Monday, February 26, 2018

"Bring in the past only if you are going to build from it." - Domenico Estrada

I will do a fast forward on the happenings from 10th July to 21st November 1986, the day of my surgery/transplant. 

Straight onto the surgery room , and Dr. H . Manchanda begins the procedure of inserting a Dialysis line, under local anaesthesia. I still remember feeling uneasy ,  while the catheter is inserted & my chanting the most tuneless Hanuman chalisa, to ward off the pain & discomfort.  That experience still traumatises me , apart from few other's in the following months! 

The procedures in the ICU ,for removal of excess body fluids & waste ( toxins ) from the blood,  continues for around 36 hours.  The medications have made me woozy. Strange as it may sound, on the occasions that I do surface , I get a feeling of being in a science fiction movie, what with all those wires, tubes, machines , hooked up to me, being enhanced with the effects of the lights, nurse's in white as floating apparition. Being the sci fi buff, I feel pleasantly at home. My first proper vision once my head is mostly cleared  , is that of Dr. Nitu Manke ( Cardialogist), watching me intensely , through the glass partition, twirling his huge moustache, wondering if my heart would survive this ordeal - that's a memory etched!

While a drama of making sure I make it, inspite of my extreme serious condition, was unfolding inside the ICU , there was another happening outside. My parents are being updated with my medical condition. Water in Lungs, swollen Heart ,  Liver & a complete Renal failure. The kidney size is like a child's, very small. Has the kidney stopped working due to shrinking caused by  some trauma/ infection or did it stop growing after a few years, is anyone's guess. Shape of the kidney & the clear surface, did have a story to tell. Cause would have been known, had a biopsy been performed. 

There is complete disbelief & confusion outside the ICU , but inside, I am blissfully unaware. My treatment is taken care of,  by the best , in each department. Dr B Gandhi , takes over as the nephrologist. State of emergency amongst the immediate family & friends. The medical professionals within this circle, gauge the situation. Major discussions follow, with Dr B Gandhi at the helm, on line of treatment. Basic protocol is to be followed, Fistula, Dialysis, Transplant

Fistula is done once I am out of the ICU & I go for my first Heamo Dialysis. That & all others to follow are nightmares. I am constantly throwing up , uneasy & in pain. An experience which I would like to forget ! Due to this, the decision for transplant at the earliest is decided. The scrutiny for a donor has begun. 

Once I am discharged from the hospital, the dietary restrictions come into the foray.

Faith is a very strong tool. God, Blessings, Prayers are integral to our family. Blessed in abundance by spiritual Guru's who have been a part of our growing up years, with my Nana , a Goddess Kali devotee, we do have a very strong armour of protection. While the spiritual & religious practice of fasting, visiting temples, churches, temples, lighting an Akhand Diya at the Choudwar temple, reciting of the Hanuman chalisa & much more has begun , not only by my parents, but many a family & friends. Many an oath taken for my recovery. Miracle is simply the amalgamation of positive energy.  I am that Miracle, who survived every medical emergency that came my way. They don't call me cat without a reason, I continue to enjoy the few remaining of my 9 cat lives! 

Much against my wishes & discomfort , I begin Urine therapy ( Morarjee Desai, being the man behind the concept then ). What all a man does … hope against hope , that the kidney shall revive without any surgery!!! "Hope is being able to see that there is light despite the darkness." - Desmond Tutu 

On the other hand, discussions on my transplant, on the donor, the hospital , has all begun in earnest. From consulting Nephrologist in the US to London, to my personal visit at the Apollo hospital , Madras & meeting Dr.M K Mani, the census between the doctors & family has been reached. I am young, need my people around me, need to be in my comfort zone & so, the surgery shall be done at Breach Candy hospital , with Dr. Gandhi continuing to be my nephrologist. 

Focus shifts to the donor. As explained to us, same blood type & immediate family are first choice, with multiple tests to match the kidney. And so, in generalisation , it is, 100% match is of twins, then siblings with 75%, parents with 50% , anyone else, would be from 25-50%. Parents are the immediate choice. First choice is my Dad, same blood group, however , he has diabetes. Mom being a universal donor , with O+ blood group , is then the one. 

However, it's best if donor is same blood group & feelers are sent across the board. None come forward, for obvious reasons - the lack of knowledge , the fear of loosing an organ, lack of support from immediate relations. The one's who come forward , are kids from my extended family, who will go any lengths for me. All of 15-18 years - ready to donate their kidney! In a way it is a circus with everyone giving their own suggestion, however , this entire dialogue comes to an end , when my Nana says, it shall be my Nani ( same blood group), who shall be the donor. Tests done & She is the perfect match , in every respect.  They have the healthiest lifestyle. My Nana takes my Nani to Chinmaya mission, Powai. They stay there for a week before the surgery , building mental strength & spiritual energy, a well as a cleansing process for the body & mind, making sure the kidney is not just a match , but a twin to mine.

Date for the surgery is set for 21st Nov. As we begin to count the days, 2 medical emergencies rock our boat. 
Its my 17th Dialysis & I collapse on reaching my room. Rush to BCH, immediate tests & a case of acute pancreatitis is diagnosed by Dr. Karlo. With the symptoms clashing closely with my reaction to dialysis, no one suspected an inflamed pancreas. With treatments quite the opposite , difficult task for the doctors to maintain a medical balance between the two organs, Private day & night nurse are appointed, to keep a constant watch for any emergency & they go home with me. Sis Tampal, the day nurse, stayed with me , for a little less that a year. She was a tough one, when it came to my well being & would take on anyone, if she thought there was any room for error on my daily routine. My melodrama went to deaf ears, with her - an absolute sweetheart! 

I was back in hospital , with the next emergency. Blood in stool , which just wouldn't stop. A round of tests & the diagnosis by Dr Desai & Dr Agarwal is, Hemorrhage, the blood is not clotting. No medication works. However , there is an injection , which if injected immediately, will help clot the blood immediately. A miracle drug of sorts. To get this drug , which is rarely required , is next to impossible to get & even if one does manage , it will be too late. Just when all hope is lost, a ray of light. A patient who had asked for the same injection does not need it anymore. My time on this Earth is not done, as yet! 

Amongst all this , there is also the time at the hospital, when all veins collapsed, impossible to put in the intravenous injection , the nurses have tried every to find a good vein on my hand & leg. Resident doctors try, nothing. With drips at a standstill , situation is critical. I have lost all sensation after all the umpreenth puntures , And my father looses it. He throws everyone out of the room. No one shall touch my daughter, no more pain for her. Let her die. And then , Dr Mangal Jain comes , a young resident  , who requests my Dad for one last chance. One last attempt , Dr Jain manages the Neck IV, something no one else had attempted due to its varied complications. The drip starts. Life falls back to normal! Dr Jain is God sent! Dr Mangal Jain ( Consultant Intensivist & Physician ) , continues to be my physician & the one who constantly guides/backs me in case of any emergency.

Dialysis continues , every alternate days , and date for transplant set for 6th Nov, has to  be postpond to 21st Nov,since report are not 100% perfect for surgery.

18th Nov, Nani & I are admitted to BCH for surgery on 21st Nov. Dr Dastur & Dr Sonawala, are the surgeons. Surgery goes off withou a hitch. While Nani goes home after 3 days , I get home after 3 weeks at hospital under strict supervision & complete seclusion, for fear of infection , no visitors allowed in my room, we can watch each other & through the glass door ( nurse & doctors wore a mask when the came to see me, or I wore one) , strict diet, innumerable medications. 

Within a week I am back in hospital. Case of  loose motions & vomiting. It's  Gastroenteritis , Although serious, all comes under control. The reason for the same is a mystery. My family refuses to take me home. They want me to spend the last few days of 1986 at hospital & begin the new year on a happy, healthy note. And so, 1st Jan87, discharged from hospital. A full year of saga has come to an end . It time to go home. 

Miracle !

Every small gesture of care, love, blessings, support in many a surprising myriad ways & much much more , from family , friends , total Strangers - are all Miracles . Faith , that every so often takes a beating , is restored when we recognise these simple Blessings. It can never be forced on anyone. Its Elusive & still the most accessible. It finds its own way towards you. Like i say always , " The one up there is always with me. The Grace & Protectiion of my 3 Men ( Hanuman, Ganapati & Shiva ) & Devi , without whom nothing ticks , made me this Tough Intimidating Individual ! 


Inconcievable levels of BUN @ approx 40 & Creatinine @ approx 400 , that my case was a disaster waiting to happen , would not be off the mark. 

Interesting fact that we got to know later.  Sis. Tampal had been warned by other nurse's to stay away from me , since I was a complete gonner , no chance of survival, there was no point taking on a patient who was going to die any day& wouldn't be good on her Resume !!! However, Sis Tampal believed not only in herself,  but also on the power of God. And she knew I would survive. Not only did she join, but convinced the night nurse to come on board. 

The patient who did not need the Hemorrhage injection, was Smita Patil, the actress , who died that day , leaving the medication for me !

There was a time when I was kind of comatose . 3 days of my life which I was here in body only ! Quite a stir I created then! 

After the surgery, I had to be kept in a room near the ICU, for 24 hours, since my heart had decided to slow down! 

From the day I was diagnosed till the day I eventually went home after surgery , Blood Transfusion was needed every so often. There was a long list of B+ blood group , ready to donate blood at a minute's notice. The number of Units of Blood , from individuals belonging to different religion, faith , gender, age group, culture. social strata - make me the Perfect example for National Integration!

Today , there are stages of CKD , and with awareness on the rise , many know. However , we had no idea ( maybe then , this categorisation had not been done ) , and Mine was the last stage any ways! BUN - 

I had none of the classical symptoms that relate to Kidney failure

Diet is all about Balancing a healthy lifestyle. Eat everything.  In moderation. Hygiene being an important aspect. Your blood report are a good indicator on the suitability of  your diet/ food habits. In due course , you also begin to understand the demands of your body.What we were not  made aware of & has come about with the passage of time, trial & errors - that one needs to Exercise , lift weights , balance protein intake , which is a major requirement , making sure that loss of body muscle is minimum & your bone density in within range , that one is doing all they can to keep building it. Medications, deplete your muscle - wish I knew about it , some of my diet would have been around that & I would have begun exercise & weights after about 6 months to year , after transplant ( a fracture & constant spraining of my ankle , is what got  the issue of Bone Density to out notice) . Muscle helps protects the joints & bone, against all this. 

People tend to misuse the independence given to them. We need to be Responsible . Eat right. Always take precautions , a few restrictions should become a part of your every day activity. Calculated risks are allowed , even so , always be watchful! 

Much of this , I have already mentioned on my earlier page on Diet & Excercis.

Urine Therapy & all such ( naturopathy , etc ) , is fine initially , take a chance with alternates. However, once you get to the final stage , don't take any chance , stick to Allopathy, with alternate treatments as a support! 


It was all on the complete belief & convincing on the part my Uncle ( Dr Satya S Das , Microbiologist ) in London , who insisted on the family & friend's support at India , that my surgery happened at Bombay.  


Donor Compatibility:



Fistula: A fistula, an access made by joining an artery and vein in your arm.

Dialysis :
Dialysis line -




Neck IV: An intravenous central line is a kind of intravenous (IV) line used to give medicines and fluids. It is a thin, soft, plastic tube called a catheter that is inserted through the skin and into a vein. It is usually put in the neck or chest just below the collarbone. 
Injecting in the neck has been related to adverse health conditions such as deep neck infections that may develop abscesses and related complications such as haematomas, airway obstruction, vocal cord paralysis, wound botulism, extension of infection to other structures, pneumothorax, mycotic subclavian carotid artery.

Akhanda Diya/Jyoti: A wicker lit in a Diya filled with Ghee ,should not be extinguished by itself or by someone, which means it should be lit through out the prayer period which may be more than 24 hours. Japa/Chanting, done in front of a akhand jyoti is 1000 times more effective. Akhand Diya, represents your unshakable and unflickering faith towards your deity. 
Hanuman Chalisa : A significant holy Hymn,
Nana: Mother's father
Choudwar : a small town near Cuttack, Orissa

Dr M K Mani :