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Living a normal life despite being on dialysis
Kamal D. Shah,
Co-founder and Director, Patient Services,
NephroPlus Dialysis Centres
Mrs. Malathi Venkatesan
An inspiration to every person afflicted with kidney failure
Fought the disease bravely for two decades
Trustee of TANKER foundation and MOHAN foundation
Amazing work for patient welfare
Never let her disease come in the way of serving humanity
Misconceptions about life on dialysis
Almost the end of life
Few months to a few years of life
Bedridden life
Patient will feel weak and tired all the time
But this is not true!
People on dialysis can lead normal lives
Work
Exercise
Travel
Have fun
Lead long and productive lives
Some living examples
Greg Collette
Samiir Halady
Bill Peckham
How?
Was 21 years old
Had just completed my B. Tech.
Got admission for my M.S. in the USA
Got my US visa
Went back to Hyderabad
First, a brief background about me
Lightning StrikesTook vaccinations - a pre-requisite for US travel
Developed some symptoms the same evening
Tests revealed Kidney Failure
Serum Creatinine of 7.2 mg/dl (normal range 0.5 to 1.2)
Biopsy confirmed the doctor’s diagnosis - Atypical Haemolytic Uremic Syndrome - aHUS (affects about 2-3 pmp)
Immediately put on Hemodialysis
Kidney Transplant
Was on HD for about 17 months
Tried a host of alternate therapies - nothing worked
Mother donated a kidney in November 1998
HUS recurrence after 11 days
Soon, back on HD
Peritoneal DialysisStumbled upon this term on the internet
Very intrigued - no thrice weekly hospital visits, less diet and fluid restrictions, no needles
Talked to my nephrologist, he supported it
Got my PD catheter and started PD in March 1999
Some normalcy returns
Slowly settled into a routine
Took up a part time job at a software company
Started learning software development basics
In September 2000, co-founded a software development company called Effigent
Began working full time - soon had 3 offices (California, Hyd, Bangalore), 200 employees
Chennai, Dec 2004Came to Chennai on Dec 25, 2004 and went to Mahabalipuram for a holiday with some friends
Checked into a cottage right on the beach
Next morning, completed a PD exchange and was having breakfast in our cottage while watching TV
Water, water everywhere
Water suddenly entered from underneath the door
Within a minute we were neck deep in water
Somehow managed to get out of the cottage
Lost all our belongings
Managed to hold on to our lives
The 2004 Tsunami
After effects of the TsunamiSeries of PD catheter exit site, tunnel, cavity infections one after another
Massive antibiotics
Tried to save the catheter, failed
Removed the catheter, put in a new one after a few weeks but not enough UF and clearance
Eventually had to give up PD
Home hemodialysis
My nephrologist, Dr. Girish Narayen then suggested Home Hemodialysis
Was wary about the risks: “What if something went wrong?”
Researched a lot about this and finally started on May 13, 2006
7-8 hours every night 6 nights a week Self cannulation
Got back into the routine of work at Effigent
Started writing a blog (www.kamaldshah.com) about my experiences with dialysis among other things
The blog quickly became popular among patients
Started getting a lot of emails on different problems from patients and responded with my suggestions
8 lakh views so far, 1100 posts, about 100 visitors per day
Finding my calling
Sold Effigent in 2008
Started working for Grene, doing Mac and iPhone apps
Regular software job, was itching to do something related to dialysis
“What could I alone do?”
Got an email in my inbox on 28th August, 2009 from someone called Vikram Vuppala that changed my life
The email that changed my life
Subject: Request for a brief meeting
Hi Kamal,
I chanced upon your blog and really loved reading it. In fact, I spent hours reading it… … I would love to meet you in person to talk about Dialysis and CKD in general. … So, if you can spare 15 - 30 minutes of your time at any location you prefer, I will stop by! .… Thanks and looking forward to hearing from you!
Vikram Vuppala
The birth of NephroPlus
Vikram Vuppala, Sandeep Gudibanda (whom Vikram had met at an ISB workshop) and I founded NephroPlus in December 2009
We brainstormed on the problems faced by patients on dialysis
We figured out solutions to each of those problems
We launched our first centre on March 14, 2010 in Hyderabad
64 centres 45 cities 14 states 1 country
India’s largest dialysis provider network:
Onestopshop foralldialysisrelatedneeds
HolidayDialysisProgram
Aashayein &otherpatientawarenessprograms
Podcasts,newslettersandanimatededucationvideosDieticianServices
Patient-centred care Quality, Safety
Bringing cheer back
Guest
Technology, Outcomes
Tips to lead a normal life on dialysis
Condition the mind to be cheerful
Get as much dialysis as you practically can
Work
Exercise
Travel
Kidney Disease affects almost the entire body
But the most important part it affects is - the mind
Depression, Suicidal thoughts
Feeling of being a burden on family
All dreams shattered
Need to get rid of these thoughts
Develop a positive outlook
Fight the disease
Get optimal dialysis
Get as much dialysis as you practically can get
Remember, dialysis is not the disease, it is a treatment for the disease called ESRD
Kidneys function 24X7 - get as close to that as possible!
Work
If not full time, at least part time
Keeps the mind busy
Gives a sense of purpose
Sense of self-worth
The income could help
Exercise
Start small
Get out of the house
Obvious physical benefit
Keeps mind fresh
Feeling of ‘normal’
Travel
Gives a change from routine life
See new places
Need not be expensive
Reboot the mind!
Believe you are normal
Go for movies
Eat out
Take up a hobby
Don’t let dialysis become your life
Make sure it remains a small part of your life
Dialysis
Family
FriendsWork
Hobbies
“In the end, it's not the years in your life that count. It's the life in your years.”
- Abraham Lincoln, President, USA
Thank you