Second transplant

Amadea Sič

During the operation, I received Octaplas and transfusion of irradiated blood. Unlike the first time, I was only in a coma for two days, and the first thing I remember is being confused. I didn’t know how I ended up in the ICU again. I was feeling indifferent because I didn’t know if everything turned out okay this time. During recovery, I received more Octaplas and blood. The head doctor that did the surgery came to see me and told me that everything went well this time and that this was my light at the end of the tunnel. I thanked him, but I still felt strange, or rather unsure. I wanted to sit down, get off the bed, take a walk and make sure everything was truly all right. The doctors told me to sit still because I was still under the effect of sedatives and that I don’t have enough energy, but I wanted to be active. After two days, they allowed me to get of the bed and try sitting. It really wasn’t easy and my head started spinning a bit. I couldn’t sit down without having someone there to hold me, otherwise I would lose my balance. My muscles had atrophied but my desire to leave the hospital was stronger than that. The next day, I asked to sit in armchair and eat there. That day I felt stronger and more prepared. I tried standing up while two other people were holding me. Then I had to make the first step towards the armchair which needed only two steps to reach it. I felt as if my slippers were glued to the floor. I managed to move just enough that I could throw myself onto the couch, but I did succeed in the end and even had my lunch there. I was sweating just by sitting down, but I was able to wait for my mum to come back so I could show her what I can do. Again, so everyone could feel less stressed about my condition even though everyone was even more afraid than the first time. I had my first bronchoscopy after a couple of days and they told me everything was okay. After the sixth day, I managed to walk with a walker and I was amazed that I’m able to take even a few steps without being out of breath. That was the first time I felt at peace because I had lungs that help me breathe like they are my own. I could finally take deep breaths; I could finally breathe. Everyone in the hospital was so kind to me; they made me pancakes, pizza, bought me McDonald’s and Pez because they knew I liked candy. They transferred me to another hospital, called Semmelweis, where I needed to strengthen my lungs. After two weeks of physiotherapy, my breathing improved immensely and they took the ventilator off of me. They lowered the oxygen pressure in my nasal cannula until finally, I didn’t need it anymore. That first night without oxygen, my breaths were so calm and slow that I got scared that I wasn’t breathing. I put it back on and I wore it only at night for reassurance until eventually I was ready to get rid of it forever. I pinched myself often to prove that it wasn’t a dream. The chief of staff came and told us that this child would recover faster at home, and that my mother and I were ready for a life at home after retransplantation, considering we already went through this once before. Always listen to your doctor, but also be motivated and focused on what you want to achieve. At the end of it all, doctors are just humans like you and me and they also don’t have the answer to all our questions. Because of that it’s necessary to communicate and cooperate with them as much as you can. After four weeks I had a bronchoscopy done. I was feeling great, but I started to show signs of acute rejection because of the antibodies, and they found Pseudomonas in the left lung. I had to stay in the hospital to receive steroids through a transfusion, antivirals, and to inhale antifungals. They gave me salt water to inhale a few times, which is a method I still use to this day whenever I get a cold. I started plasmapheresis treatment which I received four times. My blood pressure was high, as well as my pulse, although my heart was beating rapidly which is why they had to prescribe me medicine for the heart. The lung capacity is rising, while the antibodies are slowly disappearing. With the help of various treatments and determination, we finally managed to fight off this disease! After about a year everything will fall into place. After the first year, which is when you are most at risk, you can go out in public without a mask or gloves and you’re less sensitive, but still more than others so be careful. If you’re planning to go to the gym, you can do so after a year, but choose a time when there’s not many people there and be sure to disinfect your equipment. I would exercise every day so I could strengthen my muscles and after three months I managed to gain 14 kg. Since my family has good metabolism and nobody’s overweight, there was a very low chance that I would be as well.

We don’t know what caused the rejection of the first pair of lungs. I consider the unsuccessful first transplant as an extension of my life before my real lungs came in. Faith, courage, strength and determination are what kept me moving forward. My love of life, my family, my boyfriend and my friends are what gave me motivation and strength. I knew that I couldn’t leave them and that I had so many goals I still needed to achieve. I was convinced that a miracle was going to occur, as impossible as it may have seemed, because we did everything in our power to make it happen. It was all thanks to my experience and good lungs, that I managed to complete the exercises and tasks needed to get out of the hospital as quickly as possible. I’m living life to the fullest! Now I can breathe as deeply as I can. I was already in a coma that few people wake up from. I had a sort of motto. I would always keep this one sentence close to my heart and imagine a mountain “the harder the fall, the greater the climb”. Once you rise up from that bottomless pit just like I did, you learn to appreciate life and all the little things it gives you. I see life as full of blessings and happiness. I’m thankful for my life. I’m walking my own path in order to make up for some of my “delayed” dreams and hobbies like training, acting and playing the piano, which I wish to learn.I can run without getting out of breath on the third step. Also, I am going to various festivals and concerts where I sing and dance. I’m trying to achieve everything on my “bucket list”. I graduated from the online ITAcademy because I could finish it as quickly as possible after my retransplantation while following the strict rules of hygiene during my recovery period. I am now a psychology major at a university whose location is in another city. I’m always open to new knowledge and endeavours. I love to travel and learn about different customs and cultures. I like to cook, make creative gifts and write in my spare time. Set aside some “me time” for yourself, a period of time you will use to work on yourself and your needs. I’m happy to say that I haven’t lost my love for adrenaline, I would say that it’s even stronger than it has ever been. Of course, there are days when I just want to lie down, sleep, when I’m feeling listless and unmotivated, but I try not to push myself too hard on those days. However, after a few days I have to find something to do because I get reminded of everything that happened and how far I’ve come. My medications can affect my body, emotions, and mental state, and I am well aware of that, so I need to adjust accordingly. After the second transplant, I became so anxious that Icouldn’t go outside by myself, let alone cross the road. I felt as if I wasn’t myself because I used to have no issue talking to strangers. I would flinch whenever I would hear certain sounds or seecertain types of silhouettes. I was struggling between the past me and the present me. From my personal experience, you should deal with anxiety gradually because if you “take too big a step” a lot of trauma, phobias and similar conditions can arise from that and (in layman’s terms) you may not be emotionally and mentally ready to deal with that. Certainly, the condition should not be ignored because it can worsen. Regardless of how traumatized I was, I didn’t allow myself to give up after everything. I started to act like the old me that was full of confidence, I would compliment myself after every achievement and I wrote down my good qualities.Of course, I didn’t revert back to my past self right away, nor was I expecting it to happen overnight. However, I was determined because, with each passing day, I felt like I was getting closer to my goal. Oftentimes, the thing that we want is hidden behind a wall of fear. Of course, there are people who can’t deal with anxiety, panic attacks, phobias and other problems by themselves, that’s why they seek professional help. We would often forget about the things we went through and may accidentally hurt someone through our words and actions once we get everything we ever wanted. We only remember when we are left with nothing and the past is there to remind us and help us move forward with our lives. I think people are scared to leave their comfort zones because once they do, a lot of emotions that they kept well-hidden start to show themselves. They think that by showing this side of themselves they would be compromising their principles and reputation. But just as easily as you entered and got used to your comfort zone, you should also try venturing out of it. Beside me is the love of my life who understood me, took care of me and held me in his arms whenever needed. Beside me is my dearest family that I can always count on and a few close friends who I cherish and who have supported me through tough times. I am being taken care of by the best doctors in the world and without I wouldn’t be here today. I would especially like to thank my unknown donors because without them none of this would be possible. It’s thanks to all of them that I never felt weak or alone for one second, but loved and powerful.I smiled the most when it hurt the most. They would lift me up with all their might whenever I was down, and I made sure that they never lost faith in me and my strength. I can’t even begin to describe how much bitterness, pain, sadness and suffering there was. All of that is now behind me because the only thing that matters is to have a clear goal to run towards. My heart is filled with bravery, faith and love and there’s nothing more important than that. Focus on what you want, be determined until your last breath because only then you can be certain that you tried everything. The brain is the strongest weapon of all. Time itself does not heal all wounds, but rather it’s our actions and the actions of others while that time is ticking. A kind word, a hug and a nice gesture are always welcome, while more people will start caring about other persons, nature and animals. Once they realise that when we get together and help each other out, we can start to progress as a society because we have all been born with a pure soul. None of us knows what his exact “deadline” is, but what I do know is that I try to create good memories for myself, so that when my “judgment day” comes, I can say to myself that I may not have lived a long and easy life, but a longer, more beautiful and fulfilling life. When you find that little bit of peace within yourself, it will follow you everywhere. It sounds unbelievable but try not to be afraid of death, and instead welcome life with open arms and say yes! Be the hero of your own story and cheer for yourself!

*Each person is an individual for himself. For this reason, please consult an expert before you think of using any information from my blog.

Special thanks to:

National Institute of Oncology in Budapest: Dr. Lang György, dr. Rényi-Vámos Ferenc, dr. Elek Jenő, dr. Madurka Ildikó, dr. Schönhauer Nóra, dr. Bartók Tibor, dr. Tóth Krisztina,dr. Dancs Tamás, dr. Ghimessy Áron, dr. Gieszer Balázs, dr. Radeczky Péter, dr. Szelepcsényi Ádám, Kissné Budai Mariann ,Vass Tamás

Semmelweis Egyetem Pulmonológiai Klinika: Dr. Karlócai Kristóf, dr. Bohács Anikó,

dr. Czuczor Zoltán, dr. Müller Veronika, Csernus Katalin

Tüdőér egylet: Csabuda Eszter, Dora Erdelyi https://www.tudoer.hu/

MediGruop, Institut za plućne bolesti u Sremskoj Kamenici: Dr. Senka Milutinov, dr. Jovan Matijašević, Kuća Zdravlja: Dr.Nenad Đuketić, Poliklinika Sente: Dr. Marko Sente, Opšta bolnica Subotica: Dr. Saša Dželebdžić

I am proud to live such a powerful and unique life which I adore. I’m living my dreams and can’t wait to see what’s next.

ABOUT ME

I publish this site to share my personal experiences in order to help and support anyone who finds themselves in a similar or the same situation, and at the same time to raise awareness about donation. Feel free to contact me if you have any doubts, questions or need someone to listen to you and understands.