I have always been fond of the outdoors, with a special passion for trekking. I have even trekked in high altitudes and sub-zero temperatures. It was in mid-2019 that I started having recurrent bouts of fever which subsided with a few doses of paracetamol tablets. These low grade fever episodes continued for almost a year. By July 2020, symptoms like shortness of breath, tiredness and loss of appetite accompanied the fever. These symptoms gradually increased in intensity, and by September, frequent diarrhea added to the discomfort.
Suspecting something serious, I decided to get a health checkup done. The results showed low hemoglobin and unusually high creatinine levels. That is when I consulted a nephrologist. My blood pressure was found to be 220/180. Specific tests to find out the cause of kidney dysfunction, including a biopsy, were carried out. I was diagnosed with Lupus Nephritis and end stage kidney failure (ESKF) with less than 10% kidney function remaining. The fever episodes were indicative of early symptoms as a result of lupus inflammation. I recalled that I had observed frothy urine a few months ago, which had seemed unusual, but I had not given it much thought. If I had consulted a doctor then, perhaps early intervention could have delayed the progression of my kidney disease.
Lupus and Lupus Nephritis
Lupus or SLE is an autoimmune disease where the body’s immune system attacks its own healthy tissues and vital organs like skin, joints, brain, heart, lungs and kidneys causing inflammation and irreversible damage.
Lupus Nephritis is the inflammation of the kidneys when the immune system attacks the glomeruli or the filtering units of the kidneys. Kidney disease caused by lupus, if not diagnosed and treated in the early stages, can result in permanent damage and end stage kidney failure. Almost 60% of lupus patients have kidney involvement with 10-15% patients progressing towards kidney failure. Lupus affects one in 1000 Indians with 9 out of 10 Lupus patients being women. Early diagnosis and treatment can ensure that a Lupus patient lives a healthy and normal life. Fever in the absence of any infection, fatigue, joint pains, rash, shortness of breath, are some of the common symptoms of lupus, while high blood pressure, blood in the urine, swelling in the body, foamy urine due to protein leak, are symptoms indicative of impaired kidney function.
Once my kidneys were damaged, all efforts to slow down the progress of the disease failed. Soon, I had protein loss in the urine, fluid retention and finally, even fluid in the lungs, resulting in pleurisy. I was immediately put on dialysis. After noticing aggressive lupus disease activity affecting my lungs and joints, my rheumatologist advised chemotherapy.
After a year of undergoing chemotherapy for lupus remission along with dialysis, I got a transplant in October 2021. My mother, my caregiver, was also my donor. I have resumed normal activities and have taken up the mission to spread awareness about lupus nephritis, since I believe that awareness and early diagnosis are key to controlling progression of the disease. My intention is to share with others what I have learnt from my own experience.
My Mission – Spreading Awareness
I ran a half marathon recently as part of a Lupus awareness campaign, and also to promote organ donation, and spread hope amongst other lupus patients. I also work with Lupus Trust India and other patient leaders spread across the country to raise awareness about Lupus in India. Our intent is to join hands with caregivers and doctors to work towards advocacy so that people can see a doctor without delay if they have any symptoms. The trust also aims to influence policy makers to come up with an insurance plan to support patients who cannot afford treatment.