Preparing for and adjusting to significant life events can lead to a broad range of often fluctuating emotions. This can become stressful at times and place demands on our coping skills. Some strategies that may have been effective for many years may not continue to be as effective in new situations, such as having a liver transplant. There can be several reasons for this including:
- Previous life events / mental health problems
- Difficult experiences during the wait for or after transplant
- Side effects of medication
Some of the signs when someone is struggling might include: fear, anger, poor concentration, social withdrawal, lack of motivation, trouble sleeping or concentrating, lack of purpose and guilt. Though some of these emotions are quite normal, if they persist, they may become problematic.
When psychological wellbeing suffers, it can be helpful to see your GP to consider prescribing options such as anti-depressants. This should always be done in consultation with your consultant Hepatologist.
There are some self-help resources listed below that you can also consider. Some people prefer talking therapy and this can help to manage situations in a way that helps to reduce the emotional impact of stress. If you are not sure, you could ask your GP or a member of the team for advice.
After a significant event, such as liver transplant, there may be a natural period of adjustment. This can be when you are adapting to the changes in your physical health and processing your experience.
It is important to realise that this period of adjustment may continue for the first few weeks and months. Additionally, the medication that you are taking may affect how you are feeling. However, if you have significant concerns please do speak to the team / refer to some of the suggested resources overleaf.
Some Factors That May Impact on Psychological Wellbeing
Staying in hospital can be stressful at times due to the length of stay, unfamiliar environment, distance from home and support networks, pain/discomfort, complications of surgery and new medications. The ward staff will be aware of this and can support you; speak to any member of staff if you are concerned.
Pre-existing Mental Health Problems
If you have previously experienced some difficulties with mental health, you may already be receiving support. It is important to let us know, so that we can help you plan for surgery, liaise with other teams, and offer additional support if needed. It is helpful to consider how treatment might affect things such as medication that you may already be prescribed by your GP or mental health team.
Medications and Mental Health
Anti-rejection medications are essential following liver transplant, and you should always take them as prescribed. They can also affect your emotions. This can lead to anxiety, depression, irritability, problems sleeping and confusion. Anxiety can also come from worries about remembering the medication regime, particularly once discharged from hospital. Pharmacy staff will support you with this.
Delirium is a state of confusion that can be caused by a physical condition and/or time in intensive care. There is a possibility that this can occur following surgery. The ward staff are experienced at supporting people if this occurs. If you are interested, here is more information on Delirium.
Depression and Guilt
Surgery is a significant life event and can impact mood for many reasons. This can relate to losses associated with ill health including, changes to employment, finances, role within family and social network, levels of occupational activity, hobbies, interests, and socialising. Though we would expect this to change over time, it may be that support is required initially to help process and adjust to these changes.
Typically, low energy and fatigue can lead to reduced levels of activity that can increase levels of guilt, hopelessness, and feelings of reduced effectiveness. A lack of occupational activity can leave time to worry, which in turn can maintain the focus on loss and negatively impact mood resulting in depression.
Considering medication to manage mood should always be discussed with your Hepatologist first. Talking therapies may also be useful. Thoughts about receiving a donated organ, feeling dependant on others, or blaming yourself for your illness can also lead to feelings of guilt and low mood.
Anxiety and Worry
Waiting for or receiving a liver transplant can lead to symptoms of anxiety. These may include symptoms related to your health, worrying about the future, staying in hospital, uncertainty related to waiting for test results or for the call to come in for transplant. Also, some people worry about not surviving transplant or the impact on other family and friends both emotionally and financially.
This process may mean that you feel less in control of events than usual which can be anxiety provoking. Thinking about future worries may also heighten levels of anxiety. The anxiety may be understandable and manageable but if you are struggling to cope, then we are available to support you with this.
Difficult experiences (stressors) can lead to powerful emotions. In trauma, these reactions are extreme and usually fit into one of these categories:
Reliving the trauma
Avoiding reminders of the trauma. This can be physical reminders, thoughts, or feelings. You might notice negative alterations in thoughts and mood / feel more tense and irritable than usual
These symptoms can be distressing if they persist over time and one way that helps to avoid this is by gradually speaking about experiences with members of your support network.
However, if the symptoms do persist in the longer term, then you should seek further support rather than try to avoid it. With an appropriately qualified health care professional, trauma work can help you to reorganise the memories reducing the emotional distress that comes with them.
Examples of events which may lead to feelings of anxiety or distress, which you may need to speak to someone about:
- ICU stay
- Complications – further surgery
- Delayed discharge
- Going home and feeling vulnerable
Psychology at the Royal Free Hospital
The liver transplant psychologist can offer assessments and short-term talking therapy for some of the issues listed above. Please talk to any member of the hepatology team who can make a referral if appropriate. This service can be offered either as an in-patient or out-patient.
Liver transplant co-ordinators (Available Mon-Fri 9am-5pm)
Addiction specialist nurses (Available Mon-Fri 9am-5pm)
Looking after yourself can mean attending to simple things that can otherwise, easily be forgotten about such as:
- Good diet
- Spending time with your support network
- Engage in enjoyable activities
- Occupational activity / structuring days / setting goals
There are also a range of on-line resources that can be helpful and that you can refer to for ideas if you have concerns. A good place to start is:
- Anxiety UK
- CCI: (Centre for Clinical Interventions)
- Depression UK
- The Free Mindfulness Project
- Get Self Help
- LLTTF (Living Life To The Full)
- Mental Health Foundation
- NHS Mental Health
- Samaritans Tel: 116 123 (free 24 hr helpline)
- Self Help Guides
- Stress a self-help guide
- Understanding the mind-body link
If you need additional support, it may be helpful to speak to either:
- A member of your Hepatology team
- Your GP for referral to local services including:
- IAPT (Improving Access to Psychological Therapies). Follow the link and enter your GP details to view your local IAPT service and the services that it offers
- If you were thinking of paying for therapy, you could consider Cognitive Behavioural Therapy – you can find a register of accredited therapists at BABCP (British Association for Behavioural and Cognitive Psychotherapies)
If you have concerns regarding maintaining your own safety, please either attend A&E or contact your local Crisis Team or Mental Health Single Point of Access.
It may be worth making a note of your local numbers now in case you need them in the future.
Thank you to Kathryn Rothwell CNS Leeds Liver Transplant Unit for allowing us to adapt this leaflet from work for Substance misuse Specialists in Liver Transplantation (SMSLT).