Health Case Study: Living Life with Lupus
With a cluster of blood clots on his lung and crippled by mystery aches, pains and fatigue, Brendan Lynch feared he had cancer, says Joy Orpen. But then a doctor diagnosed him with an incurable autoimmune disease
Brendan Lynch has lupus. The 38-year-old knows of only two other men living with the condition in his orbit, and, in Ireland, nine out of 10 lupus sufferers are women – most of them are aged between 15 and 45.
In the US, lupus is most likely to affect African-American women. Yet, no one really knows what causes the disease, which is difficult to diagnose because its symptoms mimic a range of illnesses.
In Brendan's case, he started to feel unwell in 2006. "I began to tire easily and got pains in my joints," he says.
"My right elbow used to lock, which made shaving difficult."
After an underactive thyroid gland was diagnosed, the medication he was prescribed seemed to help.
But, as time passed, Brendan, a trainer with Cavan company, Wellman, began to experience various aches and pains, as well as crippling fatigue.
"When we first got together, Margot [his wife] and I used to stay up late watching movies and having a glass of wine," he says.
"But it got that, by 10.30pm, I'd be gone. I also started getting pains in my soles, which made walking hard."
Brendan soon developed a swelling in his right calf. He was sure that he had pulled a muscle, but a colleague urged him to go to the doctor.
After a check-up, his GP referred him to the accident and emergency department at Our Lady's Hospital in Navan, where it was established he had a clot in his leg. It was so bad that when Brendan awoke on the ward one night, he was unable to call a nurse who was standing just a few feet away.
"The sweat was bucketing out of me," he tells me. "My body was trying to fight the clot, which had moved from my leg to my lung."
Doctors kept him in the intensive care unit for a week, during which time he was not allowed out of bed.
A battery of tests revealed that he was suffering from an autoimmune disease, for which he was put on warfarin – an anticoagulant that helps to prevent clots. Since this medication can have serious side-effects, he was monitored on a regular basis.
Brendan was told he would be on the drug for six months. He was off work at the time, and he thought his problems were solved. But, soon after, he began to feel unwell all over again.
This time, scans showed a cluster of clots on his lung. They were so serious that doctors said he would have to take warfarin for the rest of his life.
Eager to seek a second opinion, he turned to St James's Hospital in Dublin. Again, many tests were run, but the results were inconclusive.
This was followed by a serious chest infection, which landed Brendan in hospital. A month later, the situation came to a head when his hair started falling out, his weight declined rapidly and his fingers swelled up.
Doctors took a closer look and found that his lymph nodes were also swollen, after which they performed a biopsy. "I was in the hospital for 21 days under the care of the rheumatology team and, again, they did every test under the sun," says Brendan. "They also consulted with the haematology doctors at St James's." Our Lady's Hospital in Navan did not have such a specialist at that time, although it does now.
"It came down to two possibilities," Brendan recalls. "Hodgkin's lymphoma or lupus."
After two blood transfusions to curb his anaemia, and now on steroids to help fight his chronic infection, Brendan went home to await his test results.
"After 10 agonising days, we were told that it was systemic lupus erythematosus (SLE)," he says. "It was a relief it was that and not cancer."
According to Lupus Group Ireland (LGI), the condition is an autoimmune disease, where the body's immune system mistakenly attacks healthy tissue. This leads to long-term inflammation.
It says that SLE is the most "serious" form of lupus, and adds that it can affect any part of the body, including the skin, joints, kidneys, lungs, heart and the brain.
Dr Sekharipuram Ramakrishnan, a consultant rheumatologist at Our Lady's Hospital in Navan, made sure that his patient understood all the ins and outs of the treatment.
"He and all the staff at the hospital were absolutely brilliant," says Brendan. "Pure gold," echoes Margot.
Not that it was plain sailing. The most difficult part of the treatment was the steroids, which made Brendan thirsty and gave him a huge appetite. Soon, he had put on weight and had developed the characteristic steroid 'moon face'.
In spite of the many side-effects, the medication did the trick and, after two years, Brendan was very slowly weaned off it.
He is now resigned to his condition and philosophical about its impact on his life. "Lupus is incurable," he tells me, "and no one knows why anyone gets it. I only know of one other man in my area with it and one guy in my support group.
"In the past, life expectancy for someone with lupus was much lower. But now, with modern medicine, you can lead a fairly normal life."
While upbeat, Brendan still has to look after himself. His lungs have been irreparably damaged, so he has to be very careful when he gets an infection. But Brendan is not alone. His wife and children, Karla, 19, Chloe, 12, and Scott, 8, are able to tell by the sound of his cough when he needs to see a doctor.
Margot is just thankful she is over the "hellish" period of not knowing what was wrong with her husband.
"It took a while to get a diagnosis – we all had him dead and buried," she says. "He was so pale, he was called Casper, after the ghost. But we had a rule: that we were not going to let the lupus control us."
Brendan remembers forcing himself into work when he could hardly face getting out of bed: "I can accept failure, but I won't accept not trying," he tells me.
But, today, he is looking good and doing really well. His medication has been significantly reduced, he is busy at work and he is in training for a 10km race with the Moynalty Runners.
He puts much of it down to the help and advice he received from the LGI.
"Some of the stuff on the internet about lupus is awful," he says. "That's why Lupus Group Ireland is so great – all the correct information is there."
Whatever the future holds, Brendan's beautiful wife knows he will deal with it. "He is an inspiration," Margot says. "I am so honoured to call him my husband."
Lupus Group Ireland, tel: (089) 424-1203, or see www.lupusgroupireland.com