20 September 2018
Patients at Harefield Hospital joined others around the country to mark Organ Donation Week 2018 in September, and to raise awareness of the importance of signing up to the NHS Organ Donor Register.
Deborah Battams, 39, has cystic fibrosis and is waiting for new lungs. She is a patient at Royal Brompton Hospital and relies on oxygen to help her to breathe, along with strong antibiotics to fight life-threatening lung infections.
Deborah’s lungs are so weak, she has been told a transplant is the only answer.
She says: “For someone with cystic fibrosis, my health had always been pretty good.
“But in 2015, I developed double pneumonia and since then my lungs have been getting progressively weaker and more prone to infection.
“Accepting I needed a transplant was tough. Because I have cystic fibrosis I have always done everything I can to keep myself really well – exercising and eating the right foods.
“But the truth is, it hasn’t been enough. My lung function is so poor now the only way I will survive is by getting a transplant.”
Initially, Deborah was reluctant to undergo the surgery. “Deciding to have a transplant can be quite tough. It’s a big operation and I was initially resistant. In the end, I had to accept I wasn’t getting better.”
'The donors and their families give us hope'
“You’re watching everyone else living,” she explains. “You’re watching your family watching you just existing. Everyone’s lives are also on hold. Nothing can be planned, so there’s nothing to look forward to. We just keep waiting for that call.”
Deborah, from Ampthill in Bedforshire, has completed two degrees, and owns an osteopathy practice. She has married for the second time, after losing her first husband who also had cystic fibrosis.
She adds: “When I was born I wasn’t expected to survive. I do consider myself incredibly fortunate to be alive. I do find happiness in pretty much every situation. I know I was never guaranteed these 39 years. I have had the most amazing life. I have travelled, been to university twice, I am happily married and I have the most amazing family.”
“The trouble is, I don’t want to leave my husband and family. I want to live.”
“The donors and their families give us hope. It’s a huge deal to think of others on potentially the worst day of that family’s life. I hope the knowledge something positive has come out of that loss gives donors’ families some comfort.”
Waiting for a heart transplant
It’s a sentiment echoed by Harefield Hospital patient Aristos Psaras, who is waiting for a heart transplant.
The 51-year old, who suffers from cardiomyopathy (a disease that affects the heart muscle) and arrhythmia (an irregular heartbeat), has been unable to leave the hospital for four months.
“A transplant is my only hope. I was a businessman in sales – an extrovert, a larger than life character – but now I am so weak I can hardly talk. As my heart failed, my life has got smaller and smaller.
“My daughter Ophelia is only seven. I so want to spend more time with her. As we live up in Oxford, I can only see my wife and daughter once a week.
“Mentally, I am strong. But I made a pact with God – I have begged Him to give me another 20 years. I would love to see Ophelia as a grown adult before I leave her.”
The thought that Aristos might receive a heart gives him hope. He says: “I have seen people given new lives because of their transplants.
“There is an astounding need for people to think about transplants. Families can take solace that through their loss, they can save many lives.”
Visit the NHS Organ Donation website to find out more.