Celebrating Diwali as a kidney patient on dialysis
Instead of being at home to celebrate Diwali with his wife, Pam, and their children this year, 66-year-old Sam Kang has no choice but to spend most of the day in hospital connected to a dialysis machine.
A shock diagnosis of kidney failure in 2000 left Sam needing dialysis for 12 years, until he finally received a kidney transplant through the UK Living Kidney Sharing Scheme, as Pam donated her kidney to a stranger. Sadly, Sam’s kidney failed this year, leaving him back on dialysis with little prospect of a second transplant.
Sam says: “I dialyse every Monday and Friday for four and a half hours each session, with additional time spent travelling and connecting to the machine. By the time I get home, it is about 3pm and most of my day has gone. I am usually exhausted and need to sleep. That routine doesn’t stop – even on important occasions like Diwali.
“Kidney disease and dialysis have a huge impact on my life, restricting my mobility, fluid intake and diet. During Diwali, that means I’ve been limited in how much I can join in with enjoying traditional Asian food and spending time at the Gurdwara.
“I’m not well enough to receive another kidney transplant and a lot of friends I’ve met on dialysis have passed away. It’s very hard to accept. You don’t know when it’s going to be your turn. It’s very scary.
“I just want to make the most of spending time with my family, particularly at times like Diwali. Even though I have restrictions and get tired, I do my best to join in as much as possible and put on a cheerful face.”
How does dialysis affect celebrating Diwali?
Diwali is a time when Sam's family come together, as his two daughters and son take time off work to visit their parents at the family home in Birmingham. Normally during the festival, they enjoy food, sweets, drinks and visit the Gurdwara. However, Sam’s second kidney failure means that things have been different again this year.
Sam says: “It’s hard for me to join in fully with the celebrations. If I did, I’d risk my health deteriorating even more. My immune system is compromised, so I have to be very careful about picking up illnesses. I still visit the Gurdwara, but I go earlier than everyone else to avoid busy crowds. I wear a mask every time, but I get awkward looks from people who don’t understand about kidney disease.”
It is normal practice to sit cross-legged on the floor in a Gurdwara. This is a sign of humility, equality and respect. However, Sam’s mobility problems because of kidney disease mean this is challenging for him.
Sam says: “There is seating for disabled people, but it is often taken up and there is a lack of understanding about kidney disease because it is not as visible as other conditions. I try to sit on the floor with everyone else but that is difficult for me now.”
Being a dialysis patient and having diabetes also restricts Sam’s diet and fluid intake. He says: “I can only drink one litre of fluid per day and have to avoid certain foods. For example, I can’t eat bananas and have to double boil potatoes to reduce potassium in my diet. Chillis also cause me to become unwell and that makes it hard to eat a lot of traditional Asian foods. I really miss eating Asian sweets!”
Beyond Diwali
Sam’s kidney disease and diabetes affect every aspect of his life. He is determined to make more people aware of the conditions and encourage more kidney donors to come forward.
Sam says: “Every occasion is impacted – whether that is Diwali, Christmas or any bank holiday. My mobility and eyesight have become worse, meaning I can’t drive or walk very far. I had to retire early from my job as a train driver and I don’t go out much now.
“I’d love to visit my family more but it’s difficult. Me and my son used to go and watch Wolves play football, but I’ve had to give up my season ticket. I’d been a season ticket holder since 1986. It’s difficult to go on holiday now too. Even if I was physically able, I’d have to find the money for dialysis abroad in places like India.
“I want to make more people aware of how challenging dialysis is, particularly in Asian community where less people put themselves forward to donate a kidney. Some people think they are incomplete without two kidneys and don’t understand you can live with only one. That’s why I’ve volunteered with my wife, Pam, for Kidney Research UK to speak out about organ donation.
“Generally, within our community, you only share private health matters with your nearest and dearest. However, that means it is harder for others to understand. When people hear our story, they are prepared to listen and are often shocked about the impact of living with kidney disease. They are also surprised that Pam is living with one kidney because she is so well. She works as a nurse doing long hours and can eat and drink what she wants.
“We hope more people will consider organ donation when they see the positive difference it can make. Kidney transplants transform people’s lives and mine gave me 13 years of life without dialysis. Time when I could make special memories with my family.”
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We've joined forces with and Give a Kidney, a charity devoted to living kidney donation, to raise awareness of living kidney donation and help more people understand what it means to be a living donor.
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