Kidney biopsy (GwSSc3)

 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 ✌️✌️ 

Graduating with Scleroderma part 2

Another unforgettable experience was when I was having a final exam in meeting room, also in my 3rd year. The meeting room have a platform-like structure surrounding the middle area, so we must step onto the platform if we want to go to the door. After the answer sheets were submitted to the invigilator, which happened to be our lecturer, we were busy packing up our belongings. As always, I stayed a little behind from everyone. When it was my turn, not more than 10 people left in the room. As I stepped on the platform, my leg gave up on me again and I fell on my knees. I tried to ask help from Mimi & Hanis, my two close friends. Somewhat later, I found myself laying on the floor face first because my back also gave up on me. Luckily, the floor was carpeted. In an attempt to stop me from falling hard on my face, mishap occurs to Mimi's pants (I felt guilty up to this day even though she's cool about it). 

I needed to lay on my back first before I could get up. Mimi & Hanis both stepped on my feet to planted it to the floor and pulled me up. After 2 attempts, I was able to stand up. They helped me packed my belongings & accompanied me to my hostel. Once I arrived at my room, I felt a stinging pain at my knees. There were bruises and a little skin abrasion. It took about a week to heal completely. What a catch for such small injuries. 

There was another falling incident which happened in my 4th year. This was when I went back to live in hostel during the MCO 3.0 in Malaysia. That day, I went to the cafeteria to buy food for lunch. I went alone since my sister, which happened to be my roommate, was fasting. I didn't bring my phone with me. I bought rice with beef soup and sambal belacan. Then, I wanted to buy some drinks. As I walked to the drinking stall, I found my legs stopped working mid-air causing me to have misstep. As I tried to stop myself, I later found myself fell on my face, surely a hard one. I could not wake up by myself. A few cafeteria aunties came to my rescue. They helped me got up and carried me to a chair. Thank goodness they all somewhat knew that I was not very well from the beginning. It was rather embarrassing with all eyes on me, but what could I do. My right forehead was swollen as big as an egg. An uncle who works at the hostel knew my father & he contacted my father. Another uncle called for ambulance from university clinic. A few students informed my sister & she later came down. The ambulance arrived and I was taken to the clinic. 

Once at the clinic, I was examined by the doctor & taken for a X-ray. Luckily there was nothing serious occured. No concussion or whatsoever. I was discharged with few medication for the swollen. Later, my sister's friend came and gave us a ride to hostel. Funny enough, I have an appointment with rheumatology at GHPP the next day. I told the doctor about that incident. She referred me to neurology department. The swollen took about 4 days to subside. And I felt rather traumatic to went anywhere alone without my phone for a few weeks after that. 

As for my Final Year Project, I was quite pitiful. I need to change my project at the very last minute due to the unexpected MCO 3.0 that happened back in 2021. Before that, I had changed my title once from the original one. Let me tell you how we choose our FYP title. First, we must submitted a form with our top 3 selected topic. Then, the result will determine our project & supervisor. I, for sure, filled in my form and submitted it. However, 1 topic was short from the list. Little did I knew that the missing topic was specially intended for me. After a few thinking, I changed my title to accommodate my condition. As I prepared to start my project after semester break, the Malaysian government announced MCO 3.0. WTH. That night, I could not fell asleep at all. I planned another project, wrote another proposal and sent it to my supervisor. Luckily, my SV was understanding and he allowed me to change my title again. Well, as the time went by, I managed to finish my project within the limited time. And all the writing and presenting went well without major  hindrance. And as of October 2021, I officially graduated with not-so-flying-colours but "boleh la" (so-so). I could accept it since I knew I did gave my best even though I was once a very brilliant student during my school years. I knew that having this disease cost me my brain capacity with all the brain-fogging. Tbh, I went back and forth with google translate since there are certain words that I forgot the spelling, the words in english even simple ones (sometimes). So, pardon me for any mistakes that happened in this writing yeah. 

Well, I guess that's all I wanna share for the time being. See you in another posting soon. Take care & stay safe. Be happy and enjoy the moment. 

Graduating with Scleroderma part 1

 Hello!! Long time no update about my life with Scleroderma (aka Systemic sclerosis, SSc.) y'all. This time I wanna share about my degree life as someone with SSc. 

Alhamdulillah, I've completed my B. Sc. (Hons.) Biology in USM on time, which was on October 2021, as per 4-year degree programme. However, the convocation was only be able to be held this year due to Covid situation. So, yeayyy!! I was able to wear my graduation robe and walk on the stage last May. It was coincidental with my birth month & eid month. So, lots of things happened in the span of that one month. 

Having this disease was not easy especially for me and for those around me; my family & my close friends. There were a lot of unfortunate incidents, blood, sweat, tears, self-deprecating, mental health crisis, etc. But, I was able to overcome those with the helps and encouragement from people around me. 

For those who didn't know, I was diagnosed with SSc. in my 1st year of degree. It was quiet devastating at first since we never heard about it. But, as the time goes by, everything felt somewhat tolerable despite a few hiccups from time to time. I'm grateful enough that I was diagnosed earlier (about a year later after symptoms appeared). And due to me being in Malaysia, a tropical country, the progress of my symptoms were slower compared to others in 4-season countries especially in terms of sclerodactyly. It was not completely uninterrupted since the tightening still occured but at a much slower & under controlled. Raynauds still persist until today. However, calcinosis was long gone after I stopped taking calcium supplement. The scars left by the calcinosis still visible on the tip of my fingers. Telanglectasias are all over my body. Some doctors said it was not that but rather side effect of prednisone. I don't really know which to believe. GERD is getting worse especially at night, sometimes I'm gassy and bloated all day, sometimes I don't. That is the update of my current condition. 

Now, let's talk about my degree journey. I think I wanna share unforgettable experiences during my 4 years as a university student. Having SSc. have impacted a lot of daily life activities especially mobility issue. Going back & forth from classes to hostel were challenging when my hostel was located on the hill, while the lecture was located about 2 km away, with lots of stairs & reclining road. When I was feeling better, I walk a little to the bus stop & rode the bus to class. If I was having a not-so-good day, I would took Grab/Uber. 

Speaking of bus, I had an unfortunate incident while riding the bus one day in my 3rd year of university. On that particular day, me & my friends went to Queensbay Mall for an outing after class ended. We took the free CAT bus to commute there. On the way back, after few minutes of waiting, the CAT bus arrived. There were quiet lots of people also awaiting for the bus. Everybody were fighting to get on the bus first to grab a seat but I stayed a far bit behind. When almost everyone boarded the bus, I crept my way up to the bus. I climbed onto the bus with my right leg first. It struck me the moment I tried to push my body up to stand that my leg gave out on me at the bus' door. WTH. The bus was going to move at any time. I dragged both of my feet into the bus and kneeled by the door finding for support. Luckily I was not alone. My friends tried to pull me up at first but it was a failed attempt. They helped me to grab my bag & other things from me. After several tries of trying to stand up by the door, I was devastated. A lot of people also look at me. I was really embarrassed but what could I do. After few minutes, an elderly woman (around 50 yo) stood up from her seat. I made my way slowly while knee-walking to the empty seat. I then prompted myself up the seat feeling really grateful for the aunt. 

When we arrived at my hostel, my friend, Mimi, accompanied me back to my room. Not gonna lie, I felt that my leg would gave up on me anytime after I disembarked the bus. The journey to my room was challenging in that condition since I must climbed up a flight of stairs. But, I managed to endure it until I arrived at my room. Once I saw the bed, I collapsed on it immediately not having any energy left to remove my socks or anything. That was a really bad day for me. I uploaded an IG story about that incident hoping that the older members of my family were not alerted especially my late grandmother since she was not well. However, she later found out about it from my aunt and cried a little (according to my aunt). Later that night, I was lectured by her through phone calls and was given a warning of not going anywhere without any accompany. Since that day, I have trouble with busses and would think thoroughly before I rode one up to this day. 

One Asma' Chapter 4 (Kejar-mengejar penceroboh)

Tahun berikutnya, bilangan pelajar luar negeri bertambah. Adik Iffah, Izzati juga menyambungkan pelajaran di situ. Junior Amirah, Sarah dan Aqilah, serta junior Syammas, Hawa, turut sama sambung belajar di MMP. Maka, bertambahlah bilangan pelajar yang tidak pulang pada minggu balik. 

P/s: sila rujuk gambar di atas untuk kedudukan kawasan aspuri. Bangunan yang bertanda X masih belum wujud pada ketika itu. 

Pada suatu petang hari persekolahan, kesemua pelajar perlu mengosongkan blok masing-masing dan ke masjid aspuri (surau). Setelah selesai menunaikan solat magrib, tiba-tiba terdengar jeritan dari blok A. Jeritan itu datangnya daripada pelajar yang tidak turun blok. Setelah disoal, dia menyatakan bahawa ternampak kelibat seorang lelaki di dalam blok. 

Perkara tersebut dimaklumkan kepada warden. Kemudian, semua pelajar diminta untuk naik ke blok masing-masing serta memastikan tiada barang yang dicuri. Boleh dikatakan setiap pelajar memegang apa sahaja alatan yang boleh dijadikan senjata seperti penyapu, penyodok, gunting dan sebagainya. [ Waktu ni aku pegang gunting kertas kalau tak salah. Adrenalin memuncak, duk pikiaq kalau jumpa, tibai saja. Dia sorang, kami ramai.]

Dalam keadaan kelang-kabut, terdengar pula jeritan lain mengatakan bahawa si lelaki itu telah menyamar sebagai pelajar dengan memakai telekung dan keluar dari blok menuju ke arah padang asrama. Maka, berbondong-bondonglah pelajar berlari mengejarnya. [ Mentang-mentanglah pakaian rasmi kami turun blok pakai telekung, dia pun join sekaki sebab nak konfiuskan orang]

Dikhabarkan bahawa si lelaki terbabit telah memanjat tangki air besar di tepi sekolah itu. Pada ketika itulah, pihak polis tiba. Mereka pun memeriksa tangki air tersebut. Kedengaran suara sekumpulan pemuda seperti bersorak kegembiraan merentas jalan besar pada waktu sama.  Setelah beberapa ketika, polis datang memaklumkan bahawa tiada apa-apa yang dijumpai.

Malam itu, kesemua pelajar diminta membaca surah Yasin disamping al-Mulk sebagai pelindung diri. Mereka juga bergilir-gilir berjaga di bilik masing-masing untuk keselamatan. Biarpun hampir 10 tahun berlalu, masih terbayang peristiwa kejar-mengejar itu sehingga kini. Antara pengalaman berharga bersekolah di sekolah perempuan membuktikan kami kuat dan berani dalam apa keadaan. Kita jaga kita [cewwahh]

Sehingga ke hari ini, banyak persoalan masih belum terungkap. Benarkah ada lelaki yang memecah masuk asrama? Kalau betul, bagaimana dia melakukannya? Satu-satunya cara adalah melalui pintu di rooftop (flat rooftop tempat sidai baju). Hendak dikatakan salah, sorakan kegembiraan pemuda tika itu menimbulkan syak wasangka. Hmmmm entahlah. Wallahualam. 

One Asma' Chapter 3

 Selepas selesai berkenalan, Iffah pun duduk termenung di atas katil. Sambil termenung, sambil memerhati orang yang baru masuk. Petang pun menjelma. Bilangan orang yang masuk keluar bilik pun mula berkurangan. Iffah pun turun dari katil meninjau keadaan bilik. 

Setelah beberapa langkah menapak, Iffah terlihat kelibat seorang pelajar sedang duduk di atas katil. "Assalamualaikum. Nama apa?" Iffah bertanya. Nama pelajar tersebut ialah Nurul Amirah. Maka, Iffah pun perkenalkan diri. "Asal mana?" tanya Iffah. "Penang" jawab Amirah. "La, kami pun oghang penang jugak." Iffah menjawab. Rupa-rupanya, mereka berdua berasal dari Penang. Kebetulan pula, mereka berdua juga sekelas, Tingkatan 1 Khadijah 3.

Bilik Asma' 1 juga mempunyai ramai pelajar luar negeri. Syammas dari Kedah, Hani dari Melaka, Ieman dari Selangor, Anis Syukriah dan Aqilah dari Terengganu. 

Pada hari pertama persekolahan, mereka ke sekolah bersama-sama. Mereka menghadapi masalah komunikasi kerana dialek Kelate yang digunakan di dalam kelas. Namun, masalah komunikasi dapat diatasi dengan pertolongan rakan-rakan sekelas. 

Pada minggu balik, kebanyakan pelajar asrama pulang ke rumah masing-masing. Yang tinggal di bilik hanyalah 3 budak utara dengan seorang senior tingkatan 4 yang baru berpindah ke MMP, Kak Nisah, orang Selangor. Manakala yang lain-lain pulang ke rumah nenek atau saudara mereka. 

Jadi, warden mengumpulkan pelajar-pelajar yang tidak pulang di dalam satu/dua bilik sahaja. Pada waktu tersebut, bilangan yang tidak pulang memang teramat sedikit. Makanan pun perlu dibeli di luar kerana dewan makan tidak menyediakan makanan. 

One Asma' Chapter 2

 Chapter 2

Setelah beberapa hari menunggu, surat tawaran berserta segala jenis borang tiba menandakan bahawa Iffah berjaya menempatkan diri di MMPKB. Maka, segala persediaan untuk berangkat ke Kelantan dilaksanakan. Maklumlah, pertama kali bakal berkelana di bumi lain seorang diri tanpa sebarang kenalan. 

Hari pendaftaran pun berkunjung tiba. Setelah mendaftarkan diri di kelas 1Khadijah 3, Iffah mendaftarkan diri di asrama pula. Ternyata bilik yang bakal dihuninya adalah Asma' 1 (1A). Blok Asma' adalah blok terbaru berbanding blok lainnya meskipun telah berdiri di situ lebih daripada 10 tahun. 

Pertama kali menjejakkan kaki di dalam bilik, perasan terkejut tidak dapat digambarkan kerana ianya tidak seperti yang dibayangkan. Iffah membayangkan yang setiap bilik adalah seperti asrama sekolah kementerian. Rupa-rupanya, keadaan asrama di MMPKB adalah jauh dari bayangan minda. Jumlah penghuni di bilik 1A sahaja sudah melebihi 40 orang. Katilnya double-decker, dibahagikan kepada 6 kumpulan kecil, satu kumpulan ada 4 katil double-decker, dengan jumlah maksimum 8 orang. 

Iffah ditempatkan di katil atas berdekatan dengan pintu masuk ke bilik. Bercakap mengenai pintu, pintu di setiap tingkat hanyalah ada di hujung koridor. Disebabkan 1A bilik yang paling awal, maka dekatlah kami dengan pintu tersebut. Tambahan pula, bilik kami tidak dilengkapi dengan pintu khusus, hanya pintu gerbang semata. Agak bahaya jika difikirkan, tapi mujur setiap malam pintu pagar blok dikunci dan pintu di koridor utama pun turut dikunci. 

Katil bawah Iffah juga dihuni oleh pelajar baru. Namanya Nurul, orang Kelantan. Kumpulan katil kami terdiri daripada 4 pelajar tingkatan 1 termasuk Faten dan Nayli, serta Kak Mah (senior tingkatan 5) serta 2 orang lagi (tak ingat siapakah). 

Almari pun hanyalah bersebelahan katil sahaja. Almarinya pun tidaklah sebesar asrama sekolah kerajaan, almari 2 pintu, seorang akan dapat satu pintu. Loker buku pun dikongsi 2 orang satu loker. Minimalis habisan. Walaupun begitu, semangat untuk menuntut ilmu di negeri serambi Mekah terus berkobar-kobar. 

VACCINE DOSE 1, 2 & 3

 It has been a long time since I last upload something in here. Today I just want to share my experiences with COVID-19 VACCINE as an immunocompromised patient. For those who didn't know me yet, I'm having an autoimmune disease known as Scleroderma since December 2016. Thank goodness that everything is still under control even though  I'm being referred to few specialists: rheumatology (main), nephrology (main) and neurology (for the time being). Supposedly I was also referred to  dermatology, but I ditched it since I was too busy to go to hospital frequently. Luckily, both of my main appointments were arranged on the same day and they work close to one another. Furthermore, I am also on methotrexate (MTX) that make me more susceptible to infection since my immune system is being controlled extremely. 

Once the government announce that vaccine were available for public, I was getting overwhelmed with many thoughts. When the Malaysians fought hard to book a slot for Astra Zeneca, I didn't join the fight. Fortunately, my appointment with my doc was approaching at that time. On the appointment date, I was accompanied by my father as usual. After having the regular check up, the doc asked me if either I wanted the vaccine or not. As fast as lightning, I nodded. Then, the doc told me more about vaccine that were being given by the hospital's vaccine centre. The vaccine given was Pfizer due to the fact that most people that were vaccinated there mostly patients. She then filled my information in the web and gave me the medical slip for vaccine. I felt slightly guilty since I was the earliest in my family to get vaccine. 

I was very impatient while waiting for my 1st vaccine on 11th June 2021. Everyday I checked MySejahtera for any update on my appointment status. I was filled with anxiety since there were nothing while people who got the spot for AZ had status update on theirs. Unfortunately, travels between district were not allowed due to increasing covid cases. So, I needed to go with university's transport. The procedures were quite troublesome since I must filled in few forms and got clearance from the university. And during that time, I was required to travel to hospital frequently and those procedures must be done each time.  Don't ask me, I got all mad when thinking about this. However, the drivers were all good and  understanding. 

On the long-awaited day, I wore short-sleeved t-shirt and layered it with cardigan since many people suggested this. I rode the van all by myself, just imagine how embarrassing and guilty I felt when there was only me as the passenger in the big van. What can I do. Once I got there, a lot of people were queueing. I joined the line. Most of them were elders in wheelchair, and I was possibly the youngest there. Hmmm what can I say. While waiting for my turn, it started raining cats and dogs. By the way, my doc did highlighted that I have tachycardia which is a condition of abnormal heartbeat rate in the slip. The staff who took my blood pressure look puzzled but then I said " it's always like that for me". Then, the procedures continue as usual. It's time for my 1st jab. I felt slightly nervous since thus is my first time I got vax shot after so long. But, it was better than I expected since I used to getting blood drawn out for blood tests that usually took around 3 jabs before the blood could be drawn. I only knew later that MySejahtera update were done on the spot. My anxiety was all for naught. The side effects after 1st dose were only tiredness, red and sore at injection site, muscle and joint pains without fever. Then, life went on plainly in hostel dorm. Btw, it was the firts time that I stayed for 2 solid months in the hostel without going back home. My home is considered as nearby while my father also works as lecturer in the same university. 

My 2nd dose was on 2nd July. A few days before, I had another appointment with neurologist due to mishap that happened prior. Rheumatologist referred me to neuro since she worried that something bad might happened that caused me to face an accident before. It was a tiring week for me to be honest. Nothing much happened during registration. However, upon receiving the jab, the feeling of vaccine dispersed was not there. I tried to be positive. When I got to my room, there was no side effect emerged, no joint pain, no muscle pain, no redness, nothing at all. I tried to be positive. A few days later, I read a news article about empty vaccine syringe and later, more and more about vaccination mishap surfaced one by one. I was overwhelmed with negative thoughts. What if the same thing happened to me? Why I didn't look closely when I was jabbed? I did received the required amount right? Almost a week I thought about this. But I couldn't do anything to calmed myself since there was no evidence and solely rely on my memory. I tried to be positive about it. 

Months later, the government announced that 3rd dose were needed and they prioritised frontliners followed by elderly citizens. But, the condition for 3rd dose is that the duration from last shot must be at least  3 months for Sinovac and 6 months gor Pfizer. Once again, I felt disturbed when the conditions did not aligned with me. Luckily, I got appointment with me rheumatologist on 18th November. Actually, the date was postponed from September when the Covid cases when frenzied during that time. And so, there I went to the appointment as usual. Fortunately, I arrived relatively early before many more patients. Thus, I met with the doc early. After finishing my routine check up and asking questions, she asked me if I wanted the 3rd dose. Being me with the insecurities about my 2nd dose, of course I did want it ASAP. She filled me a form by 10.30 am for the vaccine slot at 12.30 pm that same day. I was on my toes because my nephro appointment was not settled yet. Plus, the waiting time for medicine dispense at the pharmacy also quite long. Luckily, all of them finished by 12.20 pm and the vaccine location was nearby. I rushed to the location and arrived there at 12.28 pm and no people was waiting. The processes were smooth like butter. And I felt at ease since not many people were around. But, as soon as I entered the car, I had splitting headache and my blood pressure after vaccination was low than average apparently. After few hours of sleep, the headache was gone.  The side effects for my 3rd dose were similar to my 1st one with muscle and join pain, tiredness, and so on. 

That's all for my vaccination experiences for all my three doses. Actually, there were many more that happened, but I cut it short 😁😁. See you when I see you. Byebye 🤗🤗