My Tryst with Kidney Disease

Vijay Mohan Sharma, an 82-year-old Indian, has suffered from chronic kidney disease for 20 years. He recounts his journey from diagnosis to treatment with dyalisis, always relying on the support of family, friends, other patients and doctors to live a normal life with his disease.

A Dreaded Disease

Kidneys do not become diseased quickly. Unlike the other organs of the body, they regenerate very slowly. Once you develop kidney disease, you either have to go on dialysis or have a transplant. Either way, living with kidney disease is a nuisance and hence dreadful.

Learning I Had Kidney Disease

After I retired from government service in 1995, I joined a private company and proved myself again from the very beginning. I was so focused on climbing to the top that I did it at a considerable cost to my health. I suffered from hypertension and diabetes. I took my medications regularly but neglected regular checkups.

In 2014, I suffered from acute pneumonia and was admitted into the ICU in Paris for nearly a month. It took me almost a year to recover. My body suffered irreparably.

Whenever I had time for a checkup, I would go to a diabetologist to check on my condition, and usually, from the results of my blood and urine tests, they would say that there was no problem with my kidneys. For a change, I went to a nephrologist. The doctor told me that my kidneys were 60% irreparably damaged. It was a piece of 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 eating fruits, and before cooking vegetables, I soaked them in water for at least two hours as it helps pull the potassium out and drain it with the water.

When kidneys are working normally, they remove extra phosphorus in the blood. However, when they aren’t, the body cannot eliminate the excess phosphorus. Higher phosphorus levels cause itching. I use ‘binders’ that replace phosphorus with soluble compounds to drain phosphorus away or neem oil for immediate relief.

My doctor suggested that I should avoid foods rich in potassium and phosphorus. He said to avoid salads, potatoes, tomatoes, fruit juices, and synthetic drinks like Coke. He also advised me to reduce protein intake, have a low-salt diet, and drink less water. Because of my lower protein intake, I became very weak.

As a part of my work, I had to travel to different places. My wife now had to accompany me wherever I went. I had to use a wheelchair at the airport. Somebody would help me get up on a chair so that I could deliver my lectures. I had difficulty getting up from the commode seat. I purchased a folding chair that would fit on top of the commode to 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 Ayurvedic medications and eating raw neem and peepul leaves. After five years, I realized that they were not effective at all. Many alternative medicines are floating around the internet, and most are just hearsay. Thus, I consulted with my doctors and had faith in the modern system of medicine.

Turning to Dialysis

I was sick of a restricted diet. With a 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 into my system. It has worked for nearly four years now. There were some problems relating to the flow, which is overcome by cleaning it. These are common problems with dialysis, and I am always prepared to cross the bridge when it comes down to it.

Care giving is Key

My wife has been my source of strength, hope, and aspiration. She stood by my side when the chips were down and when 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 seats available. He cannot walk, so we use a wheelchair. He cannot get up, so I help him 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 learned to live with these fluctuations,’ she added.

Coping Measures 

The other support came from my doctor. The relationship with a doctor should be such that he or she becomes your best friend, someone with whom 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 gentleman who remains optimistic and full of positivity,’ said Dr. Loh Ping Tyug, Mr. Sharma’s attending renal physician.

I also met some fellow patients. We learned a lot from each other, sharing notes and anecdotes on issues we faced. It reassured me some too.

One should find time for oneself and do something one enjoys, for example, painting, writing, or even gardening — anything that is socially relevant. These activities can boost your energy and make you happy. I would rather do something I enjoy than brood about my condition and not take action.

An Afterword by Dr. Loh Ping Tyug, Renal Physician at Farrer Park Hospital, Singapore — On Kidney Health and Living Well with Kidney Disease

‘I am very grateful to Mr. Sharma for sharing his experience and thoughts with us, which will help not only patients with kidney disease but those who are at risk of the disease. It is also heartening to learn how Mr. Sharma choose to live positively, undaunted by the burden of CKD,’ Dr. Loh said admirably.

‘I always emphasize to my patients more about getting their blood pressure and blood sugar at a target range. High blood pressure and high sugar level damage the membrane 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.