My life with transplanted kidney…

… is hard. I am very happy that I have her (in Czech a kidney is female and I just can’t write IT) and trust me, I do love her. Without her I would be dead now. Dead for 11 long years already. And I wouldn’t have the most amazing daughter in the world. Nothing. Just nothing. But the gift of life was not for free.

People with transplanted organs have to fight for a “normal life”. They have to put way more effort in it than healthy people. Each pill we have to take to keep the transplanted organ safe in the body has long list of side effects. From those that are just tiny little details like my hair and nails being weak, being more tired than others and needing longer time for regeneration after exercise to more serious ones like causing depressions or diabetes, to those that actually threaten me as they increase significantly risk of all possible illnesses like cancer, heart attack, stroke and many many others.

But still it’s worth it. At least for me. Every minute in my life I can spend with my daughter is the most awesome gift I was ever given and I am endlessly grateful for it. And it wouldn’t be possible without the transplanted kidney. So I am very, very much grateful for this as well.

 

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Despair

This feeling has been my friend for some time now. Approximately from the beginning of this month. Why? I have no idea. It was supposed to be exactly the opposite as last month was pretty good and I even made my record in the amount of ran kilometers and I was looking forward to going to my parents for vacation that started on 1st of July. We planned with my dad that we would go running and cycling and do lots of things.

The vacation was pretty good, my parents have cottage at Lipno, which is the biggest water reservoir in Czech republic and it is surrounded by very beautiful nature.  It was a bit cold, cloudy and sometimes even rainy during the first few days but then it was great weather so we were going for walks, mushrooming, swimming to the lake or just relaxing at the garden. But even though everything was fine, I felt somehow nervous. I can’t tell why.

I am always very tired at the beginning when I come there probably because of the air change. I call it oxygen poisoning. And so I was sleeping and just doing nothing a lot. I even didn’t have mood to go running. And I was eating all that awesome tasty but unhealthy food my mom was cooking. Which resulted in gaining some weight. Not much, like two kilos maybe but I was definitely not happy about it. But still wasn’t able to do anything. Some kind of laziness jumped on me.

When I came back, after 3 hours of terrible travel by train in 36 degrees, I started to feel depressed. I came to my flat and started to cry. Heavily. It was very weird as I didn’t understand what was going on. I suddenly started to terribly miss my daughter and I also missed my parents and I just wanted to turn around and go back to the cottage.

And since then I feel like crap. I feel said, despair, unhappy, don’t have mood or strength to do anything. It gets a bit better when I am at work as I have lots of things to do and also there are many people and sometimes they smile and tell jokes and do funny things so it makes me feel way better, but as soon as I leave the office I start to feel bad again. I feel very lonely, weak and tired. I just come home, switch on TV and watch whatever is there till about midnight and then go to bed. I haven’t been running for more than two weeks now, haven’t exercise, actually I haven’t been doing anything else then just working and watching TV the last week.

I wanted to go to Lukas’ training on Thursday and was really looking forward to it as I was hoping it would start my better mood again. But unfortunately just few hours before the training I started to feel dizzy, even felt like having higher temperature and started to have head ache and almost lost my voice. So I probably got cold from the air conditioning and also found out that I got my period. I just felt very bad so instead of going to the training, I decided to go home earlier. When I came home I just took some painkillers and went to bed. What an bad coincidence.

It also didn’t help to hear about the events in Nice or in Turkey…what the hell is going on with this world? It was never safe but it is getting worse and worse.

Anyway…this post is almost about nothing and I just feel terrible…don’t know why I am even writing this.

 

Looking for a man. The man.

When I was a teenager I was always dreaming about everlasting love that actually happens on the first sight. When you meet handsome guy, he gives you bunch of roses, kisses you and you know it’s gonna last forever. Yes, I have always been that super romantic type influenced by magazines for teenagers where these situations happen regularly.

I met my husband via internet (ICQ to be precise) and I didn’t like him much until we started to talk via long and intimate emails. I also didn’t like much how he looked like when I saw him for the first time (tall, skinny guy with very short hair and rock clothes – I was Barbie wanna be person at that time).

And yet things turned out the way that we stayed together for 15 years (and most of the time I was convinced we would stay together forever). We went through heaven and hell together and end up divorced but friends. Maybe weird for someone but true. Anyway, this post was not meant to be about my relationship with my ex-husband, yet it has lots to do with the real subject.

When I was in the hospital (again), I had lots of time to think, which can be helpful but also dangerous. Among other thoughts, I was thinking about Lukas (the trainer) and our first meeting. We actually met because of his dating agency, he just wanted to get to know me. Simple. I remember that one of his questions was why I wanted all men that would potentially meet me to know that I had transplanted kidney. It kind of surprised me and I didn’t know how to react.

For me this question was sign of that he had no idea what it meant to have a transplanted kidney but I didn’t know how to explain without actually scaring him. I don’t remember exactly what I answered to him but I still remember that question and from time to time it pops up in my head.

Like it did in the hospital. I realized that probably healthy people are not fully able to understand the ill or in some way disabled ones. I know that in my case being ill is not the correct expression because unless I have some complications like inflammation or pneumonia, I live pretty normal life – I go to work, take care of my daughter, exercise, run, cook, clean…name it. But the difference comes WHEN there is a complication and the real issue is actually in the “what if” and “when it comes to”.

At the moment I am  living pretty normal life. But what if my kidney fails and what my life will be when it comes to going on dialysis again?

Back to my ex-husband. When we met, I was more or less healthy person. During the time my condition was slowly getting worse. Then it became really bad and the first transplantation came. And then the fail. And the dialysis with all the terrible cramps, headaches, depressions. And then the second transplantation. And happiness. But all this was continuous process that we went through together. Sure, we got divorced in the end, but it had nothing to do with my health condition.

And now I am trying to find someone new, who would not only fell in love with me but also accepted my past, current and also future health condition. The problem is where to start? When I meet someone, when and how actually tell him about this situation? When I was with my ex-husband we went through everything continuously. It was just happening on the way but now I am trying it the opposite way. To bring someone to the situation that is actually already happening.

And as I was thinking about it at the hospital, I was thinking about that maybe the best way how to find someone like that might be looking for people who have either similar problems like me or have experienced something similar with their family members or friends or just with someone close. On one side it might be good that they would count with what might happen, on the other side they might be scared to experience something like this again. Who knows. Anyway, the problem is still the same – Where to start?

I tried to look up some community or group of people with similar problem but didn’t find anything so far. So I started to think about creating one which would allow meeting people with variety of disabilities or illnesses who want to live normal life but need help when some type of complication comes. And maybe they also want to find understanding partner who is willing to bear their fate with them and just accept they are not perfect. It is simple to accept that someone is not perfect if you are not perfect as well.

I have no idea if I will be able to create such community and if I am, if it helps me with my problem but I am sure that trying this is way better than not doing anything at all.