Nilesh B. Shah
Will power- became my life’s shield
Morning sounds woke me up. As I opened my eyes, my sight was blurred. I rubbed them, but it didn’t help. “Today is Diwali… so much excitement in the house… and why is my eyes not able to see?” I questioned myself. “Was I losing sight?” were my first thoughts. I rushed to see an eye specialist. After a preliminary check-up he suggested I meet my physician. My family doctor, who was a GP, checked my blood pressure. It was very high but there was no symptom. He advised me to get a few tests done. After a few hours, I was back with the reports.
That day, 23rd November 1998 is still so fresh in memory, as it was the season of lights, colour, sweets and celebration in India. My heart was filled with an unknown fear.
To our utter surprise, the doctor pointed out my creatinine and said, “Such a high level means your kidneys are affected.” Very shocked with this news, my wife and I visited a nephrologist in Ahmedabad. The ultrasound showed that my kidneys had shrunk in size and the nephrologists explained that my kidneys were not working properly.
Fear drove us around. We met a nephrologist at Muljibhai Patel Urological Hospital, Nadiad. Though biopsy was advisable, my high BP made it impossible. So we were clueless on cause for damage.
I saw this as a starting point of my battle for survival.
All this was so sudden, I broke down, felt shattered but in my heart hope was still alive. I decided to look for every option available for curing the disease. My search for medicines led me to homeopathy, Ayurvedic, to McLeod Ganj, Dharamsala for treatments offered by His Holiness Dalai Lama, from Buddhism practices.
One year was wasted without any positive signs, but my confidence of recovery remained intact. Reports were stable and dialysis was not yet necessary.
Another date stands out. 26th January 2001. Gujarat saw the most tragic earthquake in many places in Gujarat. When the city was finding people squashed under debris, I faced a big challenge. My blood pressure shot up, Urea and potassium levels increased and I felt my life was falling apart. Emergency dialysis was started putting me on the next stage of fight for survival. Then thrice a week dialysis was recommended. I found dialysis very painful so I shifted to Nadiad. There was no change to my level of discomfort. My blood pressure would increase suddenly, I got cramps, but with difficulty I managed it with great determination. Driving to Nadiad, feel the needle prick, going to sleep, waking up, driving straight to office was my routine. Life was busy. Fully scheduled. Discussion with my doctor, led to a plan for a kidney transplant.
My mother willingly donated her kidney. Finance was arranged through friends and relatives and then the big day.
I recall how I was being wheeled away from my family into the operation theater on 23rd November 2001. There was fear and some worry, but with complete faith in God and praying I went into surgery. When I opened my eyes the next day, my transplant surgery was done successfully. I had won my first battle. After 10 days in a special ward, I was discharged from hospital.
Slowly normalcy returned to my life. I worked hard to grow my business, became successful in business. But on 23rd March 2011, I was unwell and detected with hernia. It was my second struggle to survive. I got operated for right inguinal with mesh hernioplasty, which resulted in a swelling. Doctors said it happened in some cases.
Three months after the surgery I travelled to UK with my wife and daughter. When we returned home, new health complications showed up. I tired very quickly, got chills and light fever. Also felt uneasiness constantly through the year.
In January 2012, I was admitted at the Nadiad hospital for infection at hernioplasty site. I got my first aspiration and incision drainage done. Regular dressings were needed, which meant driving to Nadiad everyday. Further investigation was done leading to another operation to remove the mesh on 19th March 2012. Others issues were still bothering.
Samples were sent to check for TB. A CT fistula gram evaluation was found to have colocutaneous fistula, but no specific symptoms except puss retention. Other symptoms like stomach pain, vomiting, diarrhea, were not observed.
For a year I travelled to Nadiad daily every morning.
“How long will I live in two worlds, one in the hospital and one outside,” I asked my wife, who supported me through all this. She would squeeze my shoulder understanding my feeling and to express her own sorrow. Life was so much at cross roads for the family!
Tests gave no results. Small operations and incision were done.
On 1st February 2013, some pus positive of AFB bacilli was found in the culture. ATT treatment to fight tuberculosis was started and continued for 9months. On 18th February 2015 again a fever with pain in right hip region troubled my peace.
Another round of scans, and MRI was conducted. The culture showed gram-negative bacteria (klebsiella) and kidney cancer (renal cell carcinoma) in left native kidney. In June 2015 nephrectomy was done, left native kidney was removed. The wounds healed and recovered. But the creatinine was rising gradually because of medicine for treating bacteria, causing another line of worry.
By December I experienced severe pain and fever. I was hospitalised yet again. Another round injections, reports, scans and operations began with pain of different kinds.
“How long should I remain strong? All these struggles were making me tired. I feel so frustrated! Nothing was obviously wrong, no solution found”, I thumped the table silently relieving my grief.
My life seemed to be on a “pause mode”. A new pain bothered me making it difficult to walk. I can’t remember for how many months I took Crocin thrice a day, without any relief. Then I got hospitalised for more than a month in Nadiad Hospital.
As if I received a secret message I suddenly decided to go for CT scan on 09th May 2016. Suddenly the doctors suspected that the intestine could be involved. I met a gastroenterologist. Another scan found a large abscess formation near the colon. A colonoscopy showed nothing inside the intestine. The gastroenterologist contacted his friend, a colon rectal surgeon in Brooklyn, NY who suggested opening up to see if it can be operated and understand what caused the problem.
In a major, 12-hour surgery conducted on 25th June 2016 removal and cleaning the abscess was possible. The surgery was very risky but with all our prayers it was successful by Gods grace. I sailed through it unscathed.
Though with help of doctors my healing was handled well, the creatinine stayed between 2.5 to 3mg/dl. Other reports are fairly average. I had huge loss of weight and energy in these years.
Today with so much experience on my health, I’m left very confused on the unpredictable nature of my illness.
Amazing thing is what started with a kidney failure in 1998 drove me through many dangerous rides, sometimes troubled by hernia and tuberculosis, then perforation of the intestine, even nephrectomy! Imagine, a US doctor suggesting opening up to see if it can be operated and understand what caused the problem. My body passed so many tests of life. All this in a span of 5 years!
In my darkest phase where lights were dimmed it was the light from the God’s powerhouse that made my struggle possible. I managed to smile through agonizing thoughts, “Will I fight?” so people knew I will fight for my survival. Many low phases of doubt, but I rose due to dedicated family support and my willpower.
In my mind this thought always surfaces. “Battle is in everyone’s life, but the real warrior is the one who falls a hundred times, but rises again, ready to fight with a never dying hope to win!”
Nilesh B. Shah