It all started in June 2014 when he found out he had Kidney Disease. Ven was shocked, sad, extremely angry, and confused because the decline of his kidneys over time was not raised as a concern as it should have been. He had always led a healthy lifestyle so the diagnosis was a shock. In 2015, Ven had a stroke and became paralysed. He had to recover from this while living with kidney disease at the same time.
Over the years, he’s been on different treatments like haemodialysis and peritoneal dialysis as well as trying alternative therapies like ayurvedic treatments and acupuncture. Being on dialysis has been a real challenge, and having to commit to 3 times a week and in total 15 hours of being connected to a machine per week.
Ven's strong spirit helped him find support from other people and other places. Ven is thankful for the Kidney Society and in particular for Wellness Educator, Tracey Drinkwater.
“She has been very supportive from the very beginning. The amazing thing about Tracey if she can’t give you an answer she will direct me to the necessary person. She is very resourceful.”
When there is no way out, the only way is to roll with it. Once again during those difficult times, Tracey would just talk to me.”
Ven stayed resourceful and reached out to people who were on dialysis or had received a kidney transplant because they understood what he was going through.
Kidney disease changed many things in Ven's life. He doesn’t enjoy food as much as he used to, has a lot less energy and tasks like travelling or working have become difficult. Some relationships suffered as people didn’t quite understand the impact of Kidney Disease.
Ven has had to make significant changes in his life, like watching how much water he drinks and being very careful about his diet. His family, especially his parents, have been a big source of emotional support
Ven is grateful for the people who supported him and made a difference in his life. People like his good friend Sam, who travelled from Tauranga to visit Ven who was in hospital in Auckland, and another friend, Colin, who visited him and picked and dropped him off. There were people along the way who left a mark on the journey like taxi drivers who’ve been there a number of years, his neighbours, and others who’ve supported Ven. Ven’s pharmacist, Tanveer, made a big difference in his journey by being extremely helpful, supportive and encouraging.
Managing emotional and mental well-being is definitely not an easy task while living with Kidney Disease. The treatments and surgeries took a toll on Ven, but the support he received from psychologists like Kat Skinner who stepped outside the box to find solutions, proved invaluable. He also expressed gratitude to Rita and her team at Tamaki Health's Self-Management Team, a part of the Self-Management Chronic Team, for their helpful assistance.
Despite all the challenges, Ven has been achieving a lot. It’s been truly inspiring to see that Ven started work last year which he said really helped increase his confidence. Ven started a degree in psychology, even became a homeowner and he also supported his mother during her open-heart surgery.
His advice to others facing similar challenges is not to blindly trust doctors and GPs and to be vigilant and get second opinions if you are unsure. Ven says one must take care of oneself, attend dialysis as you need to, take care of your exercise, diet, and medications and their side effects, and be aware of your energy levels.”
“Having a relationship with the Kidney Society is a must as it gives you a sense of belonging, provides support and care - as sometimes support from the hospitals can be rather limited due to resourcing.”
Ven’s journey paints a realistic picture of what some of those living with Kidney Disease may go through, while everyone’s journey is very different, it shows the importance of self-care, sticking to treatment plans, taking care of your wellness, and having strong support systems are all very important.
Ven, we are truly inspired by you, your positivity, strength, and resilience and we thank you for sharing your story with us.