An organ transplant really is a gift of life. People who may have required extensive medical care, or simply would not have survived, are given a second chance at life. But while many of us presume that once the procedure is complete, the patient is ‘back to normal', the reality is very different.
"When you have a transplant, the body sees the new organ as a foreign object and will try to reject it. Medication is necessary to stop this from happening and these meds must be taken for the rest of a person's life," explained Michael McHugh, chairman of the Sligo branch of the Irish Kidney Association (IKA), and himself a kidney transplant recipient.
However, a major problem has recently emerged in relation to this. A number of transplant recipients have had their medical cards withdrawn, leaving them with big bills. In response to this, some have taken the dangerous option of skipping their medication in an attempt to make it last longer.
Currently, transplant patients with medical cards pay a maximum of €25 per month for their medication. However, if they do not have a medical card, they have to obtain drugs under the Drug Payment Scheme, which means they must pay the first €144 of the cost of their medication per month.
This means that if a person loses their medical card, their annual drug bill jumps from €300 to €1,728, and that does not take into account other costs they may have, such as GP fees.
"With something like kidney disease, progression can be slow and a person may not have worked for some years before their transplant, making them eligible for a medical card.
"After a transplant, one-third of people will return to work and these are the people being hit, having their medical cards taken away. It is very unfair," Mr McHugh insisted.
He said that at a local level, he has been contacted by 13 or 14 people in this situation and nationally, the figure ‘is rising week on week'.
Some are trying to make their current meds last longer by, for example, taking them only once a day when they should be taking them twice a day.
Mr McHugh is all too familiar with how important these meds are.
In September 2006, he was diagnosed with end-stage kidney disease. He admitted that he was ‘very sick' for a number of months with nausea, but chose not to go to the doctor ‘because I thought I'd get better'.
He was immediately put on emergency dialysis and remained on dialysis until a kidney became available in November 2008. His dialysis took fours hours each time and he required it three times a week.
"I was able to work throughout because my employer was very understanding. I would only miss work on Tuesday and Thursday mornings, as I would also get dialysis on a Saturday and I would bring my laptop into hospital with me. It meant I was able to maintain as normal a life as possible under the circumstances," he said.
He knew nothing about the person who donated his kidney, except that they were a male and it was ‘an almost perfect match'.
However, while in good health now, he has to take medication twice a day at 12-hour intervals ‘for every day of the rest of my life'.
"Everybody understands a little bit about dialysis and so they relate to it when you are going through it, but once a person is transplanted, the system falls down. Meds are the key to a successful transplant, but people do not realise this," he said.
Currently, around 600 people are on waiting lists for transplants, while over 3,000 people are enjoying extended life having already undergone the operation. Mr McHugh believes the decision to take medical cards away from people who have had a transplant is baffling, considering how much money has been spent getting them to the this point.
"Take a person who requires a kidney transplant. Dialysis costs €55,000 a year and they could be on that for three years. The actual transplant costs €40,000. That is over €200,000 spent on trying to get that person back to a normal life. But you threaten it all by taking away their medical card and leaving them with bills they cannot pay," he insisted.
He pointed out that if people cannot pay and start to skip medication, this will inevitably cause major health problems for them, but will also ‘clog up the hospital system'.
"The most a person should have to attend hospital after a successful transplant is four times a year. However if people are having problems with their meds, it could be once or even twice a month. This will clog up the hospital system and means that all of the amazing work done by doctors, nurses, transplant coordinators and groups like the IKA, is undone," he said.
He added that this is a countrywide problem.
The IKA is responsible for raising awareness of the importance of organ donation. For more information or support, call the IKA on 1890 543 639.
Meanwhile, Organ Donor Awareness Week is due to take place from March 29 to April 5. Organ donor cards can be obtained from the IKA by calling 1890 543 639 or by texting the word DONOR to 50050. Texts are free of charge.
Information on organ donation is also available in pharmacies, GP surgeries and citizen information offices.
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