The lack of a surgeon who is capable of carrying out a pancreas transplant in the State, since the retirement of Dr David Hickey last Christmas, is putting the lives of a large number of people at risk. This week 32-year-old Rachel O'Hora (who needs both a kidney and pancreas transplant ) from Bohola outlined the difficulties faced patients like her who are in need of a pancreas transplant. Ms O'Hora, who is a teacher based in Dublin, was speaking at an information event in Kiltimagh which called on people to get involved and sign a petition and show their support for the immediate hiring of a pancreas surgeon.
Speaking at the meeting, when asked about her time frame in needing a transplant, she said: "I suppose the sooner the better. If they called this evening and said they could do it tomorrow I'd be delighted. I suppose that's not going to happen, it's not nice to think about how long I may or may not be here. But that's the reality of it, if I don't get a pancreas, whatever about a kidney because they can keep re-transplanting kidneys, that could happen over years and years. If I don't get a pancreas the kidneys are going to keep failing, so I could be living like I am now for the rest of my life, however long that may be"
Outlining her situation Rachel told the meeting: "I was diagnosed with diabetes at eight years old and five and half years ago I was diagnosed with chronic kidney disease. I had about 23 per cent kidney function at my first appointment, one month later it had dropped to 18 per cent. It was a very sharp decline, they thought that within six months I would be on dialysis and needing a transplant quickly. But I made all the changes required, changed my diet, my lifestyle, and made all the changes they asked of me. I managed to get four years out of it and started dialysis a year and half ago."
She now has to be hooked up to a dialysis machine for nine hours a day, she told the meeting. "In the beginning I was doing it four times a day for 40 minutes, but it was very restrictive. It took up a lot of my time, at the time I was working and living in a boarding school and it meant when I had a free class I could go and do the dialysis and be back in time for my next class. That lasted for three months, then it was determined that I could go on overnight dialysis so I do it every night for nine hours. When you see me here on the weekends and on a Saturday night even if I'm out late, I go home and hook up to my machine and I'm on it for the next nine hours. It does take its toll, my energy levels are pretty low, I don't sleep well and I can be nauseous, and that's just with the dialysis. With the diabetes I take five injections a day, I take about 15 tablets a day and all of these are prolonging things. But five injections a day are no joke, that's what my daily life is like. I'm still working and last year I worked two jobs which was a bit crazy. I want to live as normal life as I can. I'm only 32, I've too much energy for lying at home on the couch."
Speaking about the current situation in relation to the transplant list Ms O'Hora explained: "So the situation is with the list is that David Hickey was the surgeon in charge, and he retired in December and was not replaced. I was speaking to him that they knew three years ago that he was going to retire." She continued: "There are eight people on the transplant list and five other people who are not on the list but should be, but they are too unwell to have surgery. They maybe OK at the moment but they can't go back on the list because there is no surgeon to do it. There are another 20 people we know of who are trying to get on to the list, like me. The other cohort involved are the people who have already had the transplants and usually if they felt unwell they would have whatever treatment required through the transplant coordinator, but now they are being told to go to A and E and these are people on immuno-suppressant drugs, where they can pick up anything. Their lives are also at risk even though they have had surgery."
She added: "We want a surgeon put in place and a proper unit staffed by trained nurses, we need a coordinator who will organise and liaise with everyone. There is one proposed that we need to know is of the highest standard and that a bed in ICU can be guaranteed because often after the surgery you will have to go to ICU for a day or two, they have to be put in place and guaranteed."
For more information on her campaign to get a pancreas surgeon appointed see www.keeplives.org.
