University Hospital Southampton NHS Foundation Trust
Romy and her mother

Meet the patients: Risa Romy

In November 2011, a bright 11-year-old girl named Risa woke up in her family home to find that her face and eyes had swollen up.

As nurses, her parents Sue and Romy were concerned and contacted their Dorchester GP immediately. The GP advised that this could be an allergic reaction and commenced Risa on anti-histamines, which continued for four weeks. 

Unfortunately the swelling continued and worsened and, on further consultation, the family persuaded their GP to refer her to the paediatric team at Dorset County Hospital.

Risa was seen by a doctor from Southampton Children's Hospital (SCH) in January 2012 when blood and urine tests were taken. She was then treated with steroids for three months and had a biopsy in March 2012 in Southampton which confirmed she had a rare kidney disease called focal segmental glomerulosclerosis (FSGS), a steroid-resistant nephrotic syndrome. 

Risa started receiving regular albumin transfusions to reduce the swelling every two to three weeks but, on bad days, she was often unable to walk and could not go to school. In 2013 she started taking immuno-suppressants, but these didn’t improve her situation.

Sadly, by the end of 2013, her kidney function started failing and the decision was taken to remove both of her kidneys and commence dialysis while a donor was sought. Risa underwent surgery to remove her kidneys in March but, due to complications, only one was taken out. She had the second kidney removed in April 2014. 

Her life had become a constant cycle of travelling to and from Southampton for her dialysis three times a week. In May 2014, the team at SCH set up some training at Great Ormond Street Hospital to teach Risa and her family how to deliver home haemo-dialysis so that they could regain some normality. The first dialysis at home was observed by team members from SCH, Great Ormond Street Hospital and Dorset County Hospital. Although it was hard work, this was revolutionary for the family and meant that Risa could return to school and schedule her four weekly five-hour dialysis sessions at times to suit them. It also meant that Risa's sister, ten-year-old Riya, could support the process and have her parents at home to support her too.

Romy and her kidney donorIt was while planning for home dialysis was progressing that Mr Sibby Thomas, from Sunderland, heard of Risa's need for a kidney donor through the South Indian community. Sibby decided to get tested and was a match for Risa. A meeting was arranged for the summer and Risa got to meet her donor and her transplant was arranged for 23 January 2015, three days after her 15th birthday. Risa and Sibby were admitted the day before the operation that would change both their lives forever. 

Following a successful transplant at Evelina Children's Hospital in London, Risa's care was transferred back to SCH. In first few weeks she required a blood test every day, so Risa and her mum moved into Ronald McDonald House Southampton. This made a great difference to the whole family, with her father and sister able to stay with them at the weekends. During her stay, the children's hospital school arranged for Risa to keep up with her school work by visiting the on-site school daily.

Six months post-transplant, Risa is now back at home and at school full-time, returning to Southampton only once a week for follow up. Sarah Grylls, nephrology clinical nurse specialist, said:

"Risa’s care is an excellent example of the expert treatment we are able to offer at Southampton Children’s Hospital.  

“She has received pioneering new treatments in the form of home haemodialysis and received gold standard timely care with her altruistic transplant, which involved the joint working of three different renal units spanning the length of the country."

She added: “Risa was also one of our first patients to benefit from parent and family accommodation at Ronald McDonald House which has made this challenging journey more manageable.

”Risa and her family cannot speak highly enough of the consistency of the whole renal team for the care she received throughout her journey, which also included consultants Rodney Gilbert, Shuman Haq and Arvind Nagra and many others on ward G4 nephro.

"She said that it was so nice to build a relationship with the same team over time – they really are life-savers." 

Risa and her family are now participating in a campaign to raise the profile of organ donation in the UK’s South Asian community through charity Upahaar.

There are currently more than 1,150 Asian people waiting for an organ in the UK and these patients are, on average, likely to wait a year longer for a transplant than a white patient. For more information on organ donation in the UK or National Transplant Week, which runs from 7 to 13 September, visit www.organdonation.nhs.uk.