First transplant

The next day for me came after a two-week coma filled with only silence and darkness. During the surgery I lost a lot of blood, which is why I received a few doses of Octaplas. A machine called ECMO kept me on life support for four days. The heart is by itself such a fascinating organ; it can regenerate in just two weeks, which is why they “only” operated on my lungs. The left lung bled out after three days and a haematoma appeared which is why they had to cut me open again. They did a biopsy which showed no risk of rejection. I used to weigh 55 kg and I lost 15 kg in three weeks, so now I was 40 kg with a height of about 175 cm. They would first administer supplements through infusion while I was asleep, and after a few days after waking up from a coma, I began to relearn how to swallow, first water and later on food that was ground and chopped into little pieces. In the catheter Hickmann they found Staphylococcus, along with Enterobacteriaceae, which were both in the donor’s system as well. And they found Pseudomonas in the urine. While I was waking up, I heard my mum saying: “Dea, it’s over, you have new lungs, stop chewing on that, it helps you breathe”. I wasn’t aware of the situation just yet, but I remember that there was something in my mouth that irritated me, which turned out to be a tube. I was reintubated because they tried to take me off the machine, but I still couldn’t breathe on my own and I developed cyanosis. There was something wrong with the state of my consciousness and they suspected I had some form of POCD so they sent me to get a head CT scan. They started giving me a quarter of an antidepressant. In the lower parts of the lungs there was an infiltrative process. Next thing I remember is waking up again and seeing that I have a breathing tube in my windpipe and my mum was telling me once again that I had surgery and that I got new lungs. I still didn’t know what exactly was happening, I was confused, but my memories were slowly starting to come back. I can’t even begin to describe how uncomfortable I was and how I couldn’t move properly; I was naked and covered only by a bedsheet, I wanted to get up and find a mirror, to see how I looked, but I didn’t have the strength. I didn’t feel pain. Then I looked around the room and saw a bunch of doctors and staff. There were all kind of tubes, wires and bags attached to me, and I was beside myself. My mum showed me a few photos and messages sent to me by the people I love. I was staring at my phone like a caveman discovering fire for the first time. I slowly started to remember who’s who. I couldn’t believe that I have a different pair of lungs inside me. The doctors told me that when they opened me up, I had 5 litres of water inside me and my heart was thin and flattened. Not too long after waking up did I start to hallucinate. I can vividly recall every hallucination. One was about my dad putting up a billboard and I was trying to find it online. I thought that they were making a reality show about me and that the whole world was looking at me through a vent, I was smiling and showing off my “heart” to the vent because I thought that that was where the cameras were located. One time I thought I heard my sister and boyfriend on the radio singing a song, so I sang along with them. I couldn’t sleep for a while if someone wasn’t holding my hand so I asked the doctors and nurses to hold it when my mum wasn’t around. I would blow kisses to anyone who entered my room, which my mum found funny at first, but would find it uncomfortable the more I did it. I would also compliment the nurse’s shoes and asked her if we could trade. One of my worst hallucinations was when I was falling off a building multiple times, and even as ”crazy” as I am, I was wondering how that was even possible, and how come I never hit the ground or break any bones. I thought that there was no wall behind me and that my bed would fall out of the building so I asked my parents if they had gone insane putting me in a room with no wall. I couldn’t talk because of the machine, so I would just opened my mouth and spoke in vain, I was not clear to them. I continued to sulk and squeeze my parent’s hands tightly (my dad also came to visit around this time) so I don’t “fall”. I also thought that my dad died because I thought they talked about in on the evening news and that my mum was lying to me that he was still alive, so I started to cry. I was messaging people telling them I have four hearts and two pairs of lungs and that I will live for 300 years. I waved to the printer because I thought my boyfriend was standing there and that he’s sending me letters. I hallucinated that I was floating above the x-ray because the magnet got stuck to my chest. The best out of all my hallucinations was the one where I thought my late great-great grandmother came down from heaven to stroke my hand and I noticed how cold her hands were but I thought “her body is cold because she came back from the dead”. I was just looking at her, smiling and nodding my head while she was whispering something in my ear. I was happy to see her, even though I had never met her (that was what was going through my head), but instead of her it was actually the neuropsychologist, she came to check up on me. I believed that I had ended up in digital Heaven and that God had internet access and that’s how he knew everything there is to know about us, but instead they just did a CT scan on me. There were many other things I hallucinated, which even I can’t begin to describe, but I remember them because I was conscious the whole time, just disoriented and confused. There were some things that I found baffling, even in the state that I was in, but I was too tired to react to them so I looked the other way. The hallucinations may be a result of the ECMO machine pumping and oxygenating the blood outside my body, as well as the numerous other medicine I had consumed and insufficient oxygen in the brain. I needed to learn how to breathe again, and that wasn’t as easy as it looked. I learned how to sit, walk, swallow and climb the stairs. Everything was starting to settle down. They were ready to send me to the recovery ward. They tried to get me off the breathing apparatus and that same day I was supposed to have my first visit. Everything seemed to be fine. They helped me shower and washed my hair. I couldn’t wait for them to arrive, but unfortunately, as I was leaving the bathroom and walking to my bed, breathing without the aid of an apparatus, I slowly started to lose my breath and began to panic. A number of medical staff burst into the room trying to pump air into me, but it was no use because I had already lost consciousness at that point. So they put the ventilator back on me. I wasn’t even awake when they arrived, because the whole thing happened while they were on their way to me. During the night, my muscles started to convulse. When I awoke, I was completely paralysed and couldn’t move a muscle. Even to this day we don’t know what caused it, but the fight begins anew, however this time it was much worse. I discovered that I could cluck and thus call the medical staff. It wasn’t very convenient, but I couldn’t manage it any other way. I could have whispered, but as quietly as possible. My mum quit her job so she could be with me at the hospital in Budapest. My sister (24) and my brother (16) were left home alone because my parents are divorced, but they’re still on good terms and there was never a moment where I didn’t feel the love they had for us. Even though my boyfriend had his own problems to deal with, and although we had only been together for a short while, he helped as much as he could, along with the rest of my family. They all had their own worries, as well as common one, which was me. My family and my boyfriend visited me on the weekends. I will write more about my family and my boyfriend during that time of my life in a future book, but suffice it to say it was one of the worst periods of our life, and hopefully the last. The physiotherapists helped me move about so my muscles wouldn’t atrophy and I wouldn’t get bedsores on my back, whileI couldn’t feel any of my fingers at all and it took me a long while before I was able to move them. I was so skinny that my bones would scratch the skin on my back whenever I would try to move and lift myself off the bed, from which I would often fall of due to a lack of movement. And because of my height, the heels of my feet would press against the footboard which caused sacral pressure ulcers to appear on my body while I was in a coma. I couldn’t talk for almost four months, which was how long I was in the hospital, because of the ventilator in my windpipe. They washed me while I was lying on the bed and were trying to “revive” my paralysed body. Mum was demanding an explanation for the paralysis, and their assumption was that my body didn’t respond well to the medicine. Mum tried, with all her energy, to help my muscles relax; she fed me, gave me massages, helped me bathe, and kept a close eye on me. I will always be grateful to her for that. She tried to help everyone at the intensive care unit (ICU), not just me. They saw on the CCTV located in my room that she hasn’t eaten the whole day, even though I kept offering; she didn’t want to take it because they wanted me to gain weight, that was one of our main goals – to make me stronger. That’s why I would sometimes lie and say I’ve had enough, just so she could eat. One day she awoke and saw that they had prepared breakfast for the both of us and ever since then she would always get meals alongside me. While there, she wore scrubs, which she borrowed from a woman with a similar build as her. What followed were endless hours of massaging and stretching out my muscles. Every inch of my body was hurting. Mum is pulling, stretching out my arm as hard as she can, while tears are falling down my cheeks. I said to her: “Mum, you’re hurting me”, and then she told me: “We have to do this now darling so that later everything will be okay”. I believed that I needed to bear the pain now in order to succeed. There really is so much left to discover about the brain, a real wonder I daresay. Even though I couldn’t feel any part of my body, I tried focusing on which part I wanted to move and imagined that I could feel it. When I couldn’t fall asleep or when I would wake up while the others are still sleeping, I would try with all of my might to move parts of my body. Finally, one night my prayer was answered and I managed to move my arm. I felt ecstatic and powerful and I couldn’t wait for the morning to show everyone what I can do. I cried tears of joy because I was convinced that determination and belief would pay off. It was as if I was born anew. I was learning how to stand (or rather, suffering), to walk, hold a spoon or any type of object, eat, clap, wave, write, comb my hair, anything that would require movement. Just trying to move my little finger would cause me to sweat and throw up because of the amount of concentration needed. But we treated everything as if it was a game. At least now I know what’s it like for babies when they take their first steps. I did bicycle crunches in my bed and walked longer and longer distances with each passing day. We decorated the room’s walls with photos featuring my family, the events we participated in and other happy moments from my life. Dad would always bring some delicious food from back home, or in general, something that would make me happy. My dad and boyfriend would trade places with my mum on the weekends and massage my arms and feet.My sister took care of my nails and plucked my eyebrows and my brother made a bracelet for me one time and told me that it would make me even stronger. Everybody was trying their hardest to make me smile. Even my friends made a surprise visit to the hospital. The worst feeling was having to say goodbye to my loved ones, because I wanted to leave with them, but couldn’t. I prayed for a speedy recovery, and we tried to make it happen as fast as possible. I underwent a three-month bronchoscopy where no A0B0 was found. However,from bronchi 10 to 2 they found MRSA and Enterococcus. They found all of that out by having me use an inhaler and rub cream into my nose. I was successfully taken off the respirator and can breathe on my own. No, you didn’t lose your voice after the respirator was removed (that’s what I thought too), it just takes time for the hole to heal and your voice will be stronger. I was finally allowed to go home just a few days before Christmas. On the way home, my boyfriend stopped by McDonald’s and ordered some food for me. We were so happy that I was finally going home that we forgot that, because of my distorted motor skills, I wasn’t able to eat by myself yet, so he cleaned his hands and fed me. I was happy, but at the same time very confused and quiet on the way home. I laid down on my bed and started to cry and give out thanks. I wished that I would be the one to put the star on the Christmas tree once I get back home, and my wish came true. I’m breathing, walking, laughing, but deep in my soul I know that something’s wrong. I refused to believe it because all of this was new for me. I tried to exercise, even though I still wasn’t in control of all my movements. After three weeks I had to go back to the hospital for another two-day stay because they suspected I caught a cold or was suffering from bronchitis. The doctors prescribed me Tamiflu and Avelox after which I felt better, but I continued my treatment at home for a few more days. They found MDR Pseudomonas in my spit, the CRP was normal, it didn’t increase and I inhaled Colomycin. It’s important to do breathing exercises after a transplantation and to take good care of yourselves during the first year. Masks are a necessity, whether you’re out in public and even when you’re home alone. You should ask your doctor where and how long you have to wear a mask. I wore it for a year and then gradually started taking it off and getting used to not needing it anymore. Of course, I still wear it in hospitals, in places where the air is polluted and whenever there’s a large crowd or in a closed space, like a bus or a plane, for example. Gloves should be worn if you’re touching something that many other people have touched, like a doorknob. At first, I felt really embarrassed having to wear a mask and gloves when it was 30°Coutside and that was an unusual sight to see outside of the hospital.People looked at me strangely, but I got used to it and tried to ignore their stares because I knew it was for my own good and that my loved ones understood why I was doing this. Corona came soon after, which helped me overcame that awkwardness. For six weeks you should avoid lifting heavy objects, riding a bicycle, running and straining your body in any kind of way. Working with soil (in the garden) is not recommended, nor is swimming in the pool due to the fungi and bacteria. Always wash your hands and use hand sanitizer before taking your medicine because we are more prone to getting infected. Travelling is recommended only after a full year has passed since your recovery. Don’t stay out in the sun for too long, especially when it’s too hot outside, and make sure to wear sunscreen. Hygiene should of the upmost priority because we are sensitive to everything but we have to take medicine whose purpose is to lower our immunity. You shouldn’t eat grapefruit at all. Avoid raw or uncooked meat, and the same goes for eggs and seafood like sushi, for example. Always use cold water to wash fresh fruit and vegetables or add a bit a vinegar to the water and leave it there for a few minutes; you can try this with grapes that are in general harder to wash. Avoid too much sugar and spices in your food. I didn’t need to wear glasses before my diagnosis, but it became unavoidable since I started to take my medicine and my current prescription is -3.50. Some of the side effects of the medicine included: my hair falling out to the point I had to get it cut, moon face, comedones, acne, nausea, my eyes being sensitive to sunlight, feeling like I was going to throw up, anxiety and stress. All the while, I haven’t left the hospital room for more than three months because it was freezing outside or they would put me in a wheelchair and allow me to go outside for about 10 minutes, while being covered up and wearing a mask. While I was taking the medicine Sandimmun, one of the side effects was an increased hairiness, it got to the point that my brother sat beside me one day and joked how I should give him the medicine because he also wants to grow a beard. My doctor tried to get me to switch back to Prograf that doesn’t have that side effect, but we were afraid that it might cause damage to my muscles.We suspected that it was Prograf that caused the paralysis in the first place and that’s why it was replaced. Fortunately, nothing like that happened again. I was taking magnesium, vitamin C and D, glutamine and Milgamma for my muscles. I drank Nutridrink in the hospital and at home so I could gain my weight back and consume the necessary nutrients. Mum continued to feed me and help me shower because I still couldn’t move my muscles properly. As time was passing by, I started to eat and shower by myself again. One time, while I was getting out of the tub, I lost my balance and fell. My mum and sister rushed into the bathroom to help me up and I started crying, not because I hit myself but because I felt helpless, but I kept quiet to not cause them anymore stress. I tried to ride the exercise bike and to exercise at home, but I soon started to realise that I felt out of breath the second I stood up and took a few steps. I was also dry heaving more and more and shaking uncontrollably after every coughing fit. The intuition that it should not be like this was too big. I told my mum that something’s not right and that we needed to get to the hospital quick, otherwise I might suffocate. We spent two weeks in the hospital, where it was confirmed that my condition was getting worse and that’s why I had to get steroid therapy, antibiotics, antivirals, and had to inhale antifungals. Then the doctors did a transbronchial biopsy on my lungs which showed no signs of rejection. I came back home, celebrated my birthday and three days later went back to the hospital for another two-week stay. The CT confirmed that my condition has gotten worse but the antibodies have shrunk. They once again found Pseudomonas in the bronchi and increased my steroid dose. The spirometry was showing some obstructive components and that’s why they needed to combine various treatments into one. I often had to inhale antibiotics such as Fungizone, Gentamicin and Colomycin. I had another checkup a week and a half later, which showed that all my antibodies had disappeared, the chest x-ray was normal, and the lung capacity stable. They introduced Cellcept into my treatment, but my body didn’t react well to it and it made me want to throw up. I was starting to lose my appetite or I would “feel sick” after breakfast, and I had to take some strong medicine that made my stomach ache because it was almost empty. Even though everyone tried helping me gain some weight, I kept getting skinnier and during moments of relaxation, I started to suffocate due to a lack of air. They replaced Cellcept with Myfortic and I stopped getting nauseous. Prograf is to be taken on an empty stomach, an hour or two before or after you have eaten. We went to the hospital, not knowing that we would not be returning home because my results were really bad. The doctor wasn’t allowed to let me go back home anymore. I tried doing the spirometry test, even though I didn’t have enough air for it. The next few weeks were filled with infusions, inhalations, breathing exercises, checkups, the fight for just a little bit of air. I’m waiting for a miracle with a lung capacity that was getting worse every day. There was no more time. Mum started helping me shower again, with a bottle of oxygen and a fan that was blowing air directly into my face. I had a coughing fit one time while I was inhaling and started to lose air once again. Mum called the doctors and medical staff into my room, but it was a Sunday so only the doctors that were on duty were in the hospital and there was only one in my unit. A crowd began to form, everyone wanted to help me. Suddenly, there was silence all around me, all the chaos began to slow down, and I calmed down completely. Mum was holding my head and saying something to me, and I whispered to her that I couldn’t hear a thing. I realised I was “fading away” and that if I closed my eyes now, I may never open them again. I looked at my mother and thought of the disease and said in myself “you are not stronger”. It took all of my energy to point at the windows next to my bed as a sign to open them. They did and I just rushed towards the window and breathed in the air as if someone was holding me underwater and I finally managed to break through to the surface. I felt worse than ever before. It was as if only my brain was working properly. They directed me to the ICU and put an oxygen mask on me. I felt like it was making me suffocate even more and that I didn’t have anywhere else to breathe from, I was angry and panicking.My body was starting to produce antibodies and reject the organ. Only God knew how much I wanted this life, my one and only. That I will survive. The commission came to visit me that day and decide whether to put me on the waiting list for retransplantation. They asked me a few questions, but it was hard to talk with the mask on, so I could only nod my head and blink, but I couldn’t take it off. It was as if I could see the pity in their eyes. The doctor came up to me and told me to squeeze his hand as hard as I can, checked my muscles and nodded his head. The commission exchanged looks with one another and left, along with my mum. She knew every thought of mine and what I was willing to do. I know now what I didn’t know back then. She later on told me that they rejected me and that we had to accept it, because I was in such a horrid condition and I wouldn’t survive the surgery. Mum couldn’t accept that and stood up to them. She told them that she accepts their opinions, but that we are ready for anything and that her child will make it through the surgery. When they left, she sat by herself in the hallway and cried her eyes out. After a while, she wiped them away, put on a brave face and came to see me. When mum came back without saying a word, I asked her what they said, to which she replied, in a quiet voice: “They don’t want to put you on the list”. Just when I think it can’t get any worse, life stabs me in the back and shows that it can always get worse. Keep breathing, I said. It can be better. I was looking at her in shock. “What?”, I asked. She just looked at me and said: “I don’t know”. My mind couldn’t even comprehend that possibility because I always believed in miracles. I stayed calm throughout the discussion and began to summarize everything I heard. Nevertheless, a council of anaesthesiologists held a meeting and, from what they could assess from my breathing and somatic condition, they suggested that, in order to improve my condition and breathing, I go back to oncology. Not long after, my mum got a phone call from a doctor telling her they will transfer me to the Institute of Oncology if we are in agreement, but that they suspect it will be a difficult process. They will work on hardening my muscles because my physical strength is still good, but I have to maintain it so that I could survive the transplantation in the likelihood that they put me on the list, even though no one knew if there was going to be another transplantation. Mum immediately said yes, and in my mind I was already on the way there because I had nothing to lose. That only encouraged me to keep believing and thinking about everything I will do once I get better. The ambulance came to pick us up the next morning, and we sprang into “action”. When I arrived at the oncology unit, everybody from the department came to greet me and show me to my “beloved” old room. It was easier to breathe with the nasal cannula, but when I arrived my oxygen was already at a 5. That is, half of the maximum.The next several weeks were spent doing exhausting exercises. I waited and hoped they would put me on the list. I liked to defy the disease and tell her in myself: “what’s next”, “not today”, “you can’t do anything to me”. It seemed to me that I was getting stronger mentally, but that the disease was getting “angry” and getting stronger. However, at that moment, it had already taken enough away from me physically, and the only thing I could strengthen was my psyche. I told my parents that I feel as if I would hit rock bottom, but I won’t leave them. They, of course, didn’t like what I said. But even as ill as I was, I didn’t lose my dark humour and I was entertaining myself. Then one morning the doctor came into my room and told me I was finally put on the list. Thank God. That gave me the motivation to keep moving forward, because now it was only a matter of how long I can endure. The oxygen was almost at maximum power. It was so strong that I would get nosebleeds sometimes. I could only stand in the shower by myself, while my mum was bathing me. It would take me a bit of time to get to the showers, however later on they would use a wheelchair whenever I had to shower or use the toilet. In the end, they would wash me while I was lying down in bed and then put the catheter back in its place. I still wasn’t able to go home. I had a nutritionist who would ask me every day what I wanted to eat. Anything. I didn’t have enough air so even when I had an appetite, I still couldn’t eat because every bite demanded a lot more oxygen than I had, just like you needed it for laughing, talking, standing and sitting. Everything felt suffocating, even texting. I realised that everyone in the oncology unit is losing hope in me, so I told my mum to tell the doctors to hurry up (even though I knew it was impossible) because I’m barely holding on. I drew strength from the pain, my dreams and faith. I messaged my family telling them to keep me in their prayers and I’m certain they did more than that. Every one of us prayed. I asked my boyfriend to take the cross necklace that my mum dipped in holy water and put it around my neck. The priest from that church used to visit me and gave me various pictures of saints. They were drawing my blood multiple times a day, and my veins and arms were so blue and weak that they didn’t have anywhere else to draw blood from. Almost every night I dreamt I was praying in the church, and one of my favourite dreams was when I was running without needing to stop to catch my breath. Three and a half weeks passed since I came to the hospital. There were a number of times where my lungs were almost left without oxygen, but one morning, around 4 AM, I started throwing up like never before. Fortunately, my brother was leaving for England and my mum was accompanying him to the airport in Budapest. I messaged her saying I wasn’t feeling well and to come to the hospital quickly, even though nobody was allowed entrance at that time. I put my phone down and closed my eyes. I don’t remember anything after that point because I lost conscience due to the lack of air. I don’t know how long I was unconscious because they didn’t wake me again. They intubated me. Mum came to the hospital as fast as she could, but, of course, she wasn’t allowed in. This is what she told me happened after I lost consciousness. She managed to reach the unit (even she doesn’t know how she got past the reception desk) and started to pound on the door and made a lot of noise. They still wouldn’t let her in, but she woke them up. She told them to do a checkup on me because I wasn’t feeling well and showed them my message. She burst through the hallway doors and ran straight to me, who was unconscious, sweaty, but still breathing. She wanted to make sure I was still alive. She waited in the hallway until morning when they told her to come back around 12 PM and that she is forbidden from entering until then. She arrived at my department at 12 PM. They let her in to scold her for her behaviour. They told her I was put to sleep because this is the only way they can keep me alive until a donor is found. She came to see me. I was lying on my bed, bathed, covered only with a bedsheet, my hair braided (my mum usually styled my hair like this). She had to take all my stuff out of my room and return them home because I wouldn’t be needing them anymore. She asked the doctor on duty if he knows how long this is going to last. He said it won’t take long because my condition was very bad. Nevertheless, she gave him her phone number and told them to call her because she knew they would find a donor. She took my things and left. That night she got a call at 3 AM and all she could think about was: “We found a donor, if you leave right now you can still see Amadea before the transplantation”. How powerful a mother’s wings are, only they could achieve such a feat. They gave us some time to talk things out before my second transplantation. She intertwined her fingers with mine and prayed for me, kissed me on the cheek, caressed my hair and told me that she would be waiting for me right here. She messaged everyone back home to pray for me, now more than ever. I was the first person to undergo lung retransplantation in Hungary. I couldn’t even imagine what kind of stress they were under and how worried they were. She accompanied me to the lift and then I disappeared out of her sight. Seven hours of waiting, just waiting. There would be people going in and out of the operating room, everything is looking good so far. The doctors came back after seven hours, all tired, and told her that everything went smoothly. Thank God! We know that someone stronger and far more powerful than us willed this into existence. My grandma asked the priests to make a thank you plaque for me and put it in the church. This is what happens when you have enough will and fait.