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Submitted by PatientsEngage on 20 June 2020

Rahul Supekar, 42 first had a kidney failure and then cancer of the intestine. He shares his travails, the lifestyle changes he has made and his advice to other patients struggling to cope with their conditions.  

I was diagnosed with chronic kidney disease in 2005 which resulted into kidney failure in 2011. I did hemodialysis for a couple of years before I was allotted a cadaver kidney in January 2013. I thought this is end of my problems but that was the beginning. One of the anti-rejection medicines caused me a cancer in the intestine (Same year in August). I underwent 6 sessions of chemotherapy post that. As soon as the chemo session ended (after 9 months) a new challenge of tuberculosis was waiting for me. I had undergone its treatment for 18 more months. After this the condition is stable. I was neither hypertensive nor diabetic. Now, after all these treatments I am diabetic. I am healthy otherwise now, just need to follow a lifestyle.

When were you diagnosed?

I was diagnosed in 2005 during a pre-employment medical test since I was asymptomatic until very last stage.

Is there a history of any kind of cancer in your family?

No.

Please describe your experience of managing the condition?

My typical day starts at 5:00 AM in the morning. I take a walk for 45 minutes and then do my pranayama for 15 minutes. I take a bath and do my prayers (this is the most important part of the day for me). After having my breakfast post that I start my office and close it by end of the day. I finish my dinner as early as possible, preferably before 6:00 PM. I never miss my medication, I do not eat out, I do not smoke or consume alcohol. I thank my God everyday before going into bed and I go to bed around 10:00 PM.

What medications are you on?

I am on anti-rejection medication for my kidney transplant and none for cancer.

Were there any side-effects of the medicines?

Cancer itself was caused as a side effect of a medicine. Cancer treatment is a big hurdle to pass through before you get healthy again. Chemo and post chemo sessions can be particularly painful.. I had also recently undergone a kidney transplant and hence also had a target of 5 liters of water every day. Which used to result in frequent trips for urination.

What were some of the challenges you faced and what is your advice to patients who face similar challenges?

Cancer is malign. Your body gets weaker and weaker during treatment. You face other issues as I mentioned in above section. And the biggest challenge that one faces is the despair.

For symptomatic issues doctors are there, follow their instructions religiously. My mantra to deal with the despair is to have faith in God. Stop asking him “why me?” and start telling him “Do whatever you think is right for me, I will continue my fight and I leave the result to you”. The moment I stopped demanding and started accepting the situation I got wonderful results.

Have you learnt anything in managing your condition that you wish you knew before?

Yes, Live a disciplined life. There is no alternative to it.

What kind of specialists do you consult and how often?

I visited my oncologist for 5 years after the treatment ended and then he told me that I don’t need it any further. I did my PET CT Scan for 5 years, once every year. I go to my nephrologist every three months with reports to be sure that the transplanted kidney is functioning well.

Are there myths regarding your condition that need to be busted?

One myth that definitely needs to be busted is: Chronic diseases can be treated using alternate therapies.

Before transplant I tried every possible therapy on the planet, but none worked. Yoga does work, it helped me postpone the dialysis from 2005 to 2011. It is still helping me keeping well.

Have you had to make some changes to your lifestyle because of your condition?

Yes, I was not at all disciplined before I was diagnosed. It made a 180-degree shift in the way I lived.

Has it been difficult emotionally to cope with your condition?

Initially yes, but once I understood that it is the attitude that makes all the difference. Accept what has happened and start a fresh with new attitude. It is the attitude of the person that brings in all the positivity.

How has your family supported you?

I can’t thank them enough to be by my side and this is one of the biggest reasons I came out of the situation. They were always there with me and encouraging me. My Mom always used to tell me during that time that you are a phoenix and you will have to rise from ashes. My sister and my mother are my biggest inspiration in this fight.. Now, after being a father myself I can understand what they have been through as even when my son suffers from slight fever, I get nervous..

Did you see a counselor for support? Were you offered counselling by doctor?

My nephrologists had always been my counselors and I am very fortunate to always meet such doctors who had always been encouraging and inspiring me to fight against this.

What was the hardest part of the treatment? And what kept you going?

Chemotherapy is the worst ever treatment one can go through. In case of kidney failure dialysis is the hardest part. It was 3 times a week, you need to get admitted 3 times a week for 6 hours each day. I remember going in for dialysis at 6:00 AM, leaving from there around 12:00 PM and then rushing to office and finishing my work by around 10:30 PM in the night.

Any challenges during this lockdown for Covid 19?

I locked down myself in my flat since the lockdown and haven’t gone out of home for 3 months now. This has made my morning walk difficult as I Have to do it in the house. Apart from this, there has not been much change in my life. My nature of work allows me to work from home, so no issues on that front either.

Is there any personal anecdote that you would like to share with us?

I met a girl who was crying on her very first day of dialysis. She was continuously crying despite being consoled by her husband, nurses, technicians and doctor. My dialysis ended before her and I went to her. I asked her, whatever has happened, can you change it? And She said No. Then I told her why to cry for something you can’t change. You have two choices, fight and win or lose hope and die, choose whatever you want to. Try to make the life easy for everyone around you. They all are trying hard to make your pain a little less and what are you doing in response, just think about it. Our life in an Indian family is not about ‘ME’, it’s always about ‘US’. She stopped crying and since then I always saw her smiling.