Written By: Anisha Bhatia | January 07, 2019 11:58 AM | In Focus

FAQ’s For Those On The Waiting List For Transplants And Looking For Organ Donors

New Delhi: We live in a country, where approximately 5 lakh people die each year, waiting for organs. More than 1 lakh people die of liver diseases, while, just 1,000 get a liver transplant. There are more than 2 lakh people who await kidney transplant, whereas, mere 15,000 get a kidney transplant. There is a wide gap between the number of transplants waiting to happen and the availability of organs in India. And, the irony behind these depressing statistics is that mostly people lack awareness about the process of Organ Donation.

NDTV speaks to Mohan Foundation, a not-for-profit organization that promotes organ donation and transplantation in India, to get a lowdown on the most frequently asked questions or basic points that people lack clarity on when it comes to organ transplants and donations. Here’s all you need to know:

  • How Do I Get An Organ If I Need A Transplant?

One can have a living donor transplant only in the case of kidneys and liver. For all other organs like heart, cornea, lungs, eye, one requires a deceased donor who has been declared brain dead by the doctors.

  • What Is A Living Donor Transplant?

A living-donor transplant is a surgical procedure to remove an organ or portion of an organ from a living person and transplant it in another person whose organ is no longer functioning properly.

  • Living Donation Is Of Three Types

Living Near Related Donors: Only immediate blood relations are accepted as donors according to THOA (Transplantation of Human Organs Act) viz., parents, siblings, children, grandparents and grandchildren (THOA Rules 2014). Spouse is also accepted as a living donor in the category of near relative and is permitted to be a donor.

Living Non-near relative Donors: These are other than near relatives of recipient or patient. They can donate only for the reason of affection and attachment towards the recipient or for any other special reason and have to be approved by a state appointed committee called Appropriate Authority.

SWAP Donors: In cases where the living near-relative donor is incompatible with the recipient, provision for swapping of donors between two such pairs exists. It is a simple ’give and take’ deal between two pairs of people, each pair consisting of a giver and a taker, where each pair benefits by receiving a suitably matched organ. This is permissible only for near relatives as donors, as per the law that governs transplants in India.

Organ Donation-43 Organ Transplants Performed Across India In A Single Day

Deceased or Donation After Brain Death: One could register in the deceased (cadaver) donation waiting list of hospitals doing organ donation and transplantation in the unfortunate circumstance that no one in the family is a suitable donor. Recipients on this waiting list receive organs from those patients who have been declared brain dead and whose relatives have given consent of organ donation to the treating team of doctors, so that the lives of people suffering from end stage organ diseases/failure can be saved through a transplant. One brain dead donor can save at least 7-8 lives.

  • What Is A Waiting List For Organ Transplant?

It is a list of people waiting to receive an organ for transplantation. Every hospital that has capability to do organ  transplant has their respective waiting list, which they further add in a centralised website of National Organ & Tissue Transplant Organisation (NOTTO), the country’s apex organ donation agency.

  • How Does Someone Get On The Waiting List?

The patient can register for inclusion in the waiting list through a registered transplant hospital. The treating physician of the hospital shall make an evaluation (based on medical history, current condition of health, and other factors) and decide if the patient needs a transplant and meets the criteria to be listed. Like for kidney transplant, other than blood group, main criteria are the duration of time that the patient has been on regular dialysis. Similarly, for other organs, criteria are different based on medical history, current condition of health, and other factors.

  • How Can Will A Patient Know That He/She Is Fit To Be Listed For Organ Transplant?

Every patient who has developed end stage organ failure may not be fit for organ transplant. Basic principle is that patient must be screened on medical grounds (based on medical history, current condition of health, and other factors) for the development of end stage organ failure. The treating doctor will decide whether the patient is medically fit for transplant and other parameters before listing in the wait list.

  • How Long Will A Patient Have To Wait?

Once added to the national organ transplant waiting list, the patient may receive an organ on the same day, or may have to wait many years. Factors affecting chances of getting an organ are how well matched the patient is with the donor, how unwell is the patient, and how many donors are available in the local area compared to the number of patients waiting.

  • Why Is The Waiting List So Long?

There is a huge disparity between demand and supply for organs for transplant in India. There are more numbers of patients requiring organs as compared to number of organs available for transplantation. That is why there is urgent need to create awareness about organ donation. As more people decide to take the pledge and donate organs, the waiting list will go down.

  • What Is The Process To Find A Right Donor?

When a transplant hospital adds an individual to the waiting list, it is placed in a pool of names. When any deceased organ donor becomes available, all the patients in the pool are compared to that donor. Factors such as medical urgency, time spent on the waiting list, organ size, blood type and genetic makeup are considered.

  • How Long It Will Take To Get A Deceased Donor Organ?

There is no time line on how long one will have to wait for an organ that the individual requires. This depends on his/her medical situation and how frequently organs are becoming available in a city or state.

  • Is It Possible To Know One’s Status On The Waiting List?

Yes, the status on the waiting list can be known as this is quite a transparent system. But this will not help as getting an organ depends on many other factors other than just waiting list number.

  • Does One Need To Be Always Prepared To Receive A Call For Transplant?

Yes, it may be better to be mentally prepared and have some funds for an urgent organ transplant. Deceased transplant is mostly on an urgent basis. That is why it is better that investigations for transplant are updated all the time to be ready for transplant as soon as an organ in available.

  • If One Gets A Call For Transplant, Is It Definite That One Will Get The Organ?

No, getting a call for transplant does not mean that the individual will definitely receive an organ. The transplant team will examine immediate fitness for transplant. There is possibility that the tests done just before possible transplant may not be normal to make the individual fit for transplant. Further, more than one patient is called for possible transplant and it may be a chance that someone else will be a better fit than the other for that particular organ transplant.

  • What Is The Protocol To Maintain Waiting List?

As per protocol, patients who require cadaver organs are put on the waiting list. But in India, number of patients requiring organs are more as compared to number of organs available.

There are two types of waiting list; one is urgent waiting list and another one is regular waiting list. Urgent listing of patients for organ transplant is primarily based on medical criteria, i.e. patient needs organ on an urgent basis otherwise he/she may not survive.

Regular waiting list is also based on medical criteria and these criteria are different for different organs. Like for kidney transplant, main criteria are time spent on regular dialysis. Similarly, for other organs, criteria is different.

  • What Is The Protocol For Organ Distribution?

The organs would be distributed locally within the State first, and if no match is found, then they are then offered regionally, and then nationally, until a recipient is found. Every attempt would be made to utilise donor organs.

  • Can A Person Register In More Than One Registry?

Yes, as of now, a person can register himself in different state registries but once a centralised registry is streamlined by NOTTO, then every patient will have a single unique ID and waiting list number across the country.

If you have any further questions or doubts then post your query here.