Travelling with Discipline , Eating with Caution - a Key to good Health.

To travel or not to travel or how to travel , that is the question !

"Work, Travel, Save, Repeat"

This should be the Mantra for all of us. However, today we focus on Travel. Being someone with CKD , travel can be quite daunting with the various restrictions that are imposed on us. There was no travel in the few months while I was on dialysis except to Madras , which was an overnight medical related , to meet Dr. M.K. Mani at Apollo Hospital . Post transplant, travel began , a year later ,  at a slow measured pace within India. Two years later ,  we were courageous on venturing Abroad , as was Dr.Gandhi, with my progress. He was very clear though  , since he was confident about the hygiene & quality of food , in Europe , I could go there. Since then, travel has picked up momentum with every journey.

Life - It will never be perfect , make it work ! And that's what one learns with every expedition. Its easy to say, Throw caution to the wind, but the question to ask yourself is - is it worth it ? Over the years , my experience has taught me to be Responsible. " Calculated risks " , that's the call ! Every trip has taught me something , which is why , travel today is a piece of cake . No trip is intimidating , it's always an adventure , a memory to be captured in my camera. Following is an amalgamation of a check list that I have formulated, helps me travel unafraid.

Packing , travel begins the minute you begin packing your bags! Always make sure the following are organised before you leave for any trip.

Handbag ( with you in person at all times)
*Medicine : one full strip of every life saving medication, that you take on a daily basis ( Steroids, BP, Diabetes , etc)
*Sanitizer & a small bar of soap / soap strip
*Snacks :A small bottle of Water , Biscuit  packet/ snack bar , small pouch of dry fruits ( to munch on, in case hunger pangs hit )

*HankyTissue packs

*Prescription of your Doctor , incase of medical emergency while travelling 

Suitcase
*Medicine : The quantity of tablets/ medication ,depends on the number of days that you are travelling for , then , add an extra weeks supply . A packet of some Basic meds : fever, cold, sprain, body ache, headache, allergy, electoral powder ( in case of dehydration ) , loose motion, vomiting, motion sickness . 

Once you have hit the roads, be it a holiday or for work - one needs to be attentive to these main elements -

*Eating : No salads , Only hot food, No fresh juice ( unless absolutely sure about hygiene), Fruits wash with filter water , Wipe plates & all cutlery well before using. Incase , worried about the next meal , best to carry packed meal, either from home or hotel. ( Paratha's, Thepla, sandwitch & such ) 
*Water : Filter & boiled if possible or a good reliable company mineral water. Buy these , as far as possible from a Chemist  
* Toilet/Washrooms : ~Make sure its clean , indian style toilets are more hygienic. At times its easier to relieve yourself in the wild , than a filthy washroom.~ Sanitize the toilet seat before you sit ( wipe it clean ).~Wash your hands properly once done , hygiene , remember is , Priority !  

*Alarm for Medicine: We all carry a smart phone. Depending on when you take your medication , always set an alarm for each day . Put it on snooze & stop the alarm ,only after you have taken your meds. 

*Electric Water Kettle : Request the hotel to place a water kettle in your room , if they haven't . Most convenient to boil water. Also , if you are staying with family , Boil the filter water.

*Chef: Either restaurants or hotels, always speak with the Chef & specify your diet essentials. More often than not , they will always heed your request. 

Incidents/Situations, which are valuable lessons -

*We were flying to Nairobi. The KQ flight had a technical snag & we were moved to a hotel for the night. Next late night, we flew to Nairobi. On arrival, my bags were missing. I got my bag the next day. The reason , I mention this episode - had I not kept the strip of medicines in my handbag , there could have been a medical crisis for not taking my medications on time.

*Juice : Sugar cane juice be one of my favourite. And have had it a few times by making sure I cleaned the machine with filter water , before allowing them to remove the juice & only if I did not see any flies around!

The first few years while travelling , I always carried a portable water filter from Zero B. It was the size of a cup , compact & perfect for travel. It no longer in production, which they hadn't stopped! 

Travelling overseas 

Travel Insurance : A must when travelling outside the country. 
International Time Zone & Medication: Setting an Alarm helps one not miss a dose & adjusting the Time Zone to few hours difference. When 24 hours Time Zone , then best to have an extra dose to adjust to the current time zone. 

Vaccinations & other such medical requirements, in accordance to the visa required need to be complied to. 

At all times, counter check with your Doctor in regards to medications ( eg Diamox, recommended for acclimatization to high altitude conditions , like in Leh )/ Vaccination ( eg Yellow fever for African countries ) &  keep your doctor updated on your travel plan for any medical issue , if travelling to a destination you are unsure about.


Trains (Play safe with fast trains aka Express trains-Rajdhani, Duronto, etc , High speed trains-Shatabdi , etc)
Travel by train has been on rare occasions & short distances, for eg Delhi Amritsar, Bhubaneswar Calcutta - the Shatabdi category. A few trips have been over nighter's , like the Rajdhani, to Delhi, Indore. Precautions that I have taken , while on train-
*Washroom: Have requested the TT to get someone to clean the washroom, if so required & they always help.*Always rinse your mouth with Filter / mineral water. *Carry meals from home - the meals provided in the trains, might not be the best. *Drink hot tea or coffee , if u feel the need. At times , eating freshly made snacks at stations , are safe.

My Travels have included , water sports , hiking , cruises, driving holiday & much more.

"Do not let the Wanderlust be intimidated by the doubts of restriction , let the adventure begin with the strength of discipline & caution !"

Triple Whammy - Dehydration uncover's Malaria Stain & Hepatitis C !

"Life is a balance of building up & letting go ! " - Rumi

Kenya, August 2010, our first trip during the Migration season. Many a wild beasts to be seen & weather, just right for the visit, cold ,yet , the sun bright,spreading just enough warmth. 

The trip begins with an amalgamation of every aspect of a good trip. Being pampered by my cousin & his wife, cafe's , restaurants & exploring Kenya, as one would with a local.

It's difficult to pinpoint when Trouble began. A slow but steady decline in my health began primarily with my aversion to food. Anything that I ate , tried to eat , either tasted funny or the aroma , completely put me off almost all types of cuisines. For someone who is a complete foodie , this was heart wrenching to neither be able to eat nor be around the most aromatic dishes! Therefore , I survived mainly on curd rice. I felt like a ballon almost always & Coke with lemon juice & sprinkle of black salt became my favourite drink ! The pleasure of a Burp was soul satisfying ! 

This did not deter me from the week long trip that was lined up. Physically incapable of taking the 5-7 hours road trip to Masai Mara , I fly both ways, while the family takes on the road journey. Inspite of my condition taking a constant plunge , I manage to survive trips to Lake Nakuru , Sweetwaters, Serena Mountain lodge. Other complications are cropping - swelling on my feet , low Fever, Cold inspite of the weather being quite moderate, every morsel I eat , I want to throw up. An occasional Foot Massage at the Spa was a temporary relief.  

Extremely weak, is how I head back to Nairobi. Medications are not helping. We speak with my cousins friend , Dr Mohapatra, who is a physician,  suspects Malaria ( since we have taken Yellow fever vaccine & both are spread by an infected mosquito ) when the symptoms are mentioned & wants to do a blood test . He sends a technician home ,who cannot draw out any blood. Next day , I wake up with stomach cramps & am taken to Dr Mohapatra's clinic. His assistant tries to draw , it's multiple punctures again , which , Dr Mahapatra suspects , might be due to an extreme case of Dehydration. After much difficulty , blood is drawn out & sent for testing. In the mean while , he gives me some medication & asks me to drink plenty of liquids to hydrate myself. He sends me home , suggesting  , I am taken to the hospital to administer Saline drip ( a counter for Dehydration) , in case there is no improvement. 

However, by evening,  things go from bad to worse, the cramps are killing me. I am carried to the Agha Khan University Hospital , an immediate admission, blood test carried out, Saline Drip is initiated. The haemoglobin has reached a high of a little more than 20 gms. It's a classic case of extreme Dehydration & due to that, Creatinine, Urea & all other parameters have gone erratic. Being a kidney transplant patient , consulting nephrologist, Dr Twahir Ahmed is briefed, who ensures the transplanted kidney is not affected , Saline drips is on for 3 days, untill all parameter's get to normal & any calamity due to dehydration is averted. 

This would have been a simple end to a critical issue. However, Dr Mohapatra , does an additional manual testing , since Malaria is not detected in the reports ( clinic & hospital ) & wants to take no chances.Reports of this test puts him on an alert. He discovers Malaria stain( which according to him is an old one & not one acquired on this trip) , which wasn't as grave, as uncovering, that I had the HepC virus !  Dr Mohapatra apprise's Dr Twahir on these development , both surprised that we are completely clueless about this virus & HepC test has never been a part of any blood test. The closest association of any form of Hepatitis for us was Jaundice.There is a possibility of some symptoms like vomitting ,etc, were due to the HepC Virus. Not wanting to alarm us, we are given the fundamental facts & treatment. Since Dr Twahir is acquainted with  Dr Gandhi, he writes a personal note , regarding the Malaria stain & HepC , with his recommendation.Three days later , I am discharged & soon after ,we return to Bombay, with Dr Mohapatra's clear advice,  on a thorough check up & treatment for both. My first trip to Kenya has become an iconic one! 

It's not even a day , since my return to Bombay & I am hit by the chills , fever. Since Malaria test is done when the patient has fever, I am taken to the hospital & as a safety measure admitted. The Malaria virus has resurfaced & I am put on medications. Dr Gandhi is informed & he is given the letter written by Dr Twahir. Simply put, all hell breaks loose. I am referred to, Dr Samir Shah , the consulting Hepatologist &  I am subject to every conceivable & available test pertaining to HepC, before & after discharge at BCH ( Breach Candy Hospital) & Jaslok Hospital. After a detailed study of reports , Prognosis of the virus being inactive ( was it some medication that had been given to me at Agha Khan hospital, Nairobi or was it the body managing on its own , we still do not know) , puts everyone at ease to some extent & major , when my Mama , Dr Atul K Mohanty ( Mom's brother , who himself is a Pathologist  ) , gives this simple explanation - " There is an uninvited guest in the body , living there , not interfering in anyways - leave the guest , don't remind the guest of its presence which might create upheaval ! ". And we did just that. The virus is very much a part of Me, a Dormant Guest who hasn't made its presence felt in so many years & I trust , it will Never ! 

Retrospect

Trouble began, a week after our arrival. My cousin from London was to arrive. With time in hand before heading for the airport , we spent the day , driving around & visiting a few places , which included a few Cafe stopovers for some locally brewed coffee. The weather being very pleasant , cool breeze - I wasn't thirsty & the day went past with me drinking only Coffee & just a few sips of Water. Water is the Nectar & I should have had enough Water through the day , irrespective that I wasn't thirsty & the fact that , I was drinking excessive coffee! This, in most probability, was the beginning of Dehydration. 

Preposterous

It's a family trip to China the following year of July 2011. Two weeks of total family & visits to the main cities & attractions, is marred withing a few days , by fever & chills. Initially I tell no one about it , just have Crocin ( paracetamol ) & enjoy the elements. However, it's becoming difficult to keep it hidden, I am also starting to feel Tired more easily & my Enthusiasm levels are fluctuating  . Fearful that I might not be Hydrating enough since it is cold , I make sure there is enough liquid intake. Some ups & downs , however , it's been a wonderful 2 weeks. Back to Bombay , fever still persists & once again , admitted to BCH. Blood tests & once again Malaria is detected. With all attention moving to HepC in 2010, although I was discharged once the fever was under control, the Malaria stain/ virus , had not been tackled. This time around , the treatment eradicated every stain of the virus. Since then , Grace working double time, Malaria has not shown up & I do take precautions to ward of mosquitoes - no surprises wanted ! 

Lesson learnt

~No matter, the weather is cool , chilly & one is not thirsty - you are on a Holiday or at Home - you still need to HYDRATE , drink enough liquid .  

~Liquids means primarily Water . Coffee , Aerated drinks , Tea , Alcohol , do not come under the category of Liquid & just in case you indulge once in a while in these , compensate by a double intake of water! 

~Insufficient liquids intake is as concerning as is Excessive liquid intake. Be Aware - a Delicate balance needs to be maintained. 

~If you have been hit by the Malaria virus , make sure every stain is removed , with the right treatment. 

~ Precaution , since I know I have dormant HepC virus , which can surface anytime,physical fitness is a must & diet is not only about Kidney but Liver as well , basically be disciplned enough with eating & drinking to protect both ! 

The Doctors 

Dr Mahapatra : https://medihealgroup.com/nairobiupperhill/mahapatra.htmlo

His knowledge on Medicine is extensive - which helped him diagnose my issues ! 

Dr Ahmed Twahir:  https://kenyarenal.org/the-team/

Dr Samir Shah: https://www.gleneaglesglobalhospitals.com/hepatology-doctors-mumbai-parel/dr-samir-shah

Information:

* Most questions regarding HepC answered  in this link -

https://www.cdc.gov/hepatitis/hcv/cfaq.htm

* Mandatory screening of donated blood for Hepatitis C virus was introduced as late as 2002 under the National Blood Policy. Blood banks now screen for Hepatitis C along with Hepatitis B, HIV, Syphillis and Malaria. But many had already been infected before the policy came into being, main culprit being , Blood transfusion ( just like me ). Most patients who have had a blood transfusion before 2002, are likely to have a Dormant HepC virus. It's common , remains undetected & causes absolutely No Harm. However, there is a chance that the virus will affect the liver & one might end up with a liver transplant. 

* It's a challenge for the doctors to maintain a transplanted kidney & at the same time to treat a Liver ailment, the treatments being quite contrasted. An active HepC virus, is a grievious complication for any CKD patient. However , with medical science progressive extensively , medications ,treatments & liver transplant , HepC is being tackled.

* The normal range for hemoglobin is: For men, 13.5 to 17.5 grams per deciliter. For women, 12.0 to 15.5 grams per deciliter.

* Yellow fever virus is spread by the bite of an infected female mousquito. And a vaccine is mandatory for some countries - Kenya being one of them. 

https://en.m.wikipedia.org/wiki/Yellow_fever

Pillars at Kenya

* Pannaga ( Cousin)  & his wife , Rinnie - strength of family at Kenya - the backbones.

* Sabrina ( Cousin) , in her A levels, has decided to pursue Medicine since she was a kid, got her first experience on what it's like to be faced with & handle medical emergencies.

* Vicky & his wife, Dipti -  friend of Pannaga , his unconditional support can never be measured. 

"Faith does not mean trusting God to stop the Storm. it means , trusting him to strengthen us, as we walk through the Storm! "

~ Prayers are an integral part  , as are some Humour , Laughter & Smile , through the crisis. 

~ an Abhishek at a temple in Hyderabad , by Dad & Shubhada Amma

~ Mom manages for 3 days in the hospital under most uncomfortable & difficult situation.

Bed Wetting , an indication ?

"No man really knows about other human beings. The best he can do is to suppose that they are like himself " - John Steinbeck 

As I journey forward , with a look at the past , I realise , that to suppose there are a few or many , who might have gone through the same symptoms that I have experienced , is probable. and it's time for me , to mention , my relation with Bed wetting ! When a disease pays you a visit , to become a permanent part of your life , the warnings are there. However, with dime a dozen ailments , one is not aware on the indications of every disease nor is one aware of the disease itself. It's only with our own battle & knowledge over the years , do we comprehend the various tell tale signs. One of the signs that the kidney is failing  , which came to our attention very recently , is Bed Wetting , not being able to control the bladder when asleep ! 

Till around  the age of 5 -6 years , Bed wetting , was considered as normal development. However , as I grew older, this became embarrassing. Also , I had this terrible habit , since I was a little girl , to control my bladder for many hours & only use the washroom , if absolutely clean.This also meant , loosing bladder control when pressure very high. were both individual issues or co -related ? Was this a cause of bed wetting, till I was in my teens & what followed . Was bed wetting related to my kidney's failing , or was it an entirely different reason , can only be a guess , since no diagnosis on the reason was ever established !

Although the frequency of bed wetting reduced as I grew older , it continued & stopped, once I had my transplant. 

No matter , I would be woken up in the night to use the washroom , or was conscious enough not to drink too much water in the evening to overload my bladder, accidents happened. It was quite a situation when we were travelling. However, it was well hidden , no one ever knew & we never realized , the bed wetting was a trigger for something bigger!  Bed wetting was blamed to my deep sleep, drinking too much liquids before bed time & well , was definitely a cause for my parents ire ! 

Today we know better. We know that it wasn't normal & we shouldn't have hidden it , but consulted a doctor. And then again , would a doctor, 30 years ago , done a complete blood test ? Would they have suspected that maybe it was kidney related ? Do we , even today , hide the fact that a teenager or an adult is wetting the bed? Will the doctor ( GP , considering he is the first person to go to ) , recognize it as a symptom for kidney that has flawed  functioning ? Questions, which we need to find answers for ourselves !

"Things are not always what they seem, the first appearance deceive many, the intelligence ( in my case, Time , which is also a great teacher )  of a few perceive what has been carefully hidden"  - Phaedrus 

**** So, please,  do not hide the fact , that your child beyond 6 years or an adult is bed wetting. Consult a doctor. Do a kidney profile. Do not make the mistake , that we made! 

**** Time to share your knowledge on symptoms which are kidney related. Awareness is the call of today , through your own experience , that of another & information gathered !

**** Be Aware : We have kept many private issues hidden , we need to talk about them.

**** According to Dr Sankaran Sundar, Reflux Nephropathy is one cause of kidney damage in childhood, which might be associated to Bed wetting. Some tests done, if Bed wetting, urinary infection, bowel difficulties & problem urinating is an issue, include , ultra sound examination of the Kidneys and Bladder , X-Ray or other tests.

**** The signs and symptoms of urinary tract or kidney problems vary and include:

·        swelling around the eyes, face, feet, and ankles (called edema)

·        burning or pain during peeing

·        significant increase in the frequency of urination

·        difficulty in controlling urination in kids who are mature enough to use the toilet

·        recurrence of night time Bed Wetting (https://www.healthline.com/symptom/bedwetting )

·        blood in the urine

·        High Blood Pressure

·        Diabetes

The Links :

- Dr Sankaran Sundar : https://www.manipalhospitals.com/doctor/nephrologist/dr-sankaran-sundar
- Reflux Nephropathy : https://en.wikipedia.org/wiki/Reflux_nephropathy
- Hereditary: http://www.thesouthasiantimes.info/index.php?param=news%2F133507%2FHealth%2F23#.XS_raZJVcHA.facebook:

My Nani, My Donor , who lives on, within me !

"I am blessed in more ways than I can count ! "

Blessings from Family, Friend's, Ancestor's, Guru's ,God, Stranger's !

The one's who have been following my blog , will know , that it was my Nana who decided on my Nani being the Donor, inspite of strong opposition by a few. Had it not been for his firm decision, this story would have definitely had a different plot! 

My Nani did not question her husbands decisions. She went with the flow. A simple woman , who went through the entire process of check up's & then the surgery , with a strength that belongs to that generation. Her prayer & blessings for my recovery ! Ignorant that she was , no fear, no stress , her indomitable Faith and a surgery that went off smoothly. Her recovery , swift & uneventful. She never gave a thought  about the risk involved ,  to the fact, that she was giving away a part of her body, never realised the worth of her precious gift. She just gave, to give Solace to her daughter & healthy life for her grand daughter. 

A child , spoilt & pampered , by her zamindari background, a young woman , married to a man who belonged to the same culture , however ,  had broken away from traditions. Spirituality seeped in every pore of his being, knew the Bhagwat Gita , verbatim , a Goddess Kali devotee . He believed in the ideology of Gandhi , simple living & high thinking, wore only khadi & made sure his new bride followed the same. This made my Nani,  resilient to any situation. Like any Indian woman , her life was all about giving , giving to her family , friends , social obligations, taking care of anyone & everyone , but never Time for Her! And she eventually gave the most precious gift of all , her Kidney , to Me ! 

She was one tough woman ( pre & post surgery) , physically very active, never did one see her laze, always on the move , never a dull moment for her . A Lord Shiva devotee, her prayers , her faith , her unconditional devotion , almost always gave birth to a new miracle. My Nana a vegetarian ( sans garlic & onion) , had managed to convince my Nani to leave non vegetation. Although vegetation, their diet - very balanced & healthy.They never ate out, meals were freshly prepared  - the dietitians of today , would have definitely learnt many an important lesson from their dietary habits. It was this life style , that made her , such an ideal Donor & her recovery, fluid.  As such, People from Orissa, have a very healthy diet ( lets discount the pizza & burger eating generation of today ) , they do not mix proteins or carbohydrates &  leafy vegetable is a part of their daily routine, 

She lead a normal life , surgery did not dampen her spirit for life. To say , that her energy level had gone up quite a few notch , wouldn't be wrong - like , going up & down the stairs of her 2 storey home, innumerable times , without missing a step , vis a vis ,  just once was enough for me ! 

A Vivacious woman , she passed away at the age of 94 years , with her zest , intact. She has left behind a Legacy of Unconditional love ! 

Organ Donation , is the most difficult decision to make. An Emotional, physical & financial , conflict. And yet , once made , it create's a Miracle - a whole new world of Giving, Gratitute, Appreciation. 

Information :

*Source: Medical College of Georgia at Georgia Regents University

When a single kidney is removed because of injury or for transplantation, the remaining kidney can rapidly get 50 to 60 percent bigger, an apparent physiological attempt to expand its capacity. Now, scientists have found an explanation for the century-old observation that if you end up with just one kidney, the lone organ gets bigger.

* https://www.kidney.org/transplantation/livingdonors/what-expect-after-donation

* Some links on Organ Donation are on the Intelligence & Emotional Quotient page. 

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 ! 

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.

 http://www.organindia.org/laws-made-easy/

The law -

https://www.google.co.in/amp/s/fit.thequint.com/amp/story/health-news%252Fkidney-donation-kidney-shortage-kidney-transplant-policy-organ-donation-organ-shortage-2

The Government bodies -

http://dghs.gov.in/content/1353_3_NationalOrganTransplantProgramme.aspx

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

https://www.kidneyregistry.org/living_donors.php?cookie=1

Hummmmmm.......

Iran Organ Drive regulated by Government 

https://en.wikipedia.org/wiki/Kidney_trade_in_Iran

Kidney Swap
https://www.hopkinsmedicine.org/transplant/programs/kidney/incompatible/paired_kidney_exchange.html

Donate ... Register ....

http://www.ztccmumbai.org/ztcc/index.php

http://www.mohanfoundation.org/