'I have two bags ready, two mobile phones and a tank of fuel in the car in case I get the call' - Dad on transplant waiting list for eight years
Hughie Costello has been on the kidney transplant waiting list for eight years
THREE times a week, for five hours at a time, Hughie Costello is hooked up to a machine in Sligo University to have his blood cleaned.
Every Tuesday, Thursday and Saturday the machine does the work his two kidneys can no longer do as a knock-on effect of Type 1 Diabetes.
Hughie has been a diabetic since 1991 which caused his kidneys to start failing around 2007. He had 28pc kidney function at that stage which fell to 11pc over the following three years.
Eventually, Hughie was put on dialysis in 2010 and has been on the waiting list for a kidney transplant ever since.
He’s one of 52 patients currently undergoing dialysis in Sligo.
It would be tough going for anyone but Hughie is also the sole carer of his 9 year old daughter Kaytelyn who has Down’s Syndrome, since his first wife Gráinne died after a brief illness five years ago.
Hughie has to lie down for 2-3 hours after each dialysis session in the unit.
"The nursing staff, consultant Dr James Lineen and my GP Dr Damien Tiernan are fantastic. I was the brave one at the end of each session of dialysis when I started, but my energy is lower now," he told the Sligo Champion.
"The main message I want to get across today for people on dialysis is to be positive. My life has been like a rollercoaster but you just have to live for the hope that you’re going to get that call," he said.
He drives around with a bag packed in his car and another one at home in case he gets a call from the transplant team in Beaumont Hospital, Dublin.
"I have two bags ready and two mobile phones just in case and have people on standby just in case they can’t contact me, for that call. I always have to have three quarters of a tank of fuel in my car in case I get the call. I could get the call anytime," he said.
He said his 73-year-old mother Kathleen Costello is his rock.
"At the drop of a hat she’s there for me. She looked after Kaytelyn while I was in hospital at Christmas for two weeks. She is my rock. I would be 100pc lost without her. Gráinne’s family also help me out. Without them there’s not a hope I’d be able to cope," he said.
"It’s as if you have a battery and you’re only left with 20pc of it. I live for the day that I get a transplant so that I can do normal things, like go swimming with my son Morgan (3), go swimming with my daughter," he said.
"I try my best but I’m just not as active as I’d like to be with her. I plan whenever I get my transplant to bring her to Disneyland or somewhere lovely but now there’s not a hope. I can’t even go away for a weekend without dialysis. If I go on a foreign holiday, I’ve to plan four months in advance to arrange dialysis," said the 53-year-old.
Hughie met with the pre-op transplant team anaesthetist last week in Dublin to run through his details to make sure it’s all systems go when he eventually does get the call.
He has no idea where he is on the list but hopes his wait will soon be over. There’s a growing trend now for ‘live’ organ donors but none of Hughie’s family are suitable donors.
"If anyone wants to donate a kidney I’ll take it with open arms," he smiles.
"It’s hard to describe it in words. It’s a life-changing thing when you have kidney disease," he added.
Hughie said it has had a drastic effect on his family life.
"Even in my own relationships, it’s a big strain. It’s not easy living with someone that sick," he said.
"It affects my life and social very badly. I’m missing out on a lot of events I can’t go to. I’m just existing. At the moment it’s dialysis, home, dialysis, home. I have to work up the energy to go shopping and get messages in," he said.
"People say to me ‘you’re looking great’ but they don’t know what’s happening inside," he said.
"It will be a life-long battle until I get the transplant - if I’m lucky enough to get it before I pass away in the meantime," he quickly added.
"I want to thank my mother, my family circle and St Cecelia’s School for their help and understanding of what I’m going through," he said.
Hughie also paid tribute to the Sligo branch of the Irish Kidney Association: "A great bunch of people. We’re always trying to promote the importance of organ donation. Last Tuesday we made Ray MacSharry an Ambassador of our branch to open our donor week," he said.
He tells a story of how Ray MacSharry, as Minister for Finance back in the 1980s, used to give a lift to Sligo dialysis patients who in those days, had to travel to Dublin for dialysis three times a week.
"We’re not going to get a chance to live without a donor. In the event that people pass away unexpectedly, they should talk to their loved ones and tell them their wishes to donate. It’s no good after they’re dead and buried them finding a donor card," said Hughie.
"Speak to your family and Easter is a fantastic time for family members coming together. Discuss it and tell them your wishes that in the event of your untimely death you want to donate. A lot of family members would love to know that part of you is keeping someone else alive. It’s a very special thing to do."