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This is an account of a turbulent journey that has shaped Tara's attitude and resilience towards her health...
Tara has a lively spirit and an engaging personality. She is an avid climber and had always aspired to work outside as an activity instructor. Her time spent time diving in Thailand, trekking around Peru and the jungles in Borneo gave her a taste for travelling. She also has a keen interest in science and hopes to pursue medicine one day.
At the age of 18, Tara was found to have high blood pressure and diagnosed with IGA nephropathy. It was predicted she would need long term treatment for end stage kidney disease within five to ten years. However, it was just two years later when the decision was made for her to have a pre-emptive kidney transplant from her dad due to a rapid decline in kidney function. Tara was in her second year of university studying bio medical science when it was put on hold due to her illness and subsequent surgery.
She had a disastrous and traumatic start to her renal journey, experiencing major problems with initial therapy. Despite this, she pursued a career as an outdoor activity instructor enabling her to lead group expeditions. She has since had a successful second transplant and worked as a patient advocate on many projects.
This is an account of a turbulent journey that has shaped her attitude and resilience towards her health, and has given her the confidence and personal experience to pursue a new path turning her trauma into way of supporting positive action for others.
Initial experience of Haemodialysis
The sudden failure of Tara’s kidneys at the age of 20, resulted in two weeks of urgent haemodialysis prior to her elective live donor kidney transplant. This initial exposure of dialysis treatment was far from straightforward and she experienced problems with allergic type reactions, hypertension and acute sensitivity to changes in her blood volume. Passing normal amounts of urine accentuated this and large volumes of extra fluid were necessary each session to maintain stability. The hypersensitivity, hypertension and close monitoring of her blood volume made it difficult and stressful for staff to manage which made it a particularly nervous and scary time for Tara.
First Transplant and back to Haemodialysis
The scheduled kidney transplant from her Dad went ahead but failed dramatically after only sixteen hours due to haemorrhage and renal vein thrombosis. Tara’s most vivid memory was that of the spasmodic pain which she talks about as being horrendous. When asked to score it out of ten, “It felt like a twelve!” She had a morphine pump to self-administer analgesia but despite using it as often as she could, “It never felt enough”.
Having believed she had left the trauma of her haemodialysis period behind, Tara had to make an uncomfortable return to the unit where staff expressed their surprise to see her there again; they were clearly expecting a successful transplant outcome. For both Tara and the staff it meant more problematic sessions, struggling to gain stability during her sessions. Tara and her family now had to face the prospect of her needing long term dialysis and deal with the traumatic failure of the kidney donation from her Dad that had been a promise of a return to normal life.
She describes the physical pain and psychological trauma of this period of time having a lasting impact on her life thereafter. Despite being offered counselling at the time, it felt inappropriate, too soon, too much to take in and a threat to her accustomed mechanism of coping. She was still dealing with the physical effects of the surgery! Coming from a science background she was more comfortable sifting through facts than delving into feelings. She was neither ready to acknowledge how she felt or willing to explore her loss as a way of helping her to get through. Unfortunately her adamant refusal of psychological support resulted in not being asked again. In hindsight, she feels it might have helped but it is only recently that she has been able to reflect on the impact of her trauma rather than describe it in terms of a series of events that she can emotionally detach from.
During this early stage of needing long term treatment, Tara was aware that her options now were to dialyse in-centre, to dialyse at home or to have peritoneal dialysis (PD). Drs stressed that PD was the best option to suit someone as young and keen on travel as she was. (Presumably it would also help to preserve her kidney function in terms of output). She went along with the advice and didn’t remember having much of a say about the direction she was being steered towards. Tara had her own concerns however with how PD would interfere with her life and in particular, visiting her boyfriend.
Life with her parents back at home on PD presented a new set of issues. Automated peritoneal dialysis overnight was problematic as she found the drain out process painful and the machine could not be adjusted sufficiently to reduce this and enable her to rest comfortably and get a good night’s sleep. She transferred to manual exchanges during the day. This enabled her to control the drainage process manually and reduce her discomfort. At home all day whilst her parents worked, she describes waking up with the sole purpose of getting her four exchanges done so that she could go back to bed. She felt isolated with no one to relate to about her situation. Going out to socialise was difficult. Being a small framed person, she was self-conscious of the effect two litres of peritoneal dialysis fluid was having on her body image. “I felt like I had a fluid baby”. She started to go without her dialysis when meeting friends and going to parties. This left her feeling unwell but was a choice to retain some social ‘normality’.
Tara started to retain fluid from the PD bags. This became severe and although she knew she was putting on fluid weight, it wasn’t showing in her ankles and her doctors were not convinced. Despite knowing her own body well, she started to doubt herself and believe that maybe it was body weight, just as they suggested. She felt she wasn’t being heard. She had no peers in the same situation to provide her with reference points, check out what was normal and give her confidence to speak up. Thinking back, Tara says she didn’t know she could ask for help. She describes feeling that she was struggling alone having to self-manage when she really needed more support.
Acute Episode and continuous haemofiltration
Tara’s blood pressure continued to cause problems on PD resulting in a seizure whilst she was staying away at her Grandma’s. She remembers being barely conscious as she was taken by ambulance and then waking up four days later in intensive care. She moved onto the high dependency unit for a further two weeks and was on continuous haemofiltration. This renal replacement therapy proved uncomplicated in comparison with her previous experiences of haemodialysis in the unit.
Peritoneal Dialysis to Haemodialysis
Following her recovery she restarted her peritoneal dialysis. Unfortunately her urine output had now diminished and PD was no longer providing an adequate dialysis. It was back again to the haemodialysis unit. “There was always something going wrong,” but never one for wanting sympathy, she just got on with it. She describes always having her brave face on. “What would being negative do?” She said she didn’t want to be that complaining person always moaning.
There was clearly a concern that the problems experienced on haemodialysis had not gone away. It was suggested that she try the Nx stage dialysis machine, normally reserved for training patients to go home to dialyse. This, like the filter in Intensive care, was gentler but meant more frequent dialysis. This seemed to suit her body and proved at last, a successful method of dialysing.
Home or unit Haemodialysis?
Tara was steered in the direction of home haemodialysis. Whether this stemmed from it being a natural association with the NX stage machine is uncertain. From Tara’s perspective, she was starting to feel safer and more stable than she had been for quite some time. When staff were encouraging her to have a fistula as a more permanent form of dialysis access, she was not keen. From her standpoint, her line was working and everything was feeling ok, so “Why rock the boat”? She lacked the same enthusiasm for the suggestion of going home to dialyse. The prospect of feeling isolated again with no other purpose than to dialyse was not attractive and coming into the unit was providing her with much needed company. She was relishing the camaraderie, the stability and purpose that in - centre dialysis gave her, enabling her to settle and get her breath back. This conducive relationship with staff was later to change from one of friendship to supportive colleague.
Dialysis was always a short term option for Tara. She never expected to be on dialysis long term, wanting to travel and climb again. However it took her a few months to come to terms with the decision to opt for another transplant. She describes not being scared so much of losing another kidney but of re-living the experience around the pain she suffered at the time. She needed to make the decision about whether she would risk this again. She remembers asking everyone she knew a lot of questions. It was not a clear path and she had a lot to consider including the effects on her parents but she did make the decision to go ahead with a pooled transplant with her step mum offering to donate a kidney.
Tara’s fluid status had stabilised, but she was unable to receive the normal medication regimen for anaemia as it was contraindicated with hypertension and seizures. A final seizure whilst on dialysis confirmed that she needed to stop the anaemia regimen and the coercive suggestions that she should dialyse at home ceased as a result of her general health. As a consequence however, her haemoglobin levels dropped and not only threatened her chance of a potential kidney from the transplant pool but made her progressively weaker whilst she waited for a new drug. She needed a wheelchair to get about safely. This was embarrassing particularly as Tara was putting on a brave front and didn’t want people to know she was unwell “I felt people would question why I needed it as if I was asking for sympathy. I used to get my line out so that it was on display to show why I was being pushed around.” In her dilemma, not wanting to be judged had the edge over not wanting sympathy in this scenario. A long-awaited anaemia replacement drug gradually took effect and a more sustainable haemoglobin returned along with a welcome return to independence and ditching the wheelchair.
Whilst waiting for the next transplant, Tara was dialysing on the NX stage machine, situated in the home dialysis unit, learning how to set up and manage it herself. The unit was fortunate to have a spare day room and Tara started to dialyse herself in there. It was a nicer environment, less busy, “It was so much more relaxed and I felt much less like a patient in there”. She felt settled and was gaining confidence in managing her own dialysis.
Although she was free to come and go at any time for treatment, Tara mainly stuck to her schedule due to transport restrictions. She could still have some flexibility to rearrange her dialysis around her life and it enabled her to go on a long weekend to London by dialysing just before and immediately after. She also took the opportunity to take her machine to Ireland to visit grandparents for Christmas. Despite these experiences of freedom, she remained grateful for not having the responsibility of being at home alone to dialyse.
Shared Haemodialysis Care
Initially shared care wasn’t the norm in Tara’s unit. Very few patients were doing tasks for themselves. She remembers seeing one person programming her machine and thinking “Should she be doing that? Is it allowed?” Tara was an unusual case in the unit carrying out most of her own dialysis. One of the benefits of shared care for her was learning how to take care of her access line. Tara was fiercely protective over it and this meant she could change her dressing at home when it was needed and no-one but her would touch it. Shared care meant that she was now able to be independent in-centre with the benefit of company. She describes having control over what she needed and feeling so much better. “Nobody knows you better than yourself” Physically she was doing well and her confidence improved. “I didn’t have the ‘fluid baby’ of PD or “A stupid tube flopping about; the neckline became quite cool”
Shared Haemodialysis champion
Already doing a lot of her own dialysis in-centre, she was a natural champion for shared care so when asked if she would be interested in being part of the team building a ShareHD programme within her unit, she was keen.
Participating in shared care and promoting it became her main focus. She describes coming to the unit as a job. “It was great, I loved it and for the first time I had something to get up for.” Tara was coming along to learning events as part of the team; seeing what shared care could do was a massive opportunity for patients she said and why wouldn’t the staff want to promote it? She became the patient that visitors to the unit were led straight towards. As an articulate advocate, she was able to demonstrate what it meant to her and how it could help others. Dialysing more frequently than most, she was able to chat to nearly all of the patients in her unit on each shift encouraging them to get involved. She was also participating in making videos and posters to help nurses teach patients. As the natural target champion, she became a familiar face to senior hospital board staff. Invited to attend one of their patient focus sessions, Tara talked about how shared care had changed her life.
She then used this opportunity to pitch the vision of a shared care room with carpet and ‘fancy chairs’; a home from home for patients who, like herself wanted a degree of independence whilst remaining supported in-centre. It would also serve as an area in which patients could come in to learn new skills. The chief executive was clearly impressed and keen to support this. Fund raising efforts driven with Tara’s motivation and enthusiasm resulted in a substantial monetary amount for designing and executing the new room.
Tara received a second transplant before this vision was realised.
The second transplant
This too was eventful and a frightening traumatic experience that could not have been predicted. Tara was heparinised prior to this transplant base on her previous thrombosis and unfortunately suffered a haemorrhage of her new kidney. With similar pain to her first traumatic transplant and a life threatening drop in blood pressure, she required emergency treatment to stabilise her for surgery and spent four days in intensive care. The kidney was saved but remains delicate and only working at 28%. “I would not want a third transplant. I don’t want to repeat that horrendous experience again”. Having “fought so hard not to die” Tara now wants to use the transplant to its greatest effect and not be ruled by the fear of losing it. She intends to push forwards and use mind over matter to maximise her physical abilities in sports such as her running to test her own physical strength and mental determination.
Post transplant from trauma to strength
Reflecting back she describes shared care as creating a bridge to everything else she has done that is patient related. She had so much exposure and became a familiar face within the renal world, particularly after her presentation at the Shared Care All Hands event when she told of her experience describing how important it is that those who want a degree of independence have the opportunity to do so if they don’t want to or can’t dialyse at home.
“Not everyone wants to be at home. I did not want to go home! I wouldn’t have the stability or confidence to do that. The horrific experiences in the past, influence my present. I can’t see myself having home dialysis again. It would also be nerve racking and burdening for my parents. They were so relieved when I was able to stay in hospital”.
Following her presentation at this event she was asked to participate and be the voice of renal patients in other forums. She was encouraged to get involved with a support network for local patients in Cheshire and Merseyside. She then managed this with regular zoom meetings and moderated their self-help page. This progressed to being an advocate for Kidney Care UK. She says she wouldn’t have done that without the opportunities Shared care offered.
“Shared care saved my life. It dug me out of a hole and showed me I can be part of things to use my crappy experiences to make sure it doesn’t happen to others. It gave me a platform to focus on.”
Tara has since got married and successfully led two international school expeditions as a Freelance instructor and expedition leader and she tells me that she continues to do stupid things like trekking 600km across Chile including altitudes over 4,000m.
The experiences in Tara’s past have clearly influenced who and what she is today. She is now drawing on her own rich experiences to support others in a positive way. She advocates patient choice in being heard about what is right for the individual. A key element in the ethos of shared haemodialysis care. Her sense of feeling safe and supported is a strong theme throughout her journey.
Talking about Tara’s journey
When setting out to interview Tara, the intention was to pull together how her initial introduction to shared haemodialysis care influenced her path towards working as an advocate for others.
Supporting people to be more in control of their own care isn’t restricted to just learning how to do tasks of dialysis, it can lead to being involved as a trusted partner in care opening a door to more opportunities for patients to use their experience in a positive way as a form of self-development whilst working alongside professionals in a team to support others.
Through exploring the detail of Tara’s history, together we uncovered the detail to support a better understanding of how she got to where she is today and recognise that it is the sum of many parts. Tara says that telling her story has brought a lot of things previously hidden to the surface with many still quite raw feelings from the trauma she felt through the past few years. This is not her asking for sympathy “I had no alternative but to just deal with it” In the telling and the listening is the acknowledgement of the difficult times and the feeling of being heard. She describes the trauma as having a lasting impression on how she lives. “It has shaped who I am. Without it I wouldn’t have done half the things I have done and I am much more equipped to deal with difficult times now”.
And finally from Tara:
“In the time spent talking through my experiences, many difficult and traumatic events have been put to paper for the first time, things that I had buried. Although some parts should have played out differently, this is not about pointing fingers or picking apart the minute details. Unfortunately I was dealt a poor hand but the people who surrounded me worked tirelessly to swing the odds in my favour. To those that took care of me when I was at the lowest, you’re the true inspiration in this story. Your perseverance, kindness, and love are the reason that I can tell the tale. I am so very grateful to you all”.
“Now... where are those mountains?”