Within months she will be back on dialysis and, she hopes, the organ transplant list where she could wait years before a match is found. But, that’s not the hardest part. Straube set up a Go Fund Me collection page asking for donations for a last holiday before starting dialysis, reluctantly because “I don’t ask for help, especially monetary help […] I feel like a social case.”
Straube has dealt with her illness alone since 1999, when she discovered her only functioning kidney was failing because of a late-diagnosed health issue. She was luckier than some—after joining the transplant waiting list in 2002, she received her first transplant a year and five months later (the average wait in Luxembourg is 4-5 years). But Straub has always remained realistic and the day she drove herself to hospital for the transplant in 2004 aged 25, she thought it safer to leave her overnight bag in the car, in case it didn’t go ahead. “I couldn’t see myself walking back out with the bag. Fortunately, I didn’t have to,” she tells Delano.
A life altered
The immunosuppressants Straube took to avoid the transplant being rejected, severely depleted her immune system. Small infections quickly escalated into dramatic issues. And bad luck followed--in 2008 Straube had a ruptured brain aneurysm. In 2014, doctors found seven others. Three brain surgeries removed all but one, which was too far in the brain to be operated on safely. As a result of the illness and surgeries, Straube tires easily, she cannot walk far or stand for too long and suffers from debilitating bouts of vestibular neuritis, leaving her with intermittent vertigo, vomiting, and hearing loss in one ear.
But, if her kidney is failing, Straube’s sense of humour is not. She laughed as she recalled the first time she had vestibular neuritis in her flat with her two dogs and two others she was looking after. “I was vomiting on the floor and the whole time I was afraid they would eat it […] I was on the floor in my underwear with four dogs and I thought ‘it’s like Bridget Jones!’”
Straube’s dark humour is understandable when you consider her future freedom depends on a kidney becoming available. For that to happen, besides the rare chance a living person donates a kidney, someone needs to be declared brain dead. It’s a bleak reality to live with but Straube doesn’t want pity, she wants to live an independent and fulfilling life.
Iris Straube holds a giant donor card to remind people to carry a card with them at all times. Photo: Iris Straube
A fragile independence
Today, she works 20 hours a week because of her condition and, thanks to State compensation, receives a full-time salary. She lives in a flat 5 kilometres from a job that she loves. Straube has been able to maintain her independence but only just. Despite having disability status, she doesn't benefit from full refunds on all of her treatment and medication. It means that when she pays large medical bills up front, she has to go directly to health service the CNS for reimbursement which she cashes the same day in her bank account. After bills, each month she has just €350 left.
She loves her job but because of the way social support is structured, it places her at a disadvantage. Straube’s earnings place her slightly over the threshold that would enable her to benefit from support from the Fonds de Logement (housing fund) or Fonds de Solidarité (solidarity fund). The result, she says, means she lives “from pay check to pay check.” “I’m really not living in luxury. If my car breaks down I’ve no savings,” she explains.
An atypical situation
She feels penalised by the support system because her case doesn’t “fit in a box” but she says she couldn’t face the alternative of not working at all.
What is more, because half of her salary is subsidised by the State, Straube is not entitled to a payrise, bonus or thirteenth month, nor can she change jobs. “I’m trapped. That’s why I did the Go Fund Me, because I don’t know how I’m able to put money aside.”
Depending the evolution of her medical tests, Straube expects to restart dialysis in September. From then, she will have to undergo dialysis three times a week for four hours. The thought of a holiday is the only thing keeping her going.
Straube wants to raise €2,000 for travel and insurance so she can spend 10 days in Los Angeles, a place she lived for a year after her first transplant, and then Mexico.
Deciding to ask for help was, she says, the hardest thing she has done so far. “I actually put the page up a month before putting it on Facebook because I was still contemplating,” she says. The turning point came when she saw someone on Go Fund Me asking for money to buy feathers for their parrot. “I thought, if they can do it, I can,” she says.
Straube adds she knows holidays are a luxury, not a necessity, but explains this could be her last chance for a long time because while it is possible to travel while on dialysis, it is considerably more complex and costly. Furthermore, travelling too far from the Benelux transplant region means she will be taken off the waiting list. “I wouldn’t do that. If there’s a kidney, I’m going to get it. Because you don’t know how long you’re going to wait on dialysis.”
Become an organ donor
Luxembourg operates an opt-out organ donor system whereby all people who die are considered potential organ donors. The organ donor card, or “passport to life”, gives an opt-out option. The decision recorded on this car is not recorded on any register, which is why people are strongly encouraged to carry an organ donor card.
People wishing to donate their organs after their death are also encouraged to make clear their wishes to their family. This speeds up the process at a critical time, increasing the chances of survival of one or several people awaiting transplant.