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I had a kidney transplant exactly a year ago after a long struggle with Polycystic Kidney Disease. This is my often rocky journey towards healing.
My husband was wheeled into the OT early in the morning and I was made to wait outside. They said they would take me in after fifteen minutes. I waited in anticipation. My mind switched off and all I remember is that I was talking to one of the cleaning maids of the OT who looked very grumpy. My entire focus at that time was listening to what made her feel that way early in the morning. She expressed her unhappiness about life in general. That made me think about my life situation.
I have Polycystic Kidney Disease (PKD), and have been living with it for many years. Last year, in March 2017, my nephrologist said that it was time to either go for longterm dialysis or opt for a preemptive kidney transplant. After weighing the pros and cons, my husband and I decided to go for a preemptive kidney transplant.
When it came to looking for a donor, my husband decided to donate his kidney to me. Though my mother agreed to be my donor, it didn’t work out because of various factors. After thinking about it a lot, my husband decided to be my donor.
Yes, I want to say that loud and clear! No, no, don’t get into the “Why is it such a big deal if a husband is a donor, wives do it all the time!” That’s true, I agree, but it was personally a big deal for me.
It is a big deal for me, because, someone who would be unable to get out of bed even if he had a fever had decided to go under the knife for me.
It is a big deal for me, because at some point in time, I had accepted my illness and its debility, that this is how life is going to be.
It is a big deal for me, because I never expected that he would offer to be my donor.
It is a big deal for me, because I had been battling a chronic disease for a good number of years and no one ever understood what I was actually going through till this day came. Sometimes, life has its own strange ways of taking you through.
I was waiting outside the OT. I don’t remember exactly when was I wheeled in. While they prepared me for anaesthesia, I was trying to look around and see what this OT looked like. it was my third surgery in the last three months – I had undergone parathyroidectomy (one of the parathyroid glands was removed) and nephrectomy (the left kidney was removed).
The transplant was declared successful and both of us were in our respective wards. But, as luck would have it, my body started rejecting the kidney within the first week itself. Doctors said that only 5% of the transplants are not successful, unfortunately, I was one among those statistics.
When they told me this, the first thing that came to my mind was, “No, this is not happening.” Not only was I devastated, I could see dejection on my husband’s face. And I told myself, “This has to work.” For both of us.
I was supposed to get a huge number of blood transfusions to reverse the rejection. Many people – both friends and unknown people generously came forward to donate, when we my family sent out a call for donors.
I did every possible thing that to help myself get better. I’m an Art Therapy Practitioner, and I asked for some art material and started art as therapy on myself, in the hospital itself. I spoke to my new kidney. I spoke to my body, I spoke to my cells. As a spiritual person, I felt like doing this to help myself.
my art work for therapy
The doctors felt that the extended stay at the hospital was doing no good to me or my condition. They took a call to discharge me, and do the remaining procedures to save the kidney as an out-patient. Hence, started my unpredictable journey where each day was a new day. I came back home and was put in isolation and no one was allowed the enter my room. The funniest or the strangest part was that I was still going to the hospital and spending my entire day with infectious patients all around, and coming back only post-midnight.
After a week or so that routine also got over. The doctors gave me two to three years and said I could opt for another transplant after that. But again, within three months, my parameters started becoming normal and I was allowed to step out of the house. Still, I had to avoid gatherings and be on other precautions.
Physically, I was on my feet and could manage the housework within 5-6 weeks. My parents who had come to help me went back after that. My husband had almost recovered by now and helped me around the house.
But it was now that I started facing the side-effects of the immunosuppressants, the anti-rejection drugs, and the steroids came in all forms, anxiety, mood swings, feeling low, low energy, body pain, tremors, falling hair, acne, declining vision, mouth infection, hormonal imbalance, etc etc. One would settle down, another would come up. It sometimes felt like a whirlpool I was being sucked into. Though I would talk to people and I did maintain a cordial front, inside I was struggling. I was very vocal about what and how I felt, but by the end of the day, it was me alone. I think everyone around me felt that a kidney transplant would mean a magic wand swished-swooshed and there would be a new me. Unfortunately, that’s not how it was.
To be very frank, my surgery put a lot of stress on our finances and I felt extremely guilty for same. If I were given a choice, I would have stopped my medicines also. The moment I was allowed to step out, all I wanted was to contribute towards our finances.
Once again I cursed myself for quitting my job years ago to satisfy the whims and fancies of others. At that time I had no choice but to oblige others. For the past two-three years, I was once again trying to establish myself in a new field as a counsellor, but with my deteriorating health, it was óne step forward and 10 steps backwards. And now, I had no resources to invest in my training. This put a lot of stress on me and my relationships.
Being a counselor myself, I could reason out a lot of things but I had no energy to explain it to others. All I wanted was to be physically away from everyone. Somewhere amongst all this, I started regretting the entire thing and was ready to face the worst. This is when I took to social media.
I started a Facebook page for CKD, for the donors, recipients and their caretakers. The idea behind it was that the way I was struggling, there would be many in our country who would be struggling with similar issues. We do have many international pages for same but I felt that those pages didn’t have much when it came to many things Indian, especially diet and the other things in general. We are a handful of people on that page. I am trying to polish my ‘marketing skills’ and thinking of ways to motivate people to come forward and share their experiences.
At the same time, I started making more online friends and shared a lot. The support I got from my online friends was immense. If I am here to talk about all this, my social media friends share equal credit with my family and other friends. I made some very close friends and share a special bond with each one of them.
All the stress I had been through, showed up in the form of increased creatinine and I was back in the hospital daycare after six months for a biopsy to rule out rejection. Thankfully the reports ruled out rejection but the heavy doses of steroids had crazy side effects. It took me another two months to settle down.
It was then that I thought that enough is enough. I decided that I now had to get up and move above and ahead of whatever had been happening since the past few months. I had to accept that life wouldn’t be smooth now but I’ll move on despite these hiccups.
I went back to my Masters in Psychology which I had had to pause because of my health. This helped me keep my mind off many things. The other thing which I took up was a #100dayproject/ #100daysofart challenge on Instagram.
Since I had experienced the positive impact of art as therapy during the initial days after the surgery, I took up this challenge and worked with meditative and introspective art. I started approaching my artwork on the basis of what and how I felt. Most of the days, I worked directly with the medium not knowing myself what that day’s artwork would look like. Earlier I use to paint for selling my work. This time I painted for myself. The commitment for 100 days changed so many things in me and my environment. I have done so much of introspection in the past 93 days that I feel I have so much of renewed energy now. I had never experienced this kind of vitality in the past few years.
Apart from my art practice, I joined another practice of #MySankalpa with Sankalpa Art Journeys by Krupa Devi from Auroville. Thinking of a Sankalpa or an intention every day and sharing it with others, made me listen to myself more. I shared nature photographs with a Sankalpa. I studied the pictures so much that they started talking to me and I could hear my Sankalpa coming from them. Both these practices combined shifted something inside me. Everything helped me so much that for the first time in the past one year, my last month’s blood reports were normal.
A few weeks ago my doctors said that I am a ‘Miracle Woman’. Feels really nice. Now that I feel much better, I am once again able to revisit the past year without much pain. A tear or two did trickle down while writing this but I am good now, and grateful for my yesterday. Had it not been for those days, I would not have been here today.
As I celebrate my first ‘kidneyanniversary’ today with my husband, the only thing that holds true for me is that just trust the process and have faith in yourself. I just let go of the things and people which didn’t serve any purpose in my life with no regrets. It is very liberating an experience in itself. I no longer believe in the rules that don’t work for me.
At the same time, I am grateful to my husband for being my donor. He was always more of a friend to me and now that bond has deepened. I am grateful to my doctors, family, friends and well-wishers, and the strangers who poured in as blood donors. And a special, heartfelt thanks to my best friend Sandhya who was there throughout with me. I am here because of you all.
I have to mention my daughters separately here. The amount of maturity, grit and determination they showed when their parents were struggling to settle down with this new phase of life is enough to teach us a lesson or two. At 17 and 12 years respectively, they are already my role models.
I share my story to encourage others to come forward and share theirs. There are people who are waiting for you. You just have to reach out.
Images source: Pragati Adhikari
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Designer, counsellor, and Art Therapy practitioner. Advisor on board for Ideaworkx.
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