Birmingham Sikh couple speak up about lengthy kidney transplant wait times for minorities

A Birmingham couple in their early 60s are raising awareness about kidney disease and the challenges of transplants as an ethnic minority for South Asian Heritage Month.

Satnam Kang, known as Sam, was diagnosed in 2000 when he had a check-up at a hospital in India while visiting his family.

“I had some idea that there may be something wrong with my kidneys, but I could not believe that I had gone into kidney failure. It felt like someone had shot me,” he said.

He was told to start dialysis immediately.

“I just had to accept the reality of the situation and get on with it. I was initially receiving dialysis three times a week for four and a half hour sessions, but I soon had to be on for four days, meaning I no longer had a whole weekend to rest,” Sam added.

Dialysis can be a gruelling process and it left him with constant shakes and feeling off balance. Sam was unable to get a transplant straight away because of underlying health conditions.

When did Sam have to wait so long for his transplant?

“I was overweight, had diabetes and high blood pressure. The years went by, and I started to lose the weight and got down to the 100kg mark the doctors had given me,” he said.

He thought he was well on his way to receiving a transplant but his wife, Paramjeet aka Pam, was not a match.

He waited twelve years before receiving a transplant in 2013. That was possible only because his wife donated her organ through the kidney share scheme. She donated her kidney to a stranger while Sam received another kidney in return.

As ethnicity is a factor in whether a donated kidney will be compatible with the patient, there are not enough organs available for minority ethnic groups.

They are likely to wait longer for a transplant than Caucasian patients.

In 2020/21, donors from black and minority ethnic groups made up just 9.2% of total donations that year, according to an NHS report.

Taboo around kidney disease and donation of organs in some communities are some of the factors for low donation rates.

Pam said: “When we received Sam’s diagnosis it was a big shock and something we were unable to talk about because when you come from a Sikh community, there is a lot of shame and embarrassment around illness, and you always think that you might be judged.

“People often assume that kidney disease is caused by heavy drinking, which is not the case at all, but the assumption from a close community would be to say that a person with kidney disease does not look after their body.

“The disease remains taboo which is why we have devoted a lot of our time to speaking to the community and dispelling myths about this horrible disease.

“I am so glad that I was able to donate my kidney to save Sam’s life and I want more people to feel comfortable to donate and keep their loved ones alive.”

Dr. Adnan Sharif, Kidney Research UK trustee and Sam’s consultant nephrologist at the Queen Elizabeth Hospital Birmingham said: “Sam’s experience with kidney disease has been painful and tremendously challenging and unfortunately not uncommon for someone of his ethnicity.

“The work that both Sam and Pam do to encourage donations across the community and dispel myths about the disease is invaluable and will ultimately save lives.

“If we can remove the stigma behind organ donation and encourage more people to come forward, we can have a significant impact on the lives of all patients.”

As peer educators with the charity Kidney Research UK they visit Gurdwaras across the West Midlands to spread a positive message about the disease and encourage congregations to sign up for organ donation and dispel the taboo of living with kidney disease.

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