I first met Anu, or Anupama, almost 27 years ago. Between the first time I met her, as a pretty young girl who carried this wonderfully human side to her (something not many pretty girls carry as we realised later), and the time she got married to my good friend Naresh Raghavan, both residents of Padmarao Nagar in Secunderabad, much had transpired that showed us and the rest of the world, the kind of mettle that Anu is made of. When Anu makes up her mind, nothing stands in the way of her will. And that clearly means something because when someone like Anu loves someone, she will move hell and high water for them. That much was crystal clear and I am always glad that on that count, my friend Naresh is certainly on a good wicket.
Years later, after moving from Hyderabad to the US , and settling down in Chicago (Raoul, their son is studying his UG course now), Anu, having dabbled, and in the process of becoming a certified yoga instructor, a substitute teacher, worked with the Theosophical Society in America, and an avid traveller on the spiritual journey, was called upon once again, as if to test these impeccable personality traits of hers. Has she mellowed and lost some of her single-minded decisiveness or was she the same? (If ever there is a story of life being one of divine providence, of preparation that came to this, I cannot get a better one than Anu's.) This is the story of the second part of her life - when Anu volunteered to donate one of her kidneys to her 63 year old mother Renuka - and did it quietly, decisively.
My first reaction to the news
When I heard, after the surgery was completed, my first reaction was that you could not expect any less from Anu. I met her while she was recuperating and I asked her if she would tell me how she went about it so I could share it on my blog. No one that I knew had done something like this - I know recipients, not donors. Anu was more than enthusiastic and very keen to share her experiences so others who are looking for kidney transplants and any related information regarding the same, their families and support systems, so they get an idea of how the process goes. I wanted to know how it feels to give away a part of you.
"It all started with my mother Renuka, being a Type II diabetes patient from the age of 38," she started. "She was insulin dependent. At 48, father passed away in circumstances that were not expected to say the least. From a protected environment where everything was taken care of for her since a young age, Mom found herself suddenly independent as both of us (Anu and Niru Anu's sister) were already married and were abroad. Mom was on a rediscovery of herself - reading, travelling and going on pilgrimages all over India - from Badrinath to Kanya Kumari."
Care to be taken by BP and Diabetic patients
"Perhaps those trips finally affected her health," feels Anu. "Untimely and perhaps unhealthy meals and the loss of that extra care that one normally gets to do at home could have started off the deterioration in Mom's health. What started as a viral fever on one of the pilgrimages in late March 2010, translated into nausea, giddiness on her return to Hyderabad. She was hospitalised in April 2010, for 15 days which was when she was diagnosed with hypertension and subsequently with chronic kidney disease (CKD)."
Know More about the Condition
Despite knowing the dangers of a diabetes patient having hypertension and the subsequent effects on the kidney function somehow we did not educate ourselves enough about the illness at that stage I feel,' says Anu thoughtfully in retrospect. "Also mother not mentioning her current health condition (a Type II Diabetic) and the medication she was on to that doctor who treated her for the viral fever could have deteriorated the kidney condition further." Anu's fervent wish is that everyone who is affected by CKD better not assume anything - it is a nebulous area - and they better educate themselves. There is enough information on the net or simply go ask a doctor. "One must certainly ask questions of the physician," she says emphatically and “above all always inform the Doctors, you consult, of your current health conditions and medications you are on without presuming they know it all-i.e diabetic, BP and/or heart patient etc. From the Doctors end, they should also always inquire before treating/prescribing medications if the patients are on any other medications and/or treatments without just prescribing especially antibiotics. I feel, had the Doctor prescribed a milder medication, mothers renal failure, maybe, could have been delayed by a few years at least. But who knows, it really doesn’t matter now since ‘All is Well’!
"Well anyway, the next thing was to get a good nephrologist for her future care and we were very lucky to find Dr. V. Suresh Babu of Yashoda Hospitals who gave her the forecast and what to expect." This was during June 2010 when Anu was in Hyderabad. The good doctor told them that if her Mom took care of herself well she could avoid dialysis for at least 2-3 years. Here Anu rues that some sort of a structured patient and doctor counseling sessions could have helped on what to expect when dialysis starts and the future for the patient henceforth. Not knowing what to expect they went about life, taking each day as it comes and hoping that things would get better.
Time to Look for Organ Transplants
"The ideal thing to do when a patient like my mother gets diagnosed with CKD and is given a couple of years before renal failure begins, will be to start inquiring about possible options for transplant, starting with volunteer live organ donors from the immediate family circles (spouse, adult children, siblings etc.) and/or gathering information (this is where the hospitals administration can put together a team to help educate and plan along with the patients and their families) on how to get onto the cadaver donor list. I believe the cadaver list has a minimum waiting period of 2-3 years. So the earlier you sign up the chances of you being a matched recipient is greater. When dialysis (process of purifying the blood artificially as the kidneys are not able to function and throw out the impurities from the blood) starts, patients and their families need to know that it is very exhausting, expensive, time consuming process, draining the patient mentally, physically and financially" says Anu.
Costs involved in Kidney Transplant in India
"By this time the registration process for the organ and information gathering ought to have begun, unless the patient is struck by CKD without any warning whatsoever. There is a huge necessity to educate patients on organ transplantation, its benefits and risks as well. Some big issues that the patients and their families need to know are those of the legal aspects concerning kidney transplants especially from live donors, the financial aspect (8 - 12 lakhs) and the substantial post-operation cost (if the patient is also a diabetic like my mother, approximately between Rs.10-15,000 after the initial first six months for the rest of their lives) and general care, making sure they can lead as normal and healthy life as possible."
Choice between Dialysis and Transplant
Typically once the patient is on dialysis the choices are either to continue dialysis which could mean for as long as 5-10 years or more or go in for an organ transplant. Organ transplant can give the patient a better quality of life and save the patient and family a lot of trouble and trauma. But on the other hand there is a considerable financial burden attached to it. As mentioned before a transplant can be done either with a live donor or a cadaver match.
Idea of a Donor Within the Family
"May to Nov 2011 Mom was in the USA where she stayed with a doctor couple who did some tests on her to check her health,' says Anu. Going by the test results they felt that she needed to be on dialysis right then. So Dr. Lakshmipathy and Dr. Lakshmi Garepallli, suggested to Anu and the family that they ought to look at the transplant route ASAP instead of waiting on dialysis, something which Anu says she hadn’t thought about. Somehow with all the treatment etc the idea of a transplant, especially from their own family pool, never occurred to them. "I remember that call clearly," says Anu. "We were on a conference call, Niru and me, with Dr. Lakshmi. I was standing outside a Sears outlet where I had gone shopping for a cooking range vent cover and it hit me in an instant that I will, if I could, donate my kidney. I mentally signed up right then and there. I never told anyone about it (but that was the time I had decided) for I knew it was going to be a long process to know if I could do it at all".
In a living donor the best chance of a match is within the siblings or children. Anu's Mom had three sisters, one brother, a sister-in-law and the two daughters. In cadaver donors where there are low chances of matching, the age of the patient gets to be a big factor. More important is the 2-3 year waiting list in India with no guarantee of a match. If you register for a transplant then you have to have dialysis till you find a match. At that point Anu's Mom was given a one year window for a transplant as an option for her.
Once the decision to look for a donor in the family was taken, four people signed up to donate a kidney. Her mother's siblings mainly. Two were over 60 and one was 59 but all three diabetic and so were ruled out, another 52 with high BP and hence ruled out too. Anu was the obvious choice since her sister Niru had a platelet count issue which ruled her out as well. This, both Anu and her sister agree was the best option and are happy that it had come down to this eventually. So now the choice was clear. Anu would be the one. This, Anu says was a great blessing because it was done without any conflict with others.
The Decision and Family Support
In December 2011, Anu’s mom’s health deteriorated rapidly following her return to India. On March 5, 2012 she started her dialysis sessions, once every 48 hours, at Yashoda under the care of Dr. V. Suresh Babu, Nephrologist. Later when the decision to go ahead with the surgery was made, Dr. C. Mallikarjun - Urologist and Surgeon, Dr. Hari Kumar the Hospital Superintendent, and Dr. Sanjay Diwaker, RMO teamed up with Dr. V. Suresh Babu. Anu mentions that this team was wonderful. They worked with 'Head and Heart,' says Anu “as did the entire staff who cared for us during dialysis and after the surgery too.”
Soon after, Anu’s husband, my friend Naresh, visited India in January 2012 to take stock of the situation. I remember meeting him and he told me of the situation but I never understood the gravity of the situation. In February 2012, Anu told Naresh and Raoul of her decision to donate her kidney.
"Naresh was more than supportive and so was Raoul," says Anu. 'That was huge and I cannot thank them enough for their spontaneous and unflinching support which took a big burden off my mind. In fact both Naresh and Raoul offered to donate their kidneys too. I am so proud to be associated with them as a wife and mother especially.’
As a donor Anu did all the mandatory prelim tests in the US to check if she was a match. Blood group, CBP, Lipid profile, Urine analysis, Fasting /Post lunch for blood sugar levels, BP, vitamin deficiencies as well as the basic cardio tests were all done and the results were great, maybe a big thanks to consistent, striving Yoga practice in Mind, Body and Spirit?! Anu took a flight to India and landed on March 16.
"By then Mom was on her 5th cycle of dialysis,' recalls Anu. "When I met Dr. Suresh Babu he was reluctant to consider me a donor, as opposed to one of her siblings, because of my age. Only after he knew that Mom’s siblings were ruled out he agreed to consider me”. So the tests were repeated here in Hyderabad along with some others in detail (renal angio etc.) and were all successfully completed by the end of March".
"In the meanwhile Mom was continuing with dialysis which consumed much of our time and also took up a lot of her energy - and money,” says Anu. "It was traumatic to say the least as the dialysis was to be done every 48 hours. We would go to the hospital at 10:30 in the morning and were there in the hospital till 3:30p.m. We’d wrap up at 4 in the evening and come home and in two days we were back again. It was dreadful. It was no life at all for her or anyone there for that matter."
Financial Aspect for Dialysis
If that is one aspect, the financial aspect is another. "Typically the dialysis bill would be Rs. 2500 per day and tubing etc would cost another Rs.2000 per week. The dialysis bill could be around Rs. 10000 per week and including medicines etc it all came to some 40000 a month" says Anu. “You know Hari, everytime I was in the waiting room while she was on dialysis, my life would be put back into perspective yet again. I would look around and consider ourselves so lucky because we found an option to help us out of there. So many of them waiting with me had none at all! There were patients ranging from 19 to 80 something from different strata’s in life who had very little or no options/choices like we did. I sent a prayer of great thanks everyday for blessing us with so much and an even greater prayer for help in any way for the rest in there. Sometimes they would be so grateful to just have someone talk to and who listened to their woes and understand without any preaching, justification or sermonizing, I guess.”
The next big aspect and challenge of the whole transplant procedure was convincing her Mom that the decision made was the most dignified one and the logical solution to the existing problem. Initially Anu's Mom was completely against the idea of Anu or anyone donating their kidney. But Dr. Lakshmi, their doctor friend from the US finally counseled and convinced Anu's mother and she eventually agreed. "The instances of children donating to parents are low, globally, because of several moral and ethical reasons. Many parents, like my Mom, feel that they are aged anyway but the children have a long life ahead, so why jeopardize it for them" says Anu. "But who are we to say who will live and for how long?"
Anu personally feels that even a few years of good quality, normal life for her Mom was well worth the risk. "So once convinced Mom gracefully accepted the decision and was totally involved and strong which helped us all go through the process very smoothly and easily,' recalls Anu.
Legal checks and counseling by the Medical Team
Now that all parties are okay the legal paperwork starts with affidavits from both recipient and donor and their kith and kin that there is no coercion and that the donation was voluntary and not for any pecuniary benefit. On April 5 there was a counseling session with the surgeon, anesthesiologist, nephrologists, patient, donor, kith and kin and the hospital superintendent. "Our friend and Dr. Sanjay Diwakar who was the RMO then, made it easier with all the help he rendered for the legal paperwork especially," recalls Anu. At this meeting the donor and the recipient were informed of the risks, and also given guidelines on how to maintain a healthy life with some minimal lifestyle changes towards diet and exercise to prevent the onset of diabetes for the donor which is the most important thing to watch for after. For the recipient, to help avoid contracting any infections, even a simple cold and cough, that can start compromising the quality of their health. After this the surgery was scheduled for April 16. The surgeon agreed to perform Anu’s surgery laparoscopically, as requested by her, while her mother’s was obviously going to be an open one. Laparoscopic surgeries generally help speed up the healing process and require much less recovery times, making it a good choice for donors to consider.
As far as the transplant is concerned the new kidney is attached to the system without removing any of the existing kidneys (which naturally shrivel up once the new kidney starts its function)- so the recipient actually has an extra kidney inside while the donor has one. "The protocol in the Operation Theatre is, the donors kidney once taken out, is shown to the nephrologist who then approves it before handing it back to the surgeon" Anu recalls being informed. "This protocol is also followed to ensure that the same kidney reaches the intended patient."
Surgery and post-surgery costs
The other significant area is that one has to be aware before considering a kidney transplant, Anu says, are the high costs involved. She says the surgery costs were about Rs. 6 ½ lakhs for them. The donor was in the hospital for about 4 days and the recipient for 10 days. The 6 ½ lakhs included accommodation, the surgical and medical expense involved including an immuno suppressant injection for the recipient that costs Rs. 50,000 per shot. 2 such shots are given. Post surgery the medication for 3 months was in the range of Rs. 50000 per month and after three months it came down to about Rs.15000 per month.
Life after Transplant
For the donor, life after transplant is pretty much normal, bar the usual precautions one has to take after any surgery. All one has to be is a little careful and use some common sense to keep their remaining kidney healthy - stop smoking, consume alcohol moderately and eat healthy. After the surgery, tests are done initially once in 2 weeks, then once in a month and then once in 3 months. "The pain etc are as in a regular surgery - some post operative pain," said Anu nonchalantly. No phantom pains after the kidney is gone!
Post transplant tests
For the recipient, blood tests are done every 2 weeks for 6 months. After 6 months, once every month, and after a year once in 3 months. The medication includes immune suppressants, steroids, insulin for diabetics, ecospirin for heart health and a couple of others. Diet precautions include very less consumption of sodium, potassium, and meat protein. All diabetic diet continues. Weight control absolutely must. One has to be very careful in consuming processed foods, sugar, salt, maida/all purpose flour and oils. "You know," said Anu, "people can go in for multiple transplants, but what are the odds of finding an organ and that to one that matches and also have the age and resources to withstand them. So I feel, you may as well take great care of the one chance destiny gave you”!
Donor patients are good for normal life after 10 weeks, generally, but it could differ from person to person. One needs to keep a frequent check on the creatinine levels with the help of a good diet. That is it! Get back to life!
"How has it changed your life?" I asked.
“Most times it is embarrassing,” she says, “when people react effusively”. She feels that she has not done something great - just listened to her instinct/inner calling and did what she had to do. "I sometimes think we have forgotten the beauty of giving" says Anu reflectively. "So self-absorbed are we that we're so used to taking and taking, especially from parents. I also feel parents should, give children also, the chance when the need arises, to give back to them if they can and want to. ”
There is much contentment and inner peace she says. There is tremendous joy to see her Mom recovering. She also loved the way her Mom accepted the decision "gracefully and with quiet dignity". There is no excessive drama there, just a quiet understanding which somehow made it all so much easier.
How did Niru react to this whole organ donation, I asked. Did she ever feel that you and your Mom would somehow have a closer bond now?
Anu laughs. There was light banter between the sisters regarding that. Niru was much closer to her mother form her childhood and Anu laughs and recollects Niru telling her that this is a conspiracy by Anu to get closer to her Mom now. "But we're like twin souls born 5 years apart really," says Anu. "Always”. “There is a strong bond and connection between all three of us - me, Niru and Mom". One look at them and you could see that.
And then more pensively she says - "If there is another life (time) we'd pick the same parents again."
As for her perspective to life post kidney-donation, Anu hopes to live in the ‘Now’ a lot more. Feels more grounded.
"Somehow I understand and appreciate the current moment more," she says. "In fact after this experience I feel content and at peace. So much so that one of my main worries that used to be, in life, Raoul and his future, does not worry me anymore. I have let go of Raoul’s destiny, if I may say so, realizing I never owned it to begin with. I was just given the privilege to be a guardian for a while. It’s his lot, right, just like mine is just mine!? I don't feel like I own anything except this very moment. There is peace inside that I hope to continue to appreciate and ingrain as naturally as every breath I take. A deep awareness that all of life is well and taken care of".
"Not that I have become a saint or something," she adds. "I’m as normal as can be. Some things and people still do irritate, annoy and/or sadden me. But I am thankful and grateful to life and feel an overwhelming sense of gratitude within for the place I am in, for what has been and whatever shall come to be".
Anu's Mom (Aunty) sat down for lunch. Shobha and I excuse ourselves from lunch as we have to go. I cannot resist asking Aunty a question. What do you look forward to now, since you have a new lease of life I ask. Aunty smiles and says she is looking forward to really enjoying the rest of her life with her children and grand children. But there is more to that I know and that is for another day. But for now, from the perspective of the intrepid, clear headed, if-you-love-someone-show-it-and-to-hell-with-the-world-girl, Anu, we take away many words of caution and wisdom as to what one needs to look for while looking at kidney transplants.
As we leave, I see Anu now, almost three decades after the first time I met her. She has gone through much and become a better person for that - through her own trials and tribulations, her tragedies and obstacles - and handles it all with a smile and an inherent maturity that one always senses about her. To me the act of organ donation, of a part of your body voluntarily, stands high up in the acts of selflessness, a few notches below the act of a soldier in war, in facing up to a real and inherent danger. I can only salute her for doing it and feel fortunate to know someone like her. This I know Naresh and Raoul and so many other friends and relatives must be feeling, because just knowing someone like Anu shows us how to go about life - in an unassuming, direct manner. It certainly makes it easier for us to handle life. Directly and head on as Anu always has.
Much has been the purpose for her life, her learning and all I can say is that I am highly inspired and happy to see her growth, her peace. And of all those around her. One act like this can inspire a whole village! Good show Anu and keep going. Here's wishing you and your Mom lots of health, happiness and joy. And I feel strongly that there is much more in store for you - in the ways you will contribute to make the world a better place.