I will just go out of my way and say it – we live a life surrounded by first world problems. I know I am the person to talk. If you were to stand in a room full of people and had to point out the most dramatic person there – I would be that person. Okay, that might have been a little too dramatic. You see, though?
We complain about slow internet, phone dying, TV remote not working, when Instagram reduces the quality of your picture (this is a good one), unexpected items in the bagging area at Tesco, public transport not showing up on time, when Tesco doesn’t have those wraps that I like, a wardrobe full of clothes but (obviously) nothing to wear, Just Eat not delivering to the right address or when the Uber driver would not shut his mouth for a second (1 star, for sure).
But what are these problems compared to something like health? It’s kind of like having a runny nose, isn’t it? You only appreciate being able to breathe freely when you have a runny or a blocked nose. You only visit doctors when something is wrong. There is a stigma about visiting doctors only when something is wrong. In fact, you should go in for your yearly checkups. Do we ever do that? No.
Today I’m talking to Urte, a graphic designer from Lithuania, whose life was and still is very much connected to hospitals and doctors. Me and Urte go way back, we went to the same high school together and we knew each other, yet there is so much I did not know. She has lived through so much and is ready to share it all – The One About A Kidney Transplant.
Q: Tell me about your childhood.
U: My childhood was like living a double life. On one hand, I was living in a safe environment with my family and friends, but then the other side of it was doctors, hospitals and constantly changing patient rooms. Up until I was almost 2 years old, I spent more time at hospitals than at home.
I was born in winter of 1996 and at the beginning the doctors did not notice anything unusual. It was the second day that they saw I was born without anus. That’s when they determined I had Vacterl syndrome, which manifested itself to me through kidney abnormality, atrial septal defect, anal malformation and left hand thumb defect. After my birth I underwent 2 surgeries during which various tubes were placed in my body, one from my kidneys and one from my abdomen so that my body could function. At that time families from Germany were providing charity to Lithuanian hospitals to help ill children. One of the families found out about me and my illnesses and offered to help my parents because doctors in Lithuania did not know what to do and there were no suitable conditions to treat me. I underwent 3 surgeries in Germany before I turned 2 and thanks to that I was able to life a fulfilling life until I turned 20.
I still remember that family, I use to call them my grandparents (Dieter and Christa Daginnus), however I don’t think I had the chance to properly thank them for what they did for me and for that I am still angry at myself. It’s only when I turned 25 I started to become more interested in my life story.
Due to my health problems, I did not attend kindergarten. Before I started school, I spent most of my childhood with my grandparents in Nida. My parents had a hard time letting me go outside to play with other kids because they were scared I might hurt myself. Yet I still had one friend with whom we rode bikes and did all sorts of things. I can’t say I had a lot of freedom as a kid (understandably) but I still somehow always managed to keep myself occupied.
When I was around 15 or 16, my bladder started to have difficulty functioning and fluids accumulated which led for the infection to spread to my kidneys. As a result, the doctors had to place a tube in my bladder, which allowed the accumulated urine to escape. I remember I did not want to go through any of this because I was so used to freedom from all the hospitals and doctors and medical things, I thought I was free and then I wasn’t. This all was very difficult for me psychologically, and especially as a teenager, wanting to be as independent as possible. But again, over time, I got used to it and did that until both my kidneys were removed.
Q: At what point in your life did you realize that your health problems are a bit more serious than the next persons’?
U: I started to realize I had health problems when I started going to school. I remember when I was in the first grade, we had dance lessons and I just cried in the locker room because I was so afraid to change in front of other girls, I didn’t want them to see all the scars on my body from undergoing all those surgeries. I also started to hide my left hand more often because my thumb was not properly developed due to the syndrome.
Q: As a child, did the hospitals and constantly being in and out of there have any impact on you?
U: I think they did. Constant visits to the doctor when I was little made me distrust other people, I thought they wanted to hurt me or something. The other thing was, I did not really have anyone to talk to, I am a single child, and I didn’t attend kindergarten. The lack of socialization had an impact on me in school, I had a hard time communicating with other children, I wanted to say a lot but I lacked words and courage. Because of that people would look at me funny and they would gossip as well. Not only my physical illness but also established dyslexia contributed to my self-esteem. I was the quietest in class and I got used to it. I can’t say I had no friends at school though. I did. They accepted me and gave me a little bit of childhood joy. Although we don’t talk anymore, I am grateful for them.
Q: Let’s fast forward to the moment you found out your kidney is losing its function. What’s going through your heard?
U: I remember that day very vividly. The doctors have just told me that I will need chemo dialysis. I have just turned twenty and my first reaction was to simply smile. I smiled because I couldn’t believe it. After that I cried. I cried a lot because I was scared and did not know what was going to happen to me.
It all started in 2017, the doctors kind of had to prepare my arm for dialysis procedures. The first arm surgery that they did was unsuccessful, and it affected me psychologically. My left arm was always thinner and weaker, and the doctors were obviously very sorry that the surgery failed. A few months later I had a successful operation on my right arm. I really did not want to give my stronger arm for surgery, but there was no other option, dialysis had to be started as soon as possible. Because of the surgery on my right arm, it swelled up and I had some lumps forming there. I felt like I was back in school, feeling the need to hide my arm, however after some time passed, I got used to it. I realized I just need to adapt to it and life will be easier.
This might sound ridiculous, but these arm surgeries were some of the scariest to me because they were performed with local anesthesia, when doctors inject the medication so you don’t feel anything but are fully awake. So I laid there listening to the radio, I heard doctors talking about the coming summer and the holidays. I tried to lie still but I was so curious to see what my hand looks like cut wide open. Of course, no one allowed me to look at it but I managed to get a glimpse through the mirror and that image made me almost faint.
After the surgery (which was successful this time), my arm started healing and I started doing long and tedious dialysis. Every 3 days, for the duration of 5 hours I spent lying connected to a machine that performed my kidney functions and cleansed my body of toxins. It was psychologically very hard, I had to get used to restricted life and constant fatigue.
I kind of had to force myself to look at dialysis as a natural every day thing, which everyone knows – it isn’t.
I used to go to lectures after dialysis because they gave me some freedom of life and allowed me to forget about my illness a bit. I had to combine dialysis with studies, so I used to do two working days and one weekend. When I had dialysis on the weekend, my friend used to go with me, he was always in a good mood and made sure I had snacks and all. Although he didn’t like blood very much, he still came with me and sat next to my bed distracting me from what was happening.
Q: I know in England, there is a very long waiting list for kidney transplants, some people wait years to get a donor, tell me what was your story like?
U: Yes, some people wait for the right kidney for 5 years or even longer. While they wait for it, they have to do dialysis as they have no other choice. I was incredibly lucky; I got my dad’s kidney. He gave me a chance to live a normal life.
Me and my family had two options. We could wait for a donor from a dead person, not knowing how long it’s going to take, or we could start research to see if any of my family member is a suitable living donor. It turned out that both my dad and my grandmother were fully fit to donate a kidney. Surely both my dad and grandma immediately agreed, but because of my grandmothers age, my father was chosen. I remember I felt calm because I knew that it was my dad that was the donor, but at the same time I was concerned and afraid for my dad’s health. However, everything went well.
A person can fully live with one kidney and now that is how my dad and I live. It’s still a bit strange because I know I have my dad’s kidney in my body.
Q: What was the transplant procedure like? What is the preparation and recovery like?
U: In order for the transplant procedure to happen they firstly had to remove both of my kidneys and implant the ones from the donor. Before it even happened, the doctors were thinking whether to do it all in one go or to separate it into 3 procedures. One treatment facility suggested to do it in one go and the other one said it‘s best to separate it to reduce the risk of an infection. After several weeks of deliberation, we decided to do 3 separate surgeries. And that was an emotional rollercoaster for me. I was afraid, because I didn’t know what’s going to happen and whether it will all work out. I went to a psychologist and thanks to him I felt more confident not only in myself and my body but also in the doctors.
Summer came and then the surgery marathon began. Every 2 to 3 months – a surgery. 2 surgeries to remove both of my kidneys and 1 transplant operation. After my first surgery where they removed one of my kidneys, I didn’t feel any different. Only after they removed them both I understood what it means to live without a vital organ. It was hard to breathe, to go up the stairs, even walking was hard. I would walk a few meters and I couldn’t breathe, it felt like I was suffocating. Fluids accumulated in my body that were only removed during dialysis, which means I did not urinate normally for about 1 to 2 months. Before the operation I weighted only 42 kilograms.
Going up the stairs to the third floor felt like climbing a tall, cold mountain, each step was taking the air away from me.
The day before the transplant surgery I was calm but my body showed that I was scared. When I got up early in the morning I felt nauseous, I thought I got some kind of poisoning or something and that worried me. The whole surgery is postponed if you get a cold or an infection. My parents drove me to the hospital and we had to make quite a few stops because I felt sick. When I got to the hospital I couldn’t walk, I had to use the wheelchair, all this while I was still feeling very much sick. The doctors quickly prescribed the necessary tests for me and found nothing wrong. I vomited so much that I got a stomach ache and there was nothing left to vomit. The doctors just laid me on the bed, gave me sedatives, took me to my last dialysis, where I finally calmed down and fell asleep.
The next morning they gave me sedatives again and they were really effective. I was so high, I was laughing while the nurses were taking me to the operating room. The doctors were all ready for the surgery, they laid me on a cold operating table, gave me anesthesia and for a moment there I felt a really sharp pain and then I just passed out. I remember I dreamt a lot of nonsense.
I woke up with a nurse telling me ‘’Wake up, it’s all over’’. I had to be awake until I was taken to a ward where people lay just after surgery trying to sober up after the anesthesia. Next thing I know they’re taking me somewhere else where I had to wait to hear if the surgery was successful. After an hour or so 5 doctors came in and told me that everything went very smoothly.
Usually, people still need dialysis after a transplant surgery just for the kidney to ‘’catch up’’, however I didn’t need any of that as my dad’s kidney stuck right away. When I heard that everything went fine, I just started crying, I cried for a long time out of happiness because I finally heard the doctors say that I’m healthy.
I spent another 2 to 3 weeks in the hospital and after that, I was free.
Q: What is life like after a kidney transplant?
U: In my case, my lifestyle hasn’t changed significantly, only improved! I had to get used to taking medication, every 3 months I have to pay a visit to the doctors and run some tests to make sure that the kidney function is stable. Besides that, due to immunosuppressive drugs, I have to pay a lot of attention to food, especially meat. It has to be properly prepared because otherwise I could catch various diseases and it would be harder for me to heal from that.
However, at this moment my health is perfect, I can’t complain. Sometimes I even forget that I had these surgeries.
I see my kidney as a ‘’battery of life’’ that will one day run out and I will have to go back to dialysis. That is why I’m enjoying life right now, trying to pursue my dreams faster, not think about the future and live in the moment. I want to see the world and have some memorable experiences.
Q: In your opinion, do you think that people (especially young people) take their health for granted?
U: I think every young person views their health very differently. Most of the time, they don’t pay too much attention to it until something happens. And that’s completely normal. Some of them, even though they notice symptoms, are too afraid to go to medical institutions because they just assume the worst. However, from my own experience, I would just like to encourage people to make that doctors appointment, so you don’t have to regret it in the future when it’s too late. All illnesses can be detected quite early, all that is needed is time, which young people often have plenty, just not for this specific purpose.
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