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