Diagnosis and donation
"I think kidney disease defines who I am as a person – it has both restricted and opened up my life.
"I was diagnosed with kidney disease when I was seven, but I was born with dysplastic kidneys. I had reflux nephropathy and water infections and by the time I was diagnosed I only had 15% function in my left kidney and 40% in my right kidney. When I was 10, they removed left kidney which was at 4%. When I was 11, my dad donated his kidney to me, and it lasted through school and college.
"Mum did all the medical workup to donate her kidney to me, but after the transplant there were too many complications, and two years later I had to start in-centre haemodialysis with an emergency neckline. After a year, I started doing haemodialysis at home, using a tunnelled neckline for three years and then a fistula after that. Home dialysis was better than going in centre. I could do more when I was on home dialysis; dialysing when my partner was at work so we would have more time together, having more free time because I didn’t have to travel to the unit.
"About a year after I got my fistula, I started having seizures, I was having problems needling and I had to go to Newcastle, an hour and a half away, for dialysis. I tried to do dialysis at home when my partner was at work to get as much time with him as possible, but it wasn’t safe as low blood pressure caused me to start having seizures.
"Just after the pandemic, I switched dialysis to a local centre and transitioned into full in-centre haemodialysis.
"I then had another transplant in July 2023 which seems to be going well. It was my third call for a transplant from a deceased donor, so it was third time lucky!"
Dialysis and Download Festival
"The first year I went to Download Festival was when I was on haemodialysis was 2017, not long after meeting my partner. It was our first festival together. I already had bought my ticket before starting dialysis, so I’d contacted Download's accessibility team and spoke with my renal team, talking about whether haemodialysis could work around the festival. I went to Download for three days and got a haemodialysis session at Derby Royal on Friday morning. We left home Friday morning, to get to the hospital for 7am, then had haemodialysis and pitched our tent after arriving at the festival Friday afternoon. Then on the Monday, I travelled back to Newcastle for dialysis. I had only been on dialysis for four months.
"For my next festival I was on home HD, which made it easier. I’d have early morning dialysis on Friday, and then hook up at home on the Monday. When I had to go back in centre, last year in 2023, making my pre-festival dialysis arrangements was much harder. I used Kidney Care UK Dialysis Freedom to find a centre at Stratford in 2022 when I was just attending a gig in Nottingham as well as visiting my newborn niece Imogen, and they helped organise it all. I wanted to go to Derby Royal, but the only slot they could offer was Saturday night and I didn’t want to miss Metallica!
"Last year was the 20th anniversary of Download so there were four days of music. I did haemodialysis (in centre) at my local centre on Wednesday morning, and then left the festival Thursday evening and stayed in a hotel in Stratford to do dialysis again on Friday morning. We got back to Download just in time for all the bands I wanted see the Friday afternoon, giving me chance to enjoy the rest of the weekend. Then I was back at my local unit on Monday afternoon after the festival. It was tough, especially with being on a one-litre fluid restriction in the heat, but once I got it down to a fine art it worked brilliantly!
"The accessibility team at Download are amazing, they accommodate for all kinds of disabilities. They have their own access campsite, a 12-hour reception tent, better toilets, electric hook-ups, disabled toilets, and a designated car park. You can come and go when you want. My advice is, even if you think you might not need access, speak to the accessibility team anyway because there might be something you haven’t thought about. The access camp is far more respectful. More like family camping, rather than the ruckus of the regular campsite.
"I have my ticket for this year ready, and now I have my transplant it should be amazing! I have been to six Download festivals, along with lots of others over the years. There are always two sides to every coin, you just have to find the positives."
Laura's festival-ing top tips
Buying tickets and accessibility
When buying tickets for festivals or gigs, you should be able to apply for a disabled or accessibility ticket.
“Even going for a day to a festival, I suggest going for accessibility because there will be less walking, and access to everything you’d get on the weekend pass. You may have to fill in an accessibility form and request any special access that you may need. It can take a few months to process the application, so fill in everything as soon as you can.
“Often these tickets come with a carer’s ticket too. Just make sure that you pay attention to how carer’s tickets work. Sometimes you will need to buy a ticket and get it refunded, and other times the carer’s ticket will come with a disabled / accessibility ticket.
“You will probably need your letter confirming PIP qualification or doctor’s letter to prove that you need a disability or accessibility ticket. You can also use the Nimbus Access card, which lasts for 3 years and can help with applying for access.”
If you are anxious about the festival, speak with accessibility team at the festival.
“Most festivals and gigs should have information and support and information about how to contact accessibility is usually on the website. Some venues are easier to organise accessibility – you can ring and ask them to fast track through access – whereas bigger venues aren’t quite as good.”
Travel and insurance
It is possible to do an entire weekend festival while on haemodialysis.
“Contact Kidney Care UK Dialysis Freedom, a free service for UK patients which helps them access Dialysis Away from Base, if you want to dialyse away from home near the festival. Just don’t leave in any longer than six months before the festival to first contact them.”
Be sure to get event insurance.
“It usually costs an extra fiver, and it covers you in case you’re not well enough, or if the best happens and you get called for a transplant!”
Food and drink
Ice cubes can be a great way to stay cool and hydrated.
“It can be really hard staying hydrated if you are managing a fluid restriction. Ask for a cup of ice from bars and suck on ice cubes to keep cool or pour them on your head to cool down.”
If you are buying food at the festival, try to choose kidney friendly options where possible.
“I’d go for noodles and chicken rather than anything salty, sticking to low salt, potassium, low phosphate. I would take a few extra binders with me, for example if one of my meals was too cheesy.”
Support and advice
For support and advice try Facebook or social media for pages about being able to go to festivals.
“For Download festival, there is a Facebook group called: ‘Disable camp and access / Download festival’. They have great advice on there about accessibility and disabled access.”