Katie becomes UK’s longest ever lived combined heart and lung transplant recipient

A Kent lady has now lived the longest known time of any UK patient with a combined heart and lung transplant.

Katie Mitchell celebrated the 38th anniversary of her transplant a few days ago and passed the previous record in the summer.

Katie, aged 53, an operations manager from Sidcup, is backing NHS Blood and Transplant's urgent call for people to confirm their support for donation on the NHS Organ Donor Register.

And she hopes her story will give hope to people facing complex transplants and people worrying about organ rejection.

"Thanks to organ donation, I was given the gift of a normal life," said Katie.

"I think about my donor a lot, especially on the anniversary of the transplant. I think about their family and what their family must have felt at the time.

"I just know my donor was a young female. Her family made that decision at a terrible time in their lives. I am so grateful.

"It's quite difficult to put into words how it feels to know I am now the longest lived heart-lung recipient in the UK. It's mixed feelings. People I know who had the same transplant have passed away in front of me.

"But it's a blessing and amazing to feel I've had all this extra time.

"I don’t really know why it has worked so well. Perhaps the immunosuppressants suit me well,. Everybody has so many different reactions to the medications, and everyone has their own regimen.

"Without the medical team, the transplant team, my donor and their family, none of this would be possible without them."

Katie's story

Katie was diagnosed aged 11 with a rare condition called Eisenmenger Syndrome, a congenital heart disease. She had high blood pressure in her pulmonary arteries, causing an increased resistance to blood flow through the lungs. This leads to irreversible lung damage and heart failure.

At the time she was diagnosed, there was no treatment.

Her transplant team, led by Professor John Wallwork, decided to go ahead because they felt she was coming to the end of her life, aged just 15.

Before her transplant, she was so ill she could barely climb the stairs, and her lips, cheeks and nails were blue due to the lack of oxygen in her body.

"I just couldn't breathe. It took me about 15 minutes to get up or down the stairs and then that was me for the day, I would stay there," said Katie.

"The moment I came around from the transplant, I was pink – that’s what everybody noticed. The improvement in breathing was immediate."

Katie had her transplant at Royal Papworth Hospital NHS Foundation Trust in September 1987.

Katie at hospital, walking on a treadmill following her transplant Papworth performed Europe's first successful combined heart-lung transplant in 1984. Even today, they are extremely rare and complex, with around 5 per year in the UK. There are currently 8,124 people on the transplant waiting list including 12 people waiting for a heart-lung transplant.

Katie said her transplant is still functioning well. In addition to her heart-lung transplant, Katie has also had 2 kidney transplants from deceased donors, in 1994 and 2015, at St Guy's and St Thomas' in London.

She added:

"I went to an event at Papworth and there were a couple of young women who had their heart-lung transplants recently.

"I think it did them good and their parents good to see how long I and other people have lived.

"Very often people are told they might only get 5 or 10 years with a heart or a lung transplant. To be able to see me and other people who had lived for many years made a big difference to them.

"I think my story is just proof that organ donation and transplantation does work and you can live a normal life."

NHS Blood and Transplant found that Katie has lived the longest based on patient follow-up data supplied by transplant centres.

There is no worldwide database of transplant recipients, so there is no definitive way of knowing which heart-lung recipient has lived for the longest in the world.

Katie, with her dog Katie, who is married to IT worker Lex and has a stepdaughter, enjoys spending time with her friends, going away, and time with her dog.

She said of organ donation:

"Until you are in the situation of needing a transplant, I don't think anybody understands how awful the wait is, it's horrendous.

"I hope more people support donation. I do think that meeting someone who’s had an organ transplant can really change your perspective.

"I have been keen to get on with life. The whole point of organ donation is to give you the freedom to do what you want. I never wanted to be a victim of illness. The point of having a transplant is to make the most of the gift your donor has given you."

Statements

Statement from Anthony Clarkson

Anthony Clarkson, NHS Blood and Transplant Director of Organ and Tissue Donation and Transplantation, said:

"Combined heart and lung transplants are rare, very complex, and they have a higher risk of organ rejection, but Katie's truly exceptional story shows how organ donation saves and improves lives.

"Most of us would accept an organ if we needed one but there are not enough donors. Katie's donor family gave her a chance when Katie had no other option. But sadly, someone will die today waiting for an organ transplant. If you confirm your decision to donate on the NHS Organ Donor Register, that 2 minutes can save up to 9 lives. It's the best thing you’ll do today."

Statement from Marius Berman

Marius Berman, surgical lead for transplant at Royal Papworth Hospital NHS Foundation Trust, said:

"It's fantastic to see Katie continuing to live life to the full, 38 years on from her transplant. To see it succeed so profoundly is testament to the skill of many NHS teams, the generosity of donors and the resilience of patients like Katie.

"Her journey offers real hope to others currently waiting for transplants and reminds us all of the importance of organ donation."

Statement from Aaron Ranasinghe

Aaron Ranasinghe, Chair of the NHS Blood and Transplant Cardiothoracic Advisory Group for Hearts, and a consultant transplant surgeon, said:

"I would like to personally congratulate Katie and the team that look after her. The operation is much less common than when Katie received her transplant, with less than a 100 being performed per year worldwide and only 30 performed in the whole of the UK in the last 8 years.

"This is a big operation and the early survival from the operation is around 85%. Once patients have survived for one year, just over a half will be alive at 10 to 12 years, so for Katie to have reached this milestone is fantastic.

"We should remember that none of this would be possible without the selfless gift of the donor family."

How you can help

You can find out more about organ donation and confirm your decision through our website. You can also confirm your support for organ donation by calling 0300 123 23 23 or using the NHS app.