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A KINDEY TRANSPLANT

English3Contents

INTRODUCTION
From own kidney function to own kidney function again. Transplantation for many years. The road map.

‘BEFORE’ FOR THE SOUL
Main consideration and gut feeling. First we set our frame of mind. The whole soul in the whole body.  Long and short-term goals. Self-care – worth your weight in gold. Partnership with the care services. Good care though good education. Take all your tablets – no exceptions. Your reliable way of taking your medicines. Enough knowledge – for you.

‘BEFORE’ for the body
Preparing the body. Slowing the deterioration and feeling better. With or without diabetes. Keep blood pressure down. A heavy disadvantage. Smoking increases all risks. Trim heart, blood vessels and muscles. Early transplant. On dialysis as short a time as possible. Health more important than age. Very different diets. Free flowing. Reduce sun exposure – starting now. Teeth and gums. Best to be careful with alcohol. Other illnesses as well. Necessary investigations. Action plan for preparing yourself. Ready, prepared, approved.

DIFFERENT DONORS
ONE healthy kidney is enough. Kidney from a living donor. Kidney from a deceased donor. Kidney from a living or deceased donor. Benefits and drawbacks of a transplant.

THE OPERATION ITSELF
A kidney from the next room. Always prepared for surgery. Kidney from a deceased donor. Life on the ward. Checklist before going home.

‘AFTER’ FOR THE BODY
Life with a kidney transplant. Caring for your kidney and the whole of you. Home again – in self-care. Important, frequent checks. Diary for your self-checks. The body’s natural defences. Suppress the immune system, keep the kidney. Medicines, our life-long companions 54. Medication list. Infections should be avoided. Continuing to keep an eye on blood pressure. Enjoy life – but don’t put on weight. Good food for a good life. Protect your liver. Better health with physical exercise. Protect your skin from the sun. You could develop diabetes. Transplanted and smoke-free. Give yourself a (careful) pat on the stomach. Sex, life together and having children. Some vaccinations are fine. Planned travel, smart travel.

‘AFTER’ FOR THE SOUL
Reflections and emotions.

ACKNOWLEDGEMETS

INTRODUCTION

Transplantation for many years

A well-functioning kidney can be moved from one person to another, from a donor to someone who needs a ‘new’ kidney. In purely practical terms, the actual transplantation involves two operations. But a ‘transplantation’ is so much more than that.

For us patients a kidney transplantation is often a drawn-out process, with a long ‘before’ period prior to the surgery and nowadays usually also a long ‘after’ period once the surgery has been performed. Seen from our perspective, the ‘transplantation process’ can take many years.

The goal is: to go from your own,  reduced or lost kidney function – via a transplantation – to having a kidney function of your own again.

As yet there is no cure for chronic kidney disease, and it cannot usually be stopped either. The reduction in kidney function is generally slow – and the rate of that reduction can be slowed down. For most people there is a long time between diagnosis and a transplant, often several or many years. Therefore, many of us have plenty of time to prepare for a sought-after transplant, and there is a lot we can do ourselves.

During the operation itself and the days that follow, we are well taken care of by healthcare professionals at the hospital. And we are respectfully grateful for that. We are also very grateful for all the advances in science and general development that have made transplantations possible.

Once we have left hospital after the operation, there is still a lot we can and need to do ourselves. In fact only we ourselves can carry out our continued day-to-day care – with the support of our family and close friends.

Taking care of and looking after ourselves is not just about the transplanted kidney, but the whole body and soul. After all, we are all so much more than a reduced kidney function, and the whole of us needs to be looked after. We have a whole life to lead, with everything that entails. And it is this very ‘whole’ that is most important of all.

This book is therefore written from the patients’ perspective. From our overall, holistic perspective.

The book is intended for most kidney patients and their family and close friends. For those of you who have kidney disease and want to know more or aim for a transplant, and for those of you who have already received a ‘new’ kidney. All along the way and all the time, from beginning to end, your own initiatives and your own self-care could be crucial to the outcome.

Because one thing is for certain: a successful transplant gives us a ‘second chance’ at life. And at best it feels like, and genuinely is, ‘a brand new life’.

/Per Åke

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The road map

Preventing kidney disease is not easy. It is impossible to avoid all the risks for kidney disease. The disease usually comes creeping up on us; we can have kidney disease for a long time without being aware of it. For an early diagnosis a person has to get tested before feeling even the slightest bit unwell. But for most of us, our kidney disease went undetected until it had taken a firm grip.

Start planning early
The point of departure for this book is, therefore, when we find out we have ‘chronic kidney disease’. This is when a new kind of journey begins through the healthcare system, along with a new and different life. This is also when planning for this new life begins, and that plan may entail a goal of having a kidney function of your own back through a transplant.

Trying to slow the progress of the disease and thereby saving as much of your own kidney function as possible is a good start. Slowing the disease gains us valuable time, we feel better, we remain free and unfettered, and we can prepare for the treatments we will need later on.

If ultimately our attempts to slow the deterioration are not enough, the kidneys’ various functions can be replaced by a donated kidney through a transplant. Ideally the transplantation is carried out before the remaining function in the patient’s own kidneys has stopped altogether.

If a transplant is not possible at that stage, several of the kidneys’ functions can be replaced through dialysis. At the same time other kidney functions are replaced or compensated for using medicines, dietary changes and fitness measures.

For anyone who has lost their kidney function altogether, dialysis is a lifesaver, a high-tech treatment that offers everyone who needs it a continued life of good quality. Being on dialysis is also time consuming and a strain both physically and mentally, but for the vast majority the benefits outweigh the drawbacks. Many people on dialysis want to have a kidney transplant, while others continue on dialysis for a long time.

Not all kidney patients can have a kidney transplant – for medical and other reasons – but all kidney patients are entitled to high-quality dialysis.

Transplantation is what this book is about – from the patients’ perspective.

The contents of this book follow ‘the road map’, i.e. what happens and what we can do ourselves:

  • BEFORE – to prepare our body and soul
  • DURING – i.e. in connection with the operation itself, and
  • AFTER – to get the transplanted kidney to stay, thrive and function both well and for a long time.

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‘BEFORE’ FOR THE SOUL

Main consideration and gut feeling

You have found out that you have chronic kidney disease and the indications are that your kidney function will slowly but surely decrease – to eventually stop altogether. You now start to think about and discuss what will happen further down the line, what options are available.

This is a quite, or indeed very, tough situation. The main consideration is to think clearly and logically and just look at the facts, you may think on occasion. But just as often you are overwhelmed by your gut feeling, which doesn’t like any of the options. None of the options sounds good. And the best option, getting well again, is not available.

Dialysis or a transplant?
The question is whether you should start to prepare yourself for a life on dialysis – or start planning on having a kidney function of your own again with a transplant. Obviously this is not a decision you can make by yourself; you must decide together with your doctors. But the will, your gut feeling, is yours alone and it can help you make the right decisions for you.

The sooner you start planning, the better. This gives you more time to think, discuss and prepare yourself, and enables you to improve your chances of having some control over your future.

Already on dialysis
You may already be on dialysis. The things you can do to prepare for a transplant are not that different from a person who has not begun dialysis.

The goal is the same: to be so well prepared – in body and soul – that a transplant is both possible and appropriate.

The most important steps
For a transplant to be both possible and appropriate, you should ideally be in the best shape possible, both physically and mentally. And that’s not easy for many of us. After all, we’re already chronically and seriously ill. Many of us have more than one illness and other health problems, all at the same time. But:

THE STARTING POINT in this book is that problems are there to be tackled and obstacles are there to be overcome.

 

First we set our frame of mind

All preparations and changes begin in the mind – with a thought, an idea, a will, a determination. With a positive attitude and the necessary knowledge, the obstacles to what we want to do don’t seem as high or as difficult. It also makes it far easier to reduce or even eliminate that all-too-common sense of helplessness which is so easy for those of us with a chronic illness to feel. The helplessness can be replaced by determination.

This is why this book begins with the ‘soul’, focusing on how you can influence your situation with both brainpower and motivation.

  • A positive attitude makes it easier to achieve what you want.
  • Clear goals help you know what direction to take.
  • You can carry out much of the care yourself – which is good.
  • It is essential to share the responsibility for care as a partner.
  • You need education so that you understand what’s happening.
  • Medicines are also a matter for the soul.
  • Knowledge that is enough for you to do the right thing.

 

Read more about all of this in the following.

 

The whole soul in the whole body

Being chronically ill is not a pleasant experience. For many of us it is truly depressing. We’ve lost the most valuable thing we had: our health. And in doing so we have also lost an important part of our identity – who we are and who we want to be, now and in the future.

Our illness turns the life we are used to upside-down. Much of what we used to take for granted – to do with work, studies, family, hobbies – is or will not be as obvious any more, perhaps increasingly difficult, and in some respects simply impossible.

There are many reasons for and ways of trying not to think about this. Many of us – especially men – are good at repressing the whole issue. We don’t want to think about it, we don’t want to know, or think about what might happen in the future. We deal with the problem as it comes – when it’s necessary, we say. After all, there’s not much we can do about it, what will happen will happen.

At the kidney clinic they might call us ‘pre-dialysis patients’, as though dialysis is the only option. Many of us, however, prefer to think of ourselves as ‘pre-transplant patients’. But there is such a lack of kidneys, everyone says, and such a long waiting list, and so many things need to fall into place. And we can’t influence any of that, we think. All we can do is wait.

It’s easy to get fed up and despondent for far less.

Think a-g-a-i-n, think bigger
Obviously chronic kidney disease is a very serious illness. But the question remains whether we really have to let this disease control our lives completely. We know it throws our entire body into disorder. But it doesn’t control everything. We are still whole and largely healthy people of flesh and blood, muscle and bone, thoughts, dreams and expectations.

Life is far bigger than a kidney, and much better than kidney disease. Our whole lives can be packed with meaningful content, while kidney disease has no meaning. And your life is yours – and yours alone – to live.

Everyone has the right to decide about their body and what we do with it. You can live healthily and have a health-oriented lifestyle. And you can do exactly the opposite and subject your body to every conceivable risk. Even when you’re sick, it’s your right to decide. For instance, you have the legal right to say ‘yes’ or ‘no’ to the healthcare and treatment you are recommended.

Better determined than helpless
Imagine if you actually could take the initiative and influence your current situation and your future too, rather than feeling despondent and helpless.

Just imagine…

What’s around the corner? Happiness or misery? Joy or sorrow?
Our expectations are a powerful force which guides our thoughts – and often the outcome too.

Positive expectations
We often illustrate the difference between an optimist and a pessimist by asking, “Is the glass half full or half empty?” The difference between someone who sees opportunities and thinks positively, and someone who tends to assume that pretty much everything will go wrong. Many kidney patients can easily end up among the latter group, who find the glass half empty. Not because we are all confirmed pessimists, but because the situation makes us gloomy.

It doesn’t have to be that way.

It has been shown that people who have positive expectations of what will happen manage to achieve what they want more often than those who are passive or have a more negative attitude. This is true in all areas in life – in healthcare, at school, in working life and particularly in sport. Many accomplished athletes devote as much time to their mental training as their purely physical training. They train hard on thinking ‘success’ for the simple reason that this leads to better results. For example, there’s no doubt that a high jumper who thinks, “I can do it, I can do it” will jump higher than one who is always thinking, “I’m going to hit the bar”.

Practising picturing ourselves ‘succeeding’ and ‘getting where we want’ can also help us kidney patients – for exactly the same reason. Some can manage the training themselves, while others may need a lot of good strong support from medical staff and family and close friends. Quite simply, it is not enough to just treat the illness; the mind and heart have to be included as well. This is absolutely crucial.

The best thing is to look at the whole, to regard ourselves as whole people (not as ‘victims’). This gives us strength in preparing for a transplant – and for the rest of our lives.

 

Long and short-term goals

Some people are extremely ‘goal-oriented’, very determined about what they want, where they want to be and what they want to achieve. Others are not sure, they’re unable to decide, and think that perhaps what they want to achieve isn’t possible. Setting goals for ourselves, which we ‘know’ from the beginning we will fail at, is not a good idea.

Or – perhaps it could be a good idea, in certain cases? Being a bit more optimistic than realistic? Challenging the difficulties, the apparently impossible? There could be a lot to gain from this kind of attitude, and nothing to lose.

The dream for many of us kidney patients is that we can somehow regain a good kidney function of our own. The only way that we can currently achieve this is through a successful kidney transplant. And to accomplish this we must first dare to believe that:

The goal is a life with a transplanted, well-functioning kidney.
In order to achieve the long-term goal – getting a kidney function of our own back – a lot of things need to fall into place, a lot of short-term goals need to be met. Many of these are linked to the organisation and resources of your healthcare. But we shouldn’t underestimate our own opportunities for influencing our chances – by doing our best to be really well prepared.

The most important aspect when setting up a long-term goal for yourself is to know where you want to get to, and know when you’re there. The long-term goal becomes a true guiding star, one that puuuulls us forward, over and through all the obstacles and uphill struggles. It is a goal we never, ever lose sight of. Two concrete examples:

Anyone who decides to run a marathon has a wonderful image in their mind: what it will be and feel like when they finally cross the line at the end of the race. They also know that the path there will entail many hours and many miles of training, sweat and tears, pain and disappointment. But with their dream goal constantly in sight, all this is far easier to deal with.

People who decide to lose a few pounds before their holiday are another example. Their goal is clear – for example to fit into their summer clothes or feel more attractive on the beach – and to get there they have to work hard, step by step, pound by pound.

And every step that’s achieved strengthens their self-confidence.

Step by step towards the goal
All of this also applies to us kidney patients. The desired long-term goal, having a kidney function of our own back, pulls us along and helps us tackle our path.

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Self-care – worth your weight in gold

The ideal scenario if of course to never fall ill. If and when we fall ill, however, we go to the doctor, get a prescription for medicine, take it – and get better again. This is what happens with many illnesses – but not with kidney disease.

Whatever the cause of the kidney disease it is primarily us, ourselves, who ‘own the problem’. After all it is our kidneys and our bodies at stake, so it is primarily our responsibility.

As with many other chronic illnesses, kidney disease is something we have to live with, be angry about, put up with, adapt our lives to. What’s more, treatment for kidney disease is a constantly ongoing process. Every day, all year round. And that day-to-day treatment is carried out almost exclusively by ourselves. For example:

When the aim is to slow the disease we take our medicine, follow our ‘kidney disease diet’ and try to live as healthily as we can. All to counter the progression of the disease and to strengthen our bodies in general. 10 hours of health care, 8750 hours of self-care in a year.

The same is true when we go on dialysis. We take our medicine, eat our diet and drink as much (as little) as suits a dialysis patient, and we strive to live healthily as far as possible. And we are on dialysis 760 hours of health care, 8000 hours of self-care in a year.

As a transplant recipient it is absolutely crucial to the outcome that we take our medicine, eat a good, well-balanced diet and live healthily. 5 hours of health care, 8755 hours of self-care in a year.

The great expertise of the healthcare system
During the entire course of the disease we are, of course, completely dependent on the extensive expertise that the healthcare and kidney care services can offer us. Without their knowledge and experience, we would be lost. But during all stages of the disease and during all forms of treatment, our own day-to-day care of ourselves is often crucially important. And this care continues all the time.

Many benefits – one drawback
Self-care has many benefits: it is always available, there are no waiting-lists for self-care, we don’t need a referral, we don’t need to wait for a decision, we don’t have to phone up and get put through to a dumb switchboard or phone queue, there are no special phoning times to keep to, we don’t have to travel anywhere, don’t have to take the bus or car or phone a taxi, self-care is open round the clock, seven days a week, we are cared for by someone who knows us very well and who is always available, the same person every time, excellent continuity in self-care, we don’t have to repeat our medical history again and again to new people, we know how we are feeling and what we’ve been through, self-care is free of charge, for the authorities too, we have a free pass all the time – and, furthermore, there’s no realistic alternative.   But there’s one drawback: active self-care works better for some of us than others. And if it doesn’t work, we have no one to blame.

 

Partnership with the care services

Us and them. Them and us. That’s often the way we think. Us patients and those people who work in healthcare. They’re healthy, we’re sick. We’re amateurs when it comes to illness, they’re professionals. They know and can do, we don’t know that much and can do even less.

Obviously it’s the same for the care staff, but vice versa. They are trained to care, they are called providers. We are a different type, we are care recipients, who need to be cared for.

The reasoning on the previous page about the extent and importance of self-care may well seem unusual and perhaps even alien, to both parties. When we meet healthcare professionals, we often have such great respect for their knowledge that we can easily underestimate our own ability and become completely passive. For care staff, on the other hand, it is quite clear that they are the ones that manage and carry out the treatment, not us.

The problem with this mutual perception of ‘us and them’ is that it makes it harder to achieve the best possible collaboration and, therefore, the best possible outcome from the treatment.

Give each other power and responsibility
There is no doubt that the doctors we meet have extensive medical knowledge, professional integrity, and both the ability and the right to make crucial decisions.

But us patients also have extensive knowledge – about ourselves. No one knows us as well as we do. We also have a personal integrity we are keen to protect. And when decisions are to be made about our bodies, we absolutely want to be involved. It is our right. No decisions may be made about me – without me.

If we and our healthcare professionals can meet with mutual respect for what we know and can do, this leaves the path open for a partnership that works for the best outcome, with the goal of the best possible health. We listen to each other, we discuss the situation and we come to an agreement about what is to be done and about who does what. The doctor, nurse, dietitian and physiotherapist all do what they are very best at. Us patients do everything that only we can do – self-care.

As partners we give each other power and strength – respect and responsibility.

 

Good care through good education

The goal is clear. The partnership with the healthcare staff has been established. We have agreed on what needs to be done. We have also agreed that each of us will do our utmost to carry out our part of the treatment. This is an agreement we have shaken hands on.

In order to fulfil out part of the agreement – the day-to-day care of ourselves – we need some education. No one would want to be treated by someone who hadn’t been properly educated for the job, would they? Through this partnership we are not only ‘care recipients’ but also ‘care providers’ – for ourselves.

The first step in your education is to read this book. It contains the vast majority of general facts you need before and after a transplant.

One or more family members or close friends should also read this book. Four eyes see more than two, and two minds think more and better than one. Your relative or friend may also have more energy and have just as much interest in learning about this as you do. Living with kidney disease always affects everyone in your surroundings to some extent, and the best support you can get in your everyday life is from your family and close friends.

Meeting and talking to people who have already received a transplant brings plenty of practical information about how it feels and what it’s ‘really like’ to be a person with a transplanted organ. They can often provide invaluable insight that you cannot get any other way or from anyone else. Other transplant recipients can easily be found via the kidney associations.

Different kidney clinics have different procedures for patient education. Important information will always be given to you by your doctor and nurse. Transplants also forms part of the kidney clinic’s general information to its patients (individually or in groups).

Understanding and motivation
In addition to written information, meetings can also be arranged in small groups of patients and relatives or friends (like a study circle). These types of guided discussions with others in the same situation aim to increase understanding, deepen knowledge and motivate the patients to carry out self-care.

You and your relative or friend should of course take part in all education offered to patients at your clinic. You can also read up on the subject yourself and learn as much as you can and want to – and you can take the initiative and talk to other patients and their family and close friends. Attending appointments to see your doctor – and your nurse, dietitian and physiotherapist – together is another way for both of you to learn more and get answers to all your questions.

When you and your relatives(s) or friend(s) know what you need to do, everything becomes far more meaningful.

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Take all your tablets – no exceptions

Fetching your tablets, opening your mouth, putting them in and swallowing – it’s not that difficult in purely physical and practical terms. The vast majority of people can do this without any great difficulty.

Medicine on the mind

The difficult thing about medicines lies in the mind. It is your mind that needs to keep track of all the different tablets, all the different kinds and how many of each type you need to take. And then you also have to remember to take all the tablets at around or exactly the right times of day. And that isn’t easy, bearing in mind everything else we have to think about – as well.

When we try to slow down the progress of kidney disease and when we go on dialysis, there are quite a lot of tablets we have to take every day. All these tablets are important for keeping us as well balanced as possible and in the best shape possible – and this in turn is particularly important ahead of a desired transplant. When we forget or are careless or cheat with our tablets, we and our bodies are not as well-prepared as we should be. We put ourselves in a worse position, which seems both unwise and unnecessary.

So: when you take the tablets as you should you are increasing your chances of receiving a transplant.

Test yourself – honestly
One important way of preparing for a transplant is therefore to reflect honestly – truly honestly – on how good you are at taking your medicines. Do you take your tablets exactly as prescribed by your doctor? Exactly as it says on the prescription and on the pack or bottle? How often do you miss a tablet? How often do you think that you don’t need to be so careful, that it can’t be that important?! Don’t deceive yourself. Answer these questions honestly and sincerely.

How good are you at taking:

  • The right tablets of different kinds?
  • The right number of tablets of different kinds?
  • Tablets at the right time or times every day?

Think carefully:
What is it that sometimes or often makes you miss taking:

  • The right tablets?
  • The right number of tablets?
  • Your tablets at the right time?

 

BEFORE you receive a transplant all tablets are important.

AFTER a transplant there is no scope for carelessness or forgetfulness.

Show yourself that you can
The best thing you can do for yourself is therefore to devise and practice a sure-fire system for taking your tablets. A system that is right for you and your life situation. You must practise this before you can be considered for a transplant. This is when you have the chance to test yourself and practise, because later on, if and when you receive a transplant, your system must work perfectly from day one.

If you are aware that you often find it hard to take your current tablets exactly as you should, it may be that a transplant is not the right treatment for you. That’s how important it is. In other words you must prove to yourself that you will be able to do it.

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YOUR OWN list of medicines – a must

You personally must keep an eye on exactly which tablets you have to take. The kidney clinic may give you a list of names for your medications, how many of each tablet you should take and when to take them. But that list could change as soon as you get to the pharmacy. A different brand might be cheaper that day, in which case the pharmacist will tell you to change and take that one instead. Of course the staff at the pharmacy know what it says on the prescriptions, but they will not know if the dose has been changed by your doctor, for example. And the kidney clinic might not know for certain which medicines you have been given a prescription for by another doctor.

Conclusion: Only you yourself know exactly which tablets you have to take and exactly which ones you actually do take. So make a list of all your medicines yourself. The list should be written in pencil, because it will change all the time. You can also keep your list on your smartphone if you have one. Take your list to all doctor’s appointments, and only alter the list when your doctor says to.

If the pharmacy wants to replace the medication you have on your prescription for another brand, always ask what the price difference is. It could be anything from one krona upwards. You may then choose to pay the difference and get the exact medicine your doctor has written on the prescription. Or accept the replacement. You decide.

 

Find your own reliable system

For some kidney patients, it is no problem at all to keep an eye on all their tablets and take the right number of the right tablets at exactly the right time every day – and they never miss a tablet. But these people are the exceptions.

For the rest of us it’s not as easy. We miss or forget and other things get in the way. But now that you are aiming for a kidney transplant, you need to think up one or more tricks to make it hard for you to forget your tablets. And these tricks must always be put into a system that perfectly matches your character, your mood and the life you lead. The system must then be practised and drilled in, and become such an unshakable habit that your body and soul feel completely empty if you ever miss a tablet.

Storage: All medicines must be stored in a cool, dry place out of reach of small children. But at the same time they should be ‘eye-catchingly’ difficult to avoid by being in a place – in a cabinet, a drawer or on a shelf – where you always look. Next to the coffee cup you always take out of the kitchen cabinet, perhaps? In a drawer you always open? In the bathroom cabinet? Next to the radio you always turn on? Make it hard for yourself to forget to take your tablets.

Dosette boxes: Pharmacies sell different sizes of dosette boxes, also known as tablet boxes. They are plastic boxes with small compartments that can be filled with all the tablets you need to take at different times of the day for a whole week. With a dosette box you only have to think once a week about the right number of the right tablets at the right time of day. The dosette box also shows you immediately if you have forgotten a dose, because you will see the tablets still there and not taken.

Times: The most common times for taking tablets are morning and evening. To make sure we don’t forget, ideally we take our tablets with something else we also do regularly morning and evening (such as wash, eat, brush our teeth or another habit that is specific to you). Some tablets have to be taken with a meal, while others must not be taken with a meal. All in all, for some of us it means taking tablets several times a day and it can get quite complicated. If it is complicated for you, it may be handy to set up a small daily timetable with all the tablets and times, which you then keep with your tablets (or put on the wall).

Remember: There are many different ways of reminding yourself about your tablets. For instance: the classic ‘knot in a handkerchief’ as a reminder that you have something to do. You could ask a relative, friend or colleague to remind you. You could set your alarm clock, mobile phone or computer to ring at the right times. You could agree with a co-patient, who also has to take their medicine, to phone each other. There are even apps for smartphones to remind you.

You can also find and program your own mind with various ‘take tablets signals’, such as your alarm clock, the morning news on the radio, the theme tune of a daily TV programme, just before you take the dog out, when you brush your teeth and so on. Find your own reliable ‘remember signals’. If you use a dosette box, keep it in a highly visible place on or next to the table and place where you always sit. Also talk to others about how they remember, what kinds of tricks they have come up with to remember their tablets.

Talk, think, devise and do
Talk to your family and close friend(s) and devise your own system for taking your tablets even better and more reliably than before.

Please take a piece of paper and note down your ideas and tricks for always remembering to take your medicines.

 

Enough knowledge – for you

How much do we as patients need to know – really? Some of us want to know EVERYTHING down to the finest detail, others prefer to know nothing, while most of us come somewhere in between.

The most important thing is that you know what you have to DO – and perhaps even more importantly you know exactly what YOU in particular have to do, every day in taking care of yourself. After all, that’s your job and your responsibility.

Example: it’s perfectly possible to drive safely without knowing exactly how the engine works. It’s also perfectly possible to take all your tablets properly without knowing exactly how the medicine works.

As patients we have turned to proper specialists in medicines, i.e. doctors, who have devoted many years of their lives to learning all about medicines and who also have extensive experience. Our partnership with our doctors is also based on us having and demonstrating great trust in each other. This means for example that we assume that the medicines prescribed by the doctor are exactly the ones we need. The most natural and obvious things for you to do are therefore:

  • To rely on your doctor
  • To ask about anything you are in any doubt about, and then:
  • JUST TAKE YOUR TABLETS
  • Then tell your doctor how it feels

You may like to discuss the risks of side effects of your medication with your doctor. You may also choose NOT to think a lot about the possible side effects. The medicine works just as well anyway and you will probably have fewer complaints and problems.

If you WANT to learn more about the medicines, you should of course feel free to do so. How much you want to learn is up to you – as long as you take the tablets.

Enough knowledge to make the right decisions
Exactly the same reasoning applies to all aspects of your self-care. You do not need to know all the risks associated with smoking – you just need to stop smoking, for good. It’s perfectly possible to eat a healthy diet without being an expert in nutrition. Reducing your intake of salt is something anyone can do, without needing to know exactly why this is good for you.

For anyone who wants it, there is a wealth of information available in leaflets, books and online. Also, many people enjoy greater peace of mind when they know a lot, or even more. It gives them motivation. Others, however, do not share the same interest in all the ‘scientific’ details.

Conclusion: You need enough knowledge for you to be able to carry out your self-care safely and reliably. Feel free to learn more if you want to, but don’t learn less.

DOING IS MORE IMPORTANT THAN KNOWING!

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‘BEFORE’ for the body

Preparing the body

To receive a transplant, your body must be able to cope with having surgery and then living with a transplanted kidney. This is why an in-depth examination of your physical condition is always carried out before a transplant. This examination results in an overall assessment of whether a transplant is possible and appropriate for you.

But before you get this far, you can carry out your own assessment. All of the points on the list below are significant in whether or not a transplant is possible and appropriate. Some points are probably not a problem for you, while you may need to work on others. Some circumstances may also be an obstacle to a transplant.

  • Diabetes: No diabetes is better than having diabetes
  • Blood pressure: Normal blood pressure is best, the higher and lower it is, the worse
  • Body weight: Normal weight is best, overweight and underweight are worse
  • Smoking: Not smoking is best, the more you smoke the worse
  • Cardiovascular: A strong heart is best, the weaker the worse
  • Dialysis: Not being on dialysis is best
  • Time on dialysis: The shorter the better, the longer the worse
  • Age: Lower age is better than higher
  • Dietary habits: Good dietary habits are better than poor ones
  • Prostate: No problems is best, problems worse
  • Sun exposure: Less sun exposure is better than a lot of sun
  • Teeth and gums: Healthy teeth and gums are better than unhealthy ones
  • Alcohol: No or moderate alcohol is best, a lot is worst
  • Drugs: No drugs is best, drug use is an obstacle
  • Other diseases: None is best, the more the worse

What is your own assessment – right now – of your chances of receiving a transplant?

You can read more about each of these points in the following. Once you have read more, take the list and the book to your doctor. Discuss your situation and your opportunities. Agree also on what you should, can or must do to make sure you are ready for a transplant.

 

Slowing the deterioration and feeling better

Once you know that you have chronic kidney disease, it is a good idea to first try to slow the deterioration of your kidneys. This enables you to save what kidney function you do have and reduce or eliminate the problematic symptoms, and you also gain time.

The exact treatment you need is something for you to discuss and agree on with your doctor. Generally speaking, the ‘slowing’ treatment comprises three equally important parts, which are often combined to ensure the best results.

1. Medication: When the kidneys no longer work as they should, different medicines can be used to replace or compensate for the lost functions.
For example: If your kidneys are no longer able to regulate your blood pressure, your blood pressure will rise and you can counter this by taking medication.
If your kidneys are unable to produce urine as they should, your body retains fluid and you can counter this by taking a diuretic.

2. A different diet, essentially a ‘kidney disease diet’. You may be recommended to follow a special diet to alleviate troublesome symptoms, such as nausea and loss of appetite, and to reduce the burden on your kidneys. The diet will contain less protein and more energy than normal. This diet needs to be modified for diabetics.
To follow this kind of special diet, you and your family members/friends will have to learn a great deal, and you will also receive good guidance from a dietitian.

3. A healthy life: The most serious risk associated with reduced kidney function is cardiovascular disease, such as a stroke or heart attack. To reduce this risk, you need to lead a healthy lifestyle and focus on your health. Daily physical exercise strengthens the heart and blood vessels, muscles and bones. Smoking – and likewise abuse of alcohol, pills and drugs – lessens your chances of slowing your kidney disease.

The treatment for many of the problems caused by reduced kidney function is a combination of measures in the three areas. Elevated blood pressure can for example be countered 1. By medication in combination with 2. Reducing the amount of salt in what you eat and 3. Doing regular physical activity.

 

Slowing before a transplant

Slowing your illness helps you feel better, you can eat more and better, which means you have the energy to exercise better. There is less strain on the functioning parts of your kidneys, the deterioration is slower which means you gain time, and you are in better shape ahead of a desired transplant.

 

With or without diabetes

Having ONE chronic illness is not good, having TWO chronic illnesses at the same time is worse. That goes without saying. This means that if we have diabetes and then – as a complication of diabetes – we also get kidney disease, we are in a worse situation than if we ‘only’ have kidney disease. Furthermore, diabetes can cause other complications (in the eyes, nerve paths, heart and blood vessels).

With both diabetes and kidney disease, medication becomes more complicated. Furthermore, the ‘kidney disease diet’ with less protein and more energy from fats and carbohydrates is, if anything, the opposite of the diet normally recommended for diabetics. It is, however, still possible to adapt your diet and reduce your protein intake without it having a negative impact on your blood sugar and blood lipids. Having both illnesses also increases the risk of cardiovascular diseases.

Diabetes without kidney disease
Diabetes is one of the most common causes of kidney disease (and is becoming increasingly common). Around one-third of people with diabetes also develop kidney disease. But this also means that two out of three diabetics DON’T get kidney disease. This must mean that for ‘most’ people it is possible to have diabetes AND avoid kidney disease. This is also the vision zero or goal for diabetic care: that the treatment is or should become so effective that no diabetic need suffer serious damage to their kidneys.

However, for the diabetics reading this, it was obviously not possible to prevent kidney damage.

Even more important
As usual in life we have to make the best of the situation we’re in. As a diabetic with kidney disease it is EVEN MORE IMPORTANT both before and after any transplant to:

  • Deal with our medication perfectly.
  • Keep our blood sugar down by being extra careful about what, when and how much we eat and drink. The lower your HbA1c value, the better.
  • Keep our blood pressure down, ideally at 130/80 or lower, through medication, less salt in our food and physical exercise.
  • Keep the cholesterol in our blood down through medication and a healthy diet.
  • Keep our weight normal or lose weight if we are overweight.
  • Not use tobacco.

These points are important for anyone considering a transplant. They are EVEN MORE IMPORTANT for people who also have diabetes.

 

Keep blood pressure down

Blood pressure and kidney disease are linked. High blood pressure is one of the most common causes of kidney disease. And kidney disease almost always results in elevated blood pressure. The kidneys normally help to regulate blood pressure. When the kidneys’ functions are reduced, they lose this ability.

Blood pressure and transplantation
There are many good reasons for keeping your blood pressure constantly under control – and reducing it if it has become too high. This is particularly true if you have plans to eventually have a chance to receive a ‘new’ kidney through transplantation. A too high blood pressure can reduce the chance of receiving a ‘new’ kidney through transplantation. A transplant recipient with too high blood pressure risks reducing both the kidney’s function and the life span of the transplanted organ.

For many people, the most important preparation for a possible transplantation is to keep their blood pressure as normal as possible. This is not that simple, and the worse the kidneys are functioning, the harder it is. Simplest of all would be if the blood pressure could be kept normal using one or more medications, but it’s not that simple. Far from all, perhaps only one in three people who try, manage to achieve a normal blood pressure with medication.

Most of us must therefore also take other measures to achieve this. The very best thing is to actually begin with the ‘other’ measures – they are all free of charge, they have many other positive health effects too and have few or no side effects. What’s more, they are carried out completely by you. Here are some ways you can reduce your blood pressure:

  • Regular physical activity exercises the heart, blood vessels and muscles.
  • Weight loss (if you are overweight).
  • Stop smoking if you smoke.
  • Reduce your intake of salt. Never add extra salt.
  • No or a very moderate intake of alcohol.
  • Reduce stress. Learn to relax. Sleep well.
  • Take blood pressure medication, just as the doctor prescribed.

Make friends with your blood pressure
Blood pressure is nothing mysterious. It’s there all the time, every second of the day, in your entire body. It changes all the time, up and down, depending on what you’re doing and on how calm or agitated you are.

Therefore: Buy or borrow a blood pressure gauge, they’re not as expensive as you might think. Check your blood pressure as often as you like. Make your blood pressure your ‘low friend’. If your friend gets ‘too high’ it reduces your chances of receiving a ‘new’ kidney.

 

A heavy disadvantage

Being severely overweight reduces your chances of receiving a transplant. Being overweight in itself also increases the risk of other illnesses and, therefore, also increases the overall burden on the body. Excessive body weight also makes the operation itself more difficult, and thereby increases the risk of complications.

Conclusion: If you want a ‘new’ kidney you should not be too overweight. Being moderately overweight is not a problem, it could even be quite a good thing when you have kidney disease. It is when your overweight is severe that problems arise (= with BMI more than 30).

Almost half of all healthy Swedes are overweight, and among those with diabetes and kidney disease severe excess body weight is very common.  But this does NOT mean you should give up and abandon your plans for a ‘new’ kidney. It just means it will be harder to reach your goal – but not impossible.

Really not easy – but a strong reason
Losing a few (or many) excess kilos, which may have been hanging around your stomach, backside and thighs for many years, is not easy. Anyone who has tried to lose weight knows this. If we lose a kilo, it’s usually in the wrong place. If we then lose concentration even for a while, the kilos return – and one or two more are added if we’re unlucky.

There are many good reasons not to be overweight. Perhaps you want to feel better about your body, have more energy, fit into your existing clothes or new clothes, or relieve your diabetes. If you are reading this and are severely overweight there is another good reason – lower body weight increases your chances, in fact it’s virtually a prerequisite, for getting a ‘new’ kidney.

Absolutely worth a serious attempt
The most radical way of losing weight is through surgical intervention, such as gastric banding or stomach stapling. These are major, and often effective, procedures which therefore also entail risks of complications and side effects – risks that may be deemed too high for people with kidney disease (and diabetes).

Otherwise the sad truth is that if we want to lose weight, we must expend more energy than the energy we consume. Diabetics should in any case follow a diet with a limited amount of energy from carbohydrates. On the other hand, conventional medication for diabetics causes an increase in weight.

It may be a good idea to have a modest goal and treat each lost kilo as a success – for you and for your future.

WEIGHT
HEIGHT X HEIGHT = BMI

75 KG
1.80 M X 1.80 M = 23.15

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Smoking increases all risks

Here comes the same old advice: stop smoking. Smoking is one of the root causes of kidney disease. Smoking makes kidney disease worse and quickens the onset of the disease. Smoking increases the risk of complications in every stage of kidney disease.

If you are aiming for the chance of having a kidney transplant, smoking is not an option. The risk of complications linked to the operation itself are significant. After the transplant, smoking is still as big a risk factor as before, both for new kidney disease and other illnesses.

Conclusion: If you smoke and want to have the chance of a transplant, the best thing you can do for yourself is to stop smoking now and never start again.

One suggestion being discussed is that hospitals should or must set a REQUIREMENT that people who need surgery MUST stop smoking in plenty of time before an operation. This is how serious the extra risk caused by smoking is considered to be. But this requirement really shouldn’t be necessary. Surely no person chooses to CONSCIOUSLY increase the risks during and after surgery by smoking? And certainly not you… right?

Relatively easy – or hard
For quite a lot of people, stopping smoking isn’t really that hard. As long as you have a good enough reason to stop – such as the chance of receiving an organ transplant. There are many other habits that are also difficult to quit – such as coffee. It’s probably harder for many people to radically change their eating habits than to stop smoking.

For others, it’s extremely hard to stop smoking. The craving and sense of loss after the calming and stimulating effects of nicotine can be a very difficult experience. When you smoke a cigarette you get an immediate effect, one that can be felt throughout the entire body.    You can feel your blood vessels contract and tingle. After all, that’s the ‘reward’ for smoking – and it’s exactly that tingling and that contraction of the small blood vessels that are so harmful to those of us with kidney disease.

The craving continues for a long or very long time after you’ve stopped. That’s what makes it so incredibly easy to start again. And you mustn’t. Because once you’ve stopped smoking and then managed to get a transplant, it’s very unwise indeed to start again and risk damaging your ‘new’ kidney.

Set about it how you like
There’s no ‘single best method’ for stopping smoking; any method that results in a person not smoking any more is equally valid. So do whatever you like. Get the help you need from relatives, friends, healthcare staff, medication – it doesn’t matter HOW you stop, the only important thing is that you DO stop. For your own sake.

Life before and after a desired transplant is tobacco free.

MARK TWAIN:
“QUITTING SMOKING IS EASY, I’VE DONE IT A THOUSAND TIMES.”

 

Trim heart, blood vessels and muscles

Kidney disease also has an influence on our heart and blood vessels. This happens as the kidney disease develops, and it has partly the same causes. One such influence is ‘atherosclerosis’ or hardening of the arteries, which is when deposits stick to the inner walls of the blood vessels, making them narrower.

In preparation for a desired and possible future transplant, the health of the heart and blood vessels is therefore studied very carefully. To cope with the strains of surgery, both the heart and blood vessels must be in good shape. If and when you subsequently receive an organ transplant, a ‘good heart’ is just as important. A ‘bad heart’ could, therefore, easily be a direct obstacle to surgery and to your plan for a ‘new’ kidney.

Exercise your heart, muscles and joints
The heart is a wonderful bundle of muscles, a pump that works all our lives, a human engine that never stops and which feels and functions at its best when it’s kept healthy. A heart that is allowed to ‘tick over’ and run at ‘low revs’ too much and for too long will not be healthy, and will not be able to cope with much extra strain when required.

The best thing we can do is, therefore, obviously to keep our body and heart going, regularly, ideally every day. Little and often is better than sporadic, strenuous exercise. Obviously you should adapt your physical exercise to your personal circumstances – and these can of course vary greatly. If you have not done much exercise before – and especially if you have heart problems – consult your doctor before taking it up. A physiotherapist or a physical trainer may be able to help you set up a good personal training programme.

The standard recommendation is physical activity for 30-60 minutes, ideally every day but at least three times a week. The most important thing is to raise your temperature and pulse so that it is ‘slightly strenuous’, but not necessarily so tough that you are completely out of breath – you should still be able to chat to someone. Brisk walks and pole walking are good examples.

Build up your muscles and joints
Kidney disease usually makes all the body’s muscles weaker. The illness causes loss of muscle tissue, and to counter this we need to do weight training. This doesn’t mean you have to go to the gym and ‘pump iron’; you can exercise your muscles in many ways to build them up, even in your day-to-day life. A physiotherapist can also help put together a programme suited specifically to you.

The kidneys – close to our hearts
Kidney disease affects the heart – and the heart affects the kidneys. A desired ‘new’ kidney is therefore close to our hearts in more ways than one.

 

Early transplantation

The best outcome is usually when a transplantation can be carried out BEFORE your own kidney function has completely run out. Provided we have a little of our own kidney function left, we are in a better health situation than later on, when our function is even lower or gone altogether. We are quite simply a healthier recipient of a ‘new’ kidney, which means the healing process goes more smoothly and the risk of complications is lower.

This is important both when the ‘new’ kidney comes from a living donor and when it comes from a deceased donor.

 

On dialysis as short a time as possible

How well a transplanted kidney integrates and works satisfactorily depends in part on how long we have been on dialysis. Ideally we should receive a transplant at such an early stage that we DON’T need to go on dialysis AT ALL.

The shorter the time on dialysis, the better the conditions for the ‘new’ kidney to work well and for a long time.

 

Health more important than age

How old we are is not in itself decisive in whether or not we can receive a transplant. In principle, there is no absolute age limit.

But with increasing age we become more frail, and the risk of other illnesses increases. Increasing age combined with rising poor health may therefore mean that a transplant is deemed less appropriate or not appropriate at all.

In other words, what is important is that we are in reasonably good health generally and that we are in good shape.

 

Very different diets

Appropriate food and drink are always an important part of the treatment of chronic kidney disease. The diet changes several times and quite radically during the journey.

  • When we want to slow the disease, we should eat less protein and more energy from carbohydrates and fat.
  • When we go on dialysis we should eat almost exactly the opposite. The dialysis means we need more protein. People who are overweight need to be careful about the amount of energy they take in, to make sure they don’t put on too much weight. People who are underweight need more energy.
  • As a transplant recipient with our own kidney function, we should eat a healthy, balanced diet in moderation to stop ourselves putting on weight.

This means you may need to change your eating habits several times. This is not the easiest thing to do, but well worth the effort – and you can get good support both from your dietitian and your family and close friends.

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Free flowing

An enlarged prostate is common among older men, which means for some that the ureter is more or less pressed together. This in turn makes it harder to urinate. It is very important that urine can pass from the kidneys to the bladder and then out, freely and without hindrance. It must not be too slow or blocked. If you have this problem, talk to your doctor. The problem can be remedied by different methods and should be resolved in plenty of time BEFORE a potential future transplant.

However, if your kidneys are not producing any urine at all, it is better to operate on the prostate after the transplant.

With age there is also an increased risk of cancer in the prostate. Many men therefore choose to be tested for prostate cancer regularly (with a simple blood test) in order to discover any change as early as possible.

 

Reduce sun exposure – starting now

After a transplant, when the immune system has to be suppressed, there is an increased risk of various kinds of tumours. The most serious risks relate to skin changes and, therefore, also skin cancer, which is affected by the sun’s rays. After a transplant you must therefore be extremely careful about exposing yourself to sunlight (more on this later).

But the total, collective amount of sunlight over the years is also important. It is therefore a very good idea NOT to sunbathe (as much) and to always use effective sun block long before any transplantation. That way you can prevent and reduce the risk of skin cancer after a transplantation.

 

Teeth and gums

For a transplanted kidney to be accepted by the body and remain, the body’s own defences against ‘intruders’ must be inhibited. We do this with medication. But this also means that the body is more susceptible to infections, particularly in the beginning. In preparation for a transplant, we must therefore tackle any existing infections or risks of infection. One such risk area is the mouth, which is always and perfectly normally full of different kinds of microorganisms.

Looking after your teeth and gums well is the foundation for ‘oral health’. Regularly seeing a dentist or hygienist and having any problems dealt with is always wise and, of course, even more so before an imminent transplant.

 

Best to be careful with alcohol

Not drinking any alcohol is safest. Alcohol in moderate amounts is not harmful to the kidneys and does not affect kidney function, either negatively or positively. And ‘moderate’ usually means the equivalent of one or two 150 ml glasses of wine a day (less for woman than for men), and not every day.

Before surgery – a long time, around one month before – we should abstain from alcohol altogether.

 

Other illnesses as well

Having other illnesses at the same time as kidney disease makes the situation more complicated. In some cases a transplant can still be carried out, but other illnesses can also be a direct obstacle to a transplant – for example if you have or have relatively recently had a cancer illness.

 

Necessary investigations

If there are no clear medical or other absolute obstacles to a transplant, the next step is that you must be thoroughly physically examined. This means you must undergo a series of examinations, all of which aim to ensure, as far as possible, that you can cope with surgery and a transplant. Exactly which examinations are necessary may vary from person to person. Your doctors will decide which examinations you need to undergo.

In order to keep better informed and understand what’s happening, you can ask for a list of the examinations you will undergo. You can then tick off yourself which examinations you have done and which ones remain. This also enables you to make sure the examinations are conducted within a reasonable time frame, which is primarily in your interest.

Examination of living donor
A person who is willing to donate one of their kidneys must also be ‘investigated’ to make sure a donation is medically possible and appropriate. This means the person must undergo a series of examinations. A list of exactly which examinations your particular donor needs to undergo is useful to have, for the same reasons as for yourself.

All these investigations involve many different clinics, departments and people, all with their own time frames and resources. At best, your own personal involvement in this process can help the investigations move along without (too many) delays.

 

Action plan for preparing yourself

After reading these last few pages you may now choose to think again about your chances of receiving a transplant. Perhaps your opinion has changed? You can then bring this book and your questions to your next doctor’s appointment. Together you can discuss and agree on what you can, should and must do to make sure you are ready for a transplant.

 

Ready, prepared, approved

The question as to whether we have prepared ourselves and are ready for a transplant is always a matter of weighing up different factors and assessments. It is rarely simple or clear-cut. After all we are chronically ill, and the more severe our kidney disease, the more other complaints we may also have suffered from or not been able to avoid.

Both for ourselves and for the doctors, it is therefore ultimately a question of balance between the benefits and drawbacks, between the improved health and quality of life we can achieve with a transplant and the risks a transplant may entail.

Everything can be summarised into four questions, two for the soul and two for the body:

  • Have you acquired sufficient knowledge and insight to receive and live with a transplanted kidney? Yes or no.
  • Have you demonstrated to yourself and your doctors that you will be able to look after yourself well and take all tablets as you should? Yes or no.
  • Is your physical health good enough to cope with undergoing surgery and receiving an organ transplant? Yes or no.
  • Are the risks associated with a transplant acceptable? Yes or no.

If the answer to these four questions is ‘Yes’, then you are ready and approved for a transplant.

No transplant without a donor
One ‘half’ of a transplantation entails us, as recipients, preparing ourselves as well as we can. The other ‘half’ obviously means that there must also be a donated kidney to transplant.

The following pages are therefore about the two options that are available.

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DIFFERENT DONORS

ONE healthy kidney is enough

All healthy people have two kidneys. They usually have a large capacity, more than is actually needed. Kidney problems are, therefore, usually discovered very late, when more than half the kidney function has been lost. This is also why people can cope fine with ONE healthy kidney.

Living Donor – As ONE healthy kidney is enough, a healthy person can donate a kidney to someone who needs a ‘new’ kidney. Two healthy kidneys are enough for two people – one each.

Deceased Donor – A person who has just died may have two healthy kidneys to donate to fellow humans who need a kidney. The procedures in such cases are different, but the principle is the same: one healthy kidney is moved from one individual to another and continues to function as normal.

 

Kidney from a living donor

It is possible to transplant a kidney from a living donor if a suitable donor WISHES TO and CAN. The voluntary will comes first. There can then be an investigation into whether a donation is medically feasible and appropriate.

The will
The dream for all people with kidney disease who need and would like a ‘new’ kidney is that someone offers to donate one of their kidneys spontaneously and of their own free will. For many, this is exactly what happens. One or more relatives or friends declare that they would consider donating a kidney. Around one third of all kidney transplants in Sweden come from living donors.

The majority of all adults answer YES when asked if they would ACCEPT a ‘new’ kidney – should the situation arise. The majority of those asked are also positive in principle to the opportunity of DONATING a kidney, both during their life and after their death.

The fact that it is even possible to move an organ from one individual to another – and that it works – is quite amazing. It is equally humanly amazing that a person can give a close relative or friend the chance of a new, healthier life by giving one of their own healthy kidneys. This is surely one of the biggest things someone can do for another person. Nearly everyone who has donated one of their kidneys to a relative or friend also says that they would do it again if it were possible.

So there are good reasons to be a kidney donor. However, there are also plenty of good reasons to reflect and hesitate.

Surgery is never risk free. Undergoing surgery always entails a stay in hospital and several weeks of sick leave. Some pain and a lot of tiredness after the operation are to be expected. It is perfectly legitimate to wonder why you would subject yourself to an operation when it is not necessary for your own health. All these reasons and many more besides are very understandable and absolutely nothing to feel ashamed or guilty about. Everyone has the right to decide about their own body and their own kidneys. If someone doesn’t want to donate a kidney, they don’t want to and that’s it. If they don’t have the courage, they don’t have the courage. Everyone must have full respect and understanding for this.

Deciding to donate one of your kidneys to someone else is not a decision to be taken lightly. The joy and pride of being able to donate a kidney to a relative or close friend must be offset against the risks and what you feel deep inside. This balance – should I, shouldn’t I? – should certainly be discussed in detail within your family, close friends and obviously also the doctor in charge.

When no donar is forthcoming
It is not uncommon that no relative or close friend raises the issue of donating a kidney. It is a major step for anyone to get in touch and offer to be a kidney donor. As a result, it’s not the slightest bit unusual for many people to have strong doubts about the idea. Taking the initiative is not easy: if you say A perhaps you have to say B, and you don’t really know what B entails.

At the same time the person with kidney disease feels bad, both from the disease and the treatment and due to uncertainty about the future.

It may feel difficult for many people with kidney disease to (dare to) ask the question themselves. There is a risk that the person who is asked says YES without really wanting to – an unpleasant thought for anyone with kidney disease. It could be equally unpleasant to get a NO – and for the person who is asked to answer no. Many people with kidney disease therefore stay silent, do not take the initiative and the question is never brought up.

Instead the question is left hanging and the possibility of a kidney donation is ever present, whether or not it is expressed. Sharing this part of the book (or all of the book) with your family and close friends could therefore be one way of starting an open, clarifying discussion about the benefits and drawbacks of the various treatment options available.

Questions about the treatment and the possibility of a transplant are obviously something for the person with kidney disease to discuss with their kidney doctor. One question is whether any relative or friend might consider becoming a kidney donor. Perhaps someone has already been asked, perhaps not. During the conversation, the patient and doctor agree on how to proceed.

Wanting to is not enough
Being willing to donate a kidney does NOT automatically mean that a person becomes a donor. Being willing is of course essential, but the intended donor must be completely healthy and medically suitable too. And this has to be investigated. A first stage might be one or more talks with everyone concerned and with kidney and transplant doctors, individually or all at the same time.

Nowadays more people can be donors
Healthy parents, siblings and adult children often make suitable kidney donors. However, research and development have now made it possible for a far wider circle of people to become kidney donors, such as other relatives, spouses, partners, close friends and even complete strangers. In other words, being close family is nothing like as crucial as it used to be.

Both willing and suitable
In order to find out whether a person who is WILLING to donate one of their kidneys is also medically SUITABLE, a series of different examinations have to be carried out. Any prospective donor must be healthy, not have or be in the risk zone for (serious) illnesses, and the function of both kidneys must of course be faultless.

The result of the investigation is that the person is deemed either suitable or not suitable as a donor. If they are ‘not suitable’, the investigation ends there. If the person is ‘suitable’ and there are no other obstacles, the person can be accepted as a donor and can proceed by discussing and arranging a time for the operations.

Financial compensation
The principle is that a living donor should be compensated for all their direct costs (such as travel, loss of income, being off sick and so on). Detailed information about how the compensation is calculated and how and when it is paid is usually given to the donor by the welfare officer at the clinic.

No further financial or other compensation for the donation is permitted under Swedish law.

 

Kidney from a Deceased Donor

The other option for a transplant is with a kidney from a just deceased donor. The prerequisites are similar, i.e. that it is known or assumed that the person would WANT to donate a kidney after their death, and that the person and the kidney are deemed medically SUITABLE for donation.

The will
Most people know that kidneys and several other organs can be transplanted from one individual to another under certain conditions – also immediately after the person has died. A kidney can, for example, continue to function satisfactorily for up to 24 hours after someone is declared dead – provided the oxygen supply is maintained with a respirator.

Surveys have shown that four out of five Swedes are positive about donating one or more of their organs to people in need after their death. People can and should talk about their wish to donate organs after their death by:

  • Talking about their attitude to organ donation with their closest relatives
  • Signing and carrying a donor card
  • Registering on the Swedish National Board of Health and Welfare’s donation register

Far from everyone has thought this through and used one of these opportunities to say what they think. Everyone should do so.

The most important thing is to talk to relatives about donating one or more organs after death. That person then knows that their wishes will be granted, that their wish to donate will be respected by everyone. The relatives know too and do not have to decide on the matter themselves. By knowing the person’s wishes, the relatives can also prepare for the question of organ donation arising. Family or close friends expect the issue of organ donation to come from healthcare staff – and might be puzzled or disappointed if the question is never asked. They may also choose to tell the care staff themselves what they know about the deceased person’s wish to donate.

When the responsible doctor (primarily in intensive care) deems that a donation may be possible, they check if the potential donor has expressed a wish according to one of the three ways. Relatives are always contacted and may – if the potential donor’s wishes are not known – decide in their place. Only with the relatives’ consent can preparations for a donation begin.

Suitability
To establish whether a kidney donation is possible and suitable, the donor’s health and the quality of the kidneys are checked – in every way possible. Samples are taken and information about any illnesses is collected.

The best case scenario for a successful transplant is when the deceased donor has been in full health (aside from the cause of death); has not had or does not have any illnesses that could be transferred to the recipient and has had excellent kidney function. Kidneys in younger donors are usually, of course, less worn than those in older donors.

Waiting list
When there is no living donor, the person with kidney disease has to wait as there are far more people needing a ‘new’ kidney than there are available kidneys from deceased donors. Kidney patients who have undergone all the examinations and are then accepted as suitable for a transplant are, therefore, put on a waiting list. Health status, blood group, occurrence of antibodies and a lot of other details are collected for all patients on the waiting list.

Choice of recipient
When a kidney from a deceased donor becomes available, the results of samples and tests on the donor are compared with the equivalent test results of the patients on the waiting list. The patient with the very best compatibility in the tests with the deceased donor is usually chosen as the recipient. The better the compatibility, the better the conditions for the outcome of the transplant being as good as possible.

The time the kidney patient has spent on the waiting list is also a factor, but blood group, tissue type and compatibility are even more important. Of course everyone wishes for a good result and no recipient is given a ‘new’ kidney that is not suitable. Some patients on the waiting list may therefore have a long time to wait.

 

Kidney from a Living or Deceased Donor – A comparison

 Tabell

Benefits and drawbacks of a transplant

For the patient

+
Own kidney function again Improved health, more consistent
Physically stronger, more energy
Eat and drink normally again
Return to work, normal life
Freedom to travel, not tied down
Often fewer medicines
After the initial months, increasingintervals between appointments
Renewed love life Better chance of having children

Surgery, risk of complications
Risk of rejection
Immunosuppressive medication
Side effects of medications
More susceptible to infections
Some increased risk of diabetes
Some increased risk of cancer, particularly skin cancer
Risk that the transplant is unsuccessful

 

For Living Donors

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Giving a close relative or friend the chance of a new life
The pleasure and pride of donating
One of the biggest things you can do for someone else
A genuinely humanitarian act

Health checks for the rest of your life
Surgery is not risk free
Pain, discomfort, tiredness for a while after surgery
Disappointment if the transplant does not go well
One kidney, none ‘in reserve’
Sick leave, off work

 

 

For Deceased Donors

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Giving someone in need the chance of a new life

No drawbacks

 

For family and close friends of Deceased Donors

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Some meaning and comfort in a difficult situation

Making a decision when the donor’s wishes are unknown

 

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THE OPERATION ITSELF

A kidney from the next room

 

Living Donor
When both the donor and the recipient are ready and have been ‘approved’, a date is chosen for surgery, one that is convenient for everyone involved. The donor’s wishes regarding time is a major consideration because the donor will have to be written off sick after surgery. It is an advantage if the surgery is performed as soon as technically possible, and while all the samples and test results are still valid. If it takes too long, some samples and examinations may have to be redone.

The day before surgery
Both the recipient and the donor are admitted into the transplant clinic one or two days before the planned operation, or to be more precise the operations – there are two operations to be performed, one on the donor and one on the recipient. Some supplementary samples may need to be taken as part of the final preparations for ‘T-day’ (as in T for Transplant). The recipient starts to take their new medicines.

T-day
Two surgical teams in two adjacent operating theatres stand ready to carry out the two operations. The recipient and the donor can say “Hi” to each other, “See you when we come round”. First the donor and then the recipient are taken into their separate operating theatres.

The donor’s operation is now almost always carried out as keyhole surgery, which is gentler than open surgery. After keyhole surgery the donor will have a few small scars on their stomach, and one scar large enough for a kidney to pass through. With open surgery there is one scar, which is far longer and goes from the stomach to the side where the kidney is.

While the donor is in surgery, the recipient is prepared to receive the donated kidney. The kidney will be put down to the right or left below the skin and muscles on the recipient’s stomach, about a handbreadth above the groin. The recipient’s own kidneys will be left where they are, they are not of any direct use any more, but nor do they do any harm. But there are also exceptions where, for medical reasons, the recipient’s own kidneys have to be removed.

When the donor’s kidney has been surgically removed, it is taken to the recipient’s operating theatre. As the rooms are next to each other and the operations are simultaneous, the kidney will generally be ‘out in the open’ without a blood supply for only a very short time.

The donated kidney’s blood vessels (arteries and veins) are then connected to the recipient’s main blood vessels. The ureter is then connected to the bladder. The kidney resumes its normal work but in a new body, and it starts to function and produce urine already on the operating table. 

Waking up to a new reality
The operations take a few hours. Once the operations are over, it takes quite a while for both the donor and recipient to come round after the anaesthetic.

It is normal to feel a bit dizzy, thirsty and nauseous for a while just after an operation. Both the donor and the recipient also feel extremely tired, which is not the least bit surprising. Going through this kind of operation puts quite a strain on the body.

It is inevitable that the areas operated on throb and hurt, but this is readily relieved by painkillers.

After a few hours both the donor and the recipient are wheeled back onto the ward.

Hardest for the donor
The donor’s operation is more comprehensive, more complicated and sometimes takes longer than the recipient’s. The donor therefore has the hardest operation, which also explains why it takes quite a long time for the donor to fully recover their energy after their stay in hospital. The tiredness can last a long time, and donors therefore usually need to be off sick for 6-8 weeks after surgery, depending on their job and how much difficulty the donor has.

Life and health after donating
After their recovery, the donor resumes a healthy life with one kidney and continued good kidney function. Just as before the transplantation, a healthy life lays the best foundation for continued good health also in the long term.

Regular health checks, the first after one year, are important for all donors. They bring peace of mind that there are no health problems, or that any problems that should arise are discovered as soon as possible.

The strain on the donor from the operation and recovery is offset emotionally by the joy and satisfaction over the recipient’s new, improved life after the transplantation. But if the transplantation is not successful, if for some reason the kidney cannot be made to work in the recipient, that good feeling could turn into great disappointment for everyone. The risk is not high, but it does exist.

Successful outcome
A successful outcome can never be guaranteed. Despite the best possible preparations and the best possible care, unknown factors and unexpected events can cause problems. However, the risk that not everything goes as planned is less important than the chance of a healthier life with a transplant.

Nowadays the vast majority of transplantations go well, and the outcome is that both the donor and the recipient have their own good kidney function – for a long time.

 

Always prepared for surgery 

Life on the waiting list
Being accepted as suitable and, therefore, being put on the waiting list for a transplant from a deceased donor is an extremely positive experience for us kidney patients. An important step on the way to our goal. We are filled with the anticipation of a better life in a near, improved future. We gain new energy and new determination. We WILL manage and everything will be great.

However, life on the waiting list can be very frustrating. The complete uncertainty about WHEEEEN and HOW can really get on your nerves. Imagine if ‘they’ phone tonight! Imagine if they never phone! The soul swings between hope and despair.

The fact that we are (finally) on the list may feel like we’ve won the jackpot in the ‘health lottery’. But actually no one can say when the draw is or what the prize will be, if there even is one. After all, not all tickets are winning tickets.

Like the world’s best scouts, we must always be prepared. Every day and every night we must be prepared to get to the hospital as quickly as possible. Otherwise, there is nothing to do but wait – and wait.

“Be prepared”
Unless a potential living donor turns up we can only wait, and in the meantime make the best of the situation, preparing as much and as well as we can. If we get a cold or some other illness we must tell the clinic, because a transplant at that point would be inappropriate.

We must be prepared to bring slippers, comfortable clothes, something to read, glasses, some good crosswords, a toothbrush and everything else we need to keep ourselves in good, clean shape in hospital.

We must always be available by landline and mobile phone, and our mobile phone battery must never run out. If we temporarily leave our mobile for a while, we make sure a relative or friend can answer if it rings. The phones must not be blocked.

Ideally we shouldn’t travel (far), and even better if we live as close to the hospital as possible. Pitching a tent on the lawn outside the transplant clinic might be a bit excessive, but the less time it takes to get to the clinic, the better. The less time the kidney needs to be outside of the body, the better the outcome.

The mental training to think positive, to picture everything turning out for the best, is even more important when we’re on the list waiting. Now is also a good time to be in top shape by training our heart, muscles and bones, by keeping an eye on our blood pressure and weight (and blood sugar if we have diabetes) by living as healthily as we can and keeping ourselves well, eating well and gathering our energy.

Then, when you least expect it, ‘they’ phone and say, “Come in”.

 

Kidney from a Deceased Donor

A kidney from a deceased donor can come from virtually any hospital in Sweden or Scandinavia.

When a kidney from a recently deceased person is deemed possible for donation, the transplant clinic is contacted. If the kidney is then also deemed suitable, the process begins. The kidney is surgically removed, cooled and transported very safely and in the quickest possible way to the transplant clinic.

At the same time all the available data about the donor is compared with the data of those on the waiting list. The person who suits that kidney best is chosen first. If that is you, you will be called to the clinic. If you are ill in any way at the time, surgery may be inappropriate. When you are asked the question on the phone, you must therefore be completely honest. If you are too ill for an operation, someone else on the list can have the donated kidney. If you take a chance and go ahead anyway, the operation may be cancelled and the kidney will go to waste.

Final preparations
When you arrive at the transplant clinic some tests will be done, such as bacteria in the airways, a lung X-ray and possibly other tests as well. You will have to wash your entire body with a bactericidal soap. You will talk to several key personnel at the clinic. Despite all the careful preparations, it could turn out that the operation still cannot be performed for a medical or some other reason. The risk of this happening is small, but it does exist.

Same operation as with a living donor
The donated kidney is inserted just above the groin in the lower abdomen, usually on the right. They never place the ‘new’ kidney where the patient’s own kidneys are. Nor do they generally remove the patient’s own kidneys. They no longer have any function, but nor do they do any harm, so they are nearly always left in place. The exceptions are polycystic kidney disease (where the kidneys may sometimes have to be removed for reasons of space) and kidneys with chronic infections. The blood vessels to and from the ‘new’ kidney are connected to the blood vessels going from the heart down towards the leg and back. The transplanted kidney’s ureter is connected directly to the bladder, which is quite close by. As a memento of the operation, the patient is left with a 15-20 centimetre, slightly diagonal scar on the stomach.

The kidney starts working again
Once the operation is over, the donated kidney is fully integrated into your body. Blood flows into the kidney, is filtered, and flows out again. At best the kidney starts producing urine immediately, perhaps already on the operating-table. In other cases it may take a while, from a few hours or a day to several days. There could be several reasons for this, and it does not mean the kidney will have lower function later on.

Life on the ward
The first few days after surgery are different, exciting and interesting. They can also be difficult, if complications arise. This is when the body has to adjust to accept the donated kidney. This is when the doses of medicine are at their highest.

You are now given completely different medicines compared to the time before surgery. They are medicines to suppress the immune system, combat infections and get the intestines started and working as normal again. You will also be given painkillers if necessary. You shouldn’t be in pain unnecessarily.

For the first few days, one or more thin tubes will be connected to you so that your urine production can be carefully measured. The urine you produce will be collected in a bag which you have to take with you wherever you go. Needles in the arms and throat which were used during surgery are left in, in case they need to be used again. The tubes and needles are removed after a day or so.

Blood samples are taken at least once a day to carefully track your ‘new’ kidney’s ability to clean your blood. Different examinations are carried out to check that everything is working as it should. There is always a risk that the kidney does not work that well and that you could, therefore, feel a little or very unwell.

Up and about, talking and listening
You use the days you spend in hospital to recover from your surgery. It is important to get up and move around as soon as possible after surgery to maintain blood circulation, muscles and joints, to get your stomach and intestines working again, and to attend to your personal hygiene (washing, showering, brushing your teeth and going to the toilet). You will be given advice on the easiest way to get out of bed with the minimum of pain and discomfort.

An excellent learning opportunity
You should use your time on the ward to learn even more about your new life with your own kidney again. Do this by asking, listening, talking and discussing things with staff and fellow patients. There’s no need to be shy; all your fellow patients have exactly the same need as you to talk and understand. Every mealtime or coffee break in the canteen can give you knowledge for life. At some clinics, the staff also organise ‘chat sessions’ with information and discussions about important issues, and all recent transplant patients are welcome. There may also be educational computer programs.

‘Rounds’ and one-to-one talks
One or more doctors and nurses usually go round the ward every day and talk with and about all the patients. These are known as rounds. This is an opportunity to ask any questions you may have. If it feels difficult or embarrassing to talk about personal matters when so many staff and fellow patients are listening, you can ask for a one-to-one talk with the doctor or nurse in charge. This is your right.

 

Checklist before going home

The days at the transplant clinic go quickly. Once everything is working well, it is soon time to go home. But before you leave the clinic, there are several important things you must arrange and find out.

Prescriptions for medicines. The doctor in charge will write out a prescription for the medicines you must take – or send the prescription directly to the pharmacy digitally. Whichever method is chosen, it is a good idea if you also get a complete, accurate list of your medications.

It is a great advantage if you can go to the pharmacy at the hospital and collect your medicines BEFORE you leave the clinic. Ideally you will be given exactly the medicines the doctor has specified on the prescriptions and on your medication list. If the pharmacy wants to change to a cheaper brand, you should ask what the difference in price is and – if it is possible for you – if you can pay the difference. That way you know for sure that you have been given and are taking the right medicine.

Your own accurate medication list. Make up or fill in the list yourself AFTER you have been to the pharmacy.

Wound care. You must be given information and instructions on how to look after your operation wound. For example, whether and how you change dressing (if necessary), how to wash yourself and whether you can shower or bath, what to do if the wound weeps and so on. 

Infections. During the first months you are most susceptible to various kinds of infection. And in the beginning, infections are very unwelcome indeed. You must be given information on the best way to avoid infections before you go home.

Rejection. You must be given information on the first signs of rejection – and what to do.

Phone numbers. Make sure you have exactly the right phone numbers to call if you are feeling unwell – both daytime and at night. Make a note of these numbers.

A lot of travelling at first. In the first few weeks you have to take samples and see a doctor several times a week. It is therefore important to sort out WHERE the samples can be taken, and HOW you will get there and to the hospital, and other practicalities.

Further information. You will also be given information about blood pressure, blood sugar, side effects, diet and sun protection, for example – see the following pages.

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‘AFTER’ FOR THE BODY

 

Life with a kidney transplant

It is the ‘whole’ in life that is most important of all. For the whole body to function well, many parts need to function well. One of these parts is kidney function. By having your own kidney again and your own kidney function back, you have a fresh chance at a new, improved life.

However, there are no guarantees of good, long-lasting kidney function. And there is no single medication or care measure that can ensure you and your transplanted kidney will function well, safely and for a long time together. A lot can happen along the way.

Fortunately, all of us who have received a transplant have good opportunities to influence developments by making sure we perform our part of the ongoing treatment. Just because the ‘new’ kidney is now in place, it doesn’t mean that the treatment is over. The treatment continues for as long as you live.

Checklist for feeling well
A whole range of factors and circumstances play a part in how you feel – now and in the future. And not just your kidney, but your whole body. One of the points on the list relates to the medicines you have to take. All the other points focus on how you live your life, and how well you look after the whole of you.

  • Home again – tired and happy, your self-care continues
  • Checks – important and frequent, particularly in the beginning
  • The body’s natural defences – are good, but they have to calm down
  • Suppress the immune system – keep the kidney
  • Medicines – your ‘friends’ for life
  • Infections – should ideally be avoided
  • Blood pressure – must remain down
  • Weight – easy to put on weight and you must not
  • Food and drink – good and balanced, not too much
  • Physical exercise – prevents, strengthens and cures
  • Risk of cancer increases – but can be kept down with wisdom
  • Diabetes – can develop if you don’t already have it
  • Tobacco – should be avoided in all forms
  • Being rough – on your stomach should also be avoided
  • Sex and living together – could be normalised
  • Having children – could be possible again once your kidney function has stabilized

Read more in the following about all these points and how important they could be to you.

How you then carry out your self-care – well or not so well – is up to you.

 

Home again – in self-care

For most people, coming home with your own kidney function back feels like a great relief and a liberation from previous worries, uncertainty and limitations. When everything is going well you pass water like normal again, you can start eating ‘normal food’ again and you must drink plenty (of water) to keep your kidney working.

However, every silver lining has a cloud. You can’t simply relax in the belief that now the ‘new’ kidney is in place and the kidney function has been restored, and everything in the garden is rosy. The donated kidney, like your whole body and soul, must continue to be cared for in the very best way to ensure your newly gained health is as good and long-lasting as possible.

You care for yourself – with self-care
Just as before the operation, your care AFTER surgery will be largely carried out by you – at home, every day. What you can and must do yourself is something you will agree with your doctor and other partners at the clinic. Then it is you and you alone who carries out the treatment in your best interest – with the support of your immediate family and friends.

Tired and feeble
It is perfectly natural to feel extremely tired after an operation. The reason you feel extra tired after a transplant is also related to the medicines you have started taking. You may feel completely feeble. This is worst in the beginning when the medicine doses are highest. This is because some of the medicines have a tiring effect, and this is something you just have to accept and put up with. When everything is going well, the doses of medicine are gradually reduced, the body adapts and the tiredness abates.

“Slow puncture” perhaps
Having surgery and receiving a donated kidney is a great joy, but also a massive change in your life. There is of course no guarantee that you will feel happy and in high spirits all the time. The tension before surgery may mean that afterwards you run out of steam, that you have an emotional ‘puncture’. If you were on dialysis before surgery you may also miss the routines, the people you know and the sense of fellowship, even though it is also nice not to have to be on dialysis. Slowly but surely everything feels better, both in your body and soul, as your kidney function stabilises and you establish new routines.

Another effect of the medicines might be that your bodily hair grows a bit more and you become slightly rounder, especially in the face. This happens to varying extents and not to everyone. But it is only noticeable after a while.

An investment worth nurturing
Your own kidney function is an investment well worth nurturing – well.

 

Important, frequent checks

The first weeks and months after a transplant are extremely important. They are crucial to healing and the function of the transplanted kidney.

While you are still in hospital, your progress will of course be monitored all the time. Then, when you come home, you have to go back and take samples several times a week. When everything is going well and the values stabilise, the samples will be needed less and less often.

Samples and follow-up visits
You have to take blood and urine samples, just as you have many times before. You also have to weigh yourself and measure your blood pressure. Naturally both your doctor and you want to know exactly how well the donated kidney is working, how well it is filtering blood from creatinine and urea, for example. The samples provide the whole list of values, along with all the other normal ones. Feel free to ask for a copy of the lab report, then you can monitor how your values are changing and improving, sample by sample, week by week.

Another important test looks at the concentration in your blood of the medicines you take to suppress the immune system. Read more about this later on.

All the results from each sample are assessed by a doctor, who decides if and by how much your medicine needs to be changed, and if any other action is required. You can also see a doctor and talk about how you feel and how things are going. Ideally write down in advance what you want to say and tell the doctor about. When you see the doctor, is it very easy to forget what you were wondering about.

Always take your medication list with you. Your medicine doses will change all the time, and you need to change the list to make sure you take the right dose at home.

Keep an eye on yourself
From the moment you leave hospital after surgery, you and your donated kidney are ‘on your own’ and are strongly dependent on each other. You need the kidney and the kidney needs you – all the time. Because you are closest to your donated kidney, you have a personal responsibility for and interest in doing your utmost to ensure you and your kidney are happy together. In addition to the tests and checks you are asked to attend, you can also carry out your own checks on yourself. For example, you can check the following things every day:

  • Your body temperature – whether or not you have a fever
  • Your blood pressure – it is a very good idea to have your own blood pressure gauge
  • Your weight – weighing yourself every morning helps you prevent weight gain
  • Your waist size – as important as checking your weight
  • Your blood sugar level, of course, if you have diabetes

Just a few minutes carrying out your own checks every morning means you can keep a good eye on the situation.

 

The body’s natural defences

All of us normally have a built-in – and invisible – defence system against attacks from outside. The foundation for this defence has been with us since we were born. Over the years this internal ‘defence force’ has developed and improved as it has encountered and conquered different enemies.

We wouldn’t make it without this defence. We would be beaten. In other words, natural, strong defences are vital – and, therefore, our best friend.

A complex system
The immune system, as it is called, is a complex system made up of different cells and mechanisms. Some of the cells defend us against bacteria, viruses and fungi.

Take for example a small cut or graze on the skin. Even clean skin has all kinds of microorganisms that can easily get into a wound. The body’s defences react immediately, special blood cells flow to the area, the skin turns red and perhaps a little hot and swollen around the wound. A little pus may form, which is partly made up of dead defence cells. If the injury and infection are more extensive, the body may react by increasing the temperature slightly or even going into proper fever. This too is part of the body’s natural defences. So a small wound can cause a dramatic reaction – and that’s a good thing. That’s exactly the way it should be.

The immune system also reacts against cells from other individuals. All cells have the individual’s tissue type ‘engraved’ on their surface, like a kind of personal ID number. This enables the immune system to differentiate between the body’s own cells and cells from another person. When the immune system detects foreign cells, a complex defence system is activated to attack the foreign cells. That is also normal and good and exactly how it should be.

Powerful mobilisation
So the immune system reacts immediately to the slightest disturbance. You can imagine the reaction when a whole organ, a foreign kidney, has been surgically inserted beneath the skin and muscles around the stomach. The entire defence system is mobilised, stands to attention and gets down to work at full force. The intruder, the enemy, the surgically inserted kidney, must be rejected, by all means available and as quickly as possible. This is how the immune system thinks.

But…

If the immune system were allowed to function and react as it wants to and normally does, a transplant would be impossible. The kidney would be rejected.

Conclusion: We must kindly and very firmly ask the immune system to calm down – right down.

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Suppress the immune system, keep the kidney

Our body’s immune system reacts to a transplanted kidney by trying to reject it. This is perfectly natural and normal. It is called ‘rejection’.

For a transplant to succeed the immune system must therefore be inhibited, suppressed, held back, weakened so much that the ´new´ kidney is NOT rejected. We do this with medicines that suppress the immune system.

A balancing act
This is a highly refined balancing act. The immune system must be inhibited just enough that the kidney stays in and is not rejected. But if the immune system is suppressed TOO much, we may not have enough natural defences left, and this makes us far too susceptible to infections and other attacks.

Striking the perfect balance is exactly what the doctors are keen to achieve during those first hours, days and weeks after surgery. And it really is no easy task, partly because us patients have immune systems that have developed differently and vary greatly in terms of potency.

To achieve the right balance, we must be monitored very frequently and carefully, particularly in the early days. We have to undergo tests and the doctors make assessments the whole time, and if necessary they change the doses of the various medicines.

The defence reaction is strongest during the first days and weeks – and this is also why the doses of medicine are highest at this time. When everything is going well the situation stabilises and the medicine doses can gradually be reduced, but the immune system never gives up completely. If we ease the pressure just a little, or are the slightest bit careless with our medication, the immune system starts up again – and we risk rejection.

Acute rejection
In some cases the body reacts very strongly and immediately to the ‘new’ kidney, despite medication. Such an acute reaction nearly always occurs in the early days. Every conceivable measure is taken to counter this reaction, such as even stronger medication drip-fed for several days and admission to hospital. In most cases the rejection can be stopped, but in the very worst cases the kidney cannot be saved and has to be removed.

Reduce the risk – yourself
You can reduce the risk of rejection yourself, and also of other complications in both the short and long term, for example by:

  • Always taking your medicine exactly as you should
  • Avoiding infections of various kinds, staying healthy
  • Not subjecting the kidney to hard knocks or bumps
  • Keeping your blood pressure down
  • Eating a good, balanced diet, drinking plenty of fluids

Signs of rejection
The first signs of early rejection are often not particularly obvious or dramatic. You may not even feel anything. So you must be observant about how well you are and how you are feeling. Here are some typical signs that everything is not right:

  • A general feeling of being unwell
  • Fever – even just a slightly higher temperature is a sign to be taken seriously
  • Less urine production
  • Protein in your urine (and blood in your urine)
  • An increase in weight, which may indicate that water is being retained in your body
  • Tenderness or pain over the kidney
  • Tiredness, nausea

If any, and especially if several, of these symptoms occur, you must contact the clinic – so remember to write down the phone numbers to call if anything happens.

If and when you are asked to attend the clinic, the staff will take several different tests to find out what is happening.

Treatment against rejection
The treatment that may be needed if there are signs of rejection, or during the early stages of rejection, is primarily more and more powerful medication.

Around one in six
Around one in six people who have a transplanted kidney will experience a degree of rejection at some stage. This could be anything from just mild signs of a reaction to more serious symptoms. For the vast majority, rejection can be prevented and the kidney function saved.

Late rejections
It is worth repeating that the immune system never gives up. This means that what are called ‘late’ rejections can occur at any time, several years after surgery – in fact as long as the kidney is in your body or as long as you live.

It has not been fully established what can cause late rejection, but one thing is clear: if you do not take your anti-rejection medication exactly as you should, your immune system will be reactivated and you risk rejection.

Immunosuppressive medication
The medications we use to suppress the immune system are called immunosuppressants. They may also be known as anti-rejection drugs.

 

Medicines, our life-long companions

The medicines are our ‘lifelines’ and, therefore, our ‘life-long companions’. They are absolutely crucial if our transplanted kidney is to stay in, for the kidney to work happily with us and function well. WITHOUT the medicines we would be lost. WITH the medicines we have the chance of a good, almost normal life again. The best thing we can do, therefore, is to accept the situation and the medicines – for they will be an irreplaceable part of our lives for as long as we live.

Different people – different medicines
The medicines us transplant patients have to take are individually selected. The doses are individually adapted. There are many different medicines for suppressing the immune system, and they all have slightly different effects. As patients we are also quite different. So none of us is given just ONE anti-rejection medication, all of us have several different medicines, and together they help us keep our kidney in place.

Exactly which medicines and doses each of us has to take is decided by our doctors, in whom we have great trust. Our job as the patient with a transplanted kidney is to take the medicines and then report back to our doctors about how we feel and how things are going.

All medicines also have unwanted side effects. But if the benefits of the medicines did not far outweigh the problems with side effects, the medicines would, of course, not be available from the pharmacy.

Your own reliable system
Before the transplant you have devised, practised and found your own system for always remembering to take your tablets and never forgetting. Now that you have a transplanted kidney, your system has to work perfectly. It is not just important that you take your tablets every day, it is also important that you take them at roughly the same time every day. If the time varies too much – say by more than an hour or two here or there – your medicines will have less of an effect.

 

Your medication list

Use a piece of paper to write a list of all your medicines, how many of each tablet you have to take and when to take them. When a dose changes, cross the old one out and enter the new dose. Always bring this list every time you visit the clinic. Also always check with your doctor that your list is completely accurate and up to date.

If you forget to take your medicine, take it when you realise you have forgotten. If you vomit and bring up your medicine, take it again within one hour. If you have forgotten or missed a lot of doses, contact the clinic. Always tell your doctor if you have missed a dose, what you have missed and how much. Always tell your doctor if you feel anything that could be a sign of a side effect from your medication. Only take the medicines you have been prescribed, and no others. Do not take any ‘natural’ remedies.

Infections should be avoided

There are always all kinds of microorganisms everywhere around us – bacteria, viruses, fungi and others. Microorganisms are also always around and on and in every person. This is a normal, natural part of our lives. Avoiding microorganisms completely is not possible, and nor is it necessary.

But as we have recently had surgery and received a transplanted organ, we are more susceptible and sensitive to infections. During the early days in particular, it is therefore wise to try to stay away from obvious risks of infection.

Reducing the risks of infection

  • Wash your hands, frequently and thoroughly. Ideally use an alcohol-based hand rub.
  • Wash your hands even more thoroughly before and during cooking.
  • Showering is fine (take care around the operation wound). Avoid taking baths in the early days.
  • Avoid close contact with people who are ill and infected, such as people with chicken pox, colds, flu, herpes or other infectious diseases.
  • Busy public transport and tight crowds increase the risk of infection. If possible choose a different mode of transport, and less crowded environments are better.
  • Your skin becomes thinner and more fragile, making it easy to get small cuts. It is wise to protect yourself against small cuts (with gloves, clothing, by being careful) and also to take proper care of small cuts.
  • Fungal infections (in the mouth and genitals) are not unusual in the early days, which is why it is good to be observant and, if necessary, contact the clinic early on.
  • Public baths and swimming pools should ideally be avoided completely in the early days.
  • Urinary tract infections come uncomfortably close to the ‘new’ kidney.
  • Infections in the operation wound must be dealt with properly.

 

Signs of infection
Discovering an infection early usually makes it easier to do something about it. So it’s a good idea to be observant of yourself, particularly in the early days. Here are some typical symptoms of infection:

  • Fever, sweating, cold shivers
  • Pain when you urinate, or needing to urinate frequently
  • Pain in your joints, muscles, head
  • Coughing, vomiting, diarrhoea
  • Tenderness, redness around wounds, weeping wounds

Life itself is a risk
It is impossible to avoid all risks in life. Or indeed all risks of infection. Life itself is a risk, but it’s still there to be lived – also by all of us who have a transplanted kidney.

 

Continuing to keep an eye on blood pressure

In the long run, high blood pressure risks harming the transplanted kidney in the same way and just as much as it can damage original kidneys.

As you know, high blood pressure also increases the risk of other illnesses, such as cardiovascular diseases. In other words, as the recipient of a transplanted organ there are many good reasons to try to keep your blood pressure as normal as possible.

Sometimes better with the ‘new’ kidney
One of the normal, important functions of the kidneys is controlling blood pressure. With worsening kidney disease, i.e. with decreasing kidney function, the kidneys become less able to regulate blood pressure, and as a result the blood pressure rises. You know this.

With a transplanted kidney with full or adequate function, the blood pressure can be normalised. At best the transplanted kidney can give you as normal a kidney function as possible, and therefore controlled blood pressure. No one can tell in advance if this will be the case for you.

What blood pressure is best?
The short answer is that normal blood pressure is best. The most common recommendation for kidney patients and diabetics is a blood pressure of 130/80 or lower. But this is not set in stone, and blood pressure also varies greatly in individuals. To obtain a fuller picture of your blood pressure you can take a test, whereby the blood pressure is measured at regular intervals over a 24-hour period.

What you can do yourself
For some of us, the ‘new’ kidney manages to maintain a normal blood pressure by itself. But we cannot rely on this in the long term. It is therefore best to continue to do your best in various ways to keep your blood pressure down – just as you did before the transplant, or even better and even more purposefully.

The best thing to do is have your own blood pressure gauge (or borrow one). The automatic gauges available in shops are easy to use. They enable you to take your blood pressure as many times as you like and whenever you like. If you take your blood pressure daily at the same time and in the same way during the period immediately after your transplant, you can monitor if and how your ‘new’ kidney’s control over your blood pressure is improving, slowly but surely.

For an even better blood pressure you can, as before: do regular physical activity, cut down even more on your intake of salt (avoid all salty products, prepare your own meals, never add extra salt), lose weight (if you are overweight), reduce your stress levels, not start smoking again and continue being careful with alcohol.

If doing everything you can yourself does not lower your blood pressure enough – then you will have to take medicine to reduce your blood pressure.

 

Enjoy life – but don’t put on weight

For the majority of us, it’s very easy to put on weight after a transplantation. There are many reasons for this:

  • The joy of having a functioning kidney again – and a better life
  • Being able to eat normal food again, without restrictions
  • Feeling so much better, no more nausea
  • Cortisone also helps us become rounder
  • The feeling of being full decreases, so we eat more

All this together means it is easy for us to eat too much, or much too much. And it is absolutely understandable. After perhaps many years of different, necessary but to say the least different and often tricky diets, there is a tremendous sense of liberation. After everything we’ve gone through, it is only right that we should enjoy eating well and plentifully again.

Those of us who lost a lot of weight during earlier treatments now have good opportunities to ‘eat themselves back up’ to a healthy, normal weight.

All the old reasons and a few new ones
All the old reasons for not being overweight still apply. Similarly, all the old reasons for not putting on weight also apply. And for transplant patients, there are a few more reasons as well:

  • It is far harder to maintain a stable weight as a transplant patient
  • Weight gain increases the risk of diabetes (for previous non-diabetics)
  • Medication to suppress the immune system also increases the risk of diabetes
  • Weight gain increases the risk of elevated blood pressure
  • Weight gain reduces our possibilities to be physically active, which in turn affects the health of our whole body – including the kidneys

So if you were a ‘normal’ weight when you had your transplant, zero weight gain is the best favour you can do yourself. But be prepared that it won’t be easy.

No weight gain
Maintaining a stable weight requires a balance between the energy we put in and the energy we expend. We must use at least as many calories per day as we consume in meals, drinks, snacks, fruit, sweets and so on. The reason for saying “at least as many” is that our medicines also contribute to weight gain.

One way of making it easier to maintain a stable weight is to drink water (and never fizzy drinks). It makes us feel fuller. A good but not excessive intake of water is also excellent for the transplanted kidney. Not taking a second helping is another easy way of controlling your weight.

 

Good food for a good life

One of the biggest and best benefits of a transplant is that we can eat and drink normally again – and eat and drink ‘what we like’. Without restrictions (we think).

One of the main risks after a transplant is that we do exactly that: eat and drink what we want, and however much we want. This can have undesirable effects.

What we eat and drink is still an important part of our treatment and can play a very important part in how good life with a transplanted kidney will be. Our eating habits can help us achieve good health, but they can also lead us to poor health. You no longer have to follow the diet you had before your transplantation – you no longer need to follow a ‘kidney disease diet’ or a ‘dialysis diet’. And what and how you ate before you had kidney disease is history.

Your new life as a transplant patient calls for a diet which takes into account the fact that you have a transplanted kidney – and which is also good for your whole body throughout your life.

Your dietitian can help
Seeing a dietitian after your transplantation is invaluable. Your dietitian can analyse and assess how well you are already eating, and can also suggest a diet that best promotes your health and is realistic for you to follow.

Your diet after the transplantation
Both the transplant itself and the medicines you take affect the diet you should follow. For instance:

  • During the first months after your transplantation you will need more protein than normal to improve the healing process and combat the tendency to lose muscle mass. Protein is mainly found in meat, fish, eggs and dairy products, and also in peas, beans and lentils.
  • You need enough calcium to ensure your bones do not become decalcified. Milk and dairy products contain a lot of calcium.
  • The medicines give most people a bigger appetite, which can easily lead to too high an intake of food and energy and, therefore, an increased risk of becoming overweight.
  • For some people, however, their appetite decreases after a transplant, so extra energy supplements may be necessary.
  • The immunosuppressant medicines make us more susceptible to infections from food – especially in the first months. Therefore: wash your hands frequently and thoroughly, use fresh foods, check the best before date on everything, do not leave your food out at room temperature (as this is where bacteria thrive), hot food must be heated right through and piping hot, cold food should not be left to stand and become lukewarm, a sandwich left for hours in a cafe is not risk-free food for someone with a recent transplant, choose eateries that you think/know have sound hygiene procedures.
  • Do not eat/drink grapefruit or grapefruit juice at all. This is the only thing you must avoid as grapefruit spoils the effect of your most important medications.

Diet for your whole body, your whole life
When it comes to the food we should ideally be eating, there is not much we need to keep an eye on specifically because we have had a transplant. It is not nearly as complicated and difficult as the ‘kidney disease diet’, for example. The few yet important ‘rules’ on the previous page are probably easy to follow for the vast majority of us.

But food also has many other important functions. A good diet is virtually a prerequisite for a good, healthy life for the whole body, not just the kidneys. And this is precisely the kind of life we want to live (again) – after all we are whole people, not just transplant patients.

Food for health and joie de vivre
The ideal diet for you must be based on your body and your current health. A good start for a good life with an individually adapted diet is certainly to speak to a dietitian.

You also have good opportunities yourself to acquire the knowledge you need. There is a tremendous amount of information available from dietary advisors, books, brochures, websites, family and friends, and from other transplant patients.

The positive aims of the balanced, composed diet you eventually decide on can help and support you in your efforts to:

  • Stay as healthy and well as possible – for a long time
  • Reach and/or maintain your normal weight
  • Avoid developing further illnesses
  • Make sure you get all the important nutrients
  • Control your blood sugar, whether or not you have diabetes
  • Control your blood lipids
  • Enjoy the good things in life

 

Protect your liver

Both alcohol and the medicines you take to suppress the immune system are ultimately broken down in the liver. As transplant patients, our livers are therefore under extra pressure.

To avoid the liver becoming damaged, we must be careful about how much alcohol we drink. No alcohol at all, particularly in the early days, is of course best. After that a maximum of one glass of wine for women and two for men (or equivalent) is allowed – but not every day.

 

Better health with physical exercise

It is virtually impossible to ignore the message that physical activity is good for everybody. You have probably also heard over and over that physical exercise is also excellent for those of us who have problems with our kidneys.

It is therefore quite obvious that physical exercise is also good for everyone who has had a transplant. Several or many years of decreasing kidney function – and for many of us a long time on dialysis – have certainly left their mark, both in terms of muscle strength and fitness.

Receiving a transplant and having good kidney function again is therefore a unique, excellent opportunity to give the body a real fresh start or restart

Many positive effects
A sedentary lifestyle is a well-known risk factor for many illnesses. And developing other illnesses (too) is exactly what anyone with a transplant wants to avoid. We have gone through enough already. If physical exercise can help us avoid or relieve complicating illnesses, it’s worth the effort.

In fact physical activity also helps people with transplants to:

  • Reduce their blood pressure and keep it down
  • Reduce the risk of diabetes and control blood sugar levels
  • Not put on or lose weight after the transplant
  • Reduce stress in life, increase the ‘feel-good feeling’
  • Get fitter and have more energy

Whole body affected
Many parts of the body benefit from physical exercise, such as: 

  • The heart works more effectively after exercising for a while. The heart muscle gets stronger, the amount of blood pumped out with each heart beat increases and the pulse slows down.
  • The blood vessels in the heart and muscles improve with exercise. Their volume and the number of capillaries increase. More blood can be directed to the working muscles and the oxygen uptake in the muscles improves.
  • The blood volume increases through regular stamina training and you may develop more red blood cells. The composition of the blood lipids improves.
  • Exercise also improves the lungs’ ability to rapidly transfer oxygen from the air into the blood stream. Once you have been exercising regularly for some time, your breathing slows considerably at the same level of exertion thanks to the more effective heart-lung function.
  • Regular exercise also produces tangible results on the muscles. Weight training expands the muscle fibres. The long-term effect of stamina training is that it changes the balance between fast and slow muscle fibres, resulting in more slow fibres. The transfer of energy to muscle cells is improved.
  • The gastro-intestinal tract works more efficiently.
  • The hormonal system in the body undergoes changes as you exercise more.
  • The skeleton becomes stronger when the body is allowed to work regularly and when exposed to a fair amount of mechanical exertion.
  • Cartilage and connective tissues in the joints benefit from reasonable exertion.
  • The brain and nervous system benefit from regular physical activity. For instance co-ordination, balance and reaction time all improve. More physical movement makes us happier and boosts self-esteem.
  • With physical exercise the skin becomes better at producing sweat, which means that people who do regular exercise can tolerate heat better.

Take care at first
Immediately after a transplantation it is absolutely essential to be a bit careful about exercise. No heavy lifting or highly intensive training during the first few months. No sport or other physical activity that risks you being hit or knocked in the stomach, particularly in the area where the transplanted kidney is.

If you have not done much exercise before but now want to grab this opportunity to start a new, healthier life, it is also wise to take care in the beginning.

Fitness, strength and balance
Improving fitness entails training the heart and lungs with brisk walks, pole walking and other activities that increase your pulse and breathing. Fitness has a short shelf-life. Regular exercise is therefore best, every day or several days a week.

Improve muscle strength by working with weights or resistance bands – or quite simply by doing physical jobs at work, at home and in everyday life.

Balance and co-ordination can be improved by standing on one leg at a time. Aerobics and dancing improve both balance and co-ordination.

Most important
The very best physical exercise is the exercise you actually do. So the most important thing is that you try different kinds and find a physical activity that you can and want and have the energy to do regularly.

One way of motivating yourself is to keep a simple ‘diary’ of the exercise you do. Use a regular diary or calendar and write down what physical activities you do each day. You will gradually notice that you can manage more.

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Protect your skin from the sun

The skin is one of our largest organs, and is about 2 square metres in area. It is being renewed all the time. Surface cells fall off and new ones are formed from below. Our skin is robust and hardwearing, and normally acts as an excellent shield from the world around us.

Suppressed immune system – increased risks
When us transplantees take medicines to suppress the immune system, our defences are not just suppressed around the ‘new’ kidney, but in our whole body. Suppressing the immune system is necessary if the ‘new’ kidney is not to be rejected. But with a suppressed immune system, we also become more sensitive and more susceptible to different kinds of infection, for example. We may also experience unwanted changes to the tissues in various organs, such as tumours and different forms of cancer, both inside the body and on the surface.

It is not unusual for transplantees to develop skin changes of various kinds which may be early stages of skin cancer. They often occur on areas exposed to a lot of sunlight, such as the face, ears and hands. But skin changes can also appear on any part of your body.

The most serious risk is the risk of skin cancer. This is why it is vital that you are observant about any changes to your skin – such as eczema, redness, chapped skin, moles, cuts, or irregularities that change and do not go away. If you notice any changes like this, show them to your doctor as soon as possible so you can receive effective treatment if required. The earlier they’re treated, the better. It is also important that you are examined by a dermatologist at some point, preferably within two years of your transplant.

Protect your skin from the sun

Sunlight contributes heavily to the development of skin cancer. Quite simply, this means that those of us with transplants should not expose ourselves to sunlight without protecting ourselves from the sun’s rays in any way we can. We can do this by, for example:

  • Staying in the shade as much as possible, particularly in the middle of the day
  • Not going outside without sun protection, both in the form of clothing and sun cream
  • Wearing clothes – the darker and tighter, the better the protection
  • Wearing something on our head, ideally a broad-brimmed hat to protect our face, ears, neck and throat
  • Using plenty of sun cream with a high protection factor (30-50)
  • Using more sun cream when necessary – if you have sweated or been swimming
  • Not sun-bathing and never going to the solarium

Light skin is more sensitive than dark skin. Children are more sensitive than adults. Dermatologists recommend sun protection throughout the sunnier half of the year, even when it is overcast. This is particularly important if you have very sensitive skin.

 

You could develop diabetes

If you had diabetes before your transplantation, you still have it. A transplanted kidney does not change this. However, your diabetes may of course affect the transplanted kidney and its function, just as it did before with your own kidneys. This is why it is equally – or even more – important that you do your part in treating your diabetes after your transplantation as you did before.

Without diabetes before

If you did not have diabetes before your transplantation, there is now an increased risk of developing diabetes afterwards. The reasons for this are as follows:

  • One of the unwanted side effects of the medicines we take to suppress our immune system is that the risk of diabetes increases.
  • It is very easy to put on weight after a transplantation, and weight gain or being overweight is a clear risk factor for type 2 diabetes.

It is the combination of these two factors that increases the risk – in addition to previous illnesses – of also developing diabetes.

You can reduce the risk yourself
There is a lot you can do yourself to avoid developing diabetes, by:

  • Maintaining a normal weight after the transplantation and not putting on weight
  • Losing weight – if you are overweight
  • Staying physically active, burning off a lot of calories every day
  • Eating a good, balanced diet and avoiding a lot of calories from sugar

When you have tests done, your blood sugar will also be checked. If the level starts to rise, this is a clear signal of the risk of developing diabetes. If this happens, it is also a clear signal for you to work even harder to keep your blood sugar at the right level and thereby avoid developing diabetes.

Early symptoms
Despite every effort, for some people diabetes cannot be avoided. This is why it is a good idea for you to be observant as to whether you have one or more of the first signs, i.e.:

  • You are thirstier than normal
  • You are urinating more, or more frequently
  • You feel more tired than normal
  • You are losing weight

If you do not have diabetes, do what you can to avoid developing yet another illness.

 

Transplanted and smoke-free

All the arguments against smoking, which you have no doubt heard so many times before, still apply after a transplantation. The only difference is that the arguments are now even stronger.

Not smoking at all for a long period before the transplantation was an excellent way of reducing the risks smoking carries during the operation itself.

Not starting to smoke again after the operation is quite obvious for those who want to look after and keep their transplanted kidney and their own kidney function for a long time. As a transplant patient there are some other good reasons not to smoke:

  • Smoking is harmful to the kidney and increases the risk of a range of diseases
  • With a suppressed immune system the body is unable to defend itself as well as before against all the harmful substances in the smoke
  • A suppressed immune system coupled with smoking further increases the risk of infections and diseases in the lungs and airways
  • Smoking is always a risk factor for diseases of the heart and blood vessels. As a transplant recipient the risk is, of course, greater.

Quite simply, a transplanted kidney and smoking do not go together. But the choice is yours – as always.

 

Give yourself a (careful) pat on the stomach

It hardly needs saying that you need to protect your transplanted kidney against (hard) hits, knocks, kicks or other violence. It’s obvious.

The kidney is right below the scar on your stomach, and is not in that deep. You might be able to feel the kidney with your fingers. Quite thick blood vessels run to and from the kidney as does the ureter, which leads to the bladder. All these vessels and contacts were connected by the surgeon during the operation and, quite understandably, it takes time for them to heal. This is why we must always take care, particularly in the beginning:

  • No heavy lifting during the first months, then a careful increase
  • No sit-ups during the first months, then carefully
  • Walk briskly, jog carefully, no high-intensity training
  • No knocks or hits – ever
  • No hard contact sports

But we can of course give ourselves a pat of joy and pride on the stomach – carefully.

 

Sex, life together and having children

One of the most common consequences of kidney disease – and of the medication – is that both your drive and your ability to have sex decline as the kidney function decreases. This applies to both men and women and can be down to many different causes: the feeling of being ill, becoming more ill and perhaps feeling nauseous, increasing tiredness, a general dislike of yourself and the bodily changes the illness brings with it, hormonal changes, worry and stress about what will happen, lower self-confidence and self-esteem.

Men
For men with kidney disease, the most common sexual problem is failing potency. After the transplantation, with regained kidney function, the situation usually improves as the effects of the disease on the body and soul decrease or disappear. Potency may, therefore, come back, as may libido, although it may take time.

Impotence can however have other causes, such as increasing age, being overweight, poor physical shape, alcohol, smoking, stress and the side effects of different medicines. For these reasons, the impotence could continue.

Women
The most common sexual problem for women with kidney disease is that the mucous membranes become dry and, therefore, can easily sting or be painful. For women of childbearing age, periods could become irregular or stop. After a transplant, with regained kidney function and better general health, the situation may improve and periods may come back.

Women and men
For many people, the drive and ability to have sex return after the transplantation, but to varying degrees and after different lengths of time.

Talking to your doctor, even if you feel uncomfortable talking about these problems, is never a bad idea. There could be help available, whether through medication or other methods.

Conceiving and having children
It is possible for women of childbearing age who have had a transplant to have children. But it is not advisable for at least the first year, so it is necessary to use normal contraception. The kidney function should also be nice and stable. Some medications increase the risk of foetal damage and should therefore not be used if you are planning to have children. Other medications are inappropriate during breastfeeding, so talk to your transplant doctor about these issues.

The sperm of a man with a transplant could be adversely affected by the medication, which means that men who want to father children and have had a transplant should talk to their doctor.

 

Some vaccinations are fine


Once your kidney function has stabilised, it is fine to have the regular vaccination against influenza and other vaccinations that contain a killed virus.

However, people who have had a transplant must not have vaccinations that contain a living virus.

Remember: do not get any vaccinations without first mentioning that you have had a transplant. Always consult your doctor about what vaccinations you can or should take if you are travelling abroad.

 

Planned travel, smart travel

Your freedom of movement after a transplantation makes the idea of travelling, in particular to other countries, attractive (again). Once your kidney function and general health have stabilised there are no obstacles to travelling, but before you set off there are a few things to consider and arrange.

The first thing to do is to talk to your doctor about your plans, especially if you plan to be away for a long time.

  • Ideally choose a destination with a good standard of hygiene – and not a place where a lot of tourists tend to fall ill.
  • Some destinations have more contagious diseases, which we are not used to. Preferably choose somewhere else.
  • If you need a vaccination, talk to your doctor.
  • You may need a certificate that explains in English that you have had a transplant and need the medicines you have with you. Talk to your doctor.
  • Obviously you need to make sure you take enough of all your medicines to last for more than the whole trip – and then pack a second, identical batch in a different place (one in your suitcase, the other in your hand luggage).
  • Keep the medicines in their original packaging so it is very clear what the medicines are and that they are yours. This is to avoid problems at customs.
  • Some medicines are sensitive to excessive temperatures. See if this is the case with yours.
  • The European Health Insurance Card is available from the Swedish Social Insurance Agency.
  • As a transplant recipient you should definitely check your travel insurance. Different companies have different rules. You may need to pay a supplement to be sure.
  • At your destination you have to live ‘more hygienically’ than at home. Only drink bottled water and never have ice cubes in your drink. Eat fruit that you can peel or wash properly yourself. Avoid salads from buffets and ice cream sold in scoops. Eat food that is thoroughly cooked through and piping hot. Essentially, be more careful about what you eat and drink.
  • The sun in many tourist destinations is far stronger than in Sweden. Prepare to protect yourself even better than at home.

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‘AFTER’ FOR THE SOUL

Reflections and emotions

The initial period after a transplantation may just be quiet and happy, but it can also be something of an emotional rollercoaster.

When everything is going well and the kidney is working well, the ‘release’ can be the most overwhelming feeling. Your transplant opens the door to a brand new phase of your life, a promising time of joy and opportunities and – health.

Realistic expectations
A successful transplantation does not mean that your body has the same health, power and stamina it had before kidney disease took hold. Quite a lot of years of both ageing and illness may have passed between first getting the disease and receiving a transplant. This certainly makes its mark on the body. However good a transplant is, it is not a ‘rejuvenation treatment’.

It is a bit too much to hope that your transplanted kidney will have the same full function that your original healthy kidneys had all that time ago. It is more realistic to expect and be grateful for good or reasonable kidney function for a good life. That’s good enough.

Ageing, years of illness and a transplanted kidney function may jointly make us feel more tired than we would like. This is something we have to live with, and it is far better than no kidney function at all.

Outside expectations
The people around you have been able to monitor over a long period how your disease and treatments have radically impacted on your life (and often on theirs too). Your newly gained health from the transplant is therefore certainly something you will all be glad about.

People also quickly become accustomed to you now being ‘healthy’ again and ‘back to normal’. No doubt it feels like as big a release for them as it does for you. Both you and the people around you would like you to be able to do everything you did before, and also always to have the energy to be happy and cheerful. But it’s not that wonderful for everyone, perhaps not for anyone – and not every day.

Even after the transplantation, plenty of positive thinking is needed – as well as realism and understanding.

Gratitude
The sense of gratitude is immense. Gratitude towards everyone and everything that made the transition from ‘ill’ to ‘healthy’ possible. Gratitude towards the living donor can be expressed with and without words, warmly and sincerely and to the extent that feels right for both of you. Without exaggeration.

Some transplant recipients would also like to express their gratitude to the relatives of the deceased donor. This is not as easy because no recipient is entitled to know who the donor was. There is complete anonymity and this is both right and proper, it’s the way it should be.

But if it feels right to write a few lines of thanks or to briefly write to say what the donated kidney means to you, then perhaps that is okay. Someone at the clinic can help by asking the relatives of the deceased donor what they would think about a letter. They may say it’s fine. Knowing that the donated kidney has brought joy and benefit to a person in need may feel meaningful and be a comfort. But they may equally say no, that a letter would be too painful a reminder of the death of their loved one.

If you would like to write and your donor’s relatives say yes, it is still important that the anonymity is protected. You must not disclose who you are. What you write therefore needs to be read and approved by the staff at the clinic before it can be sent to the relatives.

How does it feel?
Someone may wonder how it feels to have someone else’s kidney in your stomach. Like nothing in particular, is one answer. In purely physical terms the transplanted kidney quickly becomes a well-integrated part of the body. Emotionally it may be different, and usually completely wonderful. A kidney function of your own again, and life is taking a turn for the better.

If things don’t go so well
Not all transplantations are successful. Despite all the sample taking, tests and preparations, problems of varying complexity may still crop up. At worst, the kidney may be lost. Emotionally this can be extremely difficult, and almost as hard to accept for a living donor as the recipient. In purely physical terms, this means beginning or resuming dialysis and starting over the process to try and get a second transplant.

The side effects that all medicines have can be very troublesome for some people, while other people do not feel any of the side effects at all (or don’t mind if they do).

No holiday
Immediately after the transplantation we are very careful with everything and determined to do everything right to ensure things go well. After a while the new routines become a habit, part of our everyday lives. When everything is going well it’s easy to take the good life with a transplant for granted – it is a nice feeling that creeps up on you.

This feeling can also lead to a degree of recklessness. It’s easy to think that because everything is going so well it’s probably okay to take a little holiday from the tablets – such as at the weekend or on a short break. DON’T DO IT. DON’T THINK THAT WAY. Your immune system never takes a holiday, and if you want to keep your kidney you can’t have a holiday either – from your tablets. It doesn’t matter how many years you have had the transplanted kidney.

Quality of life and finances
For most people a kidney transplant means that their previous job can be resumed or perhaps another one can be started, new or renewed work friendships, improved family finances, time and energy for hobbies and travelling.

Put simply, for most people a kidney transplant means a clear, significant improvement in quality of life for both the recipient and his or her family and friends.

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Acknowledgements

I would like to thank everyone who, in various ways, has shared their knowledge and experiences and inspired my writing, and everyone who has read and commented on the text. A special thank you goes to doctors Peter Barany, Lars Wennberg, Stefan Jacobson, Johan Hellborn, Michael Olausson, Lars Bäckman, Jonas Wadström, Henrik Ekberg, Anders Hartmann, Leif Eriksson and Marie Sverkersdotter; nurses Annette Lennerling, Monica Rådström and Kerstin Bergström; dietitian Gerd Faxén-Irving; patients Håkan Hedman, Britt-Marie Alm, Einar Fries, Eva Lagging, Margareta Wihlborg, Martha Ehlin and Peter Carstedt. Warmest thanks to Charlotte Möller and Åsa Audulv