A 40-YEAR-OLD social worker from Enniskillen has described the terrifying experience of feeling like she was “drowning” in her own body as a result of a rare kidney disorder.
For around a year and a half, unbeknownst to Maureen Woods, her body was swelling with fluid as a result of nephrotic syndrome.
At its worst the passionate charity worker believed she was having a stroke when her face, lips, eyes and legs had swollen to twice their normal size and she had gained two stone.
Given the rare nature of the condition, the actual cause of Maureen’s symptoms had gone undetected over the course of a number of months this year, despite a number of trips to her local GP and Craigavon Area Hospital.
She had even taken on a fundraising trek to Peru in aid of the Cancer Fund for Children over the summer, despite feeling incredibly unwell.
It was only last month, when her brother told her she needed to attend her local Out of Hours service, that Maureen was finally diagnosed with a rare type of kidney disease.
Before this doctors had told her the weight gain was an indication that she needed make changes to her diet to lower her cholesterol and that the swelling was down to an allergic reaction.
“I was swelling on and off since July 2016,” Maureen explained, “But doctors weren’t able pick up on it. I thought I might have been anaemic but the blood tests showed up nothing.
“The last two months have been horrific.”
Maureen had initially gone to her GP in April this year.
“He told me I just needed to cut back on sweet stuff, which I found really frustrating because I knew I had a good diet and I was training for the Peru trek, walking 16 miles, four times a week.”
She struggled through the trek in June, raising just shy of £5,000.
“I don’t regret doing the trek but it was a struggle,” said Maureen.
Low on energy as a result of the kidney disorder, she recalls going to the hairdressers and falling asleep in the chair.
“When I was out at work I would have to pull over in the car just so I could have a rest,” she said, “I would have been going into the office with big fleecy blankets to keep myself warm and using them in the car as well. I knew it wasn’t normal.”
Her condition became steadily worse in September.
Her colleagues in work were becoming increasingly concerned for her too.
Over the space of a few days at the beginning of October Maureen attended her local GP surgery, Craigavon Area Hospital’s A and E Department and returned once more to her GP surgery.
“I was being told I was having an allergic reaction but I felt like I was having a stroke,” she said, “I felt nauseous, I could hardly walk on my feet, my skin felt really tight and I wasn’t going to the toilet. My face was so swollen I looked like I had been beaten up.”
Ahead of her 40th birthday on October 16, Maureen made the journey down home to Fermanagh from Newry where she lives, to be with family.
“My brother, Paul, looked at me and said: ‘Oh my God what has happened to you?’.
“I looked in the mirror and I didn’t even recognise myself. I felt like I was drowning in my own body.”
Maureen attended her local Out of Hours service.
“The doctor took one look at me and told me I needed to be hospitalised.
“I was taken straight to Outpatients.”
She spent her 40th birthday in hospital.
“I was just so relieved that I finally knew what was wrong,” said Maureen, “I was doubting myself, thinking that I was overreacting. I truly believe if I hadn’t come home for my birthday, I would have died. If the swelling had continued, I would have been at risk of heart failure. And I wouldn’t have had the courage to go back to my doctor because I felt like I was being a nuisance. Now I know that while my condition isn’t curable, it is treatable, and I have come to accept that.
“The staff at SWAH were second to none,” said Maureen.
She has now been placed on a strict low-salt diet and cannot drink any more than 1.2 litres a day.
“My initial response to the weight gain was to do more exercise, putting more strain on my body. I am not allowed to do any exercise now.”
Maureen believes the trek in Peru accelerated her symptoms, and potentially saved her life.
“The trek wasn’t the cause of this -- I already had it,” she said, “I could have been walking around with this for years not knowing I had it. It is just a build up of fluid over time.”
Maureen says she owes so much to the staff at SWAH and the Out of Hours doctor who recognised the severity of her symptoms.
Despite her condition, her determination to take on another trek some day has not diminished and she is as passionate as ever about fundraising for charity, including raising money to supply five TVs to the Emergency Procedure Unit in Altnagelvin where she had her biopsy.
“Anyone who can give some money towards this can drop it into Reilly’s shop on the Cornagrade Road,” she said. “I want my experience to have a positive outcome for other people in the same situation.”