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Watch: 15 kidney patients get rare chance to travel

Need for regular dialysis limits their options

Nurse Josette Parnis has accompanied patients to Lourdes 13 times. Video: Matthew Mirabelli

A middle-aged woman is on holiday with her husband and three children in France, a fairly normal event for the middle of the summer but renal nurse Josette Parnis knows just how special it really is.

The woman is a dialysis patient and she can only travel if she can find somewhere in the host country where she can allow machines to do what her own kidneys cannot.

The annual trip to Lourdes organised by the Lourdes Volunteers Association is a case in point because patients can use the renal unit there.

The logistics of travelling are daunting for any sick person but for those who need dialysis three times a week merely to stay alive the challenges have put most of them off. So, persuading this woman to spend some quality time with her family was quite a feat, enough of an achievement to make Ms Parnis's eyes well up with tears.

The stories tumbled out as she spoke to the Times of Malta at Mater Dei Hospital, where she had gone on her day off to ensure that the patients were all having dialysis before their trip that night. She spoke emotionally of another patient for whom the trip was touch and go until just a day before, the seven of 15 who went this year and used wheelchairs, and the four who needed constant dialysis.

Having spent 29 of her 30 years of nursing in the renal unit, she knows the diseases inside out, explaining the different types of dialysis, the possible complications, the never-ending list of medicines and equipment to take that she was mulling over at 2.30am that day.

“The trip back is a bit worrying as the most natural thing for these patients to do is to enjoy being away, sampling the different food and relaxing together with a drink.

“But they tend to have too much and the fluid that accumulates in their bodies and has to be removed,” she explained, recalling two occasions that a patient collapsed and had to be rushed straight from the plane by ambulance to the renal unit for emergency dialysis.

“Can you imagine how hard it must be to avoid having too many vegetables or pieces of fruit because they can kill you too,” she mused.

For many patients, the strict discipline of dialysis makes it impossible to work, so money is often a problem.

Can you imagine how hard it must be to avoid having too many vegetables or pieces of fruit because they can kill you too

This is where the LifeCycle Foundation stepped in: its cyclists, who will this year be taking on a 2,000-kilometre challenge in the Gulf, raise about €150,000 every year for renal patients and once the NGO had paid for the most desperately-needed equipment – units that could be used at home – it started to look at others things like transport to take patients to and from the unit and it eventually also started to help subsidise the several hundred euros needed just for the charter flight.

Ms Parnis, the deputy charge nurse at the unit under its head, Paul Calleja, has already done the trip 13 times and she describes it as a spiritual experience. Undoubtedly, her passion communicates itself to the other three nurses who make the trip each year, donning the formal uniforms that tie the volunteers to the Order of the Knights of St John.

But her passion is most palpable when she talks about the patients who no longer go to the unit, not because they have passed away but because they were the lucky ones who got a kidney transplant.

Out of the 300 that are looked after by the unit, not all are eligible for a new kidney, for a plethora of reasons. But for the 90 who are eligible, the chances are meagre: in 2017, there were 16 taken from people who died, six from live donors (usually close relatives who have a much better chance of being a match) and two by so-called Samaritans, who donate a kidney to strangers out of philanthropy.

The odds weigh her down.

Spending so much time with the patients creates a bond that few other units offer and she would dearly love to encourage more donors. A new system has replaced the old cards one but she is convinced that many more people could sign up, if only they realised what a difference their organs could make for the recipient.

The problem, she believes, is the relatives, rather than the donor themselves.

“I wish we could explain to people how many safeguards there are to ensure that the donor – who must pass away in the intensive therapy unit – is dead, that prosthetic eyes are used so that the corpse does not look any different after donating a cornea, that the torso is sewed up carefully after an organ donation,” she said.

“The number of patients at the unit is creeping up for a number of demographic reasons and we need more and more organs. It is so easy to register. Imagine if you got a new kidney and could go on holiday with your family whenever you wanted.”

The excitement in the air was almost palatable as the patients made their way to their flight.

Speaking to the Times of Malta just a few hours before leaving for Lourdes, Sister Dorothy Mizzi said she “would not be here today” were it not for the LifeCycle Foundation.

“My friends, although we are more like family now, going on this trip will keep them in our thoughts and prayers,” she said.

Sister Dorothy Mizzi just before leaving for her trip to Lourdes.Sister Dorothy Mizzi just before leaving for her trip to Lourdes.

Similarly, Roberta Abela, 53, who has been on dialysis for a year and a half, admitted it was now a huge undertaking for her to go abroad.

“I am very excited and grateful for the opportunity to travel to Lourdes,” she said.

Register as an organ donor by e-mailing donation.health@gov.mt, or call 2595 3323/4.

Organ donation week

The LifeCycle Foundation, in collaboration with the Transplant Support Group, is organising an Organ Donation Week between today and Sunday at Chic Physique studio in Hilltop Gardens, Naxxar. Visitors will have the opportunity to enrol as organ donors and learn more about the benefits of transplantation.

Alan Curry and Shirley Cefai will be present throughout the week to entice the public to join the thousands of people already registered as donors.

James Muscat, president of the Transplant Support Group and a living kidney donor, together with Amy Camilleri, a kidney recipient, will share their experiences during a talk on Wednesday at 8pm.

For more information about LifeCycle Foundation and Foster Clark LifeCycle Challenge 2018, visit www.lifecyclechallenge.com.

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