Barnet grandmother Ruth Adley was already picking dates for the operation of her long-awaited kidney transplant when, in the eleventh hour, the prospective donor who had gone through months of testing, decided to pull out.
Ruth, 68, from Barnet, north London, has Polycystic Kidney Disease (PKD), a genetic disorder that causes fluid-filled cysts to grow in the kidneys, reducing their function and eventually leading to organ failure.
A year ago, she and her family began appealing to the Jewish community to help her find a living donor match for a kidney transplant as donors and recipients from the same ethnic background are more likely to have matching blood groups and tissue types. They reached out via WhatsApp groups, through their synagogue, Western Marble Arch, their personal network and through the JC.
Ultimately, only a handful of people were tested, but one of the first proved to be a match across all three tests. The process of testing took over four months, during which time, Ruth’s kidney function gradually deteriorated.
But the transplant seemed imminent, even with the additional complication that Ruth has Crohn's disease, which would require the procedure to be carried out over the course of two operations.
“She needs to have her kidney out, then go on dialysis for a short time, and then when she's recovered, have a new kidney in,” said Tasha Langleben, Ruth’s daughter. “So, everything has to be arranged back-to-back.”
Ruth’s family was planning the dates for the two operations and waiting for the final clearance from the hospital, when they were told the donor had pulled out.
"They just had some personal stuff going on that meant that they could no longer give up the time for the recovery that would be needed,” Tasha explained. “That was really hard because we'd gone through maybe a six-month process and are literally about to diarise the operation, and we're back to the drawing board.”
Because Ruth’s son also has PKD, he has been unable to donate, and Tasha has had kidney problems as well – in addition to two young children, which would make the recovery time difficult.
While Tasha said her mum was “quite pragmatic” about the situation in the beginning, a year of deteriorating health and dashed hopes for her donor prospects have come at a cost.
“It's now taking a toll on her because she's just like: ‘My future is completely in limbo.’”
Ruth, who retired last year from her job as a bookkeeper, is currently being monitored with regular appointments and blood tests. The main issue with her quality of health, according to Tasha, is that “she's constantly tired and really cold”, but she is doing her best to live her life as normally as possible – spending time with her grandchildren, who live just around the corner and seeing friends.
But the family is not giving up easily and are continuing their search for the living donor who will save Ruth’s life.
“We come with zero expectations,” Tasha said. “We were quite overwhelmed when we got anyone, let alone a handful of people, many of whom were complete strangers, which was mind-blowing, to be honest.”
While people with just one functioning kidney can live a normal, healthy life, Tasha pointed out that potential donors should think carefully about their personal circumstances and whether they can commit to the procedure and recovery but added: “You only need one person.”
"Obviously the first person we tested could have been that person so, you know, it doesn't need to be a list of a hundred. It could be just one person who comes forward and they are the match.”
If you are interested in being tested to see if you are a match, email: kidney4ruth@gmail.com