Monday 23 April 2018

'I had a rash on my legs and it turned out to be a rare kidney disease' - Irish woman (29)

When Liz Cusack noticed a rash on her legs and arms she thought it was an allergic reaction. But a biopsy revealed a rare kidney disease

Liz Cusack: biopsy revealed that she had a rare kidney disease Henoch-Schönlein purpura (HSP). Photo: Damien Eagers
Liz Cusack: biopsy revealed that she had a rare kidney disease Henoch-Schönlein purpura (HSP). Photo: Damien Eagers
Katie Byrne

Katie Byrne

Liz Cusack wasn't especially concerned when she noticed a rash on her legs and arms in 2006. It was probably an allergic reaction to laundry detergent, she surmised. Or maybe it was the stress of the upcoming Leaving Certificate.

In truth, she was expecting to be sent away with a topical cream when she went to her GP to have it checked out. Instead, she was sent straight to the emergency room for a skin biopsy.

"I think the doctors in the hospital had a fairly good idea what it was," recalls the 29-year-old Meath woman, "so they sent me to a dermatologist. Then the dermatologist took one look at it and sent me for a kidney biopsy.

"I asked her what it was and she said she didn't want to tell me in case I Googled it. Like most conditions, Google shows the worst possible scenario, so it might end up frightening me."

The results of the biopsy revealed that Liz had a rare kidney disease called Henoch-Schönlein purpura (HSP), which is thought to be triggered by viral infection. The nephrologist at Tullamore Hospital described it as a "slight scratch" on her kidneys and told her that they would continue to monitor the situation.

He explained that in one third of cases, it goes away by itself in a couple of months. In one third of cases, it stays as it is and the rash comes and go. And in another third of cases, dialysis is required. But that's the worst case scenario, he assured her.

For the next nine years, Liz went to Tullamore Hospital every six months to get her bloods tested. The rash was a "nuisance" and she had to take a mild blood pressure tablet to dry up some of the excess protein that the kidneys were producing. But, for the most part, she was relatively healthy. Maybe even totally cured.

To Liz's delight, the rash completely disappeared after a six-month stint in the US. "The doctor used to say that if the rash was bad, the kidneys were aggravated and flaring," she explains. "So when the rash disappeared, I thought it meant it had gone away for good.

"Life was busy," she adds. "I was learning to drive. I had just got a new job in SAP in Citywest. I was managing their university programme and travelling around the country meeting students. So I didn't go back for my follow-up appointment… you live and you learn…"

The burst of energy was short-lived. Six months later, Liz began to feel very unwell. She was experiencing nausea in the mornings and she started getting "horrendous" headaches that lasted all day. "No amount of Nurofen or sleep would help," she explains. "And I was exhausted. I'd get home on Saturday and spend the whole day in bed. The fatigue was unbelievable."

A few months later, in March 2015, Liz's uncle had a massive heart attack. The scare prompted her mother to buy an at-home blood pressure monitor as a safeguard. She checked the whole family, but when it came to Liz's turn, the reading was significantly higher than everyone else.

"Mam said, 'There's something wrong here, Liz, unless the machine is broken. I think you should get to the doctor…'."

The GP sent Liz straight to hospital where she explained her symptoms: headaches, nausea, itchy skin and fatigue. He performed some tests and, an hour later, he came back with a team of doctors around him and told her that she had five per cent kidney function left between both kidneys. It was a terrifying diagnosis, she admits, but there was no time to contemplate it.

"They thought initially that maybe my kidneys had gone to sleep so they pumped me with steroids for 10 days to see if they would wake up. When it didn't have any impact, I was transferred to Tallaght Hospital."

The doctors there started Liz on continuous ambulatory peritoneal dialysis (CAPD) which she could do at home. It seemed to be working but then, after eight or nine months, she started to experience fatigue and shortness of breath.

"I woke up one morning screaming with the pain in my back and I couldn't catch my breath," she recalls.

She was rushed to hospital where they discovered that the fluid from the machine had gone into her lung cavity.

"They realised that that method of dialysis wasn't working so they had to put in a catheter for haemodialysis. I had to have a little procedure done on my left arm to insert a fistula - it's the most efficient way of performing dialysis," she explains. "It's not good from an aesthetic point of view but it gives you very good quality dialysis."

Liz now does three four-hour sessions of dialysis every week in Tallaght Hospital, and she has been on the kidney transplant list for just over two years. "Healthy kidneys are running 24/7 or 168 hours a week," she explains. "I'm on dialysis only 12 hours per week so that's never going to substitute the work your kidneys do."

"Dialysis is no picnic," she adds. "It takes a lot of time out of your week when you could be doing other things. And your freedom is certainly curtailed as everything - holidays, weekends away, nights out `- must be planned well in advance."

Managing the dialysis diet is another challenge. "You have to watch your diet so that your phosphate and potassium levels don't get too high as that can be very dangerous in the long term," she says.

"Even foods that you would consider very healthy - like nuts and fruit and vegetables - have to be eaten in moderation.

"And then of course there is the fluid problem. Some people with kidney failure will continue to pass water but my kidneys don't. Therefore every drop of water that I consume stays in my system.

"I am restricted to one litre per day and that includes soup, ice cream and even watermelon if you eat enough of it."

It's a physically debilitating and emotionally exhausting condition, but Liz says she is determined not to let it get the better of her. Thanks to a "very supportive" employer, a "wonderful support network" of friends and family and a "fantastic boyfriend", she has been able to work her schedule around the dialysis sessions.

Traditional Irish music continues to be a huge part of her life and she often travels around Ireland to play the button accordion and melodeon at gigs and sessions. She travels internationally too, and says the EHIC card has proved to be a lifesaver.

Neither has she allowed the condition to dull her sense of ambition. Since being diagnosed with Henoch-Schönlein purpura, Liz has received a BA in Economics, Politics and Law from DCU, a Masters in European Public Affairs & Law from UCD and a Masters in Business Management from DCU.

"I know I'll get [a kidney transplant] eventually," she says, "but I'm better off waiting to ensure the match is right. In the meantime, I'm focussing all my energy on my job and my personal relationships.

"I realised very early on that I had two choices: either I dwell on this and let it drag me down or I focus on all the good things in my life and plough on. And I have an awful lot to be grateful for.

"If anything, this illness has opened my eyes to what's really important in life," she concludes. "And I really think I'm a stronger person because of it."

"I have kidney failure. It doesn't have me."

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