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Supporting a patient with peritoneal dialysis - Robbie's Story

Every patient we work with is on their own journey and will have different ideas about how and where they want their treatment to be delivered, and what they need in terms of support.

 

During the early stages of chronic kidney disease, it’s common to try to slow down the progression of the kidney disease, and the onset of some symptoms, through diet and medication, otherwise known as “conservative therapy”. Later though, there are three different treatment options available to replace some of the lost kidney function, kidney transplantation, peritoneal dialysis and haemodialysis. Last year, I had the pleasure of supporting Robbie and his family – his wife Vicky, and their three young children who live in Edinburgh.

 

Robbie is visually impaired, as is Vicky and their eldest son, so there were obvious challenges to consider. The biggest being to minimise the risk of infection, when deciding whether peritoneal dialysis would be the best option for him. Robbie and Vicky are both fiercely independent, and right from the outset he expressed his wish for his treatment to take place at home instead of making the journey to hospital for haemodialysis three times per week. Taking into account his unique circumstances, we knew how important it was to consider our peritoneal dialysis systems an option which could enable Robbie to retain his independence.

 

Before Robbie began treatment, we carried out a routine pre-dialysis appointment at his home to assess his suitability for peritoneal dialysis and watched him as he made the connections with the machine. It was amazing to see how quickly and naturally Robbie picked up the techniques he needed to perform treatment. During our second visit, myself and my colleagues used what’s called a ‘dummy tummy’ to ensure he was able to carry out all the connections himself without causing any contamination. From this appointment it was clear to see that peritoneal dialysis was indeed the right treatment option for him and so we were determined to make it work.

 

When a patient begins training, we invite them to come into clinic each day for around 3-4 days, so they can spend time getting familiar with the machines and feel confident using them independently. The next phase of training takes place at home and for Robbie, took between a 1-2 weeks, which is standard for most people.

 

For many patients and their families seeing the equipment in their home for the first time can feel daunting. Vicky in particular was concerned about the impact it might have on their family and how the children would react to seeing their father receiving treatment in this way. Over the first few weeks, and even now from time to time, she calls us – sometimes for reassurance, but mostly for practical advice. That’s what makes my role as a nurse feel so rewarding. You really are there to support the whole family through a period of adjustment which at times can feel overwhelming and scary. Being able to form these close working relationships is also key for us, as often we rely on family members, loved ones and friends to let us know how our patient is really doing.

 

The key thing for patients to know, is that whatever stage they’re at, they have a choice. It’s part of our job as healthcare professionals to inform them, helping them to understand the range of options that are available to them. Having this control over decisions about their treatment is crucial in ensuring they have a positive treatment experience and continue to feel empowered and supported every step of the way. 

 

During the past year things have been stressful at times and emotionally hard for all of our patients on a home therapy. Many have felt isolated and lonely, so we have kept in touch on a regular basis to ensure that they continue to feel fully supported every step of the way. Robbie had been waiting for a live donor transplant from his brother, but due to COVID many transplantations were suspended. Thankfully there was good news to end the year. Transplantation has recently been restarted and Robbie received his transplant, which continues to work wonderfully.

 

For more information about treatment options, visit: http://bit.ly/35W8Qrk

 

This article was written by Tawera Beveridge, Junior Charge Nurse in the community dialysis team