Patients on the Organ Waitlist and their battle with Depression

Organ transplant is often the last resort for those at the last stage of organ disease. Be it the Heart, Lungs, Kidneys or the Liver;an organ recipient on the waitlist, and his family, wait with bated breath until the telephone rings informing them that a perfect match donor has been identified. This period can be extremely stressful;with patients experiencing other co-morbidities, due to the stress that comes along with waiting for an organ donation.

Stress and anxiety are two common prolonged factors seen in such cases. Reasons behind stress may include fear of dying, financial insecurity, worrying about family members, undergoing constant hospitalization, prolonged medication etc. The long journey to receive an organ sometimes makes recipients mentally vulnerable, discouraged, and often feeling like a burden upon their loved ones. Patients on the waitlist have no idea when a donor organ will be available, and onoccasions, they have to wait for weeks or even years. Along with stress comes depression. The long wait where one believes he is entitled to receive an organcan put him in a depressive state. Whether or not he will receive it in the right time becomes a frequent question that is etched in the mind, and is the most asked question to their Physician.

When on the list, a patient is down on the count, awaiting rescue from a donor. There are many other factors that can add to the depressive state of these patients. For those who have to wait for a longer period of time (those who are non-critical) are likely to see their health deteriorate. Another aspect is thinking that he/she benefits out of another person’s death which instills a feeling ofguilt which increases the chances of being depressed. Post-transplant aspects sometimes set the tone for depression; the thought of the transplant once conducted, if the donor organ fails or increases the risk of further health issues and subsequent life-long medications. The waiting period may overwhelm the patient and can createa sense of panic andanxiety on a regular basis.

“Chronic illnesses are not only accompanied by biological and physical changes but also by emotional and social changes requiring the patient to adjust to a new social order and to cope with it. The self-adaptation process is accompanied by an increasing loss of independence and social roles (family and occupational. During the waiting period patients may need expert help as well as extensive family and social support. We have in our team Psychologists and Psychiatrists to help cope, we have also created self-help groups for recipients so that we can provide full support during the period before and after transplantation”, says Dr. Rakesh Rai,Senior Consultant HPB & Transplant Surgery, Fortis Hospital, Mulund.

In India, over 1 lakh recipients are waiting for organs today, with barely around 15,000 donors who have consented to donate their organs.The demand certainly exceeds the availability and India is still at a nascent stage when it comes to organ donation, as awareness towards the cause is low.  Subsequent treatment must be provided to those waiting for a transplant to help them deal with the ordeal and lower stress and anxiety that comes along with it. Support is crucial at this point in time as an unstable mind can lead to further complications and put the patient at a risk.

According to Dr. Kedar Tilwe, Consultant Psychiatrist,Hiranandani Hospital, Vashi – A Fortis Network Hospital, says,“Depressive spectrum disorders are most commonly observed mood disorders amongst organ recipients; both before and after transplantation. The uncertainty of the waiting period, risk associated with the actual surgery and possibility of post-operative complications can be a source of significant emotional distress. There is a need to tackle this distress at the earliest as it can have a bearing over the recovery of the patient”.