This article explores the patient experiences in the three years following heart transplant, based on two studies, and demonstrates how a change of management strategy towards aiding the patient in mastering uncertainty could pave the way to improving patient outcomes in the future.
Heart transplantation is heralded as the most effective therapy for patients with end-stage heart failure. Life expectancy post-transplant is now at an all-time high with heart transplant recipients expected to live for 11 years.1 It is undoubtedly one of the most significant and life-changing medical interventions, covering a vast canvas of emotions in addition to its physical implications.
Despite this, optimal patient outcomes are not always achieved as the management of these transplant recipients does not necessarily align with their needs. With extended survival comes greater challenges for patients in everyday life, particularly given the strong emphasis of healthcare professionals on self-management,2 and it is critical that patient care reflects this.
When exploring symptom frequency, there has been a strong correlation between psychological issues and high symptom distress in heart transplant patients.2 Distress is common among heart transplant recipients and studies have indicated that as many as 88% of these patients may be affected.3 While both psychosocial factors and physical health are associated with increased distress, the causes and impacts of this have previously been unclear.
According to the model of uncertainty developed by Mishel,4 the cause can be largely attributed to the sense of control that transplant recipients wish to have over their health and everyday life.5–7 Despite the importance of social and healthcare support to the health and wellbeing of patients, this does not appear to be factored in enough when managing heart transplant recipients.
Heart transplant recipients after one year
Results from a recent study have shown that heart transplant recipients suffer greatly from distress one year after transplant.8 They worry considerably about the viability of their new heart and few felt that they had fully recovered with the majority perceiving themselves as being unhealthy. They fear complications, such as cancer, diabetes and infections, and placed high emphasis on test results being consistent with their own health experiences. They frequently thought that they were not doing enough, despite following the recommendations set out by healthcare professionals, which meant that adjusting to their situation became more challenging. Comparing their current situation with their lives pre-transplant was often distressing, and further hindered their progress.
The role of the family proved problematic too. Certain patients reported that their spouses expected them to feel better, and there was a general sense that family believed that the patient was now ‘cured’, and that normality would resume. This lack of understanding compounded issues around patient morale and uncertainty regarding their relationships.
There was a general difficulty in accepting their new circumstances. Many expressed that they lacked support and education from healthcare professionals in order to master their situation. Some felt that they were not taken seriously by healthcare professionals, which resulted in a sense of being abandoned. There was a clear need for psychological support to help with adjustment. Patients also felt there was limited support for relatives.
Heart transplant recipients after three years
Results from a follow up study at three years after heart transplantation showed that patients were more positive and grateful for a second chance in life.9 Time was a key factor for being able to move on and patients adapted by eventually accepting that they would never be fully restored. A shortened life expectancy was now viewed as a driving force for making the most of their time. Living on a day-by-day basis and focusing on the essentials in life became paramount while long-term planning was avoided. Patients gradually let go of uncertainty and increasingly trusted the heart, growing in confidence whilst no longer worrying about rejection.
Surviving the transplantation while others did not also motivated patients to take better care of their heart. Promoting donation and presenting the patient perspective at various professional meetings created a positive feeling of giving something in return.
The three years following transplant involved adapting to setbacks, side effects and complications mainly related to their medication. Despite being a time-consuming and stepwise process, patients with persistent physical limitations began to accept their changed state. This proved challenging given they had to cope with difficulties such as becoming quickly out of breath or being unable to fully exercise. Physical limitations could also mean that they were unable to resume full time work. The emotional impact was also felt and required adaptation to mental fatigue. Patients continued to experience problems with decreased cognition and impaired short-term memory that also affected work.
The impact of transplantation on social life was considerable. Surviving meant feeling alone and acknowledging the fact that people around them could not fully understand what they had gone through. At the same time, they wanted to be independent. Families took care of patients, however transplant recipients recognised that this was demanding for relatives without being a part of the transplant process and subsequent support.
Additionally, transplant recipients turned to patient organisations and peer support. Hearing about the positive experiences of others drove hope and confidence. Conversely, annual follow-ups and biopsies reminded patients about their pre-transplant disease which triggered negative feelings about their health situation. Experiencing sometimes unrealistic expectations of recovery from others also caused uncertainty.
A framework for improving adaptation in heart transplant patients
It is notable that after three years transplant patients had developed useful approaches for coping with disappointments and unmet expectations, gaining insight and confidence in their own capabilities. Achieving satisfactory performance levels made it easier to master setbacks and complications without losing too much self-efficacy. Consequently, the conditions for self-management are better after three years than after one year.
If healthcare professionals and the patients’ social network continue to strive for control and predictability, the patient’s ability to adjust is hindered and the transition prolonged, particularly during the first year following transplantation. The current management approach might be problematic due to its emphasis on self-management support. By focusing on the behavioural aspects of chronic illness management, the root cause behind the behaviour could be neglected leading to potentially less-effective interventions. Uncertainty should be recognised as a natural state that occurs when a person suffers from a condition that changes their world view. Ensuring transplant patients are well conditioned to adapt to their new circumstances is in many ways equally as important as the transplant itself.
Within medicine itself, there is an implicit expectation that the cause of an illness can be determined with certainty and that the illness can be controlled. It is hardly surprising that patient experience has typically reflected this way of thinking. Patient management and care need to be developed to better support the patient so that, instead of relying on unrealistic expectations, they can focus on accepting their situation and the unknown, as well as on what can be achieved. This is where the greatest sense of satisfaction can be derived and how social function can be reconstructed.10–13
Conclusion
There is a need for change. It should be mandatory to focus on psychosocial support for heart transplant recipients to help streamline the adaptation process towards mastering uncertainty in the years following transplant. A multi-professional team is required in order to help the patient in their physical, mental, social and existential transition. Lastly, we must reconsider concepts such as ‘recovery’ and ‘returning to normal’ to reflect this refined approach.
This article explores a key area of development in transplant nursing as part of the build-up to ESOT Congress 2021, which takes place from 29 August–1 September 2021, and in celebration of the Year of the Nurse and the Midwife, which is currently ongoing.
Author
Anna Forsberg RN PhD
Professor of Transplant Nursing, Lund University, Sweden; and Chair of the European Transplant Allied Healthcare Professionals Committee at European Society for Organ Transplantation (ESOT)
References
- Lund LH et al. The Registry of the International Society for Heart and Lung Transplantation: Thirtieth Official Adult Heart Transplant Report – 2013; focus theme: age. J Heart Lung Transplant 2013;32:951–64.
- Devito Dabbs A et al. Promoting patient and caregiver engagement in self-management of chronic illness. Nurs Res Pract 2013;2013:180757.
- Ross H et al. What they say versus what we see: “hidden” distress and impaired quality of life in heart transplant recipients. J Heart Lung Transplant 2010;29:1142–9.
- Mishel MH. Reconceptualization of the uncertainty in illness theory. Image J Nurs Sch 1990;22:256–62.
- Monemian S, Abedi H, Naji SA. Life experiences in heart transplant recipients. J Educ Health Promot 2015;4:18.
- Sadala ML, Stolf NA. Heart transplantation experiences: a phenomenological approach. J Clin Nurs 2008;17:217–25.
- Lin CS et al. Dark-recovery experiences, coping strategies, and needs of adult heart transplant recipients in Taiwan. Transplant Proc 2010;42:940–2.
- Almgren M et al. The meaning of being in uncertainty after heart transplantation – an unrevealed source to distress. Eur J Cardiovascular Nurs 2017;16(2):167–74.
- Almgren M et al. The meaning of surviving three years after a heart transplant – A transition from uncertainty to acceptance through adaptation. Int J Environ Res Public Health 2020;17(15):5434.
- Mishel MH. Uncertainty in chronic illness. Annu Rev Nurs Res 1999;17:269–94.
- Cavallini J, Forsberg A, Lennerling A. Social functioning after organ transplantation – An integrative review. Nord J Nurs Res 2015;5:227–34.
- Forsberg A et al. The meaning of social adaptation after solid organ transplantation. Nord J Nurs Res 2016;36:62–7.
- Forsberg A et al. The core of social functioning after solid organ transplantation. Scand J Caring Sci 2016;30:458–65.
