A report on the proceedings of the 1st meeting were read out in the beginning. Then Dr. Sadre gave a briefing to Dr. Abhay Sadre and Dr. Ambikeus about the signs and symptoms of kidney disease. He also guided the patients and their relatives about the proper care that needs to be taken by a patient. He stressed the importance of leading a normal life and the significance of spreading awareness about kidney failures.
Dr. Ambike also informed about the problems faced by the patients and the doctors alike. The suggestion of holding an awareness camp of diabetic patients for early detection of diabetic kidney diseases in them in the near future was welcomed by both the doctors.
First timers for the support group, Mr. Gaikwad and Mr. Vaswani spoke freely about their doubts and problems.
Other patients offered them guidance and support and told about their past experiences. Mr. Raju, a dialysis technician at the Jahangir Hospital described the close relationship that develops between the dialysis patients and their technicians. He also advised everyone to follow their prescribed regimes regarding food. Mr Pendse, another dialysis technician also gave his inputs. The meeting unanimously passed two resolutions.
- To form a committee and to register it.
- Hold awareness camps to spread the knowledge about kidney diseases.
Aarogya 1st Meeting Report of kidney Support Group
Helping you help yourself
Whenever faced with a problem, did it not help to pick up the phone or go and meet friends and family? Is it not easier to face a crisis when there is help, care and support close at hand? Doesn’t all one’s energy get completely drained just by knowing that you are all alone? These issues are a few which we at Aarogya kept in mind when we started our Support Groups. The patients’ perspectives, the families’ trials and the doctors’ accessibility, all had to be catered to and eventually worked on to reach a positive goal. On Sunday, July 2nd, 2000, aarogya.com organized the very first meeting of the Kidney Support Group.
40 people turned up at the Jehangir Conference Hall to share their experiences with chronic renal failure. Of these, 18 were patients and the rest were relatives. 50 year old Sitaram Sarode, a farmer from Shirur, came all the way with his wife Dwarka. 27 year old Kishore Khullam who needs a renal transplant, made the effort to attend this meeting to know how he could be helped.
Maharani Irani, a mother of three, also needed information on transplants. At this meeting, everyone’s medical queries were answered by Dr Ashwin Dixit whilst Suhas Mulhekar, who had undergone a transplant shared his experiences with everyone. S. K. Gupta, Vidyadhar Phatak, Nitin Shah and Prashant Bonde, all were very eloquent about how they coped with renal failure. The patients were lively and charged with enthusiasm. They did not want to be treated as helpless, incapable patients and here they came into their own as they had other patients backing them. That is our aim. Aarogya wants to bring these people together to stand up and voice their opinion. We do not want to stand up and holler ourselves. Results, like seeing a kidney patient smile and answer fellow patients’ queries, doctors not being precautious and politically correct and a family sharing their experiences about the one that they lost, are what one gets to see at these meets. All of this does help.
If you wished to undergo a kidney transplant, wouldn’t you wish you knew somebody who had undergone a similar operation or met someone who could give you a second opinion, perhaps even first hand information on the ordeal? Also wouldn’t you wish you knew about how to cut through the red tape with your sanity intact and spoken to family members who had coped with their trauma? Sometimes there are things a doctor doesn’t feel fit or necessary to tell you. Sometimes, you stumble upon information very late. It is essential therefore, that a support group be formed wherein members can exchange information and experiences to help promote confidence and awareness. The work of a support group is to provide information, first hand or otherwise, and provide moral support. Along with this, Aarogya would like to also promote financial assistance from charitable institutions, good Samaritans and even people who have undergone the ordeal and would like to help others.
Since our Support Group was such a success, it was unanimously decided by the members that such meetings would be held on the first Sunday of every month at the Conference Hall of Jehangir Hospital and Medical Center. At the next meeting, Support Group members will choose a committee that will consist of doctors and social workers. This committee will then decide who will be the beneficiary of the funds that will be raised through its efforts.
One gains new strength and confidence with numbers and that is what was felt by all. So far, everyone had something to say but never knew where and how. A patient’s life is restricted if he suffers from a condition, thus this kind of an interaction would also be ideal to meet new people and how wonderful it would be if one had a friend who could totally empathize.