Naveen, 27, from Noida was diagnosed with Lupus Nephritis out of the blue. It left him shocked and in immense physical pain, followed by a series of emergency visits to the hospital, each more critical than the previous one. Through all this, Naveen has emerged as a positive-minded warrior who takes each day as a gift.
Please tell us a bit about the condition you were diagnosed with. What was the experience and what were the early symptoms?
The diagnosis came a year after my symptoms first emerged. I started getting unexplained fevers from mid-2019. The fever would generally last for a few days, get better, go away, and come back after a period when I felt better. I went to see multiple doctors but, back then, no one could associate these fever episodes with any condition that I might be developing.
Around August 2020, more symptoms started emerging one after another. I noticed symptoms like fatigue and joint pain. While fatigue would continue to stay throughout the day and make me feel tired or push me to bed for a quick nap in the afternoon, joint pain would mostly come in the mornings. It reached a point where I would take almost 30-40 minutes to get out of the bed and start my daily activities. I remember going for a walk with a friend and feeling extremely exhausted within half an hour. My energy levels fell drastically and by September, suddenly more severe symptoms started manifesting. I started having shortness of breath, palpitations, chest pain, loose motions, stomach cramps and felt dehydrated almost all the time. It was then I realized that something was not right internally, and I needed a health check up.
I did a blood test, and the report came as a shock. I had severe anemia and all the other parameters were erratic.
I went to see the doctor and he was also very shocked. I still remember that day, his concerned face and his words "What have you done to yourself son, I don’t know how you are standing. Your body has a lot of inflammation and your kidneys are probably functioning at 5%. You have come too late”. The doctor did a quick blood pressure check, and it was sky high. I could not believe what I was seeing. I was completely frozen with a sense of shock and horror and felt my world would collapse around me.
I was told if I wasn’t admitted immediately, anything could happen. I was admitted the same day and then started a series of blood tests and scans. The nurse would come, prick, and take my sample. All my vital organs were scanned for abnormality. This continued for almost 2 days. Since my condition was very severe and life-threatening, with a lot of inflammation in the body, the doctors had no second thoughts about my diagnosis. I was subsequently diagnosed with Lupus Nephritis, My luck was so bad that I got my diagnosis on my birthday. My friend came with a cake and my mother with reports. It was quite eventful. So, Lupus Nephritis is an autoimmune disease that attacks and inflames the kidneys. It also happens to be one of the most severe manifestations of Lupus. So, essentially, my Kidneys were attacked by Lupus and other organs were under a serious threat. The first 20 days were touch and go. The doctors didn’t think that I would make it. They were even scared to do a kidney biopsy because my hemoglobin was very low. Finally, after the biopsy, I was told that I had severe Lupus Nephritis, Class 3+5 with a high severity score that needed hemodialysis treatment and heavy immunosuppression to save the kidneys, and probably my life.
I was at the peak of my life and suddenly, here I was, looking at a life-threatening condition. I was shattered. I couldn’t believe what was happening to me. My world was shattered. I wanted to scream from the rooftop.
Please describe your experience of managing Lupus Nephritis. What is your present condition?
After I got discharged, I was told that it is an auto-immune condition and could happen to any healthy person. It was explained to me that if I followed the treatment and took proper rest, my condition could improve slowly.
However, I didn’t know that I was up for some more adventurous events in the coming days. Two weeks after the discharge, I experienced severe chest pain in the middle of the night. The pain was so severe that it felt like someone stabbing me with a knife on my chest. The pain intensified with each breath and I could not breathe. I was immediately rushed to the emergency, and subsequently I was diagnosed with Pleural effusion, a condition where fluid fills up in the lungs. Basically, Lupus was now attacking my Lungs.
In the following week, the situation again deteriorated, and I was again taken to emergency. This time it was pericardial effusion, build-up of fluid in the space around the heart. Emergency room and hospital almost became my second home. Basically, I was in an internal war, a war with my own body where my life was completely at stake. Sometimes it felt like I was in a boxing match with my hands tied and my eyes closed, and I must still fight.
Medication, chemotherapy and side-effects, What were some of the challenges you faced in handling your condition.
Along with my treatment, I was taking almost 25 medicines a day and multiple injections to keep the body on survival mode. Then came a more aggressive form of treatment. I was parallelly put on chemotherapy to control my lupus activity. Generally, most patients are given oral immunosuppressants and steroids, but severe lupus cases are treated with chemo. Chemo was the hardest part. After every chemo infusion, the subsequent 4-5 days would be no less than a nightmare. I would experience stomach cramps, feel nauseated, and I almost threw up whatever I ate and spent most nights without sleeping. I would be taking the chemo infusion one day and go to the hospital the next day for my other treatment, completely nauseated and in pain. There would be mornings where I would get up with unbearable pain and uneasiness. After my 5th chemo dose, the pain got extremely intolerable. If I may say this, it reached a point where I could literally feel my soul crying for help and freedom. I don’t know if it makes sense, but that is how intensethe pain got.
Has it been difficult emotionally to cope with your condition? How has your family supported you?
Initially yes, it was emotionally difficult to cope with my condition. I was always healthy, eating right and working out almost daily. Having been diagnosed with something like Lupus was hard to accept. All my friends would say “you were the healthiest, how could this happen to you’. That kind of added more grief and didn’t help me to accept the reality. I started getting panic attacks almost every night. Something within me wouldn’t let me sleep. I would wake up in the middle of the night with a panic attack and pounding heartbeat. No matter what I did, I couldn’t manage to sleep. I have spent almost a month without sleeping properly. Through these tough times, my family was the biggest support system. It still is. They made sure that I got all the emotional assistance that was needed, and thankfully I was able to get over the panic attacks.
Since Lupus is a rarity among males, has there been any change in treatment for you?
I have read that since Lupus is rare amongst males, it tends to be more severe. We don’t know the definitive reason, but, the research is still going on.
What kept you going? How has this changed your life perspectives and ambitions?
I was always a hyperactive person with a lot of energy and enthusiasm. Everything about me was always overactive. I was a long-distance runner and an avid mountain trekker, and here I was, completely restricted to one confined place. Having said that, I have learnt to expect the unexpected now. I have slowed down mentally and physically for the better. In the last seven months, I have lived everyday as if it were my last. That has somehow brought a sense of calmness within me and made me look for the happier side of things. My work and other hobbies have kept me going through all the treatment and pain.
Having reached the edge of cliff, facing death so many times, having had blood transfusions, chemotherapy, dialysis, and still being able to get up every day, makes me feel blessed. I have made sure that no matter how much I am in pain, I always meet people with a big smile. Also, finding joy when you are going through tough times gives immense satisfaction. If I was tough earlier, Lupus has certainly made me tougher.
What is your advice to patients who face similar challenges?
I don’t know if I have the right advice, but what I feel is that it’s always best to live in the present. The certainty of momentary bliss is always better than the uncertainty of what is next. So, always find joy, even if it is momentary. Don’t think about future because most people are stressed thinking about the future.
One must find purpose and persevere when faced with tough times, otherwise the battle will be confined to you and your symptoms, and no matter what you do, your symptoms will always get to you.
Lying in the hospital bed for hours, looking at other people and looking at the wall and up at the ceiling, I also had the privilege to experience the significant power of human body. Even after getting exposed to immense pain and torture, our body has the capacity to tolerate and function. I realized that If the body doesn’t want to give up, why should I give up. I know its only half the battle won, but I am hopeful about the future.
What resources are available to you in your city to help you manage the condition?
I feel there is a huge scope of improvement. When I was diagnosed, it was very difficult to find the right doctors. In India, there are only 1000 rheumatologists. That is a very low count considering the number of rheumatic cases we have in this country. I even searched for support groups, but managed to find only one, Lupus Trust India. On the contrary, the other countries have multiple support groups with people coming together and raising awareness about Lupus. Now is the time to raise awareness and I hope to see more and more people coming forward and talking about their condition. That will not only help in raising awareness, but with awareness we will see more research and hopefully we will find a cure one day.
I have started raising awareness through my instagram account defeatlupus. I wish more and more Lupus patients would come forward and talk about their experience.
