MOHAN Foundation has formed a "Support Group" for Kidney Failure patients. This support group is open to kidney failure patients, kidney transplant patients, kidney donors, relatives of the patients or any individual who wishes to help kidney failure or transplant patients. The support group has conducted its meetings in Chennai, Hyderabad and Mumbai.
1. Acceptance: When a patient is diagnosed to have kidney failure, it is usually out of the blue and it comes as a shock to both the patients and their relatives. The support group will help out these patients to cope with the stress and give them a better understanding of the problem. Talking to patient who have gone through similar experience and agony is likely to help the patients in accepting the condition and to plan out the future course of action.
2. Time Factor: Doctors and nurses many a times are too busy to indulge in a detailed discussion with the patient about their conditions. When a patient for the first time hears about kidney failure they go numb with disbelief and go through a phase of denial. After hearing this devastating diagnosis they may hardly hear what the doctor has to say further. The support Group can help such patients by readily offering advice and solace.
3. Tall Claims & Quackery: Many newly diagnosed patients in our country land up with quacks making tall claims and most of the time loose out both financially and physically. They return to the practitioners in a worse condition after a few months. A support group would help in quelling the belief in these quacks and will be able to give the patients a more realistic view of their condition.
4. Finance: Kidney Failure cripples many patients financially. There are a few charitable and government funds available for such patients. The support group can help in guiding the patients to these institutions and help them in applying for these funds.
1. Planning for Surgery: A patient going for kidney transplant surgery needs some guidelines about hospital stay and what to expect. Support group can help in this planning.
2. Education on how to live with a Transplanted Kidney: A patient who has had kidney transplant needs to be adequately educated to keep a functioning graft. They have to take their drugs religiously. Support group can help in their education by distributing literature and by talking to the patients.
3. Drug education: Education of transplant patients is essential as many of these drugs cause side-effects. Support group can help in this education process.
4. Maintenance therapy: Drugs to prevent rejection of the graft for kidney transplant patients are expensive. Many patients stop their drugs abruptly and land up with renal failure. Patients can be counselled by the doctors and certain drugs like Cyclosporine (Neoral) can be stopped after a certain time. Support group can help in advising the patient to go back to their doctors and explain to them about their financial problem so that the doctor could change the medication.
1. Inadequate education: Many a donor has gone through social, emotional or family pressures to donate their organs. Very seldom has a donor regretted this donation if it is done to a loved one and done voluntarily. However there are many unrelated kidney donors. Many times these patients do not understand or not told about the risk of surgery however minimum it may be. The support group can help in their education.
2. Regular health check ups:Yearly check up is essential for kidney donors. A support group can help in creating awareness among the donors.
Seeing the suffering of a loved one is an agonising experience. Many a times one want to help but does not know how to contribute or do their bit. Then again there is an anxiety that if one family member has the disease would others also suffer the same fate. If dialysis is advised then one of the relatives has to constantly accompany the patient to the hospital. In many instances the full family life of a household can revolve around the suffering patient. Sometimes as much counselling of the relatives is necessary as the patients themselves. The support group will help the relatives to come to terms with the condition of their relatives.
Kidney failure patients need to take a lesson from those with HIV-AIDS and become activists if they wish that issues related to organ donation and transplantation be taken seriously by both the government and the public in India. Today the Indian transplant programme has no voice or locus standi in our country. A concerted effort is required. The passage of Transplantation of Human Organ Act by the Indian Government was meant to help the organ failure patients. In western countries annually over 50,000 transplants are done and 95% of the organs come from patients who are “Brain dead” or Cadavers. Live related kidney donation only forms a small part of the programme. In India almost three years have elapsed and we have barely managed to do just over 100 cadaver organ transplants. This also is only due to individual pursuits by a few dedicated doctors. The government has done nothing to spread the awareness of solid organ donation (like kidneys, heart, liver and pancreas). As a cohesive support group your voice of togetherness to alleviate the suffering of kidney failure patient is more likely to be heard both by the society and the Indian Government.
The support group will meet every month. During such meetings an interaction between members will be encouraged. Patients will be allowed to share their experiences and voice their insecurities and their problems. A small panel of invited people like doctors, psychiatrists, nurses and dietitians will try and help out by providing possible solutions.
A nominal yearly subscription will be charged to take care of administrative costs. Correspondence membership will also be open for people who are not ble to access the support group in person. Once in five years Membership Fee - Rs.500/- (Rupees Five Hundred only)
Literature on various aspects to help the Kidney Failure patients will be posted to all the members regularly. The Foundation currently has useful published literature on Kidney Transplantation in English, Tamil and Hindi for patients. Members will also receive a copy of the quarterly “Indian Transplant Newsletter”. The members will receive all material free of cost.