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Dublin: 8 °C Wednesday 22 May, 2013

Extract: How it feels to wait for a heart transplant

John Healy, maitre d of RTÉ’s The Restaurant, recalls the stress of waiting for his life-saving heart transplant operation.

John Healy

It took John Healy, maitre d of RTÉ’s The Restaurant, two major heart attacks to realise that he had to change his life. Then came the news that he would need a heart transplant.

In his new book, A Perfect Heart, John opens up about his present health fears, as well as his past traumas of sexual abuse he suffered as a child and the hidden side of a drug and alcohol-fuelled lifestyle that spiralled out of control. He writes:

WHEN MY HEART failure cardiologist told me I needed to have an assessment for a heart transplant, I was not shocked. We had discussed the possibility the previous year and he had said then that I should think about going on the national heart transplant list. I never knew such a thing existed. After my second heart attack, I had had a year in the beautiful, tranquil setting of Portugal to come to terms with the prospect of having to get a heart transplant to survive. I spent a lot of time on my own, sitting, digesting the idea and talking about it with people.

I flew home to face my next big challenge of getting on the heart transplant list and waiting for a donor. Everyone was very impressed by my healthy, tanned glow. The doctors in the Mater Hospital needed to see if I was eligible for a transplant and if I would be able to physically survive such a massive operation.

The process was explained to me in great detail a couple of times, so I was under no illusions about what lay ahead. The Restaurant was on TV over Christmas. It was around that time that the story broke in the newspapers that I was on the transplant list. In each interview I did I opened up a little bit more about my life and what I was going through. I spoke about what had happened in my past that I believed had brought me to the place I found myself in now. I believe my heart condition was, to some extent, caused by my lifestyle.

Explore my past

But I also believe there was a psychological and emotional side that caused it too that I never fully faced. I worked hard and played hard for years, but I don’t believe I did more than the man standing beside me in a nightclub or the person working next to me in a restaurant. Why did I have not one, but two heart attacks, and they didn’t? What led me to drink so much, take drugs, work to the point of exhaustion and party so hard? I wanted to explain to myself and the little boy inside me what had actually happened, and to make sense of it emotionally. As I waited for the transplant I used the time to explore my past and try to understand why I was on this life path.

My mobile phone was constantly with me; it was crucial that I knew where it was at all times. If a donor heart became available I had to be instantly contactable, as I had to be in the hospital within a half hour of getting the call. As the days turned into weeks and the weeks turned into months I got weaker. I began to fear that I was not going to get a donor heart in time.

I was waiting for something to happen; to get that phone call telling me there was a donor heart, but I didn’t know if it was ever going to come. I was terrified that I was going to die.

Another fear I had was that my health would get so bad and my heart would deteriorate to an extent that I would have to be hospitalised. I couldn’t cope with the idea of being confined to a hospital bed.

Even though I hoped and prayed every day that I would get a donor heart, I was also afraid of having to undergo such major surgery. To hold the fear at bay I tried to keep myself busy doing something that was very important to me. I couldn’t face my fear so I threw myself into doing media interviews. I became involved with donor awareness, which I feel very strongly about. I wanted to help as much as I could. I went on Joe Duffy to tell my story, hoping it would encourage people to carry donor cards and speak to their families about what they wanted to happen with their organs when they died.

Raise awareness

It became my mission to raise awareness about the need for people to carry donor cards. I wanted to help in any way I could. I appeared on The Late Late Show on Good Friday 2011. Afterwards, when I was reflecting on the interview, I realised I was not emotionally or spiritually prepared for the transplant and I could no longer hide from how I was feeling. I had a lot of fear. But I was pretending to everybody around me and to myself that I was fine.

I was doing what I always did, hiding behind a façade, the old restaurant manager persona, the showman that put a smile on his face; convincing myself and everyone else I was coping with what I was going through when I wasn’t. I got help to deal with waiting for a heart transplant and it prepared me for the procedure. I also spoke to the counsellor about the abuse I experienced during my childhood and she helped me face what had happened to me.

Working was simply not an option as I was not strong enough, so I had no income except for the illness benefit of €188 a week. I was struggling financially, which was causing more stress for me on top of trying to deal with waiting to get a donor heart.

Phone call

One day in October, I was sitting in my apartment alone, worrying whether I was ever going to be told there was a donor heart for me, when I got the call I had been waiting for I couldn’t believe it; it was finally actually happening. I had imagined this moment for so long just as I was about to leave my apartment, the phone rang again.

The donor heart was not suitable. I was crushed.

The disappointment washed over me and I sank into my armchair and sat there in a daze, not sure what to do next.

I was getting very impatient. I had been on the transplant list for a year and I was beginning to think it was not going to happen in time. It felt as though time was running out and I was frightened. I knew that if my heart deteriorated much more, everything was going to become very difficult. I was getting weaker and I was terrified that I would soon be in hospital permanently, waiting for a donor heart, or dead. My biggest fears were now becoming reality.

A week before Christmas I got another phone call. There was a heart available and they were sending an ambulance to my home to get me. I sat in the ambulance as it weaved in and out of the festive rush-hour traffic and I was very nervous, but also strangely calm.

The doctor walked into my ward. I couldn’t speak as I sat there staring at him, hoping he was going to tell me I was going to theatre. However, I was given the devastating news that the heart was going to the other patient. It was not happening for me tonight. There was a heart, but I couldn’t have it. I was so close to having the transplant.

Christmas

It was Christmas so I was able to distract myself from my disappointment and growing fear. I went to my parents’ house for Christmas and the family tried to keep things as normal as they could. I threw myself as best I could into the festive traditions. I was very weak but I tried my best to remain positive. It was not until the middle of January that everything really hit me and I fell apart. I crumbled onto the floor of my apartment and cried like a child for hours. It was like somebody turned on a tap, and once the tears started flowing they wouldn’t stop. I was very angry, I felt very sorry for myself and I wanted it all to end.

But one evening, my phone rang. I don’t know why, but this time I knew this was it, I knew I was going to get a heart transplant.  I grabbed my bag, which had been packed and sitting at my bedroom door for over a year, and got into the ambulance. I was very excited; there was no fear this time.

In the anaesthetic room there was a big clock on the wall that read 4.25 AM. All the medics around me were chirpy and excited because a transplant was going ahead. A nurse told me I was going to be put under. I simply replied, ‘In your own time darling, bless you all’. I looked down, and the last thing I remember was one of the nurse’s clogs, which had little pink pigs on them, and then I fell asleep.

John Healy’s book, A Perfect Heart, is published by Liberties Press and is out now in all good book shops.

Read: Pioneering transplant doctor Joseph Murray dies in Boston>

Read: Meadhbh McGivern: “One year on, life is absolutely brilliant”>

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Comments (31 Comments)

  • DB 06/01/13 #

    Good to see John come true it all. Make sure everyone has an organ card. Wheb your dead you dont nees your bits and bobs but others night.

    Reply
  • @ John.
    What a wonderful article. I knew some folk that were waiting for Heart & lung transplants and unfortunately did not make it due to complications.
    People should carry donor cards and there should be a campaign showing the benifits of giving.

    Reply
  • mister 06/01/13 #

    Wonderful article John. I also very much enjoyed your documentary a few months ago. You handled the entire thing with such dignity and courage. As a well-known figure you were so brave to share this very personal journey with the public because it somehow makes the whole thing a bit more human and real. And it’s certainly no harm if it makes us all pay a bit more attention to the many issues involved. Good luck and wishing you many years of good health!

    Reply
    • its great to hear your doing well John.
      i saw the documentary as well, for me it drove home and i speak ONLY for myself the need to carry the donor card.
      wishing you a very happy and long life John.

      Reply
  • Good article ,well written, this story well selected, take a bowe

    Reply
  • John 06/01/13 #

    Great article. It really is important for people like you to tell your story, we need more donations and transplants, stories like yours serve as an inspiration.

    Before people weigh in with the assumed consent argument here is why I believe it is not the way to go…Spain has the highest transplant rate in Europe not because of assumed consent but because of a very sophisticated transplant program. In reality they never take an organ without first consulting the family / nok.
    Arguing for assumed consent won’t increase donor numbers but will distract from what we need to do to increase the number of transplants.

    Reply
  • When I was 8, a close friend of the same age died of a result from her body rejecting the heart she was donated. I have always carried a donor card since then and encourage everyone I know to do the same. I don’t think people understand the importance of them. Its simple and requires no effort. It improves the quality of lives and saves many too.

    Lovely article, I can only imagine the fear of waiting for a transplant.

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  • I think we should have an ‘opt out’ system as oppose to an ‘opt in’ with regards to donors

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  • Well done John I admire the courage that you’ve displayed during your illness. My daughter went on the list when she was only five years old, she waited sixteen months it is such a difficult place to be. Patients and their families who have the strength to speak about organ donation do so on behalf of the hundreds who don’t have the physical strength to ask for someone to consider donation. You are far more likely to require a transplant than to become a donor.

    Reply
  • I think it is important that people make there wish’s clear to there family and friends as this makes it so much easier for next of kin to make the decisions. As for me I hope they take everything and then give whats left to the local university for research purposes.

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    • Fair play. Everyone should have your attitude. You seem like a good person. :-)

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    • Yes John you are so correct. We need to trust our families to carry out our wishes. Unfortunately this doesn’t always happen as the next of kin etc are too distressed.
      I don’t know the Irish statistics but I just read on the BBC Wales website that 67% of donors never registered as donors but their families gave permission.

      Reply
    • Excuse me Jerry! Sorry called you John! ^

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    • Sadly one of the most important aspects is getting the right people at the hospital to approach next of ken who are generally so overwrought with grief they do not think of donating organs in time . I know most of the larger hospitals have people specifically trained to handle this subject but I presume like everything else they are not always available .
      I know in the case of Bodies for research there is a huge shortage throughout Europe and I would prefer to have surgeons to get some experience with a dead corpse rather than experimenting for the 1st time with a live one.

      The local worm population might not like my attitude but shucks you cant please everyone ;-)

      Reply
  • As I said to you at the Gloria concert in December…thanks for helping me get through my own operation . X

    Reply
  • I also enjoyed your documentary John. I am delighted you eventually got your new heart and have been so brave to publicly tell your story. I agree with the writer who spoke of your dignity. You are a great human being. I always enjoyed seeing you on the Restaurant, you always did your job so well. Don,t pay any attention to those on here who judge you, they haven,t walked in your shoes and most likely couldn’t do half of what you have in life to help people. You suffered abuse at a young age and you overcame so much, most big being your heart attacks and having to face your own mortality, I applaud you John and thank you for sharing your story ….

    Reply
  • Thanks Joan she received a kidney through living related donor programme on 27th July 2010 and came home on her 7th birthday. She’s learned to swim has a fantastic appetite and is growing well.

    Reply
  • I just lifted this from the UCC website , I hope John does not feel I am trying to rob some of the donors but in the event of donations not been an option people might consider this bearing in mind these forms have to filled in well in advance ….

    Donating to Anatomy Department
    We are very grateful to those who are generous enough to donate their bodies for the purpose of medical science and education. Such donations are essential to our proper functioning as a medical and other health science schools.

    Donation consent forms.
    On request, two donation forms will be dispatched to the donor. Both forms should be completed by the donor.

    One copy should then be returned to us. The other copy is given to some responsible person, such as a relative, doctor, minister of religion or lawyer, who will get in touch with us at the time of death. We can then take charge after any church service (if held), and ensure that the donor’s wishes are carried out.

    If you move away permanently from the Munster area, please let us know.

    Procedure following death:
    Upon death of the donor, the body is placed in a coffin in the normal way. If a church service is held, the body is taken to the church for the service and subsequently taken to the medical school.

    If no church service is held, the body is brought directly to the medical school. Normally we expect to receive the remains within 48 hours of death.

    The University cannot accept any donors whose organs have been donated, or who have undergone a post-mortem, or died of diseases of high infectivity, e.g., Creuzfeld Jacob Disease (CJD), Hepatitis and HIV.

    Burial or Cremation of Remains:
    The body usually remains with us for a period of about two years. The burial or cremation is then arranged in accordance with the wishes of the donor.

    Next of kin are consulted about the time of burial or cremation, if they have requested beforehand that they wish to attend.

    College Cemetery Curraghkippane.

    The University has a burial ground in St. Mary’s Cemetery, Curraghkippane, Kerry Pike, Co. Cork where many donors choose to be buried. Burial takes place in accordance to the rites of the deceased person’s faith, we arrange for the attendance of a priest or minister of the relevant faith.

    The University meets all the expenses involved for the transport of remains, the stipend of the priest or minister and grave costs.

    Other Cemetery

    Many donors choose to be buried in a family grave or some other cemetery. In this case the next of kin are responsible for arranging for the opening of the grave and if desired for the attendance of a priest or minister.

    The University will meet the expenses for transport to the cemetery in these circumstances. The relatives or estate of the deceased must cover the costs of the opening of the grave, stipend for the minister or priest, etc.

    Cremation

    When the donor has chosen to be cremated. We arrange for the transport of the remains to “ The Island Crematorium ” in Ringaskiddy, Co. Cork, and for the attendance of a priest or minister of the relevant faith.

    The University meets expenses involved for the transport of remains, the stipend of the priest or minister and the cremation fee.

    Family attending burial

    If donors or relatives have any request to make with regard to the burial, cremation or any other matter, or if relatives wish to attend, we ask them to be sure to inform us in writing in order to avoid any misunderstanding.

    The University requests that all relatives and friends of the deceased who wish to attend the burial or cremation, meet the remains by the graveside or crematorium. and not within the University grounds.

    Expenses

    If a church service is held, the relatives meet all expenses up to and including the service. Subsequent expenses incurred in transferring the remains from the church to the medical school are met by the University.

    If no church service is held, the University meets the expenses incurred in transferring the body from the place of death to the medical school. The relatives or estate of the deceased must provide a coffin for transferring the remains and for subsequent burial.

    Acknowledgement
    Again, we would like to express our sincere gratitude towards all our donors, who donate their bodies for medical science and education.

    The generosity of donors is marked by a sculpture which is located in the department. It is a commissioned abstract piece in the form of a flame. It represents the flame of knowledge which leads to the light of understanding

    you can contact them at :

    T:+353 (0)21 420 5497 | E: anatomy@ucc.ie |

    Reply
  • So you were on drink and drugs and your heart gave out. Then you wrote a book.
    What exactly are you looking for now? Sympathy or publicity for the book?

    Reply
  • he destroyed himself with drugs when he was living in England.

    Reply

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