World Kidney Day 2017

It is here again! Let’s celebrate our kidneys, they deserve it! They work hard 24/7 without any pauses or vacation. Did you know your kidneys filter 125 ml of blood each minute? It means 180 liters of blood daily! Wow, that’s amazing, isn’t it?

Over the last 11 years, it has become a tradition to proclaim the second Thursday in March the World Kidney Day. It is a worldwide campaign which aims to highlight the importance (and they ARE important!) of kidneys for our body and increase awareness of possible illnesses (or damage) and their prevention. Did you know most of the kidney illnesses don’t hurt at the beginning? The pain usually starts when the illness is serious and sometimes even uncurable. Ooops, scary, right? The kidney problems can be easily recognized from your blood or urine so think of prevention.

This year the World Kidney Day is on Thursday, May 9th (TODAY!). Like each year, also this year’s campaign is focusing on one theme connected to the health of kidneys, risk factors or illnesses. This year the theme is Kidney disease & Obesity.

World-Kidney-Day-2017

Obesity is becoming the modern age epidemy and is closely connected to diabetes and high blood pressure. It is also one of the risk factors for kidney illnesses as it increases the demand on kidneys work. They have to filter more blood than normally to meet the metabolic demands of the body. Logically, more kilos, more work, do the math!

The good news is that obesity can be prevented or reduced when already developed with a healthy lifestyle and physical activity! So don’t eat poisonous stuff (e.g. burgers, french fries, cakes full of white sugar, etc.), eat more veggies and fruits, drink lots of water or tea (without sugar) and move! Watch this or this video to get the mood 😉

Over the world, there are many activities and connected campaigns to support the World Kidney Day like open days in hospitals, possibilities to have your health checked on public events, meetings with doctors, TV and radio campaigns, sports events and many many others, so check them out in your area! Some of them are listed here.

I am definitely going to join the  #move4kidneys initiative. If you want as well, just do any physical activity and share it on your profile on Facebook, Twitter, Blog, Web…wherever! with the move4kidneys hashtag. So run (that’s what I love), walk, dance, swim, ride a bike, do yoga, aerobic, pilates, climb rocks (or trees), jump on trampolines, pump your muscles in fitness,  play football, volleyball, basketball, tennis, hockey, do handstands, do whatever you like, just do it! See you somewhere there!

 

 

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.

 

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.

Pregnancy and childbirth after transplantation

Having a baby after transplantation is pretty common but it is provided by more risks than pregnancy of healthy woman. Women on dialysis shouldn’t get pregnant at all because of unstable level of hormones and high probability of miscarriage. The whole topic is very well described in this article.

When it was about five years from my kidney transplantation, me and my husband started to think about baby. As the transplanted kidney was working without any bigger problems the doctors approved it, only they had to change my medication as the one I was taking at the moment could be dangerous for the baby. Than we had to wait few months if everything would be ok after the medication change. Because nothing went wrong, we could start trying.

Believe it or not, I got pregnant on first “attempt”. It surprised us a lot as mostly even healthy women have problems with getting pregnant not only someone like me with my medical history and so many pills taking every day. But it just happened.

At the beginning I wasn’t even realizing that I was pregnant. I had no morning sickness, no tastes for weird combinations of food, no problems with smells or tastes, just nothing. The first complication came at sixth month when I had to undergo a glucose screening test for gestational diabetes. It is a common test that almost every pregnant woman has to take. In my case they found out that my sugar level remained too high, which means that the body was not responsive enough for insulin.

At the beginning it meant just following a well planned diet but later in time as it went worse, I also had to inject me insulin shots. At first I was scared of it but I was surprised how developed the insulin pens were and I could hardly feel the needles how thin they were. The only real annoying thing was that I had to control the sugar level in my blood after each meal to find out if I needed the insulin shot or not.

Another complication appeared about five weeks before the assumed childbirth date. As the baby was growing, it started to press to my share-bone in a way that it terribly hurt when I was walking. At that time the doctors decided that it would be better if I stayed in the hospital till the delivery date. Oh well, five weeks in a hospital!

Fortunately they allowed me to spend each weekend at home but still I was not happy about the situation. Few weeks later the doctors decided that the pressure to my share-bone was to big and so they decided to go for a c-section and they planned it one week before the expected delivery date.

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The big day was set to March 10, 2011. I decided only for an epidural anesthesia instead of general anesthesia as the doctors told me that epidural would affect only my body but the general one would affect the baby as well and I didn’t like that. So in the morning I was given the epidural injection and was waiting for my doctor to come. My husband was there with me.

I don’t remember much what happened when the doctors came. I just felt some pressure somewhere around my underbelly, then some dull pain and then they showed me violet little baby covered in a white clay. The most beautiful baby I have ever seen. Then I remember I said how beautiful she was and then suddenly started to feel very bad. I felt like fainting so I started to say to the doctors that I was feeling bad and that I was gonna faint….

And then suddenly I woke up at DOA unit with lots of hoses in my hands, many monitors around and no idea what was going on. Later I was told that during the childbirth the doctor cut accidentally the transplanted kidney and it started to bleed heavily. I lost more than 1,5 liter of blood and the doctors were actually fighting for my life. (Again…)

When my husband called this to my mom, she immediately contacted IKEM and one of the doctors almost immediately arrived to the hospital and started to investigate what actually happened and how much it affected the kidney. Fortunately and I must say I still can’t believe it, the kidney was fine. Just creatinine increased slightly. Fortunately it was just temporarily. Besides that, no harm done.

I don’t know exactly how, but when the doctors were trying to stop the bleeding during the childbirth, they also caused me some burns at the underbelly area, so together with the c-section scar it hurt like hell. The treatment of the burns then took several weeks and was very painful.

I spent in the hospital eight days which were physically and emotionally very hard. All the pain together with stress from taking care of new born baby who had to be fed each three hours and was refusing breast feeding because when I was at DOA unit the nurses were feeding her from a bottle and she got used to it. She also slept mostly during the day and didn’t sleep much at night. Moreover, the nurses told me that I was having the loudest baby from the whole department. Haha, I wasn’t even surprised 😀

I was pretty desperate and actually started to cry from happiness when the doctors told me that I could go home. They gave me box of injections of something that was thinning the blood to prevent thrombosis and I also had to come back to the hospital every second day because of the burns treatment. But I was just happy to be home with my family.

Whatever happened then there, I am just grateful to have the most awesome daughter in the world, my beloved Ema.

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My kidney transplantation – Part 4

When we arrived to the hospital, they were already waiting for us. First of all they took me enormous amount of blood, I don’t remember exactly but it was around 10 tubes at least. They also started to examine other things like pressure, temperature, ECG and other million of things. They also told me that it was good that I came directly from dialysis so I had my blood pretty clean. Sometimes, when it is too long after the last dialysis, they have to do special pre-transplantation dialysis to actually clean the body and prepare it for the operation.

When all other tests were done, we just had to wait for the blood matching and compatibility tests results. Simply, they had to make sure that the kidney would match the body. It felt like waiting forever. I can’t even say if it was minutes or hours, it just felt forever. I remember that we were talking about how it would be with the transplanted kidney, how everything would change, what would we do when I got better and so on. We just didn’t want to admit that it might not come true.

Finally, the doctor came and said all was good and ready to go. I was so happy! So me and my boyfriends kissed, hugged and said each other it was gonna be ok. And I left to the operational room. So excited, so happy and so scared at once! I was watching the nurses and doctors going around, preparing things and just wanted everything to be over already.

When suddenly a phone in the room rang. The nurse picked it up and looked at me, than to the other nurse in the room and said: “Wait! Stop!”. And continued talking to the phone. After few short sentences she said something to the other nurse again and told me that they were doing some last final test and unfortunately they found out that something was wrong.

Another punch right into my face. At the latest possible moment they told me that actually all I went through in the last few hours was for nothing. That all was gone. No operation, no kidney, no hope… I broke down…just couldn’t stand it anymore. I started to cry and shake and wasn’t able to calm down.

I have no idea how long it took me to  calm down but when I did, we went home. I don’t know when or how we came home, how I fell asleep..don’t remember much from that night. The other day I had to go for another dialysis because the one from previous day was not finished and I still didn’t have the transplanted kidney. I was very tired, very sad and was describing the nurses what happened.

Than in the middle of the other dialysis my cell rang again. IKEM… Kidney… “Do you want to accept it?”…What? Are you kidding me? Is this some kind of test? Or joke? Or what? But of course I said “yes” again. So, the same procedure as last time. Actually yesterday. Blood taking, pressure, temperature, ecg, waiting….

The results were positive again so they were taking me to the operational room. But this time, I was somehow calm. I wasn’t able to get excited because I was scared that what happened yesterday might happen again…

Then I remember just waking up at the intensive care unit. All went well, the kidney started to work directly at the operational room, producing urine.

It was November 2nd, 2005 and the day was The new beginning of my life.

The recovery was not easy. The first few days I spent at intensive care unit. It was painful pretty painful despite I was being given some painkillers. From the beginning the doctors were forcing me to walk but I was able to do just few steps. I felt unbelievably tired. But it was getting better in time.

As I already mentioned, the kidney started to produce urine already during the operation so now I had to learn again to drink a lot. For few days at the beginning I had a little hose inserted in the bladder so I was not actually going to the toilet. All the urine was going to a special sack where the doctors could see the amount of the urine and also if it doesn’t contain blood or something else it shouldn’t. Fortunately all was perfect so they removed the hose and finally I was able to go to the toilet.

But there appeared another problem. As I was not urinating much the last several months, my bladder actually shrunk. So I had to go to the toilet literally each 10-15 minutes. But to be honest, at that time I was just enjoying that I was actually able to drink and go to the toilet so it was not even annoying. I was happy that it worked well!  And it eventually got better within few days.

After few days something happened and my creatinine started to grow. I was scared to death that I was losing the kidney and got very depressed. The doctors decided to do biopsy of the kidney to find out what was wrong. It basically means that they take a huge needle and take a sample of the kidney cells. It hurts but it’s just a second. Than you can’t get out of bed for 12 hours so the kidney can recover.

With this examination they found out that the kidney had signs of rejection. It made my depressions even worse and I couldn’t stop crying. Fortunately they gave me some special medication which stopped the process and the kidney came back to a normal stage again. The treatment totally messed up my blood sugar but that was just a little complication. For few weeks I had to check my sugar level until it came back to normal.

Overall I spent 14 days in the hospital after the operation before I was released home. At home I had to be pretty much isolated and be very careful not to get any infection. The checks at the hospital were each week but the interval was being prolonged as the time from the operation was passing by. Now I have to go there each three months.

Well, my return to normal life was very slow but I was enjoying it.

 

My kidney transplantation – Part 3

Some people say they can live normal life on dialysis. I couldn’t. Almost from the beginning I was suffering a lot mostly from head aches and muscle cramps. I was always convinced that I would rather die than having to go through this ever again. But to start from the beginning…

Before the fistula was ready to use, all my dialysis were being processed via the line in my neck artery. It didn’t hurt, just the disinfection process they had to do before each dialysis was not very pleasant. They just connected the line with the machine and I had to wait until the machine cleaned my blood from all toxic wastes and water. 4 hours process 3 times a week.

You can either sit in a chair or lie in a bed. Mostly people sleep, read, watch TV or talk. At the beginning I was sleeping but after few sessions I started to feel the side effects of the dialysis. At first I just had head aches, nothing special. Then also muscle cramps, mostly in legs, which was a lot worse. Sometimes I had such strong cramps in the whole legs that the doctors were afraid it could actually break my bones. They were giving me lots of magnesium and calcium but it was not much helpful.

When you are on dialysis you have to significantly lower your daily liquids income. This includes not only drinks and soups but also fruits, vegetables and in fact you have to watch the percentage of liquids in anything you eat. There is liquid even in bread.

The doctors count you your “dry weight“, which is the amount of body mass (weight) without extra fluid (water). Basically it means that it is the weight that you should have after the dialysis. The more liquids you drink between two dialysis sessions, the more weight you gain and the more must be reduced by the dialysis. The more reduction is being done during the dialysis, the worse side effects it may have.

So I was trying not to drink much (if I remember correctly I was allowed about 500 ml per day) to avoid the terrible side effects. It was not always that bad but I had only few dialysis sessions without any complication.

As I had these bad reactions on dialysis I always had to have someone to either take me there and back or at least to go with me. When I was in České Budějovice, where my parents and most of my relatives live, they always took me there by car and then took me back again. When I was in Prague, my boyfriend always went with me and came for me at the end and we had to go by bus as we didn’t have car at that time.

The whole schedule of both of us was totally subordinated to my dialysis times. I must say that still today I am very grateful to everyone who actually spent that time and effort and helped me to survive this terrible, painful and depressive period.

Yes, depressive. A lot. During the dialysis sessions I was more than ever in my life realizing how dependent my life was on machines, electricity, medicine, people around me… Pretty often happened that I had those almost unbearable painful cramps, then after the dialysis I could barely walk, had head aches, sometimes even puked and was depressed. So someone just took me home to bed and I slept for few hours.

Ok, now how much pain can your stand? Always a bit more than you think. When in about 8 weeks the fistula was ready to use, the doctors decided it was time to start using needles. Well, this, was NEEDLE. If you don’t mind watching medical pictures, you can take a look here (don’t say I didn’t warn you). If you don’t, just imagine about 5 times wider needle than is the normal one for taking blood.

When I first saw it I couldn’t believe they actually wanted to use that on me. In the past I almost every time collapsed when had to give blood for tests, couldn’t watch it or even think about it. Now I saw this. Well, when they did it for the first time it really hurt. Like hell. And they had to insert two of them, one for the dirty blood to go away and the second one for the cleaned blood to come back to the body. I must admit I cried. And the worst moment was when I realized that this is not the last time. They would do it three times a week…two needles…no one knew for how long…

Fortunately after some time it didn’t hurt that much. Or I got used to it who knows. But on each single place where the needle was inserted into my hand stayed a little scar. Very little one. But many little scars on a small place create one big scar. Sometimes people ask me what happened that I have such scar on my hand. When I explain, they are either shocked or don’t really understand.

Anyway, at about this time I had to decide whether to continue studying or postpone the current semester. Oh well, it wouldn’t be me if I didn’t jump into it headfirst. Especially some exams were pretty challenge but in the end I managed to finish all required exams and started to enjoy well deserved summer.

At about end of September the doctors finally told me that I recovered enough from the first operation and that they could put me to the official waiting list (list of people who need transplanted kidney). Moreover, as I had the first transplanted kidney from the living donor (mom) together with the serious problems I had when the first kidney died and my problems on dialysis, I was put on priority waiting list.

Being put on a waiting list actually means that the transplantation coordinator can call you 24/7 that they have a kidney from deceased donor which matches your medical profile. They will always ask you if you want to accept it. If you do, you must be able to get to the hospital within some short time, otherwise the kidney couldn’t be used anymore and they would offer it to someone else on the list.

So I was going everywhere with my cell, making sure it was charged and had signal. On November 1st, 2005, when I was in the middle of dialysis, I had a phone call. The coordinator from IKEM called me that they had suitable kidney for me and if I wanted it. OF COURSE! So the nurses ended the dialysis, my boyfriend picked me up and we went directly to the hospital…