Did you know?

You, and people close to you, can experience different emotions and stress at different stages of your kidney care and all these feelings are normal.  Before transplantation you (and your family) probably experienced stress coming to terms with your diagnosis, medications, adjusting to life living with kidney disease, and waiting for a kidney transplant.

You can also experience a grieving process. Episodes of discouragement or emotions that are difficult to feel should normalize over time. Receiving a kidney transplant is an exciting time filled with many emotions, and it can be stressful too for you and everyone around you in spite of the joyfulness of the event. It is more than just an operation; it requires a certain degree of personal strength, resilience, and good coping skills.

Mental Impact

Many people focus on the physical aspect including dealing with surgery, post-surgical pain, and the recovery period. However, after your surgery fewer people think about the emotional impact that such a rapid transformation of your lives can have on yourself and the people around you. Just the abrupt change of medications can be very upsetting. Patients can experience a range of emotions during the transplant journey, and this is perfectly normal. Many people experience positive emotions such as hope and happiness, but it is also normal to be afraid, anxious, and guilty.

After a kidney transplant, people struggle to get their lives back as before. Stress is a normal part of life, but too much stress will negatively affect your emotional well-being. It is common and completely normal for people to feel stressed due to repeated visits to the hospital in the first few months, along with the persistent fear that the new kidney will be rejected. It is essential for your well-being and that of your loved ones to seek help if these feelings begin to overwhelm you.

How can having a kidney transplant affect your emotional well-being?

  • People with a kidney transplant are more at risk of psychological problems such as depression and anxiety when they struggle to return to their previous daily routines.
  • Quality of life in people with a kidney transplant tends to be higher than people on dialysis. Moreover, in general, kidney transplant recipients take better care of their health.
  • Receiving a kidney transplant is recognized by many people as a unique gift. Recipients become quick learners and rapidly adjust to their new conditions which are a marked improvement over life before the transplant. This creates positive motivation for a recipient to lead a fulfilling life while at the same time managing transplant treatments.

How am I doing?

WHO-5 Well-Being Scale
Always or most of the time Sometimes Never or most of the time
I have felt cheerful and in good spirits
I have felt calm and relaxed
I have felt active and vigorous
I woke up feeling fresh and rested
My daily life has been filled with things that interest me

If you mostly checked off ‘Always or most of the time’: You have good emotional well-being and feel motivated. Keep doing what you are doing to deal with stress

If you mostly checked off ‘Sometimes’: Your emotional well-being can be improved, and you may find tips in the following section helpful to help you deal with stressful life events.

If you mostly checked off ‘Never or most of the time’: You are distressed. Try to improve the way you deal with stress with tips below. If feelings of sadness or lack of interest continue, you should discuss them with your doctor.

Another way to monitor your well-being is to use the questions below. They won’t stop possible bad feelings that you may identify but they will help you gain control, insight, and self-compassion.

You might do one or two a day or return to the same prompt over time to see how you react to it and how your reactions change.

  1. Are you feeling sad/depressed and in bad spirits? Is the sadness associated with a specific situation? Think about if this behaviour is impacting any area of your life?
  2. Are you feeling nervous and worried? Is the feeling associated with a specific situation? Think about if this behaviour is impacting any area of your life?
  3. Are there things that you can control? What can help reduce your stress levels?
  4. What are the things that you can rely on to help you find stress relief? It’s often fun to write these onto a big piece of paper, coloured in or designed with illustrations. List every single stress relief tool so that you can refer back to this page as a toolbox.
  5. How have anxiety and fear changed your relationship with your family, relatives and friends?
  6. Write down your current emotional, physical, and mental needs. How can you find ways to fulfil them during the day?
  7. Are you being kind to yourself in this hard time? How can you be kinder to yourself?
  8. When you begin to worry about your body and health, what can you do to get control and seek support? Who is part of your support team?
  9. What are five things you can do right now that can support your mental and physical well-being after a night of falling into a bad news spiral? How can these things help your stress levels and your disease?
  10. Picture yourself surrounded by joy. What is joy? What is its shape, colour, sound, or texture? Picture yourself being encompassed by it and held up in its arms. How do you feel? How does this help to provide support for your body and mind?

After answering or thinking about these questions, you will be able to identify yourself as:

“I have good emotional well-being and feel motivated”

  • Keep doing what you are doing to deal with stress.

“I feel that my emotional well-being can be improved”

  • You may find tips in the following section helpful to deal with stressful life events.

“I feel I am distressed”

  • Try to improve the way you deal with stress with the tips below. If feelings of sadness or lack of interest continue, you should discuss them with your doctor.

What can I do?

Sometimes we cannot stop stressful events from happening, but we can use lots of different approaches to control how you react to stress. Everyone has their own way of dealing with life after a kidney transplant, and you will find that you have your own strengths to draw on.

Research has shown that optimism is very important to health. Optimistic means you are more positive about the future.  Positive coping skills have also been shown to be most effective way for kidney transplant patients to handle stressful events. By practicing positive coping skills, you will be in a better position to deal with stressful situations at the same time as maintaining your health and well-being. Remember, you can have optimistic behaviours and at the same time experience discouragement episodes and hard emotions, it is normal.

You can take steps to assess stress, take appropriate action and restore your emotional well-being. You can do this by thinking about how you view stress (step 1), how you can control your reaction (step 2) and how you can change your lifestyle to prevent or improve your coping skills (step 3).

Step 1 Assessment Step 2 Action Step 3 Restore

Change how you think about the stressful situation:

· What scares you?

· Recognize that you feel this way and that it is normal to feel this way considering all you have been through.

·  Examine your thoughts. Where does this feeling come from?

· Recognize that you feel this way and it is normal to feel this way consider all you have been through

· Practice self-compassion by acknowledging it is okay to feel this way.

If you cannot change how you think about the stressful situation, control your reaction using:

· Breathing exercises

· Meditation techniques

· Physical exercise

· Yoga

· Mindfulness (mindfulness is in the first column but there are many mindfulness techniques)

Adapt your lifestyle to help build and develop good coping skills:

· Do not be afraid to ask for help from family, friends, or your clinic

· Have regular time for yourself (don’t feel guilty about taking an afternoon off once in a while)

· Eat healthier with a diet full of fruits and vegetables and in appropriate quantities – take the time to enjoy your food

· Practice good sleep patterns

· Prioritize self-care

· Listen to your body’s physical and emotional needs
  1. Balance your perspective: Listen to your body and remember that is has a unique way of coping. It is important to challenge unhelpful or worrying thoughts about your health. You can do this by acknowledging that it can take months to ‘feel normal’ after a kidney transplant. It is also important to remember everyone’s transplant journey is different so don’t compare yourself to other patients. Try to write down any questions or issues you are experiencing related to your emotional or physical health and share them with people you trust such as your family, friends or medical team.
  1. Take control of stress: After the transplant, this suggestion can be a difficult attitude to adopt, mainly because you still don’t know for sure your physical and psychological limits. You may have to experience failures and gains to find out. When possible, you should avoid the extra stressful situation, however that is not always possible. Simple solutions can help to reduce stress. Ask yourself did you have enough time, information and support? If not, create a healthy environment by setting boundaries and maintaining a good work-life balance. Jot down your thoughts when you think of them, create lists, or maintain a calendar to help keep organized and to lower stress. Take extra care to ensure your tasks do not pile up. Remember, stressful situations happen and there is little we can do to avoid them. What we can do is control our reaction to stress. Don’t take things personally. Stress is just a message that something is wrong. Find out what that message says – what is wrong? Only you know or can talk about it. Remember that for every problem there is a solution. You can learn specific techniques to manage stress and relax. Techniques can include breathing exercises, meditation or yoga.
  1. Practice mindfulness: Many life events are stressful and unfortunately cannot be controlled. This is true for people living with kidney transplants and for others. Your kidney transplant can be managed effectively by maintaining a healthy lifestyle and taking your prescribed medications, but new symptoms can still develop. It is important to acknowledge that you may not be able to prevent something like this from happening. In addition, your transplant will not prevent stress caused by your health. By practicing mindfulness and sharing your feelings, you can reduce your stress levels.
  1. Self-care: Be kind to yourself, you have been through a lot! Be proud of how far you’ve come. Take time out to properly look after yourself. Self-care implies choosing yourself first and making healthy choices, such as maintaining a regular sleep habit. You might need to speak to your family doctor about other medication to help you feel less stressed, but you can also learn new techniques to manage stress and relax. Techniques can include breathing exercises or yoga. Be patient and set realistic goals. Be involved in things that bring you pleasure and remember to take things slowly, especially when you are first recovering. Don’t put too much pressure on yourself!
  1. Get additional support: You might feel you need practical support after a kidney transplant such as advice on employment, training or benefits. Speak to your kidney transplant team or healthcare professional about where to get local support and other helpful resources. You can also reach out to patient advocacy organizations. You may feel you (and/or your family) need more psychological support. Talking to your specialist nurse, family doctor or another member of your transplant team might help. Your kidney transplant team or family doctor can also advise if you need to speak to a specialist who is trained in assessing and treating psychological problems.
  1. Do something different: Your kidney transplant allows you to regain your independence and control over your life. Why not try out something new? Taking part in meaningful activities and hobbies within your physical abilities will improve your emotional well-being. Think about inspiring others by sharing your story and reach out to other transplant recipients that have similar experiences. Your experiences will help raise awareness about kidney disease and organ donation. Connect with others. Try to be more sociable by joining local community or support groups. Consider writing an anonymous letter to your donor or their family. Or revisit previous goals or an old hobby that brings you joy.

How can I do it?

You can do many things on your own to support your emotional well-being, for example:

  • Keep active
  • Practice self-love
  • Adhere to the 4 Toltec agreements (Ruiz, 1997):
    • be impeccable with your word,
    • don’t take things personally
    • don’t make assumptions
    • always do your best
  • Use relaxation techniques such as yoga
  • Disconnect from technology
  • Practice mindfulness
  • Keep a healthy diet
  • Maintain good sleeping habits
  • Seek support from friends, family or trusted support groups
  • Focus on your emotional learning and strength and be proud

Note: Exercise is a great tool for improving your emotional well-being and there is growing evidence that physical exercise in kidney transplant patients is helpful and safe. However, it is important to discuss exercise with your transplant healthcare professional first, who can advise on the most appropriate level of physical activity to suit your stage of kidney care.

Another tip: by breaking down your actions you will make your goals more achievable. SMART goals are really helpful and there is a SMART goals worksheet available here. For example, you might want to be more physical active after your kidney transplant. Below we have broken down the action into a SMART goal. Or, you can simply add your actions and goals to a calendar.

  Tips My goal
Specific: what you want to achieve and the steps you will take to do it. What, when and why am I doing this goal? I would like to start exercising to feel better about myself after my transplant recovery is over.
Measurable: how you will know when you achieve your goal. How will I track my progress? I will start walking to work instead of driving.  
Attainable: that your goal is possible How will I meet my goal? I will buy new running shoes for walking to work.

More Information

This section was written by Dr Clare McKeaveney, Research Fellow, School of Nursing and Midwifery- Queen’s University Belfast, Northern Ireland/UK.
And reviewed by Nicolas Fernandez (Patient partner); Rosalie Fernandez (patient-partner), Colin White (National Projects Manager, Irish Kidney Association; member of the Board of the World Transplant Games Federation and the European Transplant & Dialysis Sports Federation); Amanda Grandinetti (MPH); AND by our research team.

References

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  2. Chilcot J, Spencer BW, Maple H, Mamode N. Depression and kidney transplantation. Transplantation. 2014;97(7):717-21.
  3. Shetty AA, Wertheim JA, Butt Z. Health-related quality of life outcomes after kidney transplantation. In Kidney transplantation, bioengineering and regeneration, 2017 (pp. 699-708). Academic Press.
  4. Silva AN, Moratelli L, Costa AB, et al. Waiting for a kidney transplant: association with anxiety and stress. Transplant Proc. 2014 Jul-Aug;46(6):1695-7.
  5. Van Sandwijk MS, Al Arashi D, van de Hare FM, et. al., anxiety, depression and quality of life in kidney transplant recipients, haemodialysis patients, patients with a haematological malignancy and healthy controls. Nephrology Dialysis Transplantation. 2019;34(5):833-8.
  6. Yagil Y, Geller S, Levy S, Sidi Y, Aharoni S. Body-image, quality of life and psychological distress: a comparison between kidney transplant patients and a matching healthy sample. Psychology, health & medicine. 2018;23(4):424-33.
  7. Lindqvist R, Carlsson M, Sjödén PO. Coping strategies of people with kidney transplants. Journal of advanced nursing. 2004;45(1):47-52.