Arti Salunke Foundation
Arti Salunke Foundation for Organ Donation is a Foundation proposed to be dedicated solely for spreading Awareness and Knowledge about Whole Body Donation (Deh Daan) and Organ Donation amongst people in India, with an aim to bring down the Waiting List of Patients waiting for Organ and Tissue Transplant as good as upto Zero from an average 6 to 10 years of Waiting Period. This seems a very difficult task, but is possible through creative and focused Awareness Campaigns.
The President, Shri. Prashant Salunke has felt the pains of such patients when his wife Smt. Arti Salunke was suffering from Kidney Problem for 5 years, and passed away waiting for Deceased Donor’s Kidney. The foundation is formed after her name, but we are aware that the support of likeminded people is very important. We have made few suggestions here from our point of view. Any suggestions, corrections, additional important information in this interest will be always solicited for the noble cause.
OPD, Ward, ICU, Nurses, Staff of various departments
Dy. Dean, A.M.O., KEM Hospital
Professor and Head, Department of Nephrology, KEM Hospital
Professor and In-charge, MICU, Dept. of Medicine, KEM Hospital
and Nursing Staff at Dialysis Unit, KEM
M.D., D.G.O. (Gynecology), Highway Medical Center, Andheri
M.D. (Medicine), D.N.B. (Nephrology), Leelavati Hospital, Sainath Polyclinic, Andheri.
M.D., D.M.R.D. (Radiology), Malad, Mumbai.
(M.B.B.S.), Family Physician, Goregaon and Juhu, Mumbai.
(B.A.M.S., M.U.H.S., M.M.S.) Family Physician and Surgeon, Parel, Mumbai.
Co-ordination Committee, Mumbai(at Sion Hospital, College Building)
M.D.(Ayurved), Asso. Professor, earlier with Poddar Hospital, Worli, Mumbai, and currently with D.Y. Patil Hospital, Nerul, Navi Mumbai.
(B.A.M.S.), Mittal College and Hospital, Churni Road, Mumbai
M.B.B.S., D.P.B. (Pathlogy), Goregaon Nagrik Seva Pratishthan, Goregaon Mumbai, and Modern Dignostic Centre, Andheri and Ghatkopar, Mumbai.
M.D. (Ayurved), D.Y.T. (Yoga), Goregaon
(B.A.M.S.), Ayurved Paramarsh Kendra, Haridwar
by Lions Club, Siddharth Hospital, Goregaon, Mumbai.
by Venus Medical Centre, Goregaon, Mumbai
Extended Family, School Friends, Friends from BJP and all Political Parties, Lions Club of Oshiwara Crescent, End Number of People who gave Blood, and every kind of Support..
School friends played a vital role in this critical phase of my life. I realized that, no other support- financial or practical support can match an emotional support from childhood friends and school friends.
Being social, I had attended hundreds of funerals of almost every religion. I too never was aware of the seriousness of Organ Donations. I came to know about the Waiting List for Transplant when my wife Smt. Arti was trailing. She had Only One kidney since birth, and that too was failed. We wanted to go for Kidney Transplant. During this period, we interacted with other similar patients. It was that time when we came to know about misconceptions about Living Organ Donation, such as religious considerations and future personal health issues, when own blood relatives hesitate to donate a Kidney. Then while undergoing number of tests for Cadaver (Deceased donor) Transplant, I realized that, the procedure of Cadaver Transplant itself is so vigorous that the patient goes nearer and nearer to death day by day. I lost my wife within just 6 days of registration, and I decided to donate her organs. There I came to know how easy the procedure of retrieving organs is. I also came to know that there is no disfigurement of the body. It is difficult to describe in words how much pleasure I got even in that deep grief, from donating her eyes- a feeling that she is still alive in someones’ eyes ! And above that, she benefited 2 persons to see the world even after the end of her journey on this planet, earth. The thought prevailed in my mind at that time is “peerJeve oslee ³esF&ue, ce=l³etveblejner ! Though I have lost my beloved, I can save elseone’s beloved.”
I had filled the form of Eye Donations with Times of India, long back somewhere between 1987 and 1990, Mrs. Arti had not filled any such form. And there I came to know that ‘Wish’ of the deceased is not mandatory but the ‘Consent’ of the close relatives of the deceased is asked for.
When I watched the Awareness Campaigns of Government and NGOs, I realized that the focus of all these campaigns is on ‘Getting filled-in the Consent Forms of Individuals’ stating that they are willing to donate their organs after death. The form is compulsorily to be signed by two witnesses to assure that this ‘Will’ is known to close relatives. The question is why there are not sufficient organs available even when number of organizations are working for awareness and number of people are submitting the forms each with Two witnesses ? It is because the focus is NOT on the close relatives of the deceased whose consent is LEGAL for retrieving the organs. Even if a person who wishes to donate organs dies, his / her organs will not be retrieved if the close relatives have objection / do not wish for it.
I thought I will initiate this Campaign as a mission of my life. I lost my person but I gained insight into the nature of problems and how to overcome them. Organizations are busy in filling-in Consent Forms. Zonal Transplant Co-ordination Centers are busy with distribution of organs in transparent ways. Relatives of the deceased are busy in funeral activities. I realized, people should be made aware in such a way that the THOUGHT of organ donation will come into their minds at the time of death of their relatives, and they will take immediate steps at the earliest towards retrieving the organs.
I think I should use the term ‘Gift Organ’ instead of ‘Donate Organ’, because it is a gift of nothing less than a life to someone you would never know. To gift to someone you do not know is a real charity (oeve) in any human culture. In India, Organ Donation is not so popular. But it is not because people in India are not willing, but because people in India are not aware of. They are not educated enough. It is possible to create awareness through our schools, colleges, and religious institutions. Every family not only in India, but in the world, follows religious rituals at the time of funeral in some form or other according to their religious beliefs. Every religion believes in Paap-Punya, Daandharm concept. Every religion believes also in Organ Donation. People will come forward, the only need is to create hyped awareness amongst people just as done with Pulse Polio Dose, Swacch Bharat Abhiyan, Plastic Ban etc.
--- Prashant Salunke
It is during this period of 2.5 years of hospital rounds, we came to know number of good things about Public Hospitals. The good things are.. The doctors work very hard and almost without any rest. I once caught hand of Dr. Rahul (Head of Dialysis Unit) and asked him, “Doctor, when do you have sleep ?” He just gave a smile upon that and left... I had found him either working in Dialysis Unit, Ward, Operation Theatre, or going from one place to another at any given time during day or night. The team of doctors at OPD who decides whether to get a patient admitted, is very quick to assess the seriousness. Number of times of I saw these doctors treating serious patients, especially accidental cases, right at the entrance as soon as the patient is taken out of ambulance. They do not wait for Cash Deposit from patient’s relatives, contrary to the practice of private hospitals. These doctors handle as many as 3 to 7 patients at a time. I wonder, people wait till their turn to come up at the private clinics / hospitals even after paying huge amount; but they do not have any patience or discipline when they come to public hospital where more experienced doctors are available at almost no cost (It’s like people follow discipline while travelling by Metro but the same people would make every possible dirt at Railways). I saw Dr. Pravin Bangar, Dy. Dean, helping patients and their relatives with smiling face irrespective of whether they have come with or without reference of influential person. I had not disclosed to them my identity or political background on my own, but I got every help from everyone there – right from Head of the department, to Ward Head to Nurses, to the Ward Boy. All of them came to know about my influence only after number of Municipal Councilors, BJP Leaders, and Smt. Vidya Thakur Ji, Minister of State, visited KEM to see Smt. Arti Salunke. I take this opportunity to tell all of you that- just be calm, follow the laid rules and let them do their duty- the whole team of public hospital is there to help you. The best of the best treatment is available there.
We also understood the problems of serious patients during this period, while we were doing rounds of Tests required for Registration of Cadaver / Deceased Donor Transplant. Deceased Donor Transplant is done when the organ of the deceased person is made available considering the priority guidelines of government appointed committee at Transplant Co-ordination Centers (Zonal Transplant Co-ordination Center for Mumbai, Greater Mumbai, Navi Mumbai, Thane, Palghar, and Konkan Region is at Sion Hospital, Mumbai). I was told that there are total 19 tests to be done for transplant surgeries. ‘Ten’ tests (Cardiological, Psychological, Neurological, Gastrointestinal, Urological, Obstetrical, Gynecological, Skin, Chest, and E.N.T.) out of the total 19 tests are compulsory for Registration with ZTCC; and remaining ones are to be conducted after registration and before transplant surgery. These ‘Ten Compulsory’ tests have number of sub-tests within them, such as HIV, Eye Tests, X-Rays, ECG, USG, Colour Doppler, MRI, CT Scans, Blood Reports as per specific requirements of each department, etc. Considering the rule that all these tests are to be done only from Public Hospital and only on the specified days for each test, it takes almost 3 months to complete these tests which are compulsory for entry in the Waiting List. In between it has been brought your notice that it may take 3-7 years waiting period for your turn as per the Waiting List. KEM advised us Tests for Registration for transplant on 31st March 2017 and issued Conclusion Certificate on 10th July 2017. We got registered on 14th July at ZTCC, and Smt. Arti passed away on 20th July…. and now we came to know that only the Proof of 1st Dialysis, and Blood Group is enough for registration. Try to feel the agony !
From the experience we had during this hectic and tiresome period of 3 months plus14 days of Registration Process, I have few suggestions here. Of course, these suggestions are from Patient’s point of view. I am not aware of the other side, i.e. of Hospital’s and Doctors’ views upon this. These are based on patient’s practical experience. My request is to consider these points for brain storming and arrive at the most suitable practical procedure. Firstly, to rethink upon whether the number of compulsory tests can be reduced ? Anyhow, gap of 3 to 7 years period is there between the date of registration and the possible date of Transplant Operation. How many of these tests are truly relevant till that time ? A patient whose life expectancy is assumed to be 4 to 6 years is facing waiting period of 7 to 10 years…!
Secondly, all the blood tests can be done by taking blood at Single Time, and maintaining a particular time slot for Transplant Patients for the tests like ECG, Sonography etc. Patients come from long distance to public hospitals. They may leave their home as early as 5 am to reach to KEM by 8.00 am; and they may have to remain empty stomach sometimes even upto 12.00 pm. This is not a good thing for patients who already are serious. Also, the Single Window System may be introduced to reduce the number of visits of patients upto One to Three days instead of 2 to 3 months’ time span. It is very much necessary because the patients require transplant itself means that they are serious enough, and suffering from end stage disease. Patients can come by taxi or car or ambulance ONLY upto the entrance of the hospital, but to attend various departments and OPDs requires crossing about 2 to 4 kilometers walking. Though the patient is on Wheelchair, it is certainly not easy. Wheel Chairs and Stretchers are required to be made available in more numbers. The patient who is said to be suffering with End Stage Organ Failure has no option but to sit in the open space after getting down from taxi waiting for Wheel Chair or Stretcher. The load upon the hospital is so much that the no one can predict how long it will take the accompanying relatives to find Wheel Chair or Stretcher.
There are constraints such as availability of space, availability of doctors and staff, etc. But a time effective system can be exercised to drastically minimize the above hazards. At least some outside pathology laboratories can be classified and permitted for certain tests. I did not understand the logic behind calling the patient ‘In Person’ to collect the Confidential Report of AIDS and HIV. What is confidential in it ? The family members are more aware of the seriousness of the disease than the patient. If the HIV report is negative, then there is nothing to hide from patients. And if the report is positive, it is better to discuss with the close relatives rather than the patient. Anyhow all the decisions of tests, surgeries, financial arrangement etc are taken by family members only, not by the patient. It may be more dangerous to let the patient know about positive reports of AIDS tests.
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