‘Radical acceptance helped me on my live donor journey’

When my father was diagnosed with kidney failure, my family's world changed. Considering survival rates, rehabilitation and quality of life, we felt that live kidney transplant was the best option. My sister and I opted to become live donors for our father, and a year-long process of what felt like endless appointments began. 

I was living and working as an Assistant Psychologist far from my home, and I had to balance these hospital appointments with my work. It was challenging and stressful, particularly at the start. But I feel that my role has had a positive influence on this journey.

Kidney failure options

In the UK, around 5,000 people are waiting for a kidney transplant at any time, yet only around 3,600 transplants are carried out each year. The average wait for a deceased donor kidney transplant in the UK is 2-3 years; the average wait for a living donor kidney transplant is 3-6 months. During this wait, or if receiving a donor kidney is not possible, the treatment is for patients to receive life-long dialysis.

Dialysis is necessary for survival, but tends to have a negative impact on a person's quality of life. Several studies have reported kidney dialysis complications such as increased fatigue, sleep disorders, malnutrition and pain (Mollaoğlu, 2013; Dąbrowska-Bender et al., 2018; Cox et al., 2017). Dialysis treatment can be exhausting and require frequent visits to the hospital, which can affect the social and professional aspect of a person's life (Zazzeroni et al., 2017). Psychiatric disorders are also common among kidney dialysis patients, with depression and anxiety as the main issues (de Alencar et al., 2020). 

Deciding to be a donor

When I learned my father's condition had deteriorated, I had an initial period of emotional pain before I processed the reality of the situation and the treatment options available. Having learnt and delivered Dialectical Behavioural Therapy (DBT) as an Assistant Psychologist helped – specifically, the idea of radical acceptance. I understood that being in a state of denial and rejecting reality would have further negatively impacted the situation, as well as my mental wellbeing. 

Through radical acceptance, I felt better able to hold in mind and weigh up the pros and cons of being the donor in the short-term and long-term. Looking back, I think I was able to consider both my emotional and rational mind, and to integrate my personal beliefs and values, in making such a decision. 

Our family values were important too. I wanted to prioritise the health and wellbeing of my sister as well as my father. Despite being reassured by the team's competence, and the surgery being one of the more common forms of transplant, I did not feel comfortable with my sister enduring the risks. I think that's grounded in my Nepalese culture. Festivals such as Tihar are celebrated in my household every year, and an important part is Bhai Tika, where brothers and sisters worship each other in a special way. The sister prays for their brother to have a long and prosperous life. As a way of expressing gratitude for the protection brothers provide, the sister puts 'Tika' on their brother's forehead. Growing up celebrating such festivals heavily influenced my identity, and how I see my role within the family to be a 'protector'.

Impact of Covid

Two weeks before the scheduled surgery, I tested positive for Covid-19. The surgery was delayed for several months, and my father had to start dialysis as his kidneys had deteriorated further. A whole lot of difficult emotions were exacerbated by the unexpectedness of the whole situation. Again, I think my journey as a Psychologist helped me here.

Firstly, having a high level of gratitude helped. Working as an Assistant Psychologist, I often felt inspired seeing the resilience that many service-users had after hearing their difficult experiences and stories. This helped me reframe my situation – despite being in a difficult position, I felt grateful I was able to do something to help my father. At least he didn't have a condition where I would have no control or power to do anything. 

Secondly, I thought of Viktor Frankl, and how he spoke about how it is within everyone's power to find meaning in their lives regardless of the circumstances. Frankl taught that everything can be taken, but there's a human freedom to choose one's attitude in any given set of circumstances. This was useful when faced with the delay in surgery – the initial powerlessness I experienced dissipated as I shifted focus to the areas I could control. I focused on continuing meaningful activities alongside my live donor journey, and that helped prevent me feeling overwhelmed by the process.

Challenges and a deepening understanding

Working in the adult community mental health team, I was exposed to many different traumatic and challenging experiences on a weekly basis. Service-users would share very traumatic periods of their lives during assessments or sessions. Over time, exposure to such experiences started to take a heavier emotional toll on myself than usual due to many different reasons – perhaps mainly the worry and stress I was dealing with outside of work. 

These moments of vulnerability and periods of difficulty shared by service-users often reminded me of the journey that my father had been on over the last few years. Some of the service-users had experienced major health concerns in the past or was experiencing some sort of physical health difficulty during their period of assessment/intervention. Reminders of my father's situation were always there. 

In turn, I think this increased my empathy and understanding around the struggles that some service-users experienced. I've been able to develop better therapeutic relationships with a range of different service-users. I've also gained a deeper understanding of the importance of being a reliable, caring and honest healthcare professional. Having the live donor specialist nurse present from the very beginning of this process eased a lot of my anxieties. She explained it all, co-ordinated most of the appointments up until the transfer to the surgical team, and was just present. I felt comfortable approaching her and asking anything that came to my mind. 

When I arrived in hospital the day before the surgery, I felt a mixture of emotions – happiness as the surgery was finally going to happen, anxiety as this was my first time having surgery and I'd heard stories of surgeries going wrong. The trust I had developed during the meetings with the professionals looking after my father's care and mine was crucial here. This trust also eased my anxiety after my surgery, waiting to hear about my father's transplant operation… I could do nothing but hope that the operation would go smoothly. 

Having drawn so much from my journey as an Assistant Psychologist, this was payback time. I better understood the qualities we need as healthcare professionals, and the importance of developing a good relationship with service-users.

After a year following the surgery, my father and I have fully recovered and returned back to daily living. Seeing such a positive change in my father following the surgery has made this entire journey worthwhile.

• Bibek Tamang is an Assistant Psychologist in Older People Mental Health at Cefn Coed Hospital and Tonna Hospital 

References

M. Mollaoğlu (2013). Quality of Life in Patients Undergoing Hemodialysis.

M. Dąbrowska-Bender, G. Dykowska, W. Żuk, M. Milewska, A. Staniszewska (2018). The impact on quality of life of dialysis patients with renal insufficiency. Patient Prefer Adher., 12, pp. 577-583.

K.J. Cox, M.B. Parshall, S.H.A. Hernandez, S.Z. Parvez, M.L. Unruh (2017). Symptoms among patients receiving in-center hemodialysis: A qualitative study. Hemodial. Int., 21, pp. 524-533.

L. Zazzeroni, G. Pasquinelli, E. Nanni, V. Cremonini, I. Rubbi (2017). Comparison of quality of life in patients undergoing hemodialysis and peritoneal dialysis: a systematic review and meta-analysis. Kidney Blood Press Res., 42, pp. 717-727.

Alencar SBV de, de Lima, F.M., Dias L do, A., Dias V do, A., Lessa, A.C., Bezerra, J.M., et al., 2020. Depression and quality of life in older adults on hemodialysis. Brazil. J. Psychiatry 42, 195–200.