Samantha, a supporter of DAYLife and home therapies

Samantha has been a dialysis patient for 15 years – half of her life – and with two failed transplants behind her, she’s been on home haemodialysis for the last five years. She’s a fan.

Samantha’s renal failure at the age of 16 was of unknown origin. CAPD was selected as the best treatment option for her in an attempt to help her maintain as normal a life as possible while she was studying.

Samantha says “This enabled me to carry on with my A level’s, do dialysis at home, socialise with friends and family, and meant minimal time spent at hospital or in the car travelling to and from hospital.  It even allowed me to go away for weekends or stay at friends’ houses, allowing me to have those normal teenage years”.

After three months this wasn’t working sufficiently well so Samantha went on to APD for 11 hours a night with a tea time exchange. It was, however, more difficult to maintain a normal life. It took more planning and was extremely time consuming and limiting, but Samantha is a very positive person, so she made it work for her and tried not to let it stop her doing anything.

Sam explains “During the first year of my illness the staff at Shrewsbury hospital were so supportive of both me and my family. This was a completely life changing situation for me and my family and without the support of the CAPD nurses who helped see us through this difficult time we would not have coped as well as we did. The staff we came across were very knowledgeable and we had every confidence in them. There was never a time where you couldn’t speak to them about something, no matter how small or ask a simple question. They almost became part of the family. At the age of 17 I had my first transplant from the list and then in 2010 I received my Dad’s kidney. Unfortunately for me neither of these lasted.  When my Dad’s kidney failed in 2012, I went straight on to haemodialysis”.

She continues “As a needle phobic I had always said that I would never have a fistula and never needle myself. Luckily for me I had two amazing nurses on the haemodialysis unit who persisted in encouraging, counselling and patiently persuading me that home haemodialysis was the way forward for me. Over the years I had grown to have complete faith in them and I knew they had my best interest at heart. They slowly won me over step by step. At the time this was all happening a new machine became available in Shrewsbury called NXstage. My nurse gave me all the information that was available, which included videos and literature. She spoke about how it would help me live my normal, active lifestyle again and give me back some of the control of my treatment. She spoke about how my diet would be less restrictive and I would be able to drink more between sessions. This was the deal breaker for me as I really struggled with my fluid restriction. So, armed with all this information and support I made the decision to put my trust and faith in NxStage.”

Despite a delay in her training for home haemodialysis, caused by staffing changes, Samantha was able to overcome her needle phobia, train on the machine and got home within a month.

“I now do dialysis five days a week for two and half hours and have been doing this for the past five years – I’ve not looked back.  Being on Nxstage has enabled me to put my education into good use and I am now teaching three days a week at a special needs secondary school.

Nxstage has given me back control of my life. I almost feel like a normal person again.

I plan my dialysis around my life now, whereas before I was planning my life around my dialysis.  If I want to go somewhere or do something, I can with little thought. I can change when I do my dialysis to suit plans. I can take it where ever I want to go. It allows me to drink more between sessions, so I never feel thirsty anymore. My diet has been relaxed and I can enjoy more foods. It has even allowed me to go on many holidays in the UK and abroad including going to Italy for a month.

The home haemodialysis staff are always there at the end of the phone if you are having any problems. There is an out of hour’s helpline, which I have rang many times and is always efficient. I am so glad that the staff helped me to choose home dialysis as it really has made my life better. I am not saying that it’s easy, it does take courage, confidence and a lot of perseverance, especially the first few times you do it at home. But it is so worthwhile – it has changed my life for the better”.

Our thanks to Samantha for her story. Samantha spoke very movingly about her experience at the launch of DAYLife, the national Home Therapies programme.  

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