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Lauren's Story

Lauren's Story

Lauren, 25, renal patient

On a Monday, Wednesday and Friday there is a ‘Twilight’ group at St George’s Dialysis Unit  from 4pm - 8pm. These are a group of young adults aged 18-32 years.  These patients particularly highlight worries about their futures; about driving and getting around; their ability to complete their studies; how and where they are going to work. Within the group there has been a great deal of depression and non-compliance and a sense of overall vulnerability. The group dialyse together for support and the unit have won an award for their incredible work supporting young adults and improving compliance and efficiency of dialysis. Friendships have been created and patients now provide mutual support to each other.

Lauren is one of these patients from the Twilight group at St George’s Hospital. She was diagnosed with type 1 diabetes at 10 years of age. After years of not taking care of herself properly, or managing her diabetes correctly, Lauren was diagnosed with kidney failure. Lauren was studying health and social care at the time and working in the NHS.

Lauren says:

“My kidney problems started at the end of 2017; I was retaining water but my kidney function was still ok. By January 2018 my leg swelling had increased and only by elevating my legs could I bring the swelling down. I was working in the hospital the day I was admitted. My matron sent me to A&E as she was worried. I was admitted for 9 days and informed my kidney function had dropped to 26%. I had no previous symptoms other than retaining water.”

“I returned to the clinic at St George’s in August 2018. It took 12 attempts to get blood. As I was leaving the hospital I got a call to ask me to return immediately. My kidney function had dropped to 9%. That was it.”

“I started peritoneal dialysis initially. I was coming to St George’s daily and training to manage dialysis at home. My fluids had reduced and I celebrated my 25th birthday.”

“Then I took a turn last October. I was vomiting blood, hallucinating and had E.coli in my urine, it was horrible. I was admitted for another 6 weeks; I hadn’t opened my bowels for 2 weeks and this wasn’t helping the dialysis. The doctors said they would give me 72 hours – and at that point I was scheduled for haemodialysis.”

“My life has changed completely since my kidney problems. The last time I worked was in May last year, I hate it. I was in University and had to leave too. My concentration was affected and I would not have been able to finish my course. I would have been kicking myself if I couldn’t have studied to the best of my ability. The last thing I wanted to do was do it half-heartedly”.

“Because I was so ill I couldn’t go out, I didn’t want to do anything. I was so swollen, I was carrying 15kg of extra water. I couldn’t breathe; I got pneumonia; then blood vessels were bursting at the back of my eyes; I couldn’t see; I was just having a really tough time.”

“Compared to where I was in January to now, I’m like a completely different person, the nurses will tell you! I have changed from dialysis in the morning to twilight, this had made an incredible difference. If I didn’t have the support system I have I don’t know how I would do it.”

“When I was in hospital for 6 weeks, my dad would come in during the day and my mum would then come in at night. I always had someone with me. When I was hallucinating I had lots of reassurance, I didn’t know what was happening. I was talking to the drip stand, I was trying to run away from the nurses – but everyone was so amazing, I didn’t feel like I was going crazy. No one made me feel like I was mad, they just did an MRI and CT to make sure nothing was changing in my brain. It was all down to a urine infection.”

“I used to be in a relationship and I’m not in a relationship now; it completely broke down. I didn’t want to be selfish but this is hard to deal with. How sick I was, I mean I came out for a week then ended up in ICU with a blood sugar of 63. I was having seizures; I was just sick all the time. Being in a relationship is hard; I didn’t want to go out; I didn’t want to do anything; I didn’t want to be around anyone. I just wanted to be by myself all of the time. I isolated myself. I just wasn’t myself. I completely changed; even my mum said ‘you are not you’”.

“I’m getting better at coping with the haemodialysis now. I try to bring some entertainment or an iPad or phone, but if I don’t have anything I just sleep. It’s hard as you are on a bed so there’s not really much you can do as you can’t move around.”

“The way we are currently set up, it’s hard to have conversations with other people without shouting across machines. It could be set up so you’re closer and can have a private conversation. The colour as well, we need something more homely, like a living room colour. We all spend most of our time here – 3 days every week for 4 hours – so a few home comforts make a massive difference.”

“There’s a lot I want to do with my life. I spend a lot of time with my nieces and nephews, they are small so not in school yet. I read a lot now my eyes are better. I’m also learning how to crochet a skirt – it’s not as easy as YouTube makes it out to be. I’m just trying to sort my head out really. Apart from the kidney stuff, things haven’t been easy. I have been battling depression, and I had bulimia so I have always had something going on. I’m just taking the steps I need to get to who I am. I have been writing a lot that really helps, especially if I am having a rough day. Having had an eating disorder it’s easy to go back to those habits. Writing it down and sitting with the feelings and going ‘ok I’m having a bad day today, let me have a bad day, tomorrow we start again’ rather than sitting in that bad feeling for a week, then it’s two weeks, then it’s a month. I felt like I had to be happy all of the time before. Sometimes I have to remember to give myself a pat on the back that I got through that all and I’m still standing.”

“When I was in Champneys ward I didn’t realise how many people had kidney problems, even young people, so I started an Instagram page. It was incredible to see how many people reached out to say ‘I’m going through the same thing’, ‘Thank you for sharing your journey’, ‘How do you cope with this’ etc. It’s nice to help other people, it’s made me feel like we we’re not alone.”

“What makes the journey easier is having good nurses and healthcare assistants that work with you every day when you come in – just seeing them smiling all the time makes a difference. I come in I’m thinking ‘I don’t want to be here, I would rather be anywhere else’ but they are so happy and cheerful.”

“I’m currently waiting on a double transplant of a kidney and pancreas – one more scan and an echo then I’m on the list and just waiting. The storm is passing! It’s so exciting, I’m bursting with excitement. I would love to have my transplant at St George’s as I know people, I’m used to the environment, I feel safe here.”

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