Kathryn Hand doesn’t have to imagine it – for four years, that was her reality.
It affected every aspect of the Kirkcaldy mum of two’s family and work life.
But thanks to an innovative transplant in December 2016, she is now able to live a “normal” life.
Kathryn is one of 51 Type One diabetes patients who have benefited from islet therapy since the first ever islet transplant took place in 2011 at the Royal Infirmary of Edinburgh.
Islet cells are extracted from a donor pancreas and implanted in a patient’s liver to help restore hypoglycemic awareness and reduce dependence on insulin.
In Kathryn’s case, the results have been incredible – after 38 years, she is no longer insulin dependent.
She shared her story at a meeting with Public Health Minister Joe FitzPatrick on Monday to mark the start of Organ Donation Week.
From September 3 to 9, the ways in which organ donation has transformed lives is being highlighted in a bid to encourage people to consider joining the NHS Organ Donor Register.
Having lived and coped admirably with Type 1 diabetes for 32 years, in 2012 Kathryn developed impaired hypoglycemia awareness (IHA) meaning she was unaware of her blood glucose level dropping too low.
IHA most often develops in people who have had Type One diabetes for more than 25 years.
After all other treatments were exhausted, Kathryn was placed on the transplant list.
Incredibly, just one day later, she received a call telling her that a match had been found.
Kathryn (51) said: “Another patient ahead of me on the list was unwell and could not undergo the procedure.
“So I was called into the hospital one night and received the transplant the following day.
“I was really lucky – it doesn’t usually happen so quickly. I was speaking to someone today, in fact, who has been waiting since last May for a match.
“That’s why it’s so important for people to join the organ donor register.”
Kathryn did not endure her IHA journey alone – her husband Mark Crawley and daughters Rachael (22) and Niamh (18) were with her every step of the way.
And Mark was so inspired by Kathryn’s recovery that he joined the register.
Kathryn explained: “For four years, I had no awareness of when I was going to go into hypoglycaemia.
“It was a constant worry. We all tried not to show we were worried but we all were.
“That’s why I agreed to go on the transplant list.
“Mark was terrified leaving me alone for long periods of time, especially when he was working night shift. He knew if my car was there in the morning, something had happened.
“I’d been on the organ donor register for years but Mark didn’t want to do it.
“After I got my transplant, he registered – it was the first thing he did.”
It would be fair to say that the transplant has been life-changing for Kathryn, who works in procurement at Edinburgh Airport.
“The complications of my diabetes were so severe I had to test my blood glucose up to 15 times a day,” she said.
“I was testing every hour on the hour because I could have gone into hypoglycemic coma at any time.
“I had to change my job several times too as I wanted to work closer to home.
“I had to inform the DVLA and when I was driving to and from work, had to stop every 10 to 15 minutes to test my blood glucose.
“So an hour’s journey was taking me up to two hours.
“I was constantly anxious when I was left on my own in case something happened when my family were out.
“I was scared but also excited about the transplant – it has given me my life back.
“I’m no longer insulin dependent and am now leading a ‘normal’ life.
“I don’t have to worry about calculating how many carbs are on my plate and how much insulin I need to take – you become a bit of a mathematician!
“It’s nice to be able to go out and enjoy a meal without having to calculate it all and my fingertips are back to normal now too.”
However, Kathryn is maintaining her healthy eating habits.
Explaining why, she added: “Organ and tissue donation is the ultimate gift and it has changed my life.
“I want to make sure I take good care of that gift.
“I will never stop being grateful to the person who made the normality I now have possible.”
We need everybody ...
Organ Donation Week aims to encourage people to consider joining the NHS Organ Donor Register and share their decision with their family.
Continuing to increase registrations is vital, as less than one per cent of deaths in Scotland happen in circumstances where the person is actually able to donate their organs.
Public Health Minister Joe FitzPatrick said: “It’s vital we continue to raise importance of the need for families to talk about organ and tissue donation.
“Not only is it life-saving but, as Kathryn’s story highlights, it can be life-changing.
“Making your organ decision known can transform up to seven lives and many more if tissue is also donated.
“We should be proud that half the nation has shown their support for organ donation by joining the NHS Organ Donor Register in Scotland.
“But with more than 550 people still waiting due to a shortage of organs, there’s more we can do.
“If you support organ donation, help us make this week count by considering joining the register and having that important discussion with loved ones.”
John Casey, clinical adviser for organ transplantation in Scotland, heralded islet transplantation as “an important step in the treatment of diabetes in Scotland”.
He added: “Islet transplantation has the potential to transform and improve the lives of patients with Type One diabetes and their families.
“We need more people to sign up to the NHS organ donor register so that more lives can be saved and turned around.”
To join the NHS Organ Donor Register, visit weneedeverybody.org.