THE waiting is the hardest part ... the wondering. Is 2013 our year?
These are the words penned by Noreen Hannon O’ Halloran on her blog Kidney Failure – My Story, posted on New Year’s Day.
Noreen and her father Tom O’Halloran from Ballylanders suffer from hereditary polycystic kidney disease and are both on dialysis treatment awaiting a life-saving kidney transplant.
Noreen has given three phone numbers to the transplant unit at Dublin’s Beaumont Hospital to contact in the event of a kidney becoming available – one number is her father’s. He, in turn, has three numbers given out – one is Noreen’s.
“So if my phone rang, I wouldn’t know if the transplant call was for me or dad. We never changed it because either way, it would be a complete joy and neither of us would be disappointed,” said Noreen.
The 35-year-old was diagnosed with polycystic kidney disease at the age of 18.
In simple terms, her kidneys have cysts which have increased in volume over time and therefore, have diminished her kidney function.
In September 2011, at the age of 33, Noreen started CAPD dialysis.
On one level, she says, she was frightened by what lay ahead – but on another level, there was relief. “Relief that after 15 years of wondering whether or not my kidneys would fail, they had. I was on dialysis and it was time to move onto the next level - transplant waiting list.”
Each person suffering with kidney disease experiences different symptoms. For Noreen, fatigue became a major issue. “I would feel really, really tired in the morning and nearly not be able to get out of the bed. I could be sick when I get up and it would pass and I could be sick again during the day and it would pass. I worked around it. Once I started the dialysis I did feel better straight away,” Noreen told the Leader.
Her father Tom O’Halloran has already had two kidney transplants - one in 1990 which lasted three years before it was rejected and another in 1996 which lasted nine years. He is “hoping and waiting” for an emergency call from Dublin’s Beaumont Hospital since his last kidney failed in 2005.
Tom was just 37 when he was diagnosed with polycystic kidney disease. His father before him, William, suffered with the disease also.
“Quite a frightening thing to be told at 37-years-of-age when you have three young children aged one, three and six,” Tom explained of his own situation.
The 63-year-old travels from his home in Ballyduff, Ballylanders to the Mid-Western Regional Hospital in Limerick three times a week for his four hours of dialysis treatment.
“He is OK,” said Noreen of her father’s current health condition.
“He wouldn’t have a load of energy. He is 63 years of age. As you can imagine it is taking its toll – he is driving up and down to Limerick three days a week. He is in good form but it is taking its toll – he could do with a transplant now. I would have a better quality of life than him.”
Noreen who lives in Mitchelstown opted to do CAPD - a type of dialysis which can be carried out at home. It means she has four bags/exchanges to do a day which take 30 minutes each time. Noreen gets a delivery of fluid once a month from Baxter.
“I chose this form of dialysis as I didn’t really want to go into a hospital three times a week.”
Good time keeping is key to this form of dialysis and every day must be planned to precision.
Noreen, who works as an accountant technician with a legal firm in Cork city, must carefully plan any night out or weekend away while her wish to start a family with her husband Brendan is on hold until after a transplant.
“The hardest part is if you are going somewhere – everything has to be planned in advance. You can’t be spontaneous and just say we will go away for the weekend. Even if my friends ask me to go anywhere, I always feel I am half a nuisance saying ‘what time are we leaving at and when are we coming back’.”
Brendan, she says, has been “a great support”.
“He has been brilliant – anything he can do to help, he will do it.”
Likewise, her mother Ann has always been there for Tom. “She has been such a support to dad over the past 30 years. She drives dad to dialysis if needs be and has been through it all with him. Her life is dad and he has relied on her throughout.”
Noreen has been on the list for a transplant since last April. “You are basically on the list and you don’t know if you are high up or low down - you are just waiting for the call,” she explained.
“Whoever the kidney would suit best from the database would get the kidney. You are just waiting. It’s hard enough because you don’t know when or where you will be when you get the call – you have to go straight away.”
For people who have recently been diagnosed with kidney disease or who are starting dialysis, Noreen offers this reassurance.
“You will be surprised where you will find the courage and strength of character to deal with the situation. Dad and myself are also very conscious of the fact that we have dialysis and are lucky to have it to keep us alive. If we needed a heart, lung or liver we would not be so fortunate. So while we find the routine hard, we have more good days than bad.”
She believes that if more people understood kidney failure they would request an organ donor card by texting the word DONOR to 50050, phoning Locall 1890-543639 or downloading the ORGAN DONOR E-CARD APP from the www.ika.ie.
“Even if they would just consider it - we are all making new year’s resolutions,” said Noreen.
“While I appreciate that it is not easy to discuss something like that, discuss it once and forget about it. It is a hard decision to make but I think there is no greater gift or legacy to leave behind.”
A table quiz in aid of The Irish Kidney Association will take place in The Hunter’s Rest, Mitchelstown on February 1 at 9pm. There will be tables of four, €10 per person.
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