Lupus Nephritis Stage IV – When it started to sink in

When I was first diagnosed with SLE, there were also blood trace and protein in my urine indicating that my kidney are also under attack. The rheumatologist advised that I get a renal biopsy to determine the extent of damage the SLE has caused to my kidney.

I was hospitalised to undergo treatment and renal biopsy. I had to collect 24 hours of my urine to obtain a more accurate reading of the level of protein leakage.

“Every time you go away, you (I) take a piece of me (you, kidney) with you (me).” Paul Young’s song could be the theme song of a biopsy room.

I remembered that I was wheeled into the biopsy room. The doctor explained to me the potential risks of the procedures and said his prayers. He told me that I would hear a clicking sound when the needle pierce through my skin right into my spine. He might have to repeat the incision three times to take three sample pieces of my kidney.

The head nurse gave me a cooling alcohol swab before addressing local anaesthesia to my spine. Then there was it, ‘click click’ followed by a chill down my spine when the needle pierced through the skin. The specialist did the extraction twice.

After the biopsy, I was discharged, and went back to my work immediately. I thought I have gotten enough rest during my time in the hospital, but it seems after the third day I started to feel overwhelmed by work and stress. I felt that I have to try very hard to keep up with the torrent of problems that I normally face during work. Those problems were tough but manageable back then when I did not have lupus. Now they felt like a gigantic black hole eating into my soul. I felt suffocated, and my world was about to cave in.

28 January 2016. 9.00am.

“You have lupus nephritis Stage IV.”

“Your SLE is very active now, and you will need to be on medication to suppress your immune system. You need to decide which immunosuppressant you prefer to take, and the medication starts immediately.”

“The first choice is Cellcept, which has less side effects, costs RM2,000 (USD466) per month. The second choice is cyclophosphamide, has some pervasive side effects, but only costs RM250 (USD58) per month.”

I was not prepared for this. I did not expect that the treatment for my lupus would cost me so much. I hear the sound of my world crumbling, and I tried very hard to withhold my tears. Everything changes once money come into play.

The first thing I did was call my insurance agent. I asked if lupus nephritis would be covered. The agent seems clueless, told me that she could only check for me the next day, and after I probed her with a more exasperated tone, she checked and told me a resounding ‘no’. I bought my insurance policy back in 10 years ago, and did not cover Lupus Nephritis. Should I have updated my insurance policy 1 year before, Lupus Nephritis would be covered. The feeling of helplessness overcame me.

Long story short, luckily my company insurance covered Lupus Nephritis. I still remember vividly the moment I broke down to cry in the nephrology ward waiting room. A nurse came over to asked me if I am fine, I had to try to stop to respond but I just could not. For the next few days whenever someone asked me if I am fine, I would start to feel like crying.

Luckily I had a very supportive friend, supportive family and a boss who helped me a lot by removing me from a particularly stressful job. When I finally could take my mind off my job, I was able to start to pick myself up. In fact, I would say I owe a lot to this movie called Meru, which lifted me out from the dumps when I was at the darkest time of my life. I will be reviewing this movie in my next post. Nevertheless, you could check out the trailer here:

So always remember this, there is no mountain too hard to climb, and no obstacle impossible to overcome, but the method of overcoming it may be different from what you think it should be. Stay strong, and like what my brother told me:

“You will be back kicking ass in no time, sis!”

Author: Li

This is a blog about the journey with my friend - Lupus, 500 days and counting after I was diagnosed. After I passed the initial stage of acceptance and moving on, it has been well so far. Whilst I have a full time job, I am also a writer for hire and could write just about anything. Contact me if you see anything that you like!

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