Welcome back to my blog. In conjunction with World Sleroderma Day (29th June), I want to share a little bit more of my journey in completing my degree while battling Scleroderma (SSc).
Apart from having SSc, I was also detected with overt proteinuria and referred to nephrology. After 2 years of fluctuating readings, doctors decided that it would be better for me to undergo biopsy. I was in my 3rd year (semester 6) during that time. The date for biopsy was set on the spot after I thought it through (I went for the appointment by myself that day). However, I forgot that my parents would be travelling overseas at that time 🥴. After discussing with my family, my aunties were willing to accompany me on behalf of my parents.
Before I was admitted, I sent notification letters to all my lecturers whom I had classes with to avoid any problems since attendances to classes were important. If not, the chances of being barred from exam might be higher. It was during a hectic time when labs were conducted and lab reports must be submitted. Luckily, no tests were scheduled.
Supposedly I must be admitted to the ward in the morning. But due to lack of hospital bed, I was told to be there at noon. I was led into an isolation room at the end of the corridor. I never thought that I would be in a 1-person room as I prepared myself to be in general ward. What a bless. After settling myself down, a doctor came to withdraw my blood for blood test. After 3rd try, he gave up. It was evening already. He called his friend for help. After the 9th try and few more doctor, my blood was successfully withdrew. And it was already dark outside. This is a common problem in people with SSc since many of us might have small, collapsing vein or other conditions that make it difficult to draw blood. So, it is normal for us to be poked around with butterfly, branula a few times every trip of blood test. If luck was on us that day, one jab was a success already.
After the result was out, they told me that I need platelet transfuse. So, the jabbing for IV line preparation continued. I lost count after the 5th jab and it was still a failure. Lastly, they called anaesthesiologist for help. She was also failed. She asked help from her boss and brought over an ultrasound machine. Both of them tried to make an IV line at my neck. I felt like they tried to slaughter me with the machine pressing onto my neck and needle probing my skin (jk 😁). Still, it was a failure and the clock already showed past midnight. They told me that they would brought me to IR (interventional radiology) the next morning. Around 5.30 am, I was awoke by a doctor and was told that I need to have IV drip ASAP. She told me that there was a place where they didn't try yet. It was a central line, specifically femoral line. I agreed to it. Still, it was a tough journey to set up an IV line. Plus, I was alone on the 1st night since we thought no company was allowed.
At first, it was quite awkward to move around with a branula stuck at that area, but soon I got used to it. The biopsy procedure was in the afternoon, on 2nd day. I was guided and walked to a room. It was shocking since the room looks like a library with all the books and papers around. In the middle of the messiness, there was a procedure bed with all the necessary equipment beside it. I laid down on my stomach on the bed and was encircled by a few doctors including 3 specialists. I was briefed about the procedure. Later, I was given local anesthetic to my back area near the kidney. I could feel the needles probing into my skin, my kidney and everything that happened but I didn't feel any pain. After resting for 15 minutes, I was pushed into the isolation room. I couldn't move from the bed for another 6 hours. I was instructed to pee into the specimen bottles for them to check if there was any bleeding. Fortunately, my aunty, Acu, was there to accompany and help me after doctor told that it would be better to have a company.
I was discharged at 3 pm the next day. I went home and was given a week worth MC. But, I still had to submit my assignment the day I was discharged. I forced myself to complete it despite feeling exhausted from the hospital trip. Well, I guess that's all I want to share about my kidney biopsy experience. The result from the biopsy suggested that I might have FSGS but cannot be determined due to lack of specimen. I do have an IG story highlight about this. Feel free to watch it if you want to know more inside story ✌️✌️
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