Where do I begin from? I’ll start by introducing myself. My name is Deepina and I am 19 years old. Today I will be telling you a story. My story. Story of a girl with loads of hopes and dreams but not a normal life. It took me a long time to feel the abnormality of it all. My story could help a lot of people struggling through diseases that are hard to beat. But trust me, it’s never impossible. Everything happens for a reason. There is always a reason behind everything that we go through In life. Yes, it is also true that some diseases are unbeatable. But the most important thing about such diseases is the way we try and handle it. It’s in our hands to not let it consume us. Consumption by something can be deadly. You must not give anything the right to control you. No matter what happens don’t let it consume you. Face it, fight it and rip it apart. Be so strong that even life gets tired of questioning your abilities. Be so worthy that no one dares to challenge you. I’ll tell you a little about my disease now. I have a chronic kidney disease. Kidney patients have increased rapidly all over the world. The disease I have is common in my age group which is between 13-35 years. The most painful thing about a kidney disease is the fact that you’ll bound to be restricted to a place because you’ll be under dialysis. Dialysis is a technique through which all the toxins and water stored in our body gets removed via a machine.
So to begin with, 8th April, 2019 is when I got admitted in the hospital for my transplant after what felt like forever. It was scheduled on 10th April, 2019. I am basically going to take you through each and every day of my stay here at the hospital. I want you to know my journey. My story. A battle I have been into 2017. I want to tell you that a survivor is truly not a survivor without their share of sufferings. Let me tell you, the sufferings are endless. But trust me at the end of it, it’s all going to be worth it. To give you a glimpse of my journey, I would like to begin from the place I was first diagnosed with this disease. It was my hometown. I started to show up some weird symptoms a few months back in 2016 when I had typhoid fever a few times consecutively. When I got tested for typhoid, I went to a local doctor who did tell me that I was losing protein from my body. We got worried in the beginning but then he insisted that it’s nothing to worry about. Little did I know that my negligence would lead to something so huge and massive. Anyway so back to the story. I started showing up teeny tiny symptoms like swelling in my face, a little irregular bleeding etc etc. People at school would look at me and ask if I was actually okay but then I thought it was because I was into severe depression and always falling sick. I used to be so sick that everyone assumed that I was making it up. I was in my senior secondary and bullied most of the days at school. My health was affecting my studies. I would always be into stress, feel restless and mentally sick. All of it was very hard for me. So when I was preparing for my boards that were as usual scheduled in March, one day in January, 2017 I complained my mother of severe itchiness and dryness in my eyes. So we went to a opthalmologist. While checking my eye sight the doctor out of nowhere told me that you do know that your eyesight is getting affected due to your thyroid problem right!? I said to the doctor very confidently that I don’t have thyroid and then he tells me, are you sure? Because that pretty well seems like a goitre to me in your neck. Although I would be very honest, a lot of people have have pointed out my neck quite a few times. My brother is a doctor, so when I told him that the opthalmologist insisted on getting me checked, we got a few tests done. So it did show up that I had a thyroid problem. I went to my family doctor and he told me that I don’t have normal thyroid. So I got a tiny biopsy done to know what the actual problem was. Later the biopsy showed that I have a different kind of thyroid. It’s called “Hashimoto thyroiditis.” It’s usually a surgical procedure so we decided to visit a general surgeon. The doctor told us all about it and also mentioned that a person usually gets this type of thyroiditis when there is another potential disease in our body. To get to know to the root of the problem, we get a huge number of tests done. After the results come out, the doctor refers me to a nephrologist. To be followed, I was monitored for a few months to see if the problem of losing protein was improving or increasing rapidly. Unfortunately the problem was increasing. So the doctor asks me to get a renal biopsy done. This was the first time when I actually felt so much pain on my journey to this disease. It was the first procedure and an essential one to know what we were dealing with. I was kept for an entire day to do this procedure. Even though they had localised the area, I could feel the doctor remove tiny pieces and God I was in so much pain. It felt like breaking a bone but slowly. Soon my results got out and I got to know that I was suffering from an auto immune disease called “IgA nephropathy.” In the beginning I never really understood the severity of my disease. As time passed by and I had more frequent visits with my doctor, I realised what I really was into. It was that day, when I clearly remember what the doctor had written on my prescription, “Rapidly Progressive Renal Failure (RPRF).” That is when it finally hit me. Admist all this I had given up my boards and had picked up the option of home schooling. My brother knew the severity of my disease but didn’t tell us openly because he didn’t want to panic us. He wanted to give us some peace of mind until we could have it. Soon after a month or two I left my hometown and shifted to my native place for the treatment. My brother had got his pg seat there. I needed to be guided and for that I needed my brother.
Now, comes the first phase of this disease. The initial treatment was high dose steroids. Let me tell you, steroids are the worst thing out there. Steroids can mentally and physically destroy you. Steroids have a lot of side effects. I started with 60mg prednisolone. To begin with the side effects, the obvious ones are rise in appetite, massive weight gain, moon face, edema, depression, anxiety, insomnia etc. I experienced all of it, bit by bit. The worst thing was that within a week I had gained around 25-30 kgs and I hell looked like a big fat balloon. I couldn’t look at myself. I started self hating and self loathing myself. I couldn’t move because my legs and toes had rapidly filled with water. Until then I was already on food and water restrictions. Let me tell you another thing, renal diet is the worst there is. Out of 10 dishes on the table, 9 aren’t allowed. I would have such bad cravings. I would end up watching food related videos to satisfy myself and then later feel guilty about it. But at that time that is what kept me going. It was really difficult for me. My whole body had this huge blood red stretch marks. They weren’t normal ones. Eventually the steroids didn’t work and all my suffering had gone in vain. After the steroids the doctor prescribed immunosuppressants to give it one last shot. 5 days of immunosuppressants and I land up in the hospital. The day I get hospitalized, I get a massive seizure due to uremia. I lay unconscious for a day or two. The seizure makes me extremely weak and this was the first time when they insert a urinary catheter. Urinary catheters gave me a sense of what hell must really feel like. The pain that you go through due to a catheter is inevitable. You will only understand the degree of the pain is when you go through it. Like I said in the beginning, the sufferings are endless. And this was one of them. Soon after a 15 day stay at the hospital I get back home. My steroids get reduced to bare minimum to none by the end of six months and I start my dialysis during my stay at the hospital.
September 12, 2017 I have my first dialysis. It started with 2 hours. I had to get a central line done on the right side of my neck. Dialysis through a central line can be really painful. How would you feel if one stuck a huge pipe through your neck for 2 whole months. The discomfort was real. My first dialysis was horrifying. I suffered through various symptoms like tingling in the body, rigor, extreme body ache etc. The worst thing was that I wasn’t fully unconscious when they made my central line. They had given me no local anaesthesia. I begged the doctor for mercy as he cut through my throat and inserted huge needles through my neck. Eventually I got discharged and joined a hospital nearby for hemodialysis thrice a weak. 2017 to mid 2018 I suffered greatly. I would have severe headache and vomit post dialysis almost every single day. Each dialysis would be of 4 hours. Staying still for entire 4 hours is not an easy job. There were endless complications. It’s not going to be easy. There will come days when you’ll feel helpless and would want to give up. That is when you’re going to have to stay strong. Now the only betterment option for my disease was a kidney transplant. The procedure of it all took almost two years, which meant more and more dialysis. I won’t lie, even if you end up feeling weak and exhausted, you’ll definitely feel a lot better because the bloating will be gone. Water and diet restrictions, no urine output etc can make you feel awful. I could only have 500ml of water including all the liquid in my food. Too much liquid in the body could cause breathing problems, vomiting etc. It’s important that we maintain low potassium and sodium levels.
In 2018, May I was admitted again because my lungs had filled up with water and my heart’s pumping capacity had reduced to 30%. I was unable to breathe. I still remember that night vividly. I couldn’t go to the hospital that night because I had a very important blood test that was essential for my transplant the next morning. I suffered the entire night. I couldn’t sleep. I kept vomiting, my lower abdomen and stomach hurt like hell. The minute I tried to lay down I got up the next second because I couldn’t catch my breath. You know that feeling, to not being able to feel air in your lungs. I hope no one has to go through it. It’s worse than an anxiety attack. We CKD patients don’t respond much to nebulization. Our only constant source of relief and comfort was dialysis. I have had around 300 dialysis till date. My last dialysis was scheduled the day before my transplant on 9th April, 2019 for five whole hours. It really hurts when they stick two giant needles in your arm every other day. But in the end, no matter much pain you feel, you get used to it after a while. That’s the thing about pain, the more you go through it, the less you start feeling it. The more it becomes bearable and beatable. After a point you start feeling numb to everything that’s happening around you. The most important thing I learnt in my journey as a CKD patient was learn how to be patient enough to accept what life has to offer. The faster you accept it, the easier it becomes. The important starring point is to recognise and acknowledge the double nature of mind. Those who are magnetised are full of confidence and faith. You know you are born to succeed and to win. You just have to believe in it. It’s not going to be easy but at the end of the day you are going to feel a lot better. Train your mind. The conscious mind is like the navigator or captain at the bridge of the ship. You direct your ship. It’s upto you to fight the storm and make it to the shore. Only you can handle and control your life. No external being can give you instructions on how to fight your own battles. If you repeatedly tell yourself that you can do it, you will do it. And it’s a fact that there will be scenarios in which you’ll be repeatedly reminded that you cant handle it, that you can’t do it but that is when you constantly have to push yourself to the edge. Expand your boundaries. You’ll feel so good when you get the taste of what being free feels like. Learn to find all the things you need and that my friend is the treasure house of eternity within you.
Now I will be telling you about my transplant. Just like I mentioned earlier I was admitted on the 8th. The first day of my stay at the hospital was normal. The second day I had my last dialysis followed by which my doctor made a channel on my right arm to start with the pre operative medications. The second day was quite satisfactory because I knew I was done with dialysis. I was so happy about it. It was painful as usual but I was ready to say bye to dialysis forever. The doctor on the day of the transplant asked me if I was scared or nervous. And to be very honest even though I couldn’t sleep the entire night I didn’t feel nervous at all. I felt ready. Ready to start a new life. A life, a chance that I was lucky enough to get for second time. I was prepared for what was about to happen after the surgery. I knew it wouldn’t be easy but I kept picturing all the things that would happen after I get past it. That kept me going. My transplant was done within 7-8 hours. Even though I was extremely drowsy, the first thing I heard was my brother calling out my name. The sound of my brother calling out my name felt soothing and I drifted back to sleep again. Whenever I kept gaining consciousness, I would feel this intolerable pain run through my body. The catheters attached to my body hurt and burnt like hell. They kept supplying fluid to my body in order to monitor the kidney. Fortunately I was responding well. Whenever I regained consciousness I would beg them for water. My mouth was so dry. The nurses were kind enough to give me a cap of water whenever I asked them for it. So this was all about my first night of my transplant. The next day, real early in the morning they made me sit up. The pain was excruciating. I screamed and begged for them to stop but they kept assuring me that it’s going to get better. I have to hold on to it. The only thing that I kept constantly thinking was everything is going to be fine. Just a few more days of pain and I get to relive a completely whole new life. Life with possible hopes and dreams. Admist all this I lost a lot of blood. My hemoglobin got down to 6 so I was supplied two units of blood. My legs got a little swollen too due to so much liquid being supplied to my body. On the third day I started sitting and slowly walking in my room. I was starting to feel better but then there was a lot of pain too. I kept reminding myself that on day 5 it’s going to removed. Nights were really hard for me due to the catheters. They would hurt the crap out of me and I would cry and beg them to remove it. I tried as much as possible to avoid painkillers. I didn’t want to be dependent on them. I wanted to fight no matter how much pain I felt. I kept picturing all the good things that would happen after all this was over. I feel so lucky when I think of all the people who took care of me. My doctor’s, my nurses, the entire team and my family. I can’t thank them enough. There was not a single moment when I felt left out. They were constantly by my side through it all. Finally on day 7 I got discharged and got back home. Before getting discharged I made sure that I wrote tiny bits of appreciation for everyone involved in my speedy recovery. I feel privileged to be surrounded with such magical and kind people who believed in me and stuck with me through thick and thin.
Today I feel better than anything I have every felt. I feel alive and whole again. I feel joy, happiness, strength, wisdom and overpowered. I feel proud of myself. I thank my inner self to have kept it going. I want everyone out there to know who are suffering that you are not alone. That there are others like you out there with whom you can talk to and express yourself. You are not alone and you’re never going to be. You hold the power of telling your story anyway that you want. It’s yours to narrate. It’s your struggle, pain and strength to fight it all that makes you a warrior. Always remember, you have nothing to lose. You can always try harder and harder. Your boundaries define the person you are.
Every thought is a cause and every cause is an effect. The law of life is the law of belief. A belief is a thought in your mind. Do not think of things that will harm you or hurt you. If they harm and hurt you, train yourself to fight against it. Heal, inspire, strengthen and prosper. Change your thoughts, train your mind and you’ll be the one changing your destiny. Peace of mind and a healthy body are inevitable once you begin to think and feel the right way. Never forget that you and your experiences in life matter. Whenever life puts you down, think of all the things that you have gone through. Think of how far you’ve made it and appreciate yourself. Don’t underestimate yourself. The most amazing thing about being a human is that you know you have no limitations and boundaries.
Everything around me feels so much brighter. I get to look at life in a completely new way. I know how to value my life and I am going to make every single day of my life count. Thank you to everyone who were by my side during my journey as a CKD patient. Thank you for hearing me out. It’s never too late to value the things that matter in life. We will rise and shine even in the darkest of nights. Do you know why? Because the fire inside us burns brighter than the fire around us.