Sally’s family in donor appeal on awareness day
IN June this year, Irish Kidney Association chief executive Mark Murphy publicly vented his frustration at the appalling situation which had developed at the Limerick dialysis unit in the Mid West Regional Hospital. It was overcrowded to such an extent that patients dependent on haemodialysis for survival were diverted to Tullamore, Kilkenny, Tralee and Galway for treatment — three times a week. Mr Murphy blamed the crisis on lack of planning and decision-making by the Health Service Executive, arguing that overcrowding in Limerick had been well documented for years.
Today, on the ninth European Day for Organ Donation and Awareness, he is equally frustrated. The HSE has had the unpublished National Renal Review Strategy report for eight months. Mr Murphy said it clearly highlights the dialysis problems and the way to solve them, as well as requirements for the next 10 years, but that the review has been “parked” with an expert advisory committee. “I’m concerned it is almost buried and this is the beginning of the end,” he said. His pessimism is heightened by the HSE staff recruitment freeze which he says is delaying the appointment of an additional consultant surgeon at Beaumont to boost the Living Transplant Programme, where just three out of nine promised transplants have so far taken place this year.
He concedes however, that 2006 was a better year for kidney transplantation. “We succeeded in retaining our 11th place position in Europe, which we attained in 2004,” he says, acknowledging that without the generosity of donors and their families there would be no organ transplantation.
In addition, Ireland, ranked 6th in Europe for deceased donations — up from 11th place in 2005 — is the smallest country to achieve such a high ranking. These improving statistics are some comfort for families whose happiness depends on a loved one receiving a vital organ donation.
One such family is the Nagle family, from Montenotte, a suburb of Cork city. Youngest daughter Sally, who celebrates her 16th birthday this weekend, is waiting to be put on a transplant list. At the moment, she must endure 10-and-a-half hours home dialysis treatment every night. She was born with a genetic disease known as Idiopatiemulticentricosteolysis, a disappearing bone disorder so rare she is the only known case in Ireland and England.
After she was diagnosed as a child, there was a “small mention” to her parents, Sabina and Ken, that the disorder might lead to kidney complications as a teenager, but all was well until the August bank holiday weekend last year.
The family, who practice the Bahá’í faith, had spent a week in Waterford at the Bahá’í summer school and towards the end of the week, Sally was complaining of pain and vomiting. The first diagnosis was a tummy bug, the second pneumonia for which she was prescribed an antibiotic and sent home and the third, most devastating diagnosis was made after Sally was rushed into Cork University Hospital that night with severe chest pain.
All manner of tests were carried out and finally Sally was diagnosed with kidney failure.
Sabina recalls receiving the news of her daughter’s diagnosis: “I had gone home around 2am and Ken, my husband had stayed on. When they told him the news he was wracked with worry and spent ages trying to figure out how to tell me. Finally, around 7am he rang home, and Sophie, my daughter answered the phone. Ken broke down and she started screaming and dropped the phone. My first thought was ‘Sally is dead.’
“When I found out she was not, anything else was going to be a relief, and so my reaction was dialysis is not so bad after all.”
THIS type of optimism is typical of the spirit Sabina shows when discussing the challenges they face, an optimism Sally seems to share. Her mother describes her as “inspirational”. “When people ask her how dialysis impedes on her life, I have heard her say ‘it is just 10-and-a-half hours a night and the rest of the time I can do what I want,’ she’s a real glass-half-full person.”
Just as well, given what Sally has been through: 24 weeks in Crumlin spread over the past year, various complications, in one instance causing her lungs to collapse and her heart to go into arrest, severe fluid restrictions and wildly fluctuating blood pressure.
Outside of the medical complications, there are the daily limitations on living that dependence on dialysis brings. Swimming, a favourite pastime, is out, for fear of infection where the catheter leaves its mark. Sleep overs, once part and parcel of birthday celebrations, are not compatible with being hooked up overnight to a machine, schoolwork is challenging and days are missed because of sickness.
The changes in the lives of Sally’s family are also monumental. Sabina and Ken, who have six children in all, two still living at home, learned the intricacies of home dialysis over a seven-week period in Crumlin. Sophie, 19, who is studying physiotherapy at University College Dublin, took the opportunity to also train in dialysis at Crumlin and recently gave her parents a couple of nights off to enjoy a wedding anniversary. Sabina, a part-time art teacher, says she used to love travelling abroad but these days she’s just happy “to see Cork” after prolonged spells in Crumlin. She is full of praise for her daughter’s doctors in Crumlin and Temple St hospitals and she is waiting for the moment when her daughter is put on a transplant list. To this end, she cannot emphasise enough the importance of carrying donor cards: “Once we are on the list, and her bloods and everything else are OK, after that we are on standby and then it is in the laps of the gods.”
Today the Irish Kidney Association has become the first patient organisation in Europe to host the Council of Europe’s 9th European Day for Organ Donation & Transplantation. To mark the event President Mary McAleese will open a conference this morning at the Royal Marine Hotel in Dún Laoghaire. This evening at 5pm, a “Walk for Life” will take place down Dun Laoghaire pier, with the two piers representing “organ donation” and “transplantation”. The analogy is that piers don’t meet and neither do transplant recipients and their donors. For further information log on to www.ika.ie.
