Chapter 3
*Trigger warning! The stages of life grief started to engulf me in order: denial, anger, bargaining, depression and acceptance. Every step consumed a huge parts of me leaving me hollow more than ever!
Stage one: Denial
August 2 2023, 1:30am
I was rushed to the hospital (Apollo Hospital) through an ambulance from Chennai international airport. I prepared a complete documented history of my case with the medical prescriptions and images of my skin as per the progress, I prepared this documentation because I wasn’t confident enough whether I will be conscious enough to explain or will be able to bare the pain to show the raw skin for examination. The next minute I found myself at the ER, doctors around me asking about when and how it started, finding my dad next to me in tears because I pushed him to a position where he can’t help me because I never disclosed about the pain or the images of my wounds understanding that it might broke him. As I showed the pictures and explained word by word and line by line managing to maintain a bright smiley face throughout.
Couple of blood tests were suggested by the ER doctors, they tried their best to drew blood from vein only to end up not getting enough blood from many sites. Later during my admission days we understood that my veins were collapsed thus resulted in difficulty finding a good vein for IV.
Morning 10am: the consultant doctor came to examine and with the first glance they knew it was pemphigus vulgaris yet they suggested for a biopsy as a confirmation. I was taken for my biopsy in stretcher having my mom by my side. As I was waiting, lying on the stretcher waiting in the procedure room, dr. MR entered the room for examination and marking the site for biopsy. As I was explaining the whole situation, he heard me in silence and suggested to cancel my return tickets as he knew it’s going to be a long term treatment. I was honestly shocked by those words, but convinced myself by saying that it might hardly take a couple of months and in no time I’ll be flying back.
In the duration of the waiting period I was advised to stay home with regular saline wash and dressing for the wounds and to start a high protein diet. It was the time when my parents actually got to see what was happening to me, I tried to put up the bright smile all along.
I remember the fear that crawled up on my fathers face when he found me fainted on the floor due to the speed of the ceiling fan or every time I tried to walk alone or the complete loss my ability to hold a cup of water or feed myself. Having 1L electrolyte water bottle near me because getting myself from the chair or positioning myself back to chair was draining my energy out.
I saw the fear crawled up on my mothers face when I lied on the bed next to her every night without sleep, lying straight on the under pad with my eyes wide opened starting the wall clock, when I insisted her to help with shower pouring cold water and foaming soap on my wounds, every time when I smiled or laughed out loud with tears running down my cheeks to hide the pain saying it’s too cold that’s sending ticks to my skin and every time when she found bundle of hair falling from my head only to discover that my scalp was way more damaged than my skin leaving bald spots while sweeping up the floor. Looking at the desperation in my eyes for her warm hug or craving for her attention for the endless stories I came up with.
Five days after my biopsy, results came positive for pemphigus with the DSG1&3 values more than >197, which means that the values were more than the capacity of the device to detect. I didn’t expect those values, during the procedure doctor explained me about the DSG test and about their values and I was so optimistic to say that I won’t be having 197, my values will be under 100 range possibly (which was obviously not).
August 6: first admission, was able to hear the callings at the nurses station, it was half past 8 when I got the room, by then I had my first transfusion of plasma and I could say something felt not right. Middle of the night I was able to feel radiating heat around my face and eyes, and my lips felt abnormal. I woke my mother from sleep to check in on me, only to her surprise to find my entire face was swollen (thus the burning sensation around my eyes and lips). She called for the nurse and they had no clue about my case, I could see it in their face it was a blank and they’ve never experienced a patient with my case. I asked my mother to click a picture of the state and to hold it till morning to show it during the doctors visit.
The night was no different than the other, I was wide awake trying hard to sleep leaving me so restless. Around 8am I started to feel sleepy by then I had my shower (which was way worse) as they got no call on how to treat me, bath me etc… every time they tried to me help me (hold me) they only ended up bruising even more! They felt helpless, mom felt helpless and I felt helpless, it is funny, isn’t it?! Being in such a hospital and still feeling helpless, being around hundreds of nurses, doctors and all sorts if medical teams around and still feeling helpless.!!!
By the time doctor came for the rounds I was too tired to explain, I was too tried to put on a smile and say everything went alright. My mother showed them the picture from the other night, the reaction after the plasma infusion and the doctor asked whether I had any other complains as they’ve planned for some more packets of plasma protein for transfusion. Nothing stroke at the moment other than the pain that was growing and my inability to resist them due to sleepless night.
Around noon the transfusion began and the pulse oximetry was connected as well, within few minutes I stared to experience discomfort around my chest and my face started to burn up. I was not able to breath properly that I started to cough voluntarily to provide some air(I heard it somewhere it good to try coughing during chest discomfort) as i did my pulses rate started to shoot up from 100-130bpm and within seconds they reached to 150bpm, mother ran to the nurses station and people came rushing inside with ECG machine and echo, cardiologist, general medicine team and dermatologist were called and my dad rushed from his office and they all were around me within minutes. I was noted to experience tachycardia during the infusion thus was advised to give antihistamine through IV.
Dr. Madhumitha (dermatologist resident, assistant of dr. Muralidhar Rajagopalan) who played one of the most important roles during my hospitalisations, she explained me that it could've been a drug reaction or it was an anxiety attack with all the sleepless and discomfort, and asked me to relaxed my mind as much as possible and spend my mind off from education and whatever that bothered me. Honesty until that moment I didn’t realise or gave a chance to my body or mind to agree with the fact that I needed rest, ‘cause before the lot of these happening I was discussing with my mom regarding sending emails to the university for seeking permission to attend my vivas through online and how many lectures I need to cover during the hospital stay. Poor mom didn’t attempt to talk back at me as she knew well I wasn’t in a place to listen and I was in complete denial..! Which I was in! trust me it didn’t get any better after.
Dr. Madhumitha visited me every morning and explained me what were the treatments that was going to take place and she tried her very best to make the nurses to understand how to handle me which is never to touch me, hold me, grab me or use any kind of tapes or glue around me as they stick , they would rip off my skin. Yes, during the ECG they stuck the electrodes which is like sticking plaster they glue to my skin that when they attempted to remove it as normal my skin peeled with it and left huge erosions. Every time when the shift changed at the nurse station they feared to take me under their care, because as per their protocol when they tried taking reading of my blood pressure (bp) using sphygmomanometer my skin from my arms were starting to bruise (blisters ) around and end of the day the skin eroded completely leaving me in excessive pain and I was too tired to process the pain that max time I slept trying to escape them all.
My dad tried his best balancing between office and visiting me that he spent his lunch hours around mom and me, by feeding the lunch to me and trying to take my mind off from pain. I could say that he was not the same person I saw on August 2, he started to look weak, I could say he lost weight And heaviness in his smile but he was full of positivity convincing me that I’ll be fine within days.
I had IGG infusion one after the other for the next three days and it was already 14 days since the hospitalisation. I saw no changes in me other than feeling worse day by day from then, I was no longer able to walk around or sit in the couch, I was on the bed all the time. Doctor came to visit me and insisted me to walk around the room and outside the corridor. I tried so hard to walk but I wasn’t able to, just within 5 steps tears came running down my cheeks that nearly I cried every day and night. On the 16th day dr. Muralidhar came for the rounds and he was disappointed to find me on lying on the bed even after his instructions to keep me mobile. He spoke about my discharge stating that anymore longer keeping me in hospital might lead to other complications (secondary infections) and asked me to go home and return back after 10days for my next dose of Ristova infusion and he warned me that during this time period the erosions will increase and I need to stay mobile. And he ended the conversation enquiring about my studies and he made the strong statement “TAKE A BREAK! Take a break from your studies, minimum of 6-8 months you’re going to be like this and your recovery complete resides in this break, I’m not being sarcastic, im hitting you with the hard truth which is you won’t be returning back by August end and cancel your tickets” and he left the room. All I did was stare! Nodding my head for every word uttered by him, I stared at the door for a long time, felt like everything paused for a moment but I wasn’t able to feel anything. (It might sounded way dramatic, but the whole world did pause for me at that moment because I quite don’t remember what happened after that). Entire night I was sleepless again, my headache, the pain was way worse I started to feel nauseous throughout, my heart beat was not normal and I fell under tachycardia again thus from then on I was getting frequent panic attacks and my temperature was 100 degree.
My chest was to heavy to smile, I wasn’t ready to greet anyone with smile. I was able to feel the rage rising inside me. By morning the nurses were instructed to debride (manual removal of dead tissues from the wound) my skin (one of the most unpleasant experience any human could go through), there were about 7 to 8 nurses in my room wearing gloves and I lying on my stomach as they started to peel the skin from my back and gluteal which was 60% and 80% already eroded that I was no longer was able to cover my back with any material. I screamed and cried out for my mother and I begged for them to stop the procedure. Few minutes later they all were exhausted as they weren’t able to remove much because once they start to remove the whole healthy skin around started to fall off with it which ended my extending the erosion even more. They tried hard to calm me, I was usually very friendly, giggling and chatty around them, but today they found me different I longer saw in their eyes, I couldn’t stop sobbing and all I did was begging them to leave the room and to let me lay on my back and sleep. I found my mom in the corner of the room eyes as red as blood and face swollen with all the silent tears.
At nights I still get them as my nightmares, several gloved hand touching my body and trying to peel my skin off and laughing so loud.
My temperature was still 100 degree and my body was trembling (shivering) that I was not able to talk for several minutes, the air conditioner was turned off and they gave me hot coffee and tried covering with thick blankets but they weren’t able to as the heaviness made the clothes and other sheets to stick on my skin and back was completely exposed as they had 60% erosions and was bleeding.
I reached out for my mothers hold trying to smile a bit hoping that could calm her. She asked me with her shaky voice, “where does it honestly hurts you, your body or heart?” Placing her hands on her chest. At that moment I completely lost, I longer wanted to pretend, I broke off completely with that one question that I was denying for so long.
Dr. Madhumitha came before my discharge to check on me, I cried to her begging no more debriding and when my mother told her about the happenings and she immediately turned to me saying, “I think what sir spoke you disturbed you as a whole, remember he said the truth and he never sugar coats, it’s just temporary you can get through this and it’s just a short break you’re providing to you’re body that it has been asking you for a long time, consider it a vacation!”, her words were true but I was not used to rest, I was not used being under…I’m not used being dependent….I don’t know how to process them all.
My dad entered with his face all happy staying positive as he can and truly believed I am getting better, it was the most hurtful thing to see in my life I thought ‘cause I knew I wasn’t getting better and I was falling ill and going to fall more ill.
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| *during the discharge of 1st admission |
Stage two: Anger
At home:
Every time I thought how worst it could possibly get turned way worse day by day during those 10days before my next infusion. I hated every bit of myself. I completely hated me the way I looked and smelled. I was way abusive and cruel to me….. (chp 4 to be continued)
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