Estimated reading time: 14 minutes
Managing long term conditions as a patient and a Nurse. Alceina’s story provides a unique perspective on how we can support patients to feel well in all respects.
I explored Alceina’s journey to uncover the story behind the patient that helps us to understand and connect with the person needing dialysis treatment. Like many others with CKD, she has had much to contend with. To hear a part of someone’s passage through life is a humbling experience but one that leads to a greater level of compassion for those we care for.
Notice the episodes of support that Alceina received interspersed throughout her story and the effect this had on her feeling ‘cared for’ and being able to ‘take back control’. Consider what provided her with the strength to cope? What expertise does she have to share both as nurse and a person living with a long-term condition?
In pursuit of a nursing career with diabetes
At 23 years of age, Alceina remembers feeling that she was in the prime of her life, excelling in her nurse training, and “feeling so at home delivering hands on care”. She was “loving every second of it”. Whilst preparing for her final examinations, she was diagnosed with type I diabetes following an acute auto immune response. She had a family history of diabetes and was already predisposed to developing type II. Initially she felt relief that some of her symptoms could be explained by the diagnosis, but this was followed by a real fear that her bright future as a nurse and having her own family could be in jeopardy. The impact of her diabetes knocked her confidence and made her question whether she could continue her career. Well supported by her tutor, close friends and fellow student nurses within a small hospital, she felt encouraged to continue. Whilst commencing insulin therapy, she was determined to sit her final exams and was successful in qualifying as a general nurse. She became “self-sufficient”, working hard to control her life and protect her career. Her parents not fully understanding of her diabetes care were nervous of her dietary needs. Not wishing to burden them with worry, she managed her condition discreetly with the support of her fiancée. Controlling her health was not easy due to shift work and lack of a regular routine. Having medical appointments at an alternative hospital to the one she worked in helped to separate her medical care from her career. A year into being qualified, Alceina received an encouraging nudge from her matron who reassured her that there was no reason why her diabetes should hold her back and she could pursue her aspiration to become a midwife. This provided a much needed confidence boost and within a few years, she had qualified as a midwife, was married and applying to do a master’s degree. A diagnosis of polycystic ovaries, related to her diabetes explained some of the abnormalities she was experiencing. Having been advised she may not be able to have her own family, she was subsequently surprised to become pregnant. Unfortunately, the elation was short lived with a miscarriage Alceina describes as “The first and biggest loss in my life”.
It took three years to get over this with much counselling and self-care. Her new focus took her away from her career whilst she concentrated on her ambition to carry a baby to full term. She entered a pre pregnancy programme, attending a joint clinic with an obstetrician and diabetologist. Working as a team, they maintained good control of her diabetes and Alceina felt that they were doing everything they could together to optimise her chances. She describes the feeling of working in partnership with the medical staff as a really positive experience and gave birth to her daughter Rhianna in 2008.
A job-sharing post enabled her to return to work in a part time role. Alceina became involved in the development of the Nurse Degree programme representing ‘the voice on the ground’ thus subsequently shaping the new competency-based assessment model for student nurses. Within this role, she was able to share and influence practice. Providing support and building confidence in others felt a very natural and rewarding extension of her career. “All I ever wanted to do was care, teach and share”. Her aspiration was realised with a part time post as a practice development facilitator. This role involved supporting students and managing international cohorts of qualified nurses who were undergoing adaptation to work in Southern Ireland. Alceina moved on to work full time as education lead for overseas nurses across several hospitals. She later returned to working in her home unit in practice development with a focus on examining and updating policies and guidelines for clinical practice.
Coping with loss on top of living with diabetes and managing a career
Between 2012 and 2013 Alceina suffered significant family trauma. Her mother-in-law passed away and she split with her husband of 13 years. Her mum, who was a great source of support to her during this time, then received an unexpected diagnosis of lung cancer. Alceina took time off work to care for her from her diagnosis in 2013 until she died just four months later. During this traumatic period of her life, Alceina describes herself as “falling apart”, she was on anti-depressants and her diabetes was “barely controlled” as she paid little attention to her own health. New direction and focus came through the diabetic specialist nurse when she needed support to get her own health back on track. She recommended a GP who could provide a compassionate approach to suit Alceina’s needs for this period of time. Having been through so much personal trauma, the GPs personal style was most welcomed and together they nurtured her through this difficult time so that she was able turn to work in her practice development role.
Chronic Kidney disease, Haemodialysis and the complexity of transplantation
Three years on, Alceina became physically quite unwell with a series of infections and complications that included her kidneys deteriorating. She noticed she did not have enough energy to walk upstairs and was struggling with daily activities. whilst focusing on managing her diabetes Alceina recalled that “I just was not clued in to asking about my kidneys” Despite it being suggested that she may need long term dialysis, she had been paying attention to the symptoms that were improving with antibiotics and felt that she was recovering. She had not recognised the severity of her renal disease and was still working full time when her consultant shocked her by suggesting she look to transplantation as an option for long term treatment.
It was suggested she may not need to have dialysis therapy if she could find a living kidney donor. Her three siblings were all willing to be tested but only her youngest brother in Southern Ireland was a match. During the transplant work-up phase he became an expectant father of twins. Despite this news, the plan was still to go ahead to complete the transplant before the birth. Alceina’s health was generally deteriorating and a period of annual leave made her realise that she had been pushing herself too hard when she felt exhausted. Although her work was flexible, she struggled to maintain her normal work pace and felt physically and mentally unable to perform to her usual standard. It took a colleague to check in with how she was and to give her ‘permission’ to not be ok until she agreed to having a break from work until she was successfully transplanted. Although she had struggled to work, being away from it was lonely. Alceina felt the loss of her colleagues and the structure of work life. Her new routine became getting her daughter to school, then sleeping during the day “to have the energy to be a mum” when her daughter came home.
Complications with the pregnancy of her brother’s partner meant putting the live transplant donation process on hold for a while until their situation was more stable. Alceina commenced haemodialysis as a temporary measure. Unfortunately, this was further delayed by the Covid 19 pandemic. When the exploration process for work up was restarted, there were problems with her brother’s own physiology which meant the operation was much more complex than first thought. Alceina took the difficult decision to not proceed any further. She did not want to risk compromising her brother’s health and the future of his own family. She was devastated losing her future vision and with no plan, felt a sense of panic. Having thought that haemodialysis was only going to be for a few months, it was now a stressful two years later. It was a tough time overall, with little income and increasing costs for medication and healthcare. She describes feeling “beaten by life”. Her nephrology consultant was instrumental in understanding what was important to maintain her mental and physical health and helping her to find some hope. “She recognised me as an individual but also valued my knowledge as a nurse. She saw me as a whole person and made me feel cared for.” This partnership provided the support to explore the option of being on the double kidney pancreas transplant list or the single cadaver kidney transplant list. She was advised that the best option was still to have a live donor kidney. She decided to pursue this and remain on the double transplant list.
Another period of illness with four admissions to hospital over six months, Alceina was diagnosed with pancreatic enzyme insufficiency which prevents her from absorbing food. She also suffered from an extreme period of vertigo causing excessive vomiting and admission. These fortunately resolved with hospital treatment and ongoing supplements with meals to replace her pancreatic enzymes. Alceina’s recovery was further supported by introducing pump administration of insulin along with a sensor to monitor blood sugars. This gave her much better control of her diabetes. Despite the improved control she has since suffered a bleed and clot in her left eye resulting in some occlusion of sight. Although she can still see to drive, reading is an inhibiting problem and felt like another blow to her confidence about her health. This whole traumatic period in her physical condition, left her feeling very battered, vulnerable and hopeless.
A new focus presented in 2021 when further explorations within the family suggested it may be possible for her elder brother in Australia to donate his kidney. His willingness to move to southern Ireland for six months meant that work up could proceed co-ordinated by transplant leads in both countries. Alceina was hopeful but understood from the previous experience that there are many stages and potential hurdles in the way of a successful outcome. Her priority was to remain well in the meantime. Her brother too turned his full attention to being as healthy as possible for this process and she heard how he was really putting effort in and valuing the importance of taking care of himself to support her. “It opened a door for him to live a healthier life for himself whilst also doing this for me”. Alceina was told that if she received a living donor kidney, the chances of receiving a pancreas transplant were much better and she would be given higher priority within a year of the kidney transplant to increase her chances of successful double outcome.
Learning to live with Haemodialysis
During the latter half of 2021, there was a distinct improvement in Alceina’s health. She felt thankful for feeling well and for not having to struggle to get through each day. This enabled her to settle and become more accepting of life on haemodialysis as the new norm. She described being hugely grateful for the staff providing her care. She was taking better care of her own needs and learning not to not push herself as much by resting after dialysis rather than trying to ‘be normal’ as before. “Days off between dialysis are for that”. She paced herself and stopped feeling guilty for taking it easier, asked for help and was honest with others about what she able to commit to.
Another significant influence in her wellbeing was a change in her dialysis time. Having been on an evening shift to accommodate her life initially, this was no longer working for her and she changed her time slot from evening to afternoon. This made a real impact on her general mood and she found that she was able to visit family or friends after her treatment and not feel so isolated. The change meant mixing with a new group of patients many of whom were older, more dependant and had been on dialysis for a long time. The exception was a lady who had also changed to the afternoon shift. Initially she was someone who Alceina could share dialysis conversations with but who soon became a firm friend. Finding someone to connect with who understands dialysis, helped make treatment days more acceptable. The two of them had a bond through companionship and support for each other. The value of peer support was illustrated when Alceina talked about sharing a taxi drive to treatment and learning most of what she needed to know from another patient during the thirty minute journeys. Peer conversations provided the personal tips the staff did not talk about or share and were such a valuable resource for when she started.
Early in 2022, the work up for a live transplant from Alceina’s brother in Australia revealed some underlying health issues for him. He too was found to have raised blood glucose along with high blood pressure. With a family history of Type II diabetes, it was not advisable to pursue donating one of his kidneys to his sister. Again, this was a real blow to Alceina despite her reservation about the success of this latest option, she had still clung on to chance of a working kidney. She described the heaviness in her chest at receiving the news along with a sense of hopelessness again. This second time however, the devastating feeling of loss did not last. After a couple of days, she felt she could pick herself up and reach out to family for support. This along with a feeling of gratefulness for being ok on dialysis treatment contrasted with the struggle she felt the first time when her younger brother’s process of donation was unsuccessful. Her relationship with her brothers had clearly been strengthened and there was a stronger emotional and supportive bond with them. The work up for transplantation had helped them to understand their own health and know what their sister had been coping with.
Reflections on wellbeing and shared care
Reflecting on what has helped and changed for Alceina, she talks about realising that throughout her challenging life of health issues, she didn’t spend so much time looking after herself and she has now learned to pay more attention to self-care that enables her to cope. She now rests when she needs to without feeling lazy so that she can heal, support and be kind to herself. Through recalling her story, she said that she feels sad for the person she reads about but can also appreciate just how far she has come and how resilient she has been. “I am very proud that I can now look after myself”
Alceina described participating in her own care as invaluable for wellbeing.
“It is being part of a two-way conversation and not just being told, participating rather than just waiting for nurses to come to you. When it is your body and your treatment, it can feel quite invasive, violating and overpowering when tasks are done to you. When you are involved, you are more in control and there is a feeling of openness in the interaction that replaces the sense of nervousness and fear. When I was asked to be participate in the shared care course with staff, I was so excited. I felt included and welcomed. I just knew it was for me and I was so positive about how I could use my experiences both as a patient and a nurse to help. It made me feel so valued that it was as important for me to be there as it was the staff. This was what I had missed and it lit a fire”.
It is important for Alceina to care, teach and share what she knows and has experience of. This is apparent throughout her life as a nurse. “I feel I have had this big journey and now want to hold my hand out and help others”. She has recognised her skills in listening and sharing to support others, “It is what I am good at. The combined experience of being a nurse and a patient with long term conditions has given more depth to my interactions and is taking me onto a different path. I have a deeper understanding now through my journey and it gives me a sense of wellbeing and great satisfaction to interact with others whether they be healthcare professionals or other patients. I feel rewarded by this and recognise my passion and drive is still there”.
Alceina remains on the double transplant list for a cadaver kidney and pancreas. Funding for her job in a practice development role remains for after a transplant if she wants to return part time. She continues to support others by sharing her expertise at shared care forums and focus groups with the potential for taking this further in the future to fully utilise her skills as a person with lived patient experience to share.
By Tania Barnes, Shared Haemodialysis Care Lead with Alceina O’Brien