Meet Louisa, a vibrant and determined individual who has been living with kidney disease for the past 15 years. Diagnosed at the young age of 20, Louisa’s journey has been one of resilience, hope and unwavering positivity.
Louisa’s life with kidney disease began in 2010 when she returned from a holiday in Bulgaria experiencing severe swelling. Initially believed to be cellulitis, a blood test revealed something more serious, and within hours her GP had admitted her to hospital for further tests. It took a couple of months and a biopsy to reveal her diagnosis of kidney disease which led to her being transferred to the care of the Renal Team in Leeds, where she first met her long-term consultant, Dr Mooney, who has looked after her ever since.
It took a while after diagnosis to get her treatment right, having had times where the medication had resulted in side effects like swelling, but after a while it settled down and the medication enabled her to continue living life. She knew that her kidney function would gradually get worse, but she was told that it would not reach a stage where anything more drastic would need to be done for around 15 to 20 years. With this in mind, Louisa has lived her life as fully as possible, doing everything a young person would do normally, but with changes to her lifestyle to protect her kidneys as much as possible, such as eating healthily, avoiding drinking too much and never smoking.
At the age of 26, Louisa decided to take a year out, and travelled the world, with the support of Dr Mooney who told her to ‘live your life’ and with the help of the Leeds renal team even had blood tests carried out in Hong Kong, Delhi, Vietnam and Cambodia to ensure her kidney function was stable. Louisa wanted to do all of this before her kidney failed as it would be much harder, if not impossible to go to all the places she did while on dialysis or post-transplant.
After her travels, Louisa then settled into a job and bought a house tailored to accommodate her health, choosing a less stressful career and working from home to help manage her fatigue. Her employer offers flexible arrangements including extended lunch breaks if needed and a generous sick leave policy which has alleviated any financial and occupational stress she may otherwise have had to deal with. Three years ago she also got a dog, Alan, who has been a great emotional support, and given her a reason to get up and remain active through walking, so even when she is feeling fatigued, she has to get up and get on with her day for him.
About 18 months ago though her kidney function declined to around 15%. It was at this point that she was placed on the transplant waiting list in September last year and is being monitored regularly to see when she may need to start dialysis which she is preparing for, opting for peritoneal home dialysis if the time comes. She wants to dialyse at home so that it has minimal impact on her work and lifestyle.
Luckily for Louisa, she has fantastic support from her friends and family, and even has a family member on standby to take her dog for the period after her transplant so she can focus fully on her recovery without having to worry about him at the time. Louisa is hopeful that she will be able to have a living kidney transplant, knowing that this is more likely to have the best outcome, and has friends and family going through testing for either a full match or to donate through the living kidney pairing scheme.
Louisa is keen to raise awareness of kidney disease and organ donation, wanting others to understand the impact of the disease beyond visible symptoms, and that a transplant is not a cure, just the best possible treatment available, and values the importance of research to provide better outcomes for patients in the future.
To help raise awareness amongst her friends and family, Louisa, along with her sister, Roseann, organised a fundraising event at her local cricket club in March. The clubhouse was full on the night, and they had live music, and a raffle, raising an amazing £2,000 which is being double matched by her employer, AIG. The main aim was to give something back, and knowing the fantastic research being undertaken in Leeds, they chose to support Kidney Research Yorkshire to help us continue to fund vital research and develop Leeds into a hub for kidney research.
Thank you so much to Louisa for sharing her story, and we wish her all the very best as she prepares for a transplant in the near future.