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

Sunday Independent (Ireland) - Life - - HEALTH -

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

‘The sweat was buck­et­ing out of me. My body was try­ing to fight the clot, which had moved from my leg to my lung’

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.”

Bren­dan Lynch with his chil­dren, Chloe and Scott, and their pup, Milly

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