Tuesday, June 12, 2018

Power of a heartfelt Smile, Laughter from the soul & an energised Hug , Unexcelled !


"What does not kill you , gives you many an ingenious coping mechanisms & a really erratic sense of humour " ! 

If being straight forward, which borderlines on tactlessness, is my first nature,  Laughter is second. I find a smile , laughter within the most mundane , the most serious. To be able to laugh , to spread a smile , to spread joy , to spread love. The ability to laugh from the pit of my stomach , from the soul , without inhibition , is my most powerful Grace

Life, like the graph of a heartbeat, is constant in its inconsistency. Laughter is a physical & emotional antidote, to almost any situation.  Laughter energises. Laughter heals. Laughter is your one constant Blessing.  Smile is the gentle version of laughter. And this is exactly what pulled us towards Positivity. Strength, to handle various emotional & physical turmoil's. An unspoken bundle, of electrified Elixir of Energy. 

A Nervous laughter is a sign of Fear & yet , it's the Fear , which brings this laughter & the laughter that dispels fear ! Dichotomy of sorts ! Too young to be worldly wise, Fear wasn't a part of my Dictionary, Laughter was! Life was an Adventure & continues to be. However, for the rest , it was & is, intimidating. Didn't understand then , now I empathise. What a struggle it must have been to keep that smile , a positive attitude, never allowing me to see their worry or concern. 

A few will say , when you know there is no solution , when death comes- how can one smile , find Humour in that situation? Well, I say from my experience , having seen bits & pieces of a few aspects , and death of someone close - through every emotional turmoil ,  what a Smile ,or  a memory that brings Laughter, can do, to elevate the mood , nothing else can ! And that mood ,  in a very tiny way, builds Positive Atitude & a Hug, builds an Emotional Fortitude! Seriousness has a way of being hidden in humour, lighter moments.

To make sure, that none of us, were caught in the trap of emotional fatigue , everyone & everyone , brought along a strong spice of Effortless Humour to enhance every dish , that came our way. Many a negative agitation were kept at bay, for each one of us. We all learnt individually & from each other , to enjoy the Good Moments & find a smile through the most (not all, that is tad difficult) Challenging stage's.

 Six months approximately, is a long time, the hospital becomes , a second home. A peek into a time , when all looked bleak & yet we stayed afloat, with an Attitude that spelt intrepidity. 
The Universe neither Blesses you nor Punishes you, It only Responds to the Vibrations of your Attitude.- Abraham Hicks 

·        Recreating my room in the hospital, with toys & posters, gave me a comfort , lifted our spirit , which was so needed, to overcome my various medical issues. The only room, which looked different, had an energy of its own, from which, floated a constant flow of laughter, conversations &  music ! Oh yes , permission was taken by my parents, however, we ( the kids)  thought it was a big secret , with the Doctors & Nursing staff , humouring us , by pretending not to notice !    

·        Music has it's own healing power. I listened, I sang along & music made the pain go away! That everyone wanted to gag me coz of my croaking , tuneless voice, is another matter altogether ! Sketching became a Hobby , which led to my having one exhibition - that , i stuck the sticker of Sold on all the paintings , became a major laughing matter is, well , still a laughing matter  ! 

·        To watch a movie with the ward boys, in the night or afternoons, when most of the hospital was asleep, or work was at its minimum, had it own moments of nervous laughters & secret smiles. 

·        Shakir, with a dead pan face , walked in one day with his hair styled as Mr T & the next day , he had shaved his head. The expression on everyone's face was to die for. He brought along a comicality, which was unparalleled! We kept the illusion intact for a while on most thinking , he was a Bollywood star !

·        Uncle Rony walking in with this huge Teddy & being directed to the maternity ward - who would think that he had got this stuffed toy for a 19 year old ! 

·        Shoeb & Vicky ( in their mid teens)  , waging a war , to donate their blood & kidney ! being pacified by family & Nursing staff - Some sight that was ! 

·        Winning a bet & actually getting ₹100 out of Dr Gandhi on an India Pakistan one day match , was the talk & smiler for quite a while , with Dr Gandhi , for once , giving a sheepish smile ! 

·        While I was in my semi coma stage, I came up with statements,  very profound & spiritual in nature. My Nana , who had made notes of these, decided to read it out to us , once I got better. Here he was being serious & we were having the most difficult time keeping a straight face . Those words from me , impossible. After which he went around saying - She is a Devi at most times & then, she adds the L to become a little Devil ! 

·        After the transplant , for a few months, I had something called Kulthi ( Horse gram) water , Grandma recipe of benefits ( which suits only a few , so best take with caution ). The person designated to give me company & make sure I drank the same, was given to Gogi. It was no laughing matter then , but today, it's a memory that brings laughter & I can use Kulthi as a threat , to get my work done ! 

·        At every given time , there would be some celebrity ( specially actors )  at the hospital for some ailment or another & their (actor) visitors. Still remember Ashish, playing Hide & Seek , with the security since he wanted to stay the night, spend time with Sunny Deol & meet , his all time Hero, Dharmendra ! What a drama !  While my family & friends were interested in meeting & interacting with the actors , I would have them come visit me ! They wanted to meet this, tiny person ,one of the youngest patients, full of energy & laughter - considered by most, as a goner ! I became the Unlikely Star  !!

·        Doing a wheelie on my wheelchair with tubes hanging all around me, walking around at 12 midnight to wish, Happy New Year , to all who were awake - was in character .  Spreading positive energy , sharing a smile , giving pep talks to a patient or just elevating their spirits , became my duty !

Thus , Life has continued. One day at a time, a cheer, a smile , some Laughter & loads of Attitude ! Like a wise one has said , " Keep Smiling. And one day Life will get tired of upsetting you !" . Life is good ! 

Every individual has their own Laughter & Happiness Quotient. It can be spontaneous , cultivated or just needs to be resuscitated, every so often. Laughter,Love,Happiness are your Shadows, always with you, they find you .....  Life shows you every emotion - choose yours ! 




Saturday, May 26, 2018

Intelligence & Emotional Quotient (IQ & EQ)

*Feedback from our experience is essential , either to us or by us, that's what empowers.* 

A piece of information , that I got to know about , just a few days back. On receiving the book, Kidney Warriors, Sharmi ( my friend forever, who never left our side for the entire time that I was ill, was my mother's shadow) , sprung a surprise on me by saying ," Just before the surgery , I distinctly remember , we were told , No matter you do a transplant , graft survival is only 5 years !" . I cannot imagine , what my family & friends would have gone through at that time.My parents do not remember this ,Sharmi does - sometimes a memory stays with you , no matter what. And in Richatd Nixon’s words, " The finest steel has to go through the hottest fire !”

Any ailment concerning the kidney , is a jolt. Always takes you by surprise. You do not expect it, it's not somethings you asked for, it's not something you planned , it's not always because of an unhealthy lifestyle, you do not choose it ! The reasons at times are unknown,  some - one can guess & a few - known. It's only once the ailment traps us, that we look back , on what we could have done to avoid CKD . There is no escaping a Disease, any Disease , that corner's you & CKD steals the show, in every which way! 

Our entanglement with CKD has shown us the close link between the EQ ( our ability to understand our emotions as well as others ) & IQ ( our intelligence, rational thinking level ).   An assimilation of a few crucial aspects of both.

Information (IQ)

Information can confuse. In trying to gather every aspect  one tends to get side tracked from the main topic. Abundant knowledge will help initially , however , it still plays second fiddle to one's experience & the wisdom that one gains along the way. One begins with the Diagnosis , finding the right Doctor , the right Hospital, the Treatment.
These 2 quote's best explain , what I want to say ! 
"Do not seek Information of which you cannot make use." - Anna Brackett
"The result of information overload is usually Distraction, and it dilutes your Focus and takes you off your Game." - Zig Ziglar

Dialysis & Transplant (IQ)

If you are lucky & the exact diagnosis is done at an early stage , the situation with the right treatment can be reversed. Else , your only option is Dialysis & then Transplant. 
Dialysis, is painful. It's tiring. It restricts your everyday activities & diet. It's time consuming. Atleast that's how it was for me . A few with their endeavour's , have a different opinion, prefer Dialysis.

The next option then is a Transplant, for which one needs to consider , Donor , Finance & general health of the Patient. 
General health , will decide when the patient is equipped for a transplant. 
Second step is finding a Donor. As of today , the restrictions, the policies , have become so stringent , to get an approval from the right channels , has become a task. Time , patience , financial strain & endurance is tested.  Options are either find a related or unrelated willing donor & the other being, register yourself with the government registry department or NGO's & wait for an availability. 

It's EQ, from here on –Donors,Family,Friends,Care Givers .

When it comes to speaking with related & unrelated Donor's , be patient. With limited knowledge of organ donation, fear of loosing an organ , apprehension on life beyond the surgery - is difficult to comprehend, even for the most knowledgeable. If there are multitude of emotions at play for the Donor & the family, the scenario is the same on the other side too. A willing donor saves much anguish.  If not, begin communication with a few. Your own conviction will play an important role for them to empathise & even think about becoming a donor. Don't Force. Be gentle. Communicate the urgency with enough information , which will justify the need for a transplant. Cold as it may sound, you need to justify your request for organ donation. And then hope & pray , for Donor compatibility / kidney match.
One gives a gift, the other treasures & respects that gift forever.

We talk about patients & I am one. Being a patient one has been through a trauma , however , please, do not undermine the stress ,the decision taking,  the concern , the complete turmoil that is faced by the family members, the Care givers. I have been a witness to that , a witness to the stress that my Mom underwent, my Dad with his unspoken anxiety , my sister who's teen years got lost with the mayhem caused by my illness & attention I got. While the patient's concentration is their own well being, adjusting to the  various physical & susceptible aspects - for the caregivers, it's not only being vigilant about every aspect of the patient , it's also keeping their own emotional balance. It  is an exacting responsibility. 
They too learn on a daily basis. They too need a shoulder , they too need to share their concerns & how to deal with their issues , be it with Counsellor's or other care givers. 
My extended family , my friends - my blessings. They helped me grow, be the person, I am today. No matter , the side effects of medication played its role, they always uplifted me. Never a dull moment with them. They continue to spoil me, pamper me, take me with a pinch of salt , allow me to be who I am, accept me the way I am. And so, Care Givers & every extended support system, your contribution is unparalleled, This toast it for you all !

Be it on Dialysis or Post Transplant, one adjust & moulds to every situation. No Blinkers ! Daily trials and tribulations don't put a stop to your life ! That's such a part and parcel - it's like breathing. Life happens beyond that ! Precautions, Hygiene, Diet, Work outs, Restrictions & some , becomes a part of you! And like Shillpi ( post transplant, 7 years ) said, "Yeah sometimes it suffocating too , but it's okay not be okay sometimes !!! The day as usual day starts with gratitude and ends with it." 
Edit your life frequently & ruthlessly.It's your masterpiece after all. – Nathan W Morris

Have Faith in yourself, Don't Give up ! 
No one gave up - Death wasn't an option. A thought which never crossed anyone's mind except during medical discussions. All the was on my getting the best treatment, my recovery ! Never Give up ! Like someone has wisely said , " The Universe always falls in love with a Stubborn Heart ". I had one, so did my entire clan ! 

Along the way  ......

*I definitely have the Hygiene & Infection phobia!!! Having said that, in so many years post transplant , no one even notices the restrictions or precautions I take. It's subtle , discreet & if noticed , it is taken down to my being very demanding ! :) 

*Swimming in a public pool is still a No No. However , if & when comfortable with the disinfection , I do get in the pool ( which has been fairly recently ) & its dog paddle for me ! (Dog paddle is a  safe and fun way to move around the pool while keeping your head above water)

*Every day is a new day, keep re-inventing , keep adjusting , keep within the restrictions which is for your own longevity.


* Be it Diet, Medication or Information , the Placebo & Nocebo Effect takes over , specially the Nocebo Effect , when Fear is involved ! With Diet & Medication , the effect can be either , however with Information ( specially Negative)  , its normally Nocebo - the Mind plays a very important role on how your Body reacts ! To be Positive is the right Attitude !
Placebo is when a positive effect is seen in the study group when giving a known "non-effector" (meaning it is a substance already established as having no effect), whereas nocebo is an aggravation of symptoms or negative effect seen in the study group when giving a known "non-effector".

Some informative links ......

Transplant in the 80's wasn't as taxing as it is today. Post 1994 , it took on a new turn, due to the state of affairs, relating to organ donation. Laws  made easy & yet red tapism comes in the way of smooth implementation between NGO's ( advocating Organ Donation ) & Government bodies.

The law -

The Government bodies -

A US based site , which is an interesting read, we need something like this in India. 

Hummmmmm.......

Iran Organ Drive regulated by Government 

Donate ... Register ....




Saturday, April 28, 2018

Side Effects to Watch out for, Post Transplant !


*I am ready - neither Death nor Life can scare me. Death is part of Life & Life is all about Living!*

Let me begin by a message that I received from Sejal. She is one tough woman, has gone through her own issues, continues to fight & survive with a smile ! 
" You are the first person I met after my transplant in 2003. Just in awe of you since then. Been so many years but I still remember the one thing you said - The only way to thank the Donor is to Respect the kidney they gave you ! It was so difficult to understand then. Today it makes sense. " 

It makes for the most logic sense then , for me,  first to mention , my Nani , my Donor & her recovery. A generation that believed in a healthy lifetstyle , she was back on her feet within 2 weeks. A strong woman , full of grit , she was ready to get on the table & clean the fan. That's her. Strong & how. She was around 60 years , when she gave me the Gift of Life & passed away healthy & happy at the age of 90 years.That generation was a power house.

On the other hand - I was moving along in slow motion. The side effects of the medication began to take over my body , constantly surprising me , confusing & keeping me on a razors edge , wondering - what next.

As mentioned earlier. Hygiene & diet was prime. My room had been fumigated by the hospital & I was in isolation for 3 weeks. The next 3 months , one visitor per day , for no more than 1/2 hour. Both patient & vistor had to wear a mask & I began going to Marine drive for morning walks! Slowly the number of visitors increased, I started moving around the house,discipline & routine of Walking, 3 main meals & 3 snacks , medicine on time , rest & hobbies ( reading, music, painting & such ). 

For a little more than a year, wearing a Mask, in the house ( when many visitors) & outings , became a second nature to me. To be seen with the mask, while stepping out of the house, was another ball game. Call it attitude , call it being vain - I was not going for my daily walk  , or any other outings , with a mask. That was just not happening. So, I became a designer. I would tug part of a scarf into the mask, throw the rest across my shoulders, revealing just my eyes! ( Much like girls on bikes, who  cover their faces with scarfs, to protect themselves from pollution & sun- I began that eons ago ). At times, I would pull the scarf at the nape of my neck, tuck my hair in & make a bun . My new avatar was named, Bandit Queen ! 

Heavy dosage of medications gave a new meaning to issues I had taken for granted -

Appetite & Weight , I have mentioned the details on my earlier page , surprised me. I always had a good appetite ,the medications however increased it to .... twice... thrice the quantity ..... Looking back, it is beyond my imagination, how my appetite had increased ! Weight increased at a steady rate till it decided to stop at around 70 kg! Had diet been lax,I had been a sweet tooth or given walking a skip, lazed around - I would have touched 100kg or more! I was Round like a Potato , nothing symmetrical & yet Round ! Therefore, when i read about a few post transplant loosing weight , i was more than surprised ! 

The Hump : at the back of my Neck (cervical vertebrae ). Was a gradual growth & later became big enough for anyone to hold it in your palm. I called it the Camel hump ! It is there even today , however , has reduced in size ‘ that’s a relief. Had to wear full collared / Chinese collar shirts , Blouses , to cover the hump. Today , I am use to it & not so conscious! 

Skin - flawless & radiant, it did an about turn. A simple statement by my sister, will be a classic illustration. " Didi , your skin looks & feels like Godhi Chamada  ( Monitor skin). In simple words, coarse & dry! Possibilities that constant moisturising ( Oil, cream, lactocalamine) of skin might have helped the skin getting worse! 

Hair was a catastrophe! My hair was loosing focus & growing wild! Facial & body hair, was unheard off - And , the kind of thin invisible skin colour hair , was changing to Heavy growth , thick & black in colour ! I could well twirl my mouschtache & shave my beard ! Most body parts ,was the same scenario. However, hair on my head , that started to deplete ! Ridiculous ! Shouldn't it have been just the opposite ???? Have I exaggerated , maybe I have, nevertheless, for a 20 year old, that's what it was! 

Women go through their additional issue of monthly Menstural cycle/ Mensturation / Periods/ Chums - a woman's best friend! Why do I mention this - well, the side effect was such, that my cycle decided to take a rest & my Chums decided to surface after more than a year. Interestingly ,it not return with a vengeance of having taken a sabbatical. When it did come, the kind of heavy bleeding,  stomach cramp & pain , wasn't to the same degree as before. This is one side effect , I have no complains about! 

The restrictions & with my very protective parents , 9x5 Job was out. Working where hygiene was an issue was out. Basically working out was out ! 
So , I dabbled in various projects. From designing clothes , being an Artist ( water colour is my favourite medium ) , running hobby class for kids , just being the Boss's daughter at Moms parlour , to working with my father in his spinning unit. Life was spinning ! 
Seven years later, on Mom's cajoling I went and gave my IATA exam , worked part time with friends , to learn the ropes of running a travel agency & took off on my own. 

Have been a - Voice your thoughts  person, since I was a child. Very straight forward , mistaken for being rude, not one to take any wrong without an outburst - my  being annoyed , short temper after my surgery for a while was taken with a pinch of salt , as me just being more precocious & spoilt! Slowly , realisation with experience that , my tempers were a side effect of the medications. Point being - we didn't make a big deal out of it , was just a process of growing up !
It 's only in the recent past that one has read up & understood the implication of a surgery, medication & how it effects your body & mind. The restrictions imposed , physical changes , chemicals that effect your brain & more ,  play a part in the subtle changes in one's behaviour. 

Once the mask was off, I started to take short Trips within the country. Visits were confined to places where family & friends lived. My routine not broken, hygiene maintained, diet balanced. Life got to a normal routine & I was ready to take a longer trip, outside the country. I still remember ,Dr Gandhi, being very clear- with hygiene being a top priority , it was UK or Europe , rest of the countries were a complete No No! So, London it was & we stayed at my Masi's for a month

Over the years, Steroids have been reduced & today , it's on a bare minimum dosage. Appetite, weight, skin & hair , have come to normalcy! Been a continuous correction process , no more unwarranted looks & people recognise me ( which didn't happen for the initial 10 -15years after surgery).

Do not loose my temper as easily as I did before , however, even now , when I do , I am not sure , if it's my normal self or reaction to so many years of medication. 

Ladies, no one was allowed to apply any products on my face, no taking any chance of a reaction coz of the medications ( home remedies only). The facial hair came & went on it own with the tapering of medication ! Maximum was waxing ( legs & hands)! Yes, I do wonder, had I cut my hair real short, not gone wild dyeing my hair with all the left over colours ( Mom had a Beauty parlour,then) , would my hair have managed to stay as healthy & thick ..... maybe Yes, maybe No.... an answer , I do not have!

Travel has become a second nature to me. To be a part of the city , capture moments in pictures , create memories. 

With my experience's , constant learning on a daily basis , how to accept & lead a normal life, inspite of the transplant , to live life to the fullest , the following  quote's  best explains my Present! 

" Life can be only understood backwards, but it must be lived forwards." - Soren Kierkegaard 

" The past should not drag you behind, the future should not pull you forward. You must be fully concentrated on the present, on what you are doing. You must be so concentrated on what you are doing that it is as if the salvation of the world would depend only upon your work." - The Mother

Reminder !

The side effects mentioned might not be a replica for all , some are classic's & some might just be specific just to me. As mentioned earlier, reaction is individualistic. Some side effects disappear. some loose their strength & a few , due to Long term use of Immunosuppressant's, remain with us , in some form or another, for the rest of our lives. In my case, my Memory wasn't the best & isn't getting any better. These days, any work that needs to do , is penned down immediately, in case I forget ! As such , with age , Osteoporosis is likely to effect us , with long term use of medication , it is definite. Twisting of my ankle or knee happens often , muscle pull , hairline fracture once & I have become extra careful with my footings  - walking, getting up, turning & such. Uneven weight distribution - that is a bummer , no getting out of it though! And , there is Spinal degeneration, on account of which , I have become marginally shorter in height , with passage of time. Posture, exercise, yoga, workouts are essentials to keep this in check. Calcium deposit / Tartar deposit is another phenomenon that occurs frequently. Mostly the deposits are brown or yellow , Mine though ,is black in colour , most likely a reaction of medications with tartar. Oral care is extremely essential to your wellbeing for all Health aspect. Do not neglect Dental care,go to the Dentist atleast once a year. Neglects & you might just be inviting other medical issues!

Repeat I shall, from the day of my surgery till the day I die, no matter , I am at home or travelling or at a party - I maintain the dietary restriction & hygiene is always a priority. When I am not sure about a meal when travelling (short or long distance ) or visiting someone , I always carry water, banana , biscuit & dry fruit , as a precaution. For more, please go through the write up on 3rd Nov, Information. 
Weight can wait, Healthy diet & Lifestyle cannot! 

Information:

Godhi aka lizard aka Bengal Monitor : https://en.m.wikipedia.org/wiki/Bengal_monitor

Osteoporosis : Bones become fragile due to lack of calcium. Brittle Bones, fractures are to be watchful about. Calcium supplements & diet control can control the weakening/ disintergration .

Spinal degeneration begins with spinal cartilage, either in the discs or in the spine's facet joints. It involves the gradual loss of normal structure & function of the spine over time.

Long term & basic side effects of Prednisolone
Increased appetite, fluid retention, weight gain, increased blood sugar (which can lead to diabetes), change in body shape (increase in fatty tissue on the trunk while the arms and legs get thinner), increased susceptibility to infections, acne, thinning of the skin, easy bruising.( Except for Sugar, which I haven't got as yet, the rest, I do!) 

Depression:
I wouldn't call it Depression , to begin with. Mood swings & such are side effects of medication. With my experience, let's just say, it's adjustment of body with the chemical reaction to the meds , physical changes & restriction's imposed. We tend to react differently to all this. That's when support from family & friends , help you settle / heal . Instead of getting upset at the change in behaviour , they recognise it as temporary & become, Emotional anchor's. For example - No matter how Fat & Ugly , I really looked , no one ever made me feel that , I was simply Special! Or a time when I looked so old , that a few people mistook me for my sister's mother & her 2year old son's Nani & you had to see my sister jump to my defend and scare the lady away. That's love , that's support
A positive Attitude , someone who doesn't let anything pull her down , ready to face any challenge , Humour & Laughter , Hobbies - my Spiritual family background was a Grace, Blessings from the Guru's, elders & innumerable individuals , helped my recovery on all fronts.
Also, as in the case of Sejal & so many others ( like Dr. Gandhi ensures & other nephrologist's too) , meeting other patients & their families  , going through or have gone through the same procedures & predicament's , how they are dealing with it, is the Support that's so important. Also, as quite a few hospital's are ensuring, Counsellors speak with patients, gearing them for the present & turmoil ! 
It's when this does not happen , that it takes on a larger platform & can be labelled under Depression ! Awareness, Recognition, Acceptance & Ability to Move on ( working with & around the symptoms) , are the keys to beating negative emotions !

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 ! 

Really?????!!!!

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! 

*Acknowledgement* 

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.  

Information 

Donor Compatibility:

Pancreatitis:

Hemohrrage: 


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

Dialysis :
Dialysis line -

Haemodialysis 

Peritoneal 

Gastroenteritis

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, https://en.wikipedia.org/wiki/Hanuman_Chalisa
Nana: Mother's father
Choudwar : a small town near Cuttack, Orissa

Dr M K Mani : https://en.m.wikipedia.org/wiki/Muthu_Krishna_Mani