A few days back I reviewed Shades of Life by Vasundhara Ramanujan here. Inspired by her courage and touched by her story, I asked here if she would be interested in doing an interview for my blog. She said a ‘YES’ 🙂 and here am I writing this post.
I am intrigued by her answers and so very glad I asked her for an interview. She us answers on Indian Medicals and Doctors, her struggle with cancer and her take on ‘corrupt’ medicos.
Guys, please welcome Vasundhara.
Me: What inspired you to write your story and share it with the world?
Vasundhara: Through ‘Shades of Life’ I wanted to convey a message to people. Kidney failure is a complex disease, as it chronic it means lifelong medication and diet, so high financial maintenance costs and high emotional maintenance too. In people with high blood pressure and diabetes, it can be prevented. Genetic kidney diseases cannot be prevented,unless research will find solutions so is no longer ‘hand-me-down’ to generations.
Worldwide kidney disease and failure is not given importance. While dialysis and transplant are seen as ‘quick fix’ solutions, there’s lack of understanding of what the disease entails. Kidney patients need as much support as cancer and HIV patients. The chronic condition makes a patient lonely and depression could set in. Self motivation apart, external motivation and support, both emotionally and financially is needed.
According to published studies* for North India, dialysis costs Rs 1,250 per dialysis (or more) which for thrice a week dialysis is Rs 3,750 per week and Rs 15,000 per month. Blood tests, doctor visits, conveyance, and medicines including EPO injections will be another Rs 2,000 or more. How many people can afford Rs 17,000-Rs 20,000 on medical expense? Can the patient self support himself/herself for life?
Average cost of a transplant will be Rs 50,000 in Government hospitals and at the lowest,Rs 300,000 in private hospitals; additionally monthly medicine costs are approx. Rs10,000 pm. Another annual cost of clinical tests, doctor visits of approx. Rs 20,000 ormore depending on case to case, needs to be allocated [the study has not fixed the cost].
The physical and mental drain of dialysis and the prohibitive costs of dialysis means,irregularity in treatment in some patients, leading to health complications and causalities.
The book attempts to create wider awareness of kidney failure. In a subtle manner
promotes need for family and friends to exhibit far greater understanding and provide positive support to the patient.
Organ donation is the main thrust for this book. Family members see how a patient gets affected and suffer due to the disease. Donors have to come forward knowing that one kidney is enough to do the work. Their love and concern by donating a kidney will bring relief to the patient. Sometimes wondering – ‘what if I am in that situation?’ might help a person decide to offer a kidney.
Imagine if one day all toilets are closed and one is not able to pee? How will that feel? A kidney patient feels that discomfort every day that he does not get dialysed.
Me: We recently came across this harsh truth of corrupt professionals in Medical Science inIndia in Aamir Khan’s show Satyameva Jayate. Did you have such experience? If so, how did you deal with it? How do you think can one deal with such situations as it is so common in India?
Vasundhara: I thought Mr Aamir Khan’s Satyameva Jayate was an eye opener. We had no personal experience of corruption in medical practices.
Today India’s huge challenge is structuring organ transplantation through cadaver and live/related donor transplants. Though Transplantation of Human Organs Act in 1994 placed restrictions on organ trade, clandestine transplant surgeries are still believed to be carried on. Unfair advantage to rich at the cost of health of a poor donor is seen as a big menace. Patients are looking outside their homes, in the open market for a kidney, when any family member medically proved eligible could be a perfect candidate. Live, related organ donor has longer years of good performance.
In the next season of Satyameva Jayate if Mr Khan can address this matter of illegal kidney transplants, he will be helping the society, while invoking altruistic feelings in people. Some major thrust is needed for organ transplantation.
Me: We read in the book that Aditya was treated in both India and America. How different was the experience? Do you think we still have to catch up in that area?
Vasundhara: Medical services in India is among the best. It is also most economical compared to many advanced countries. Our doctors are well qualified, with huge and varied experience having handled different patients, at times, unique medical problems. As far as kidney transplants are concerned, India uses the latest techniques available world over.
Strong family support in India, easy approach to doctors, is ‘thumbs up’ for India.The West has better infrastructure, better organized systems, better nursing training and established standards. Public Health Care System offers treatments to all the people under the social welfare schemes.
Transplant surgeries are well organized and standardized. They have a well documented method statement. A team of many doctors and nurses are involved in treatment so it is not an individual responsibility. This helps in follow up when the doctor is not available.
Detailed evaluation shows the patient importance of BUN, creatinine, potassium,
calcium, phosphorus and albumin in maintaining their health. Dieticians educate patients on co-relation between blood composition and food intake, showing right portion sizes for better blood results.Post transplant care, education is far superior. Nurses have roles well defined, are qualified and well trained.
Patients settle down to longer periods on dialysis happily and healthily as diet and medicine are monitored. They are required to wait for a kidney to be available to them.
Me: We read very little about your experience with breast cancer in the book. Breast cancer is the commonest cancer in urban areas in India and accounts for about 25% to 33% of all cancers in women. Would you like to give a word of advice to women who are facing it? We would also like to hear on how you think we should take care and be alert to it. Cancer comes with a horde of questions. First being, will I survive?
Vasundhara: Breast Cancer is an advanced form of cancer. In most cases it is curable. Cases of someone succumbing to breast cancer, is now rare, depending in the stage when detected.
Any illness depends on the attitude one wears. If we decide to survive, an inner strength will motivate us to go beyond. One must refrain from too much discussion. People mean well and care for you, but unwarranted information only diverts attention. Everyone’s health and cancer is different, medication and treatment also differs. A competent doctor can decide medication, treatment and dosage. As far as possible, take decisions with a cool head; do avoid getting agitated.
I was detected in Stage II, but being wide spread needed mastectomy. I collected facts about the doctor, my cancer and after that put full faith in the doctor. Faith means confidence and that helps the doctor to perform successful treatments. If doubtful about the doctor, in initial stages you can select someone you can trust.
By asking questions, I established concern and right to information. Everyone is
competent, but we need to be alert. Hospital rules are important. That keeps us aware of our surrounding, focus on our health. A patient must know about medicines and all problems that emerge. Doctors come on visits every day. So remember to ask questions. Notify any small cough, cold or fever. Keep external interference at minimum. Patient’s health and recovery is most important.
Patient must be medically compliant. Seek and follow recommendations on medicine and diet. Stock medicines, fruits and other important dietary items needed. Ensure all medical appointments are made under personal supervision, followed-up and every treatment is properly taken. If there is any break in treatment, inform the doctor so that appropriate action is taken.
Never take anything for granted. Your health is your concern.
As a general rule, ladies must conduct self examine of their breasts. If there is any slight doubt, discuss with family, friends and visit your family doctor. The doctor may advice clinical tests. Early detection will help. Women, over 40 years, must do an annual mammogram.
Me: In your book you said that you read a lot about renal failure and breast cancer and visited several doctors/hospitals. Can you advice on how one should go about in their own findings when dealing with it?
Vasundhara: A big medical problem, often need a second opinion to make certain that it is correctly diagnosed. We shared with our nephrologists about taking a second opinion. This meant the doctor knew we are making assessments and decisions based on information.
We got references from our family doctor for other doctors. One was an urologist and another, a nephrologist. A nephrologist is a physician doctor like a consultant who monitors the health and advices medications, establishes a schedule for clinic tests and overall manages the patient’s health. He chalks out every programme on the transplant whereas an urologist performs the surgery under guidance from the nephrologist.
We met a senior urologist who confirmed that Aditya’s kidney was failing and if attended earlier the kidney would have saved. The other nephrologist was recommending a preemptive transplant. So we had doctors with conservative thinking and modern views.
We chose the advice of a renowned and experienced doctor who advised us to go through different stages of maintaining the kidney, dialysis and then the transplant.
We bought a book on renal transplantation. This helped us get more details of how
transplants are done, showed us instances of unsuccessful transplants that guided us on what we should be alert about. Other than that we found information on websites.
*Source: Indian Journal of Nephrology- 2009 January, Dr Umesh Khanna