Estimated reading time: 6 minutes
Why shared care isn’t always about the tasks. Read about what is important to Anne and the choices that support her wellbeing.
Anne Perkins went to hospital in 1998, due to a rash on her face, the doctor was surprised at how high her blood pressure was and suggested that she visit her GP to investigate further. This lead to a diagnosis of PKD (Polycystic Kidney Disease), with several cysts having already formed on her kidneys. Blood Pressure tablets were prescribed and all was well, but what the Doctor said resonated with Anne; "Don't save for later in life just enjoy today".
Anne's mum and grand-dad both had PKD but made quite different choices. Anne's grand-dad had undergone dialysis and had a transplant in the early 1970s. In contrast when her mum's kidney function deteriorated her mum decided not to go on the transplant list nor to proceed with any form of dialysis much to the frustration of Anne's father.
In 2003, Anne was pregnant. Not related to her PKD she suffered pre-eclampsia. Fortunately she gave birth prematurely to a healthy baby boy - Jack at just 26 weeks 3 days.
By 2013 both Anne's parents and her uncle were very unwell and towards the end of the year all three passed away. Part way through that year Anne was advised by her GP that her kidney function was reducing and was now at 25%. Her father, who was by this time seriously ill with cancer recognised in Anne that she was becoming unwell. He knew that she had PKD and made her promise to 'give dialysis a go' and not make the same decision as his wife.
In 2016 Anne agreed to proceed with the operation to have a fistula/graft in readiness for the dialysis that she had promised her father she would try. Although an independent person she said that at this point she was very low and probably in denial about how unwell she was feeling and still did not truly want to understand the potential consequences of the condition . She hated hospitals then (and still doesn't like them now) but the night on the ward after having the operation was not a good night . Anne felt terrible and depressed about the future, not only because of the surgery (which made her arm dead which she was not expecting) but from being on a ward with patients who were "downright opinionated" and generally negative about undertaking dialysis. One lady who was on restricted fluids had a drink brought in by her family which made her breathing terribly difficult all night, which was frightening for her, and the others on the ward. Another lady was constantly complaining about when was she going to be taken to dialyse, a third lady would just not stop complaining about her diabetes and a forth seemed to have more awareness about medical conditions than the hospitals clinical director himself and wanted to let Anne know all about it. Anne just wanted to go home she was feeling very unwell and increasingly concerned that "this was what I had to look forward to?"
The next morning Anne was discharged to go home and was waiting for her partner to collect her in the waiting room. She spoke to a patient whose transplant was starting to fail and was waiting to have her kidneys 'washed' who told Anne "make it (dialysis) a part of your life do not let it rule your life" this positive mantra stuck with Anne as she prepared to start dialysis treatments.
Anne decided to wait until after the summer holidays before starting her dialysis routine, initially going to the Northern General for the therapy. She recalled how two nurses looked after her and made her feel really positive. After just two sessions they arranged that her treatment continue at the Heely satellite unit that was closer to home. Day 1 at Heeley Anne still remembers how she was greeted by name and that the whole team looked after her making her feel really welcome.
Initial dialysis days were Tuesday, Thursday and Sunday which was a problem for Anne as she had recently changed her working days to Tuesdays and Thursdays and also wanted to keep the weekends free to be with her family and to look after her three horses and tend to her smallholding. The unit accommodated her circumstances by changing the days to Monday, Wednesday and Friday mornings. This now works really well for Anne and in between treatments she feels 'normal'.
For Anne dialysis time is about rest, relaxation and getting her blood cleaned so that she can maximise what she does in between sessions. This does not mean she is a passive recipient; she knows for example the characteristics of her fistula and whilst not wanting to put the needles in herself works with the nurses to be sure that they know what works for her and what doesn't. In addition she uses a local anaesthetic prior to needling just in case the vein is missed (as it hurts !).
Anne is becoming more aware of her condition and the options available for now and in the future. She says these were explained before but now feels able to take them in and consider what might be right for her. She has spoken at the SKIPP (Sheffield Kidney Informed Patient Programme) and met other kidney patients who were all at different stages, who undertake different dialysis treatments or have been transplanted. Each conversation brings a new perspective to Anne that helps her make the right choices.
Anne is very independent – she drives to and from here treatment and said she would not want to rely on taxis as that takes away her control.
Anne is very conscious of the timeslots required for the dialysis machine and would feel really guilty if she were taking up the next persons time. She says that she would be very annoyed if the person before her was 'dallying around' so would not want to do anything that may take her past her allotted time. At the end of the treatment the team work in parallel. Anne puts pressure on her fistula to stop any bleeding whilst her supporting nurse cleans the machine. This dual working means that everyone is happy.
Looking forward Anne is on the transplant list. She had hoped that her partner was a match but this proved not to be so. She is now hoping for a match or for a 'living donor chain' to form where her partners kidney can be used by someone else and she is able to benefit from another. This whole concept though does "mess with Annes head". The idea of someone else giving up part of themselves for her, especially if that person was not very close family is a decision that is not to be taken lightly but for now it is not one that has to be immediately made.
Home haemodialysis maybe a way forward but she doesn't like needles so self needling at this stage is not the right choice. Also with a 13 year old son at home she does not want dialysis machines and medical gear around the house. Anne works, looks after her family and has a smallholding with three horses (where last summer she was still baling hay despite a kidney function of 6%). She wants to separate dialysis time from home time as that allows her to deal with her condition in the most positive of manners.
Finally, Anne says it's all about "Quality of life not Quantity. Since I have been on dialysis my family and work colleagues have said that I have got my mojo back. When my blood is clean my brain is working and I am not fuggy and unfocused" . Perhaps this is why she calls her dialysis treatments going to the Spa. Cleansing her mind, soul, body and her blood.
With thanks to Anne Perkins and all patients and staff at the Heeley Dialysis Unit
Written by Sonia Lee (10/2/17)