For the past 20 years, Mr. Vijay Mohan Sharma has been suffering from chronic kidney disease (CKD). He is currently 82 years old and is still living with CKD. This is his story.
I am a Civil Engineer, specializing in Water Resources with a PhD in Rock Mechanics, and presently a director of a private company in India.
Working makes me feel productive and socially useful. On a personal front it keeps me mentally alert and in touch with new developments in my subject. It brings discipline in my daily life.
I have made two distinct compartments in my mental make-up.
First, with my work which I do about four days a week, I do not think about my disease on those days. Second, the other three days when I am on dialysis – I think only about my health.
A Dreaded Disease
Kidneys do not get diseased easily. Unlike other organs in the body, our kidneys regenerate very slowly. Once you get it, you either have to go on dialysis or get a transplant. Either way it can be a nuisance living with kidney disease and hence, dreadful.
Learning I Had Kidney Disease
After my retirement from the government service in 1995, I joined a private company and had to start from the bottom to prove myself. I was so focused on climbing to the top that I did it at a huge cost of my health. I suffered from hypertension and diabetes. I took my medications regularly but neglected the regular check-ups.
In 2014, I suffered from acute pneumonia and was admitted into the intensive care unit in Paris, France for nearly a month. It took me nearly a year to recover. My body suffered irreparably.
Whenever I had time for a check-up, I would go to a diabetologist to check on my condition. Based on the results from my blood and urine tests, they would usually say that there is no problem with my kidneys. For a change, I went to a nephrologist. He told me that my kidneys were damaged to the extent of 60% and the damage cannot be repaired. It was shocking news, but somehow, I knew that it was coming.
Adjusting My Diet
I also changed my diet to get rid of potassium. I gave up taking fruits and soaked vegetables in water for at least two hours before cooking. Soaking the vegetables and draining it with water helps extract some of the potassium they contain.
When kidneys are working normally, they remove extra phosphorus in the blood. However, when the kidneys are not working well, the body is not able to get rid of the extra phosphorus. Higher phosphorus level causes itching. I use ‘binders’, which replaces phosphorus by soluble compounds which drain away neem oil for immediate relief.
My doctor suggested that I should avoid foods which have higher percentage of potassium and phosphorus. These include avoiding salads, potatoes, tomatoes, fruit juices, and synthetic drinks like coke. He also advised to reduce the intake of proteins, adopt a low salt diet and drink less water. As a result of lower protein intake, I also became very weak.
As a part of my work, I had to travel to different places. My wife had to accompany me wherever I went. I also have to use a wheelchair at the airport. Somebody would have to help me get up on a chair so that I can deliver my lectures. I had difficulty getting up from the seat of the commode. I purchased a folding chair which would fit on top of the commode so that I could get up without any external help. I carried this chair wherever I went including air travel.
Trying Out Alternative Medicine
With no cure for this disease, I started taking homeopathic and Ayurveda medications and even started eating raw leaves of neem and peepul. After five years, I realized that they were not effective at all. There are many such alternative medicines floating around the internet with most being hearsay. I would rather consult my doctors as I have faith in the modern system of medicines.
Turning to Dialysis
I was sick of a restricted diet and on my doctor’s advice, I decided to go on dialysis. An ultrasound scan showed that my veins were very narrow and it was difficult to make a fistula. Instead, a catheter was inserted in my system. It has worked for nearly four years now. There were some problems relating to the flow which have been overcome by cleaning it. There are common problems in dialysis and I am always prepared to cross the bridge when it comes.
Caregiving is Key
My wife has been the source of strength, hope and aspiration for me all along. She has stood by my side when the chips were down and there was little hope of my survival. We have known each other for a very long time.
“Since he was diagnosed, my life has changed. I accompany him wherever he goes. Since he cannot stand for long, I make sure that there are always seats available. He cannot walk so we use a wheelchair. He cannot get up, so I help him to get up. He needs help at every step and I have to be nearby to reach him,” Mrs Santosh Sharma said.
“The condition also causes ups and downs in his health. When he is well, everybody is happy all around. When he is not well, everything is gloomy and morose. I have learnt to live with these fluctuations,” she added.
The other support came from my doctor. The relationship with a doctor should be such that he or she becomes your best friend, someone you can share all your anxieties and worries unreservedly.
“I met Mr. Sharma 5 months ago. He came to me as a patient with end stage kidney disease on dialysis. My first impression of him was that despite being physically weak, he is mentally sharp and socially engaged. He is a very pleasant elderly gentlemen who remains optimistic and is always full of positivity,” said Dr. Loh Ping Tyug, Mr. Sharma’s attending renal physician. She has a keen interest in glomerular diseases and diabetic kidney disease.
I also came across other fellow patients. We have learnt a lot from each other through sharing of notes and issues faced. It gave me some reassurance too.
One should always find time for themselves and do things that they enjoy. For example, painting, writing, gardening or anything else that is socially relevant.
These can really boost your energy and make you happy. I would rather do that than to brood about my condition and not take any actions.
An Afterword – Living Well with Kidney Disease
“I am very grateful to Mr. Sharma for sharing his experience and thoughts with us, which will not only help patients with kidney disease, but also those who are at risk of the disease. It is also heartening to learn how Mr. Sharma chose to live positively, undaunted by the burden of CKD,” Dr. Loh said admirably.
“I always emphasize the importance of getting their blood pressure and blood sugar at target range to my patients. High blood pressure and high sugar level damage the membranes of your kidney filters, which are the functioning units of your kidneys. Our kidneys can’t generate new kidney filters. Knowing how your diet and lifestyle affect your conditions, and how your blood pressure and your diabetes medications work is also important so that you can understand how your body reacts to them,” she advised.