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Double lung transplant survivor: I woke up and was high on being alive

By Western Morning News  |  Posted: October 12, 2013

By Tom Bevan

  • Kirstie took hope from a Latin motto: "While I breathe, I hope"

  • Kirstie and husband Stu are now looking forward to buying their first home

  • Kirstie back on her feet after her second transplant

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Kirstie Tancock relives the ordeal of surviving two double lung transplants.

As she prepared for the first of her two death-defying double lung transplants, Kirstie Tancock said she had made peace with the prospect of dying.

There was an acceptance of her likely fate as the pain and invasiveness of treatment had become too much.

Two years on and Kirstie was enjoying married life, had just returned from honeymoon, raised thousands for charity and held down a job.

So when her lungs deteriorated to the point she was told she had just weeks left to live, her feelings second time around could not have been any more different – she said she had everything to live for.

Kirstie, who has just celebrated the 24th birthday she thought she would never see, is alive because she, and her family, were not willing to lie down and die.

"I told my doctor I am going to buy a house and was not ready to die yet," she said. "During my first transplant when I was on ECMO [respiratory support] I was ready and had made peace with the idea.

"But I had got back my whole life. And my life was the best it was going to be. Everything was coming together, and I was not ready to die.

"When I was on ECMO it was so horrific I had wanted to end the pain. This time I wanted to live. I could not accept there was no answer and there was nothing else that could be done. I could not accept death and do nothing."

Kirstie had been sitting with her doctor, a psychologist and her husband Stuart when the devastating diagnosis was delivered.

In the preceding weeks her lung function had dropped to a dangerous level and despite radiation therapy her condition continued to deteriorate.

"It got to the stage where the medication they were using was heavy pain relief, and I knew I was being pushed towards palliative care.

"It was not mentioned directly, and they just said they were going to be discussing things with me on the Thursday morning.

"If they decided I was going to be re-transplanted I would go straight on the list but things were pretty bad. I had started BPAP [ventilation] to get air into my lungs. I knew things were not going well.

"Then on the Wednesday my doctor came in with just the psychologist and sat down on the end of the bed.

"She told me I was not going to get another transplant and they were going to progress with palliative care.

"They discussed where I wanted to die. I was so far away from everybody but I didn't want to go home. I was going to go to the hospice in Exeter and the plan was to make me as comfortable as possible.

"My first thought was I was looking forward to buying a house. This was just a reminder I was not going to be able to do that.

"When you are told you are going to be dead within a couple of weeks you don't really hear it. My brain would not take it in. But I now think back and look at how ill I was and I was not even going to make it to the hospice."

Kirstie's first transplant, which took place just weeks after walking up the aisle and became the focus of a BBC documentary Love on the Transplant List, involved Kirstie being flown from Exeter to Harefield Hospital, and a match was found when she was just moments from death.

Although there were no television cameras to capture the drama this time around, the circumstances of her getting a third chance of life were no less dramatic. "Stu and my mum both couldn't stop crying," Kirstie recalls.

"But then my mum said we should not accept this. She went on a mission to prove the test that was done to determine that I would not be re-transplanted was not effective.

"She went around talking to everyone, pleading that things were not right. She really had to push for it. If she had not fought and forced them to change their minds about re-listing me I would not be here.

"My surgeon then phoned specialists around the world and eventually said I could be put back on the transplant list.

"But I was told not to get my hopes up. I had 80% antibodies, which meant of the small hope that a match might be found, my body would reject 80% of these.

"The chances were so slim that I would not normally be put on the list in that condition. They don't want to give people false hope."

Kirstie said the plan was still to go to the hospice, but she fought against this as it would leave her a long way from hospital if a match was found.

"When I was told I was going to die someone posted on my Facebook page, in Latin, 'while I breathe, I hope' – and that was how I was feeling.

"Then on the Friday evening I was watching television and my transplant coordinator came in. Stu thought he was there for a social visit. I just thought, 'No, you are joking. What are you doing here?'

"He said: 'Hey guys, so a match has been found, but we are not going to know for sure until the morning.'

"We were all just gob-smacked but I was really excited and felt ready for it.

"My mum did not want to tell anyone at that stage but I was like a kid and wanted to tell everyone.

"I was told at 8am it was a go. I had an awful night's sleep with so many nerves. My family knew I would not have had the strength to pull through emotionally if it had not been a success.

"I was given just half an hour to prepare for surgery and was then taken down to theatre.

"To me I never had a worry making it through transplant. Whether it happened or not, that was the worry. When I woke up after the transplant I had a feeling of calm. There was not the feeling of pain there was first time around.

"I could move and breathe on my own. I knew this time everything was OK. The first time when I woke up I still had a huge battle to walk and talk. But this was not going to be as hard.

"I had so much more strength in my muscles. In fact the physio said she had never seen anyone in ITU so happy.

"I was high on medication and high on being alive. I was going to do all the things I had planned.

"The more emotional side of being told I was going to die and then living is what I am dealing with now.

"When I discussed things with my family they reminded me of a lot. For example I had forgotten phoning some of my family members breaking the news that I was going to die.

"I think I blocked these things to protect myself. I could not deal with all those emotions in one. Nothing can trump how hard the first transplant was. It was the hardest thing I have ever done.

"This time the recovery was so much easier and that is how it should be. You should not have to go through being on ECMO. I just wish our organ donation system wasn't so dire people had to get to that point."

Kirstie left hospital three and a half weeks after her operation. Now, eight weeks on, her lung function is up to 83 per cent and rising. She lives with the constant fear and burden of going through it all again, but is planning on making the most of all the time her new lungs give her.

"Any time beyond transplant is time you were not going to have," she said.

"I have thought I am going to be taking away someone's first chance. But my doctor told me I have a right to live.

"I know I am extremely lucky and every day is a bonus. But at the same time I just want to do what any young person is doing – which is living a life.

"The biggest emotional thing for me was my first transplanted lungs failing. I did not want to give them up. I was connected emotionally and they had saved my life. I did not want to lose any connection with my donor.

"But at the same time I was never going to go down with the ship.

"My first donor will always be with me and I will forever be hugely grateful. It got me to where I am and without them I would not have been able to have this second transplant. I would not have experienced any of the amazing things I have done over the last two years. I got great use out of them and will always be thankful for that.

"I don't know anything about my second donor yet. I just know that somebody died and a family is in mourning.

"I hope that my donor can rest in peace and their family can find peace. I will be forever grateful they made the choice to donate."

Kirstie is currently finalising buying her first house in Honiton and is looking forward to doing it up.

She is currently putting together a set of ten hospital packs for long-term patients and is looking for suitable nominations.

She would like to get into health presenting and get back into teaching pole dancing.

And she will continue to campaign to encourage people to sign up to be organ donors.

"In Exeter we are definitely one of the most aware cities regarding organ donations, and the South West has some of the highest percentage that have signed up. That is something I am very proud about."

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