Meet Cathy McCracken, the NI mum whose diary will chart her wait for a transplant.
Cathy McCracken has had to put her life on hold at just 40 years old. Doctors have told the Lisburn mother-of-two that she needs a heart transplant — and her case is so urgent, her condition so fragile, that she will not be able to leave hospital until a new heart is found.
Cathy has had to leave behind husband Leslie, 18-year-old daughter Sarah-Louise, and son Daniel (8) in Northern Ireland while she receives the necessary treatment to keep her alive at the Freeman hospital in Newcastle-upon-Tyne in England.
Her life was thrown into chaos after being diagnosed with dilated cardiomyopathy — a disease of the heart muscle causing it to become so weak and enlarged that it cannot pump blood effectively.
Tragically, it’s a medical term that Cathy was already familiar with — the same condition claimed her mother’s life at just 36. She was only diagnosed when the disease was at an advanced stage; there were fewer treatment options then, too.
Speaking by telephone from her hospital bed, Cathy puts her predicament simply — and poignantly. “Getting a new heart would give me a whole new lease of life,” she says. “It would mean the world to me and my family.
“The doctors have told me that I won’t get out of hospital until I get the transplant, no matter how long I have to wait.”
From today the Belfast Telegraph will be publishing weekly extracts from Cathy’s diary, charting her thoughts and emotions as her wait continues. Though her situation can make for frightening reading, it’s one that Cathy has been coming to terms with since she first experienced problems four years ago. After visits to casualty and her GP, her condition was identified. She recalls: “I would get out of breath when I went walking. Eventually they sent me for a scan of my heart and the consultant took one look at it and told me I wasn’t going home.”
For most people, dilated cardiomyopathy is a condition which can be managed and does not limit the quality or duration of life.
However, Cathy is one of the unlucky few whose life is at risk.
“They tried me on some drugs which controlled it for a while but after a year my condition got worse,” she says. “Eventually I was fitted with a pacemaker, but it doesn’t control the rhythm of my heart. Doctors have put it there as a preventative measure in case my heart stops suddenly.”
A transplant remains her only option. “I met with the transplant team at Belfast City Hospital. They told me about the possibility of getting a new heart. I went over to Newcastle for tests and then had to go away, try and get rid of some fluid and come back in a few weeks.”
Explaining the toll the condition takes on her, Cathy says: “It causes my body to build up fluid, which makes me feel really ill. Even when I walk a couple steps it makes me physically sick. I’m on a drip and take tablets to help me lose the fluid but it means running to the toilet all the time so I don’t get much sleep.
“When I first came over here I couldn’t lie down flat either because the fluid builds up in my stomach and lungs and I couldn’t breathe. I’d to try and sleep bolt upright which wasn’t comfortable.”
While she has been made more comfortable as a result of the current treatment, each day in Newcastle is one away from her family.
“It’s mind-numbingly boring here, although everyone is really good, and it’s great speaking to others in the same position.”
Cathy makes a stab at humour — “It’s sad when you have to say the highlight of your day is getting a new drip put in your neck” — but quickly returns to the natural concerns of a mother, admitting: “I do worry about Daniel and Sarah-Louise although they seem to be coping.
“I suppose I’m lucky — there are over 300 people in Northern Ireland waiting for a transplant of some sort, so while I’m here, I’m considered a priority.
“You don’t realise what it is like until you’re in this position, but I’d tell anyone not on the Organ Donor Register to get their name down.
“It’s not going to hurt to donate organs and it will save lives. I try not to think about how long I might have to wait for a heart but when I do get one I will be able to start living again.”
- The Belfast Telegraph has joined forces with Transplant UK to raise awareness of the daily struggle faced by people here waiting for a transplant. Like Cathy, they have been told their only chance of survival is a transplant. But with only a quarter of the Northern Ireland population signed up to the NHS Organ Donor Register, people are dying needlessly.To sign up and save lives, text SAVE to 84118, telephone 030 0123 2323 or log onto www.organdonation.nhs.uk
Now read Cathy's first instalment...
- February 24: I have been here two weeks today. One of the transplant team came up to me today and said they may have a heart for me. They’re checking it out to see if it is a match. They took loads of blood tests from me but I won’t know until later today. I’m not building my hopes up too much at this point and I won’t tell anyone until I know for sure, but fingers crossed. It would be nice, no not nice but brilliant, super, fab, if it went ahead. Knowing my luck it won’t happen and then I have dialysis to look forward to — I can’t wait to get another big tube stuck in my neck. I waited all day and they told me my blood was good and my tissue was a match but the heart just wasn’t good enough. So I was all showered and in my hospital gown for nothing. I had a bit of a cry but that was it because I hadn’t built my hopes up too much. I am really tired. You don’t get a proper sleep when you have to go to the toilet all the time. No point complaining — tomorrow is a new day, new start and new hopes so I have to look forward and not dwell on today. Sarah-Louise is coming tomorrow and I am looking forward to seeing her. I miss wee Daniel and would love a cuddle from him.
- February 25: Didn’t sleep last night again. Got a bit upset last night and had a good cry. I think the events of the day caught up with me. It was a rollercoaster of ups and downs, then straight off the tracks at the end. I find it hard and a bit of a burden being the strong one all the time. I look calm on the outside and on the inside I am screaming. I’m a bit concerned about Daniel as he is playing up but it must be very hard for him. He hasn’t said much but he is bound to be missing us.
- February 27: I am getting very close to blowing my top and going home and saying to hell with it all. I really don’t care whether I die or not because I am sick, sore and tired of this.