CHRISTY O'Hanlon underwent heart transplant surgery 11 years ago and remembers to this day how, on waking from the operation, he had a strong feeling the heart he had received had come from someone he knew.
"I insisted on being told who my donor was and as it turned out I had played golf with him. Knowing who he was made life very difficult in the beginning and I felt very guilty. But then I began to think that there were more people than me alive because of him (the donor's corneas and kidneys were also successfully transplanted);" it made me feel very strongly about people carrying donor cards. After a while you forget the trauma of having received someone else's heart but you never forget the donor who gave you life."
Openly discussing your feelings, thoughts and sensations about having someone else's organ transplanted into your body is perhaps the greatest taboo among transplantees and their consultants. The speed and accuracy required to carry out a successful transplant, the absolute necessity for donor/recipient compatibility and the sometimes lifelong fear of organ rejection are permitted topics - but ask how it feels to have someone else's heart, lungs, kidneys or liver in your body and the silence is palpable.
Recently Scottish heart and lung transplantee Maria Laverty went public about a recurring nightmare she had of seeing a young girl at the bottom of a quarry whose body turned to a skeleton when she reached it. The overriding reaction was dismissive, yet when Maria found out that her donor had been a 10 year old girl, her nightmares ceased. Instead she had a dream of walking hand in hand with the child down a street in Glasgow.
"I only know of one other case where a transplantee had a similar experience," Maria told The Irish Times. "People don't want to talk about that side of things but I feel it points to how good a match my donor must have been for me."
Some people believe feelings of connectedness to a donor are some sort of cell memory. That every cell in our bodies functions as a unit in and of itself is a basic scientific fact. Whether the genetic material present in each cell remains intact during transplantation is as yet unproven. Such a zone of speculation is not one transplant surgeons like to enter: they prefer simpler explanations of nightmares caused by anti rejection drugs.
Phil Shovlin, liver transplant co ordinator at St Vincents Hospital, Dublin says she once heard donor family/recipient communication described as a dangerous liaison. "The aim of transplantation is to return people to normal independent lives. A lot of patients have been chronically ill and in getting their independence back there are a lot of things they want to leave behind them. Knowledge of the donor could become an additional burden."
Tracey Long is a psychologist who works with transplant patients and donor families at Harefield Hospital in England, where many Irish people have been treated. She says the psychological dimension of transplant surgery is openly discussed with potential transplant patients. "We bring up issues around the heart. We ask the patients whether they feel the heart is simply a pump or is it more than that. We discuss how they would feel about receiving an organ from a man or vice versa.
"The great majority of patients are most interested in receiving a healthy organ and regaining the quality of life they had before. Some may seek reassurance that there is no evidence to suggest personality characteristics are transplanted with the heart. On this, we tell them about the hundreds of other transplantees who have talked about adapting to the new organ and gaining confidence in life following surgery.
"Transplant operations are very different to other operations in that patients are never given a date for their operation and when the call comes, it is quite a shock. They are rushed into hospital and rushed through the operation.
"It is a very usual part of transplantation to spend time thinking about your new organ and its donor but patients shouldn't be pushed into it. Many of them want to get on with their lives and make the most of their gift," Long adds.
Have patients come to her with dreams or sensations they believe may be linked to their donor? "I remember one child who, on knowing his donor came from France, wondered whether he would be able to speak French better following his heart transplant. I asked him how he found learning French at the moment. When he told me it was difficult, I said his new heart wouldn't change that.
"All in all, it's a very emotional time and there are spiritual, physical, social and financial aspects to deal with. Sometimes the spiritual aspect takes priority and they want somebody to say that's okay. It's important to explore with the individual what things mean to them in a nonjudgmental, nondirectional way. There may well be something else going on for them personally." Long adds that contact between a donor's family and an organ recipient is never completely ruled out.
Generally speaking, in this country, a transplantee knows nothing about their donor and the current thinking is that this is the best way to avoid unnecessary emotional strain on the donor's family.
But does this anonymity not leave the transplantee with a psychological void and uneasiness for the rest of their lives? Marie Kennedy, who had a heart transplant last year, says she thinks of her donor as a friend. "You've received a pump but you think of the donor as a person," says Marie, adding, however, that she never tells anyone the exact date of her transplant operation for fear of finding out by chance who her donor was. "I sometimes wonder how I'd cope if I found out who it was," she adds.
"I imagine that you could develop a guilt complex if you knew about your donor," says Patricia Doherty, chief executive of the Irish Kidney Association. "The recipient may decide to write a letter to the donor family which is forwarded via the transplant co ordinator without a name on it. Occasionally the donor's family wants to know how the transplant recipient is doing and this information is passed on to them but there is no direct contact."
DOHERTY points to the annual remembrance Mass in Dublin as an opportunity for catharsis. "Families of organ donors use it an anniversary Mass while it gives transplant recipients an opportunity to say thank you."
Matthew Farrell, who had a heart transplant just over four years ago, does not know who his donor was either. "I feel I have a bond with my donor that I couldn't quantify. It is a little hard not being able to say thanks to the family for the greatest gift anyone could give you, but I respect their privacy.
