How a Lancaster woman with just days to live was saved by a 'miracle' in a box
Helen Rawlinson felt her life was slipping away from her whilst waiting for her second liver transplant, but as she wrote her final wishes, a miracle happened.
The 29-year-old from Lancaster had been placed very low down on the list for a transplant as surgeons feared her body would reject a new liver because of her medical history.
Just as she felt she had nothing left to give, doctors gave her one last shred of hope - a special machine flown over from America.
Her consultant liver specialist at St James’s University Hospital in Leeds, Magdy Attia, had been involved in clinical trials with American company TransMedics which had built a pioneering Organ Care System machine. This ‘box’ mimicked conditions in the human body, keeping a donor liver healthy with blood circulating through it.The machine was still undergoing trials in Massachusetts, but the firm agreed to loan it to the hospital.
Helen says: “As soon as I had no fight in me left, a miracle came. “Mr Attia explained he had done some trials with a new OCS Perfusion machine from America. “Although a DCD (Donation after Circulatory Death) second liver transplant had never been done before on the machine, it had worked very well in his trial with first transplantees. He said ‘we are running out of options and time’ and had asked to borrow this machine.“The company had agreed, which just seemed amazing that someone would do that for me. “Together with the fantastic team at Leeds and the work of this machine, the donor’s gift was perfect for me and within a matter of hours, I actually had a future to look forward to. “It is like stepping off a rollercoaster I’ve been on for the past two years.”
Helen’s first liver transplant occurred in 2008, after she had spent years of battling autoimmune hepatitis, where the immune system attacks the liver.But in 2016 her liver came under attack again and she was also diagnosed with a heart defect which needed an operation to insert a stent.She was placed on the organ transplant list again in March 2017. But her risk of a second failure put her 47th in the queue for a high-quality donation after brainstem death (DBD) liver.
Helen says: “I had been well for seven years, getting on with life and I was going to clinic every nine months.“But I started to feel fatigued all the time. “I spent the next few months going in and out of hospital, but it was becoming more aggressive. “I was getting even more fatigued to the point were I was struggling with everyday tasks and had to stop working.“The hospital had also found that I had a heart defect, which would need repairing with the aid of a stent, as this would stop me getting on the transplant list.
“I was on so many steroids that it would be an extremely risky operation. However, my liver was being so heavily attacked by own immune system, it was looking more likely I was going to have to be put on the transplant list so we had to take that risk and I had the heart operation in January 2018.“After this, my liver deteriorated very quickly, I was now struggling to walk and do normal everyday tasks.“I was again back and forth to the hospital as I developed an infection and I needed to be put on the transplant list as soon as possible.
“The feeling of being placed on the transplant list is like no other, it is so bittersweet as you feel relieved that you are on there but also know that there are no guarantees and who knows how much longer you have left. “I was now practically housebound, I couldn’t walk far at all, or master the energy to wash and change, as that would wipe me out for the day.
“Life was non-existent. I was so poorly I could just see everything getting worse and it was so scary but you didn’t want to worry those closest around you. “I ended up not leaving the hospital for four months after this.
“Shortly before I was put on the list, it had changed to national allocation instead of regional, therefore the hospital had very little control over where the organs went. “Due to the fact I needed a certain type of donor, it had become a point based system, looking at whether I had any other complications, how risky the surgery would be and how likely I was to survive after the transplant. With this being my second and having other complications (my heart), it added more risk and I was classed as being less likely to survive and therefore lower on the list.”
As Helen kept deteriorating and there was little hope of a donor, doctors told her to prepare for the worst and asked her is she would like to marry her fiance, Darryl Flynn.Helen recalls: “I accepted the fact I had to start writing my wishes and the letters but my wedding to Darryl was something I could and hope for and I just felt I would be giving up, so I declined.
“I felt as though my life was slipping through my fingers and there was literally nothing I or anyone could do about it. “I felt scared, lonely, and sad that this is how my life was ended after I had worked so hard to get it back after my first transplant. Reality was setting in, as my body was growing weaker and I had no fight left in me.“But out of nowhere, a miracle happened. My amazing donor and their family agreed to give me the most beautiful gift, another chance of life.”
Helen is now planning her dream wedding and is back at work, as a teacher.She adds: “I cannot thank the team at Leeds enough as they were incredible and got me through the worst time of my life. More than anything, I will never be able to express my gratitude to the donor and their family for such a selfless kind act, and of course the surgeons and the incredible perfusion machine, without which I wouldn’t be here today. “If I do anything in my life, I want to raise awareness of how important it is to be an organ donor and how amazing and life changing these perfusion machines are and how many more lives could be saved.”
Throughout her journey, Helen has been supported by her family and friends, especially her cousin Stephen Cletheroe, of Lostock Hall, who took part in the 85-mile Manx Telecom Parish Walk in aid of Leeds Cares, to fund a perfusion machine for St James Teaching Hospital. So far he has raised more than £2,200.Helen says: “Stephen has been absolutely fantastic in helping with this, not only doing such an amazing physical challenge and giving up his time for this cause, but helping raise awareness. “This isn’t about me or my story it is about showing that these machines along with amazing donors can save so many more lives and just showing the difference it can make to someone.”
Stephen, 53, who has completed the walk in previous years for the hospital, adds: “It was horrific watching Helen go through all this.“So I wanted to help the hospital to raise money for a perfusion machine so it can be used regularly, rather than having to be flown in.“The walk was really hard. I completed it in 22 hours, 27 minutes and was 83rd out of 1,341 entrants. The walk is an annual event which takes in parishes around the Isle of Man.“My brother-in-law Jordan Humes, of Manchester, joined me.“He walked 19 miles in his work boots, with no training and it took two weeks for his blisters to go.
To make a donation, www.justgiving.com/fundraising/85miles24hourswalkingwithhelen