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.

 

2016 Overview

Well, I think 2016 wasn’t the best year I ever had but to be honest, wasn’t the worst as well, so I think I can say it was average.

It started with recovery from bladder inflammation and a break up (after just one or two months of dating but still it was painful for me). Well, one of the worst beginnings of new year. Full of depressions, sadness and tears. When I recovered fully and started to work and exercise again, another bladder inflammation surprised me in February. This time way stronger so I had to stay in a hospital. When I recovered again, thrombosis in my right leg stroke me in April and forced me to stay in a hospital again.

At that time I started to be really down – not being able to exercise for a long time caused some weight gain (well, nothing serious, around 2-3 kilos, but I hated it) and loss of condition. I started to prefer being alone in my flat and pity myself. I know it wasn’t the best idea ever but I just couldn’t help it. I just needed it.

Fortunately after few rivers of tears, roller coaster mood swings, hours of self pity and tons of used tissues, my brain decided to change the tactics and to try to run again. Running has always been my life saver so as soon as I started to run again, everything was suddenly better, even though I had to start almost from the beginning again.

I also started to do weigh exercises so my body became stronger and everything was covered with sun light. I finished few runs by myself, few with my dad, including 2run (me 10km + he 11km = half marathon together) in Ceske Budejovice and the most beautiful run in my life – Behej Lesy Karlstejn (12km).

Unfortunately another bladder inflammation brought me down in October but this time I didn’t take it that tragically. Just another visit in a hospital.

Work-wise this year was very good. Nothing really changed from last year but I do love my job and I hope I will be able to do it million more years 😉 The great thing is that I can work even in a hospital so unlike my running, my hospital visits didn’t ruin my work schedule.

Relationships…oh well, one ended right at the beginning of this year an none other appeared so this year was not really love/relationships friendly but I cannot force it. Hopefully it will come once (soon) but if it doesn’t, it will not ruin me anymore as I am pretty happy living my life as it is now.

Overall I think this year taught me some important things and I believe I am now mentally stronger and it is easier for me to overcome hard situations and obstacles. I hope next year will be better and healthier. I have many plans and I want to start doing some new things which I am excited about, so wish me luck 🙂

Anyway..to everyone who came or will come across this blog, I wish you all very happy, successful and healthy year 2017. May all your dreams come true. (And don’t forget to visit my pages again ;)).

Movie: Transcendence

http://www.imdb.com/title/tt2209764/?ref_=nv_sr_1

This movie from 2014 attracted me when I saw Paul Bettany in the first scene followed by scene with Johny Depp. I never heard of that movie before and the theme sounded interesting to me. When I saw Morgan Freeman in the next scene, I decided to give the movie a chance despite the fact I was about to go to bed.

The beginning is pretty fast. You have no idea what’s going on, just people are dying. However, when it calms down a bit, the movie comes up with some very interesting ideas about the current world and all the new technologies the scientists come up with day by day.

It’s actually interesting to think about where are the borders between technology and humanity. Today, when it is being considered normal to use artificial hands, feet or any other part of the body (or at least transplanted organs ;)), and when robots are acting more and more like humans, it is just a matter of time when people will come up with artificial consciousness. And I bet many are working on it already.

I already saw few movies or episodes in sci-series on this theme so it was nothing new for me but I must say I did like this particular movie. I liked the story, the actors, the way the movie was made, etc. However, as it brought nothing new to me, in fact, the artificial consciousness became bad and was destroyed, a little bit of cliche, no?

My evaluation is 7/10.

Czech transplant community

Few moths ago I was writing about establishing some community of people with transplanted organs and people around them. Back then I thought I had to start from scratch but it turned out that there already exist some smaller or bigger groups who try to put these people together.

At first I found the web page Transplantsport.cz (in czech only) which seemed to be about transplanted people doing some sports (obviously). However, all the articles were 12 and more months old. So I decided to contact the person, who was signed under the pages, Martin Turek, if he agreed to cooperate and run the web (and associated facebook profile) together.

I was glad that he replied my email prety fast and was glad that I contacted him. He said that he somehow lost power and will to run the web just himself. That he tried to find someone who would cowork with him on it but was not successful to he just lost the taste to do it. However, when I wrote him and wanted to help him and cooperate with him, he found it again. And so we started to write articles, update the FB profile and tried to reach more and more people.

After some time, when the article about me was released, I received a contact to Tomas Drevikovsky from Czech transplant team (CTT). CTT is a nonprofit organization which unites people with transplanted organs who like to sport and who participate in European Transplant and Dialysis Sports Championships and World transplant games.

They wanted to contact me as they saw the article about my running and thought that I might become valuable member of their team which pleased me a lot. So I decided to join them.

None of these two groups/organizations/communities is exactly what I wanted to create, however, it is a good beginning and I believe that it is a good starting point. I believe that now it will be a lot easier to bring people with similar problems and dreams together.

 

11 years since the transplantation

Few days ago, on November 2nd I was celebrating 11 years since my 2nd transplantation. Well, I can’t really say I was celebrating, but each year I remember the day of the transplantation and evaluate the last year and all the years since the transplantation.

It is always kind of weird because in Czech republic 2nd November is the day of Memory of deceased. Which means that most people go to cemeteries to think of those who died, bring them flowers, clean the graves, etc. I always think of the man whose kidney I have. In the past I used to go to church to light a candle for him but last few years I just think of him – what was he like, what actually happened that he died, etc. And I light the candle at home.

But despite this fact and also despite the weather which is mostly rainy and cold as it is already fall, I try to stay positive and kind of celebrate. Mostly just in my head. I am really grateful that the kidney is working well despite the stress we went through at the university or at later at work, also we managed to go through pregnancy together and managed the hard birth giving. We also managed to go through the strong depressions during and after my divorce and last but not least, we managed to cure all those pneumonia and bladder inflammations and other illnesses during the years.

But on the other hand, from time to time it comes into my mind that the average kidney transplant life expectancy from deceased donor is 8 to 12 years. Which means that I am actually already there and I just can’t not to think about what comes when something happens with this kidney. When I think about getting back to dialysis, I suddenly start to feel very bad. My head starts to hurt, my blood pressure increases and I just start feel terrible. I can’t imagine going back there…and… I don’t want to continue about these thoughts in this post as this post was supposed to be positive, describing what great success it is to actually have transplanted kidney all these years and live the life I live, which means going to work, having great daughter, being able to run and exercise…but somehow my thoughts are more and more leading towards the dark side….

Maybe it is because I can feel that my health condition is slowly but constantly getting worse. I was diagnosed with diabetes, lately also with high cholesterol, which I was told is connected with the diabetes, my bladder infections are getting more often and more serious…and despite the kidney is taking everything very well, the creatinine is still up to 100, I am starting to be afraid what kind of post I would be writing next year.

Article about me

Some time ago I received a message on my Facebook from some woman named Jana Fili Ptackova that she was an editor in chief of a magazine Stezen which is a magazine for dialyzed and transplanted. I knew the magazine but didn’t know her so I was a bit skeptic about it. However, I agreed with the interview and we set up a meeting.

We met in a small cafe place and had a really long talk. She told me that she was interested in my story and also in the fact that I was running a lot even after transplantation. She was asking me about my health, running, family, work etc. and she was recording every single word I said. For me it was more like a chit chat more than interview so I was interested in the results.

After few weeks Jana sent me the draft of the article and also told me that she would like to have my picture on the cover page. So I sent her some pictures I had from my runs and here you can see the result:

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You can also read the whole article in the magazine here (it’s only in czech though): stezen_2016_02

Book: Joy Fielding – Now you see her

Here is the official description of the story from www.joyfielding.com :

When Marcy Taggart goes to Ireland after divorcing her husband of twenty-five years, a chance encounter catapults her entire life into turmoil. Years earlier, her daughter, Devon, disappeared in the icy waters of Georgian Bay after a canoeing accident, her body never recovered. But on a day trip to Cork, Marcy is certain she spots Devon walking down the street. When her daughter disappears into a crowd, Marcy begins a desperate search to find her — and to uncover the disturbing truth that might, in the end, be her only salvation. Exhilarating and engaging, this is Joy Fielding at her best — delivering a pulse-racing, tension-filled read.

I read this book right after the Someone is watching title and it felt like reading almost the same book just with different main characters and different tragedy behind. But the template was almost the same. Some woman who sent through some terrible tragedy and now is mentally broken and starts to act weird. Starts to trust someone who she barely knows and he/she turns out to be actually the bad guy behind the weird situations in the end.

In the previous book Bailey started to see the man who raped her in every man she met who physically looked like him and in this story Marcy saw her daughter in every girl which physically looked like her daughter. Bailey started to trust her helf-sister and Marcy trusts some waiter she meets in a restaurant.

I think the Someone is watching book was more boring and slow but at least the main character was not acting as much stupid as this one. While reading this book I had few times feelings that I might not be able to continue reading the story as it was stupid too much.

I mean, I can understand that sometimes when people go through tough times they might not act rationally but I think in this case the author went too far. And actually as I was reading these books one after the other, it was more than clear to me who would be the bad guy in the story so it was too predictable for my taste.

So, I am giving this book 5/10 the same rating I gave the previous book and I feel like I need to take pause from this author for some time to be able to read some book from her again.

 

Book: Joy Fielding – Someone is watching

Here is the official description of the story from www.joyfielding.com :

Deeply shaken after a brutal attack, Bailey Carpenter struggles to reclaim control over what had once seemed like a neatly-ordered life. Unable to face her job, her friends, or even the world outside her apartment, Bailey is trapped with her thoughts, replaying the attack in a desperate search for a detail that will help the police uncover the identity of her unknown assailant. Bailey sees her attacker in the face of every stranger, and is unable to trust anyone other than her half-sister, Claire, and Claire’s snarky teenage daughter Jade. To pass the time in her lonely apartment, Bailey plays with the binoculars she once used in her career as a private investigator, scanning the high-rise buildings around hers for entertainment. She quickly discovers a favorite source: a handsome, wealthy playboy in the apartment across the street. But as she watches him strut around his bedroom, she starts to wonder if he’s putting on a show – with her as his intended audience. Looking out the window late one night, she sees him looking tauntingly right back at her, binoculars in hand. Could it be the assailant she’s been so desperate to identify has been right there, watching her, the whole time? The police, exasperated after Bailey’s many paranoid false alarms, believe she’s crying wolf, and Claire tries to convince her she’s wrong. Doubting her own sanity, Bailey has only Jade left to turn to, and together the two hatch a dangerous plot to discover just what exactly is going on in the apartment across the way.

This book was nowhere close to Shadow Creek in quality. The story was pretty good at the beginning but then it terribly slowed down and it took most of the book to get the speed back. It feels like the author wanted to compensate the lack of the action in the story with the complicated relationships in the main character’s family and very long descriptions of her feelings and halucinations which vere very often repeating. It just felt like reading the same parts over and over and the story was moving forward just very slowly. In the end it started to be a bit more interesting but still…not better than 5/10 for me.

 

Book: Joy Fielding – Shadow Creek

Here is the official description of the story from www.joyfielding.com :

Due to a last-minute change in plans, a group of unlikely traveling companions finds themselves on a camping trip in the Adirondacks. They include the soon-to-be-divorced Valerie; her oddball friends, Melissa and James; her moody teenage daughter, Brianne; and Val’s estranged husband’s fiancée, Jennifer. Val is dealing with unresolved feelings toward her ex and grappling with jealousy and resentment toward his younger, prettier new flame, a woman with some serious issues of her own. Brianne is sixteen and openly rebellious, caught up in a web of secrets and lies.

What Val and her companions don’t know is that a pair of crazed killers is wreaking havoc in the very same woods. When an elderly couple is found slaughtered and Brianne goes missing, Val finds herself in a nightmare much worse than anything she could have anticipated. She was half-expecting it to be the trip from hell, but what she never could have predicted was that this impromptu little excursion would become an all-out struggle for survival.

For me this was the best book I ever read from this author. My mom borrowed it to me so I could read it while staying in a hospital and I must say that I finished it in two days. It caught me from the beginning and despite I was able to guess some things, still I was really enjoying the story from the beginning to the end.

To be honest, I liked the story about Val and her dealing with Jennifer as it so much reminded me of my situation and dealing with my ex-husband’s new girlfriend. Val did not actully hate her, she was just dealing with her existence as good as she was able to. And in the end she found out that Jennifer is actually not as bas as she thought and they became some kind of friends.

I know many people don’t believe in this kind of realtionship and they believe that it is not correct if they don’t hate each other but I just know from my own experience that it possible is and moreover it is very nice.

Besides the story, the book is full of jokes, funny comments, thoughts, absurd situations and for me it just has everything I expect from a good book.

Thanks for this book! I definitely give it 8/10.

Bladder inflammation #2/2016

Yep, here I am again, enjoying the all inclusive service in a hospital. This time I am staying in the hotel, oh sorry, in the hospital in České Budějovice (web not in English, sorry), where my parents live. The original plan was to arrive with Ema by train to my parents on Friday, October 7th and on Saturday to run with my dad, cousin, her boyfriend and million friends Night Run (10 km through the town in the dark with head lights). Then stay with my parents till Sunday and then travel back to Prague. Sounds nice, huh? Only it changed a bit. Well, a lot.

Already in the middle of our ride in the train I started to feel unwell. I felt cold, tired and my joints started to hurt a lot. That never signs anything good but sometimes it just means that I am too tired and that I should rest a lot. As I was working really a lot during the previous few days, I thought (and hoped) this might be the case. So as soon as we arrived to my parents, I told them I needed to rest, ate awesome hot cauliflower soup from my mom, took a hot bath (and painkiller pill just in case) and went to bed. At 5 pm. Whatever! When I need it, I just need it.

When I woke up, I felt perfectly fine so I ate some other great meal from my granny, made me hot tea and joined others in grannys living room for talking. We were there almost by midnight and I still felt good so I thought all was fine.

But of course, it wasn’t. At 2:30 am I woke up with terrible pain in joints and with rigor. I thought I was gonna freeze. So I took thermometer and measued my temperature. When it showed 38.6 degrees, I went for some pain and fever killer pill and went back to bed, knowing that in the morning I would have to go to hospital.

In the morning I told my parents and so we went. It is always better to go as soon as possible so the inflammation doesn’t become too strong. When the doctor heard that I had transplanted kidney and fever, he immediately asked me if I agreed with hospitalization. To be honest it shocked me a bit. I mean, I knew that it was probable that they would want to hospitalize me but the doctors always take my blood and urine first and wait for results before they suggest this.

This doctor did nothing like that and just decided to keep me in the hospital based on that I have a transplanted kidney and that I was claiming that I had fever at night (which I didn’t have at the moment as I was under the medication from night). I could clearly see on him how he was scared that he actually had to deal with someone with transplanted kidney. Oh well, I can’t blame him. He was young and probably didn’t have experience with this yet.

Anyway, I went through the whole hospitalization process (it took like more than 1.5 hour and still no tests), got me one bed room (yay!) and got some medication for lowering temperature (which increased to 38 again by that time) and for hydratation. Then they finally took my urine and blood (I must say that maybe for the first time in my life I was happy that someone finally did it! :D).

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After few hours they informed me that CRP was 70 (wow, last time it was 300) and creatinine was 100 (phew) and that it clearly is some kind of inflammation but they don’t know which and where (as always) so they started to give me some wide range antibiotics with hope that they will be the right ones for the specific bacteria I had.

They also started to give me the hydrocortisone which is a medication which helps to fight the inflammation but one of the side effects is that it blows up the sugar level in your blood. So the glycemia is like on the roller coaster. Which in very unfortunate as two weeks ago I was on a check at my diabetes doctor and he told me that my diabetes is finally (after about half a year, well, actually from the last hospitalization) under control and more or less in normal values. So, when they release me, I will have to start all over again from the very beginning. Yay!

They were giving me this treatment during the whole weekend until they found out on Monday that CRP increased to 150 and that they had to change the antibiotics to different, more specialized ones. Which meant the whole weekend treatment was almost for nothing. Well, not for nothing, but could have been better if they decided for different type of antibiotics. Unfortunately this is always the risk at the beginning untill they get the results from the tests.

So from Monday I am getting the right treatment and I was hoping that maybe on Friday they could switch the intravenous antibiotics for pills and release me home. Haha. Today the doctor came to me and informed me that she had a discussion with my doctor at IKEM who told her that he would like me to be taking these antibiotics intravenously another 7 DAYS! Unfortunately there are no pills with the same effective component I need. Very good to know.

It looks like instead of visiting České Budějovice for 2 days, I might be staying here for almost two weeks. OMG. Fortunately my mom borrowed me her laptop (I think its around ten years old and incredibly slow) and they have internet here in the hospital (slow but stable at least) so I can at least work here which makes me really feel better mentally. Mom and dad are visiting me every day and thanks to the laptop I was also able to make a skype call with Ema yesterday which cheered me up a lot. She is just the real sun shine in my life.

I have to admit that I was really sad and desperate this morning when the doctor told me about this and I cried a lot. But then I was thinking about it and realized that being desperate and crying helps to solving nothing, maybe it even makes things worse because the body is under stress. Yes, it helped me to get over the information and calmed me so I slept a lot but I think it’s time to turn the page. I can rest a lot here, read books, write this blog, read magazines or facebook, even work if necessary, so I should just enjoy the moment as much as I can. Nothing that bad is happening.

The kidney was not harmed, the creatinine was 70 today, and I will get better. They will heal me and I will come back to my normal hectic life again. Sooner or later but I will. This was not the first not the last hospitalization in my life whether for bladder inflammation for other illness. It belongs to my life because of all the medication including immunosuppression which helps to protect the transplanted kidney and I just have to accept it.

A little update – Sunday, October 16th: This morning I woke up all swollen and whole my body was covered with red spots which were itchy like hell. The doctors claimed that it looked like allergy to the antibiotics I was treated with so they stopped immediately with them and started to heal these allergy symptoms which were pretty strong to be honest.

7 am

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10 am

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So instead of bladder inflammation, which seems to be cured already, I am now being treated with hydrocortizone (even more than before) and dithiaden which is an antiallergic pill. With hope that if everything is ok, they will release me from the hospital on Thursday. Please let it be.

So far I managed to read 4 books, millions of magazines about health, cosmetics, fashion, exercise, love stories and various other themes (I’m a bit scared that my IQ decreased a lot), worked a bit and became terrible lazy from the forced laying in bed. It’s just about the right time to go back to normal life!

Second update: Yep, it’s here! Released from the hospital on Thursday, October 20th after 13 days.