoming an organ donor is a personal decision, and it should not be made out of a sense of guilt or obligation. Even if you are uncomfortable with donating your organs or tissues after death, there are many ways to help, including spreading the word, contributing to your local organization, and signing up to be a living donor in Illinois or nationally.

However, there are many reasons to become an organ donor. Organ transplantation is an opportunity to save up to eight lives and improve many others. Donating organs is supported by most major religious groups as an act of charity and compassion. And most importantly, organ donation fulfills a direct and dire need in Illinois and the US. The more people who sign up to donate organs and tissue, the more likely it is that the individuals on the waiting list for a lifesaving transplant will be able to receive organs that are compatible with their bodies.

If you want to become an organ donor, learn more and sign up via the Illinois Organ/Tissue Donor Program or the National Donate Life Registry.

Further reading

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