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 ....




2 comments:

  1. Hats off to the support system(family and friends) and the doctors.

    ReplyDelete
  2. Again master piece well written by the 'Wisdom lady '( Rita) !!! Full of gratitude for the family, friends and doctors ...It's their struggle too with the patient..In fact i believe the caretakers suffers more mentally and emotionally !! Yet they wear a smile full of hope for the loved one who is suffering .They try to do every possible thing to make the patient happy .
    Genuine request to you please combine them all and make a beautiful treasure as E-book.
    I really would like to appreciate the way she tries to address each and every issues which many of the post tx people have in their mind.It's her sincere dedication and discipline which will surely become a motivation for the other Readers to follow her footsteps while creating their own.

    ReplyDelete