Registration for a Deceased Donor

Deceased organ donation is the procedure of donating an organ or part of the organ at the time of a donor’s death for transplantation to another person. To become an organ donor, oxygen and blood flow through the organ are necessary until the transplant to ensure viability. This can happen when a donor dies under conditions that lead to a fatal brain injury, causing swelling, bleeding, or the absence of oxygen to the brain. 

A Deceased Donor Liver Transplant (DDLT) is one of the most commonly performed liver transplants. When you do not have a living compatible family member to donate their part of the liver, the only option is a liver donation through a deceased or cadaveric (brain death) person. Read on to learn everything about a deceased liver donation registration.

How is a Deceased Donor Liver Transplant done?

A Deceased Donor Liver Transplant involves surgically replacing an unhealthy or diseased liver (that no longer functions normally) with a healthy liver from the deceased donor. This is also medically referred to as Cadaver Liver Transplantation. The liver is donated from a deceased donor either after brain death or circulatory death. Generally, these deceased donors are registered organ donors. However, in some cases, the family members decide to donate the deceased’s organs to save someone’s life after the donor's death. 

Once the person is declared dead, the surgeon removes the liver and places it in a sterile fluid. The recipient of the liver is informed, and the surgeon schedules a date for the surgery as the liver can only survive for 12 hours under strict conditions outside the body.

What are the types of deceased liver donation?

The liver donation from the deceased person can be done either after a brain or circulatory death. 

  1. Donation after Brain Death (DBD) donors: Approximately 75 out of 100 livers donated by deceased donors are from the donors whose brain stops working and are declared brain dead.

  2. Donation after Circulatory Death (DCD) donors: Approximately 25 out of 100 livers donated by deceased donors are from the donors whose heart stops working and are declared circulatory dead. This type is a newer process of liver transplantation

Recipient Registration and Listing

Before undergoing a liver transplant, the recipient must be registered online to identify a matching donor for a liver transplant. The recipient registration and listing are done by the following steps:

  1. The first step for a liver transplant is to talk to your doctor and find out if you are a liver transplant candidate. If the doctor thinks a liver transplant is right for you, they will refer you to a transplant centre. The doctor will recommend a liver transplant only when they rule out other treatment options. 
  2. At the transplant centre, your transplant team will evaluate your medical history and perform some tests, such as a physical exam, urine and blood tests, and imaging tests. 
  3. Once approved, the transplant centre will submit your name through an online registration form on the official website of the National Organ and Tissue Transplant Organization (NOTTO) to be placed on the national waiting list for a deceased liver donor. 
  4. The Liver Advisory Committee, consisting of three Apex Technical Committee members of the NOTTO, will approve the registration form and the urgency criteria. 
  5. Super-urgent listing for a liver transplant can be done in the following situations:
    1. Primary non-function of liver allograft.
    2. Early Hepatic Artery Thrombosis (HAT) requiring re-transplant.
    3. A living liver donor who develops a life-threatening liver failure.
    4. Fulminant Hepatic Failure (FHF).
  6. Contraindications to listing for deceased liver transplantation include:
    1. A model for End-Stage Liver Disease (MELD) score of less than 15.
    2. Acquired Immune Deficiency Syndrome (AIDS).
    3. A serious cardiac or pulmonary disease.
    4. A severe infection.
    5. Uncontrolled sepsis (a life-threatening condition caused by your body’s response to an infection).
    6. Extrahepatic malignancy (cancer outside the liver).
    7. Intrahepatic Cholangiocarcinoma (a rare malignant tumour occurring in the bile ducts within the liver).
  7. You must be under 65 years when listing your name for deceased donor liver transplantation. 
  8. You should be registered only in one centre enrolled under the Transplantation of Human Organs and Tissues Act (THOTA). 
  9. You can be registered as a deceased donor while waiting for a living donor transplant.
  10. The transplant centre must update your status monthly. For super-urgent patients, the status must be updated daily to NOTTO. 

Donor Registration and Listing

Usually, there is no restriction on organ donation, and you can donate one or more of your organs and tissues at any age. There are two ways to become an organ donor:

  1. Pledging your organs while alive: You can pledge to be an organ donor with a simple procedure. All you need is to complete an online pledge form registered with National Organ and Tissue Transplant Organization (NOTTO). However, please note that even after pledging your organs, your next of kin will decide whether to donate your organs upon death. It is, therefore, critical to discuss this with your family before becoming a donor. 
  2. By consent of the family: Once declared dead, the state and national registries are searched to determine if you have pledged your organs personally. Even if you haven’t pledged your organs, your next of kin can consent to organ donation upon death to save someone’s life. 

The registration for organ donation can be done at both state (Reginal Organ and Tissue Transplant Organization - ROTTO) and national (NOTTO) levels. The state-wise waiting list of patients is maintained by State Organ and Tissue Transplantation Organization (SOTTO). 

Allocation Principles

The allocation for the donated liver is done as follows:

  1. Allocation is done based on the state waiting list. If no recipient is eligible on the state waiting list, then it is allocated to the nearby Regional Organ and Tissue Transplantation Organisation (ROTTO). 
  2. The liver from a paediatric donor (less than 16 years of age) first goes to a paediatric recipient. If no paediatric recipient is eligible, it goes to an adult recipient. 
  3. Blood group ‘O’ liver is first allocated to a recipient with group ‘O’. If no recipient is eligible, then the liver is allocated to recipients with other blood groups. 
  4. For blood groups other than ‘O’ (i.e., A, B, and AB), the liver first goes to the recipient with the same blood group. If not, it is allocated to a recipient with the ‘AB’ blood group. 
  5. If an eligible recipient is on the super-urgent list, the liver will be allocated to that recipient. If not, the liver will go to the recipient requiring a multi-organ transplant, i.e., simultaneous liver-kidney transplant. 
  6. ROTTO is responsible for the coordination of the liver located outside the state. 
  7. International patients are at the bottom of the waiting list; hence, their chances of receiving a liver from a deceased donor are rare. 

Conclusion

Although the national waiting list for organ transplants helps allocate livers to those most in need, the demand for livers surpasses the supply. Despite their names on the waiting list, several people die in India due to the unavailability of livers. The need of the moment is to spread awareness about organ donation. Pledge your organs TODAY to save a life in the future!

You can get in touch with an HexaHealth expert for any queries you may have about the registration of a deceased liver donor. We provide the best care and zero-cost surgery assistance. We take care of hospital admissions, insurance claims, and other paperwork at zero cost. Our team of 1500+ expert doctors will assist you throughout the treatment, from registration to recovery after liver transplantation. 

Frequently Asked Questions

What is the transplant waiting list?

The transplant waiting list lists all people who need an organ transplant by receiving an organ from a deceased donor.

How does the waiting list work?

A waiting list consists of a candidate pool. Every donor has a list of potential recipients that match certain medical levels, such as blood group and liver size. The best-matched recipient on the waiting list is contacted by their transplant centre for liver transplantation.

What happens before joining the transplant waiting list?

Before joining the transplant waiting list, you will undergo a series of evaluations at the transplant centre to determine whether you are fit for the surgery and your chances of surviving the transplant. Each transplant centre has its guidelines to determine who can get a liver transplant. If the centre approves, your name will be added to the waiting list.

What to expect while you are on the transplant waiting list?

The waiting period for liver transplantation can range from 30 days to more than five years. The wait time depends on several factors such as availability, donor match, overall health, and the severity of your condition. As you wait for a liver transplant, you will regularly meet with your transplant team to evaluate the progression of liver disease and provide resources to help you stay healthy.

How to become a donor?

You can become a donor by pledging your organs and registering yourself at the state (SOTTO) or national (NOTTO) level.

How does the process of donor registration work?

Donor registration is a simple procedure. You must complete an online pledge form at 'www.organindia.org', and your pledge will be registered with NOTTO. 

Who can register to become an organ donor?

Anyone can register for organ donation regardless of age, race, or gender. A person under 18 years will need the consent of a parent or legal guardian.

What is the need to register as a donor?

Registration to become an organ donor is a decision that can save or drastically improve the lives of up to eight people. It can be a step towards bridging the gap between the demand and supply of organs for transplantation.

Is there a cost to becoming an organ, eye, and tissue donor?

No, there is no cost to the donor’s family for donating an organ, eye, or tissue. The family only needs to pay medical expenses before death.

Can someone with HIV be an organ donor?

Yes, the HIV Organ Policy Equity (HOPE) Act offers both donation and transplantation opportunities for people with HIV. The act allows people with HIV who were earlier excluded from the donor pool to donate organs.

Does social and/or financial status play a role in whether or not I will receive an organ?

No, the available organs from the donor are matched with the recipients on the waiting list based on blood group, body size, the distance between donor and recipient, and the time on the list. Gender, race, social and financial status are never considered for organ allocation.

What is NOTTO?

NOTTO stands for The National Organ and Tissue Transplant Organization. It is a national-level organization set up to overlook the activities of procurement and distribution of organs.

How does NOTTO work?

NOTTO functions as an apex centre for all activities related to coordination and networking with other states to procure and distribute organs and tissues in India. It is responsible for disseminating information to all concerned hospitals and organizations.

How is NOTTO different from ROTTO?

While NOTTO is a national-level organization for a national registry of donors and recipients, ROTTO is a regional-level organization responsible for networking and coordination when an organ is allocated outside the state.

If I’m registered in my state registry, do I also need to register in the National Donate Life Registry?

You can still register as a donor in the National Donate Life Registry even when registered in your state registry. Registering in one does not conflict with your registration in another.

Can someone who identifies as LGBTQ+ be an organ donor?

Gender identity or sexual orientation has no relation to organ donation. Anyone can register as an organ donor.

Can someone who identifies as LGBTQ+ be an eye and tissue donor?

Like organ donation, gender identity plays no role in eye and tissue donation. However, certain mandated regulations by the Food and Drug Administration (FDA) can affect your eligibility for eye or tissue donation.

Can someone who identifies as LGBTQ+ receive an organ transplant?

Your gender identity or sexual orientation does not prevent you from receiving an organ transplant. The organs from the donor are matched with the people on the waiting list through a national system based on blood group, body size, and waiting time.

Which patient should wait for a cadaver?

One must wait for a cadaver liver donation when they do not have a living family member whose blood group and liver size match theirs.

What are the myths versus facts about registration for a deceased donor?

  1. Myth: Someone who is identified as LGBTQ+ cannot donate the organ.
    Fact: It is not true. Gender identity and sexual representation do not have any relation to organ donation.
  2. Myth: A history of medical illness will prevent me from becoming an organ donor.
    Fact: Very few medical conditions will disqualify an individual from donating organs. Doctors or the transplant centre do a thorough evaluation of each potential donor on a case-by-case basis to ensure the safety of the transplant.
  3. Myth: My family will be charged if I donate my organs.
    Fact: No, the donor's family is never charged for donating. The family is generally charged for their final efforts to save the deceased donor's life.
  4. Myth: I'm too old to be a donor.
    Fact: No, there is no set age limit for organ and tissue donation.

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