The After Story!

Hey! Been a while, huh? So, you must be wondering what next after the big transplant. You’ll be delighted to know that my story doesn’t end here. That, There is more to the story than there has ever been. Life works in mysterious ways. Its nerve wrecking in my case mostly. I was really happy, you see. It felt like the most amazing feeling in the world. I felt more alive than I had ever been in my entire life. I had this feeling that now was finally the time for me to shine. Little did I know that life had different plans for me. That my life wasn’t ever going to be normal. Ever wondered what the word normal really means? The term means different things to different people. Its totally different for a person like me who is battling with an auto immune disease. For example, for me getting to drink an entire glass of water would mean normal. Its equal to a luxury
I can’t afford. I am a stage 5 CKD (chronic kidney disease) patient. It means my kidneys have stopped working and my source of survival is a machine that filters my blood and removes the water from my body. Truth be told, dialysis can be really painful. But trust me when I say this, after my transplant, the amount of excruciating pain that I had to go through is far much worse than dialysis. I would take dialysis any day. So to begin with, in my previous post I wrote everything about my journey and my transplant. It ended on a very happy note. But. Two-three weeks later my body started showing its true colors. It started rejecting my new kidney. I was admitted and had to get an anti rejection treatment done to try and save the kidney. It worked for a few days and was back to rejection. Soon, several kidney biopsies and anti rejection treatments were done. Nothing could salvage the new kidney. We even tried plasmapheresis but nothing could save it. I faced rejection 5 times within the 6 months post transplant. In the end I got CMV viremia as well. The treatment for rejection and cmv viremia are totally opposite. There was no way we could salvage the kidney. There is only one hospital in the entire world that has created a vaccine to treat this kind of a problem. Every time I was admitted I had to get a central line done in my neck for the treatment and kid you not, getting a central line catheter can be really painful. A catheter is placed into a large vein that helps in intravenous therapies. In my case it was used for the ivig infusion. Every ivig infusion caused major migraine attacks in my case. The infusions took an hour long and I had to take 5-6 bottles per day which meant 6 hours maximum. The nerves on the side of my forehead felt like they were going to explode. I couldn’t shake the feeling of tearing them apart with my own hands. My eyes hurt and sometimes my entire body. My blood pressure would strike up and sometimes I would even get a little bit of temperature. These were mostly all the things that happened during the ivig infusion. I had to get a central line catheter done 5 times post transplant to treat the rejection. each time it kept getting worse. When my doctor decided to try plasmapheresis which is basically a process where the plasma is separated from the blood cells and replaced with albumin. After every plasmapheresis session I would suffer from a really bad stomach pain along with body aches. I was glad that my brother would stay with me while i was at the hospital alone. I would feel so lonely and tears would roll down my cheeks involuntarily. Only one thought kept bothering me. “why me?, why so much pain” oh, the unending, intolerable pain. My insides were eating me up. The 5th time when things had gotten worse and the treatment could have killed me I took a step back. My blood pressure had strike up so bad that I wasn’t supposed to survive it. My head was going to open up. The pain was killing me. I kept crying and begging them to give me something to make the pain go away but nothing seemed to work. My reports were bad. My condition was getting worse. Hematuria, acute attacks on my surgical site etc etc. In the end they had to stop the treatment and take a break. During that break i thought a lot. I realized that if I am breathing right now, its probably for a reason. My reason of existence must mean something. Maybe, after all, there is a grand plan for me. Maybe I was born just to give out to the rest of the world. Just give. You know what I mean? Today, its been one year since my transplant failed and I have been on dialysis since forever. but trust me when i say this, I am fine. I am okay. i have accepted life the way it is. Yes. I will have to be on dialysis for the rest of my life, but that’s okay too I guess. There is a quote from my favorite movie which states, “life will be over before you know it” And so I say, breathe and live like nothing else in the world matters. Do it while you can. Everything and everyone around us is so so beautiful in their own specific ways. My pain, my sorrows, my experiences and my life has only made me stronger and wiser. I am proud to tell you that I am a 20 year old whose life depends on a machine but finds life from things like art and the people she loves nearly and dearly. so, live better. Every. Day.

4 Comments

  1. It’s amazing that you’ve managed to find the courage and will power. I’m sorry that you had to and still have to go through so much. But I’m glad that you’re making every moment worth it. And thanks to you, I will take extra care about living my life to the fullest.

    Liked by 1 person

  2. If only the whole world read this, we would live in a different kind of place. Everyday is precious and a celebration. And you are a warrior and a crusader of sheer will. I can never understand what you go through hence I will not reciprocate any feelings. I only know one thing that this one life bestowed upon you is worth fighting for. You are an epitome of everything good about life. Needless to say, matching your intensity is next to impossible. Please keep writing. We need it. 🙂

    Liked by 1 person

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