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Date: 23 September 2020

Time: 20:23

Robert Smith's story

The gift – liver recipient donates state of the art equipment to UHB

Robert Smith and his wife Jean have built up a close relationship with staff at the Queen Elizabeth Hospital’s Liver Unit since Robert became an organ recipient here 18 years ago.

Robert, who is now 55, originally fell ill with cryptogeniccirrhosis (liver disease with an unknown cause) and was given just a few weeks to live if a donor could not be found.

“What I didn’t realise is just how rapidly and dramatically one’s condition declines with liver disease,” said Jean. “Being helpless was especially harrowing. I knew that all I could do was to wait, hope and pray that we could get a transplant.”

The death of a 52-year-old woman, who the couple know only as Pat, and whose family they have never been able to contact to give their thanks, provided Robert with the gift that has given him 18 years of happy, healthy life.

Jean said: “We can’t stress enough our gratitude to the donor and her family. Without donors no amount of expertise or high tech equipment could have saved Robert.”

One of the most difficult times for the couple was the first month following the transplant. After 10 days, Robert suffered some rejection, a problem that can occur to varying degrees in many cases. Physically, this was a touch-and-go period for Robert. It was most emotionally draining for Jean.

Because Robert was so ill, he had little idea of what was happening to him. Jean, on the other hand, was wide awake and constantly aware of his deteriorating condition. She was helped through by the commitment and dedication of staff at the Liver Unit.

“The staff here were just incredible. They would stay for hours after they were scheduled to be working, just to calm me down and comfort me,” she said.

A year later, just as Robert was beginning to recover, another tragedy struck the family. Robert’s mother Dorothy was brought to the same Liver Unit with a completely unconnected disease, also requiring a transplant.

She had the transplant, but suffered an unrelated heart problem. Six weeks later she passed away.

Almost two decades on, Robert is still coming for his twice-yearly check-ups. His January appointment is with Dr David Mutimer, who he and Jean first met as registrar when Robert was diagnosed in 1991. He is now a Consultant Hepatologist.

Usually, Robert would have to undergo a biopsy for the medical team to assess the current extent of damage to his liver. This would involve his body being cut open, with a small incision, so a sample of liver tissue could be taken and analysed in a laboratory.

From now on, however, Robert will be assessed using a brand new machine called a FibroScan. The machine, which cost £50,000, is the only one of its kind in the Midlands and one of just a few in the UK.

It has been bought with money donated to the Liver Unit by the estate of Dorothy Smith, Robert's mother. It is a thank you, say Robert and Jean, to staff for doing their utmost to save lives and for providing ongoing care and support to them and their family - in their eyes, above and beyond the call of duty.

FibroScan uses technology similar to ultrasound imaging to take a reading of the stiffness of the liver. This can then be analysed instantly by the consultant. Instead of an overnight stay in hospital, having to undergo a biopsy, and a lengthy wait for results, patients can come in for a painless consultation with the doctor that lasts only 20 minutes.

The machine can be used to assess liver damage for all sorts of conditions. Sometimes a biopsy may still be necessary for more complex diagnoses and assessments, but it will no longer be the norm.

Robert and Jean are just happy to be able to help other people suffering from liver disease and to give something back to the department and staff who they say have given them the most precious gift of all – life.

Robert’s liver transplant in 1991 was the 461st performed at University Hospitals Birmingham NHS Foundation Trust (UHB). The first took place nine years before, in 1982. In the 17 years since Robert's operation, the total number of Transplants has reached 3,000. More patients than ever are now going on to enjoy the prospect of at least a decade of healthy life after the operation.

The Queen Elizabeth Hospital, which is run by UHB, is the biggest solid organ transplant centre in Europe. All specialties - renal, liver, heart and lung - are transplanted here. Unfortunately, the waiting list for all of these organs is still long, and a proportion of patients die before a suitable organ becomes available.

The number of transplants we can perform is limited only by the number of donors.

Robert said: "For everyone out there who is not on the organ donors register, we would stress that they make the effort to sign up. We are incredibly grateful for what we have been given and hope that others in the same situation, where all seems hopeless, can be given the opportunity to live again."

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