21 Aug An update on Imeleina
Last time we met with Imeleina and her mother Mua in 2021, Imeleina was only 12 years old and was two-years post-kidney transplant. Imeleina was born with Nephrotic Syndrome and battled through peritoneal dialysis, haemodialysis and numerous surgeries prior to her transplant in 2019. After the operation, Imeleina and her mother expressed their excitement for this new stage in her kidney journey. Imeleina was thrilled to start attending school full time and was looking forward to travelling overseas.
Now three years later, Imeleina is a 15-year-old girl who lives her life to the fullest, continuing to make her mum proud of everything she does.
Reflecting on the past few years, Imeleina’s mother Mua expressed her gratitude for the transplant Imeleina received.
“We don’t have to work around a machine anymore”, says Mua.
Imeleina now spends far less time in the hospital and has reduced her medication intake meaning she can live a more normal life compared to her time on dialysis. Now in high school, she enjoys attending school five times a week, only taking time off school a couple of times a month for check-ups, compared to her weekly visits pre-transplant. Imeleina’s dream to travel became a reality in 2023 when she travelled to Florida. She spent two weeks in the States thanks to Koru Care NZ visiting Disneyland and Sea World. She also attended a hockey game and got a special tour of one of Florida’s many famous basketball arenas. This trip was even more significant for Imeleina as she had previously declined the trip while on dialysis. However, with her new kidney, she was able to enjoy and embrace this holiday without working around her dialysis machine. Without her transplant, Imeleina would not have been able to go on this trip.
Despite the incredibly positive change having a transplant has been for Imeleina and Mua, Mua wishes people understood a transplant is not a cure. It is a temporary solution to manage kidney disease and kidney related conditions.
Healing after Imeleina’s transplant not only took a toll on her physically but also mentally. After an organ rejection scare that turned out to be harmless bleeding from scar tissue, Imeleina realised her new kidney would have its own challenges. Imeleina had to use a nephrostomy while her body adjusted to the new kidney, which was ultimately removed once her healing progressed. Coming to the realisation that she will need to attend fortnightly check-ups and take medication for the rest of her life, although far less demanding than being dialysis, was disappointing for Imeleina.
“She felt defeated. She thought once she got a new kidney, all her problems would be solved”, says Mua.
The fact that her kidney has a limited lifespan means she’ll eventually need to face the transplant process all over again. Imeleina’s daily water intake must also be monitored as she is required to drink at least 2.5 litres of water a day, a major difference to the limit of 20mls per day when she was on dialysis. When her daily water intake goal is not met, she must be fed liquid through her gastrostomy.
The mental toll of the transplant also weighed on Mua’s mind as she had originally planned to donate her own kidney to her daughter. However, after finding out she was pregnant with Imeleina’s brother, the search for a new donor proved to be quite challenging. Eventually, Imeleina was given the kidney of a deceased donor. Although the excitement of a new child thrilled Mua, her guilt at not being able to donate her kidney to her daughter weighed heavily. She became depressed very quickly.
Mua is proud to be in a better mindset now having come to terms with this obstacle many women encounter when preparing to donate an organ.
Although receiving a kidney transplant is challenging, it is also incredibly life changing. Imeleina’s life off dialysis means she can plan for the future without the obstacles of living around a machine. Imeleina loves playing sports like tag rugby and volleyball, something that was more testing before her transplant. She is also a passionate member of her local church’s youth group and sings in the youth choir.
Imeleina plans to do an exchange to South Korea next year as she embraces her love for travelling.
Although Mua and Imeleina do not know anyone in their immediate community who struggles with kidney disease and kidney related conditions, being a part of Kidney Kids has made their journey far less isolating. Specifically, the private Facebook support groups for our Kidney Kid’s parents and guardians have provided a safe place for Mua to share her experiences, and to seek and give advice. The annual Kidney Kids Christmas party and camp are also highlights for Imeleina who looks forward to these every year.
Mua wants all parents and guardians of Kidney Kids to know they are doing an amazing job and to not be so hard on yourself. “You’re already doing the most, don’t punish yourself”.
“I will always be grateful to Kidney Kids for the support they have offered us and encourage other families to reach out for help on this very challenging journey”.