When Marbeth McConnell got an organ donor card at the tender age of 18, she never dreamed she'd end up on the sick list herself.
Yet the 53-year-old from Ballyclare has a very personal reason for supporting the scheme. She suffers from a potentially fatal kidney disease, nephotic syndrome, that runs in the family and knows that a transplant just might have saved her brothers Charlie and Allan, who died from the same condition aged 27 and 39.
Marbeth said her life had been “turned upside down” by this illness and she's not exaggerating.
The sociable mother-of-two describes herself as “very active, I used to play hockey, was always out seeing people”.
Unsurprisingly, Marbeth has total recall of the start of her illness.
“It was December 28, 2008 when things got bad. I hadn't felt well over Christmas and didn't eat any Christmas dinner. Then my legs, normally the thinnest part of me, swelled up. I'd gone to the Continental market in Belfast with my husband but could scarcely put the soles of my feet on the ground for pain,” she explained.
After Christmas Marbeth's whole body started swelling up, including her face. She said it was horrific: “I immediately made a medical appointment.”
What made matters scary was the fact that Marbeth suspected she might be developing kidney problems like her brothers.
She said: “I remembered my brother Charlie, who was diabetic and the first child with the condition in the Royal Victoria, being in and out of hospital all his life until he died of kidney disease. I looked in my mother's medical journal and they listed 10 signs of nephrotic syndrome or kidney disease. Well, I had nine symptoms and the tenth was weight loss, yet I was swelling up like a balloon.”
In fact, the weight loss — an incredible two and a half stone — came later, once Marbeth had her diagnosis and was on medication. All the weight she shed was fluid caused by her disease.
The day after Marbeth swelled up, she saw her GP Dr Rogers who tested her urine and immediately ordered an ambulance. Within hours, the patient was in Antrim Area Hospital with, as she puts it, “five renal doctors at the end of the bed”.
She didn't want to accept how ill she was, partly because her husband John, who owns McConnells Bar in Doagh, had just treated her to a special birthday present.
“He'd spent £10,000 on a world tour for my birthday. Every time I told the doctors another place we were going, they shook their heads. Eventually, after I said I had to be out of there by January 5, my doctor said, with eyes like organ stops, ‘If you go on that holiday, you'll come back in a box.'“
They were also mildly surprised that Marbeth had diagnosed herself correctly, but kidney disease is something she knows about.
“My symptoms included tiredness. I was always tired and as I was working away as a classroom assistant at Tir na Nog School in Ballyclare, I thought it was overwork. I kept thinking I just needed a nap, but I could have slept forever.”
What keeps Marbeth alive these days is a lot of drugs — counting, she said she needs to take 11 separate medicines every day. There's also her spirit. This generous woman now acts as a befriender for Age NI, something she took up when she had to give up her beloved teaching.
“I see Florence Alexander every week for an hour or so and it's great for both of us. I was pleased to sign up to the scheme as it gets me out of the house.”
Although Marbeth improved after diagnosis, she's since had other health problems. In August 2011, she became unwell with septicaemia, the condition that contributed to the death of her younger brother.
She recalled: “My daughter Megan, who's 23 and models and sings in London, was home. I'd started to feel stone cold and went upstairs to bed but I couldn't lift my arms to take off my T-shirt.
“When Megan said did I want a coffee, I said I needed an ambulance. One arrived, they wrapped me in foil and took me off.
“Megan was distressed but at the Antrim, they tested my bloods and said I had developed the worst strain of septicaemia. I wanted to be at home when Megan went back, so the doctor allowed me home on condition I allowed nurses to treat me three times a day. Of course I said yes.”
Once that disaster had passed, Marbeth was again in the wars. She'd developed the painful muscle condition fibromyalgia. So what keeps this inspiring woman going? Without hesitation, she said: “John my husband is an absolutely wonderful man.” Then there's Marbeth's faith: “I believe in God so I'm not angry about this. He never sent anybody anything they couldn't cope with, but I don't want to preach.”
What she does want to do is appeal to people to fill in organ donor forms, and Marbeth supports the idea of making organ donation something you opt out of rather than opt into.
“If you can help just one person after you die, it's worth it. I want to give my eyes to help a child or adult see.” She added: “I'm a smoker so my lungs probably aren't worth having, but you can have my heart, my liver, everything except my soul.”
The only reason Marbeth herself wasn't put on the transplant list when her illness began was because she wasn't quite ill enough — “My kidney function was 18 then, now it's 42. If you're 10 or below, you go on the list.”
But she's determined to make waves and if necessary, shame the rest of us into leaving the legacy of health.