Personal Stories
Dr. Christiaan N. Barnard
Sir Prof Magdi Yacoub

Donors
Steven Tibbey
Rebecca Nix
Natalie Brown

Artificial Heart
Robert Tools
Jim Braid

Heart Transplants
Children
Andrea Barrett
Shannon Curran
Emma Grace George
Ashlea Jerome
Leslie Keown
Shawn Middleton
Hannah Pudsey
Lizzie Rogaski

Adults
Post Op Diary
Carol Agle
Trish Byng
Micky Byrne
Reg Chisholm
Delia
Mike Doyle
Gay Eberhart
Jill Edwards
Maria Encalada
Bob Enos
John Fisher
Mick Foster
Steve Henderson
Tanya Jones
Derrick Morris
Bob Pitcock
Charlotte Jane Tate
Ann Woodbridge

Heart and Lung
Diana Chandler
John Rueben
Peta Capello

Domino Transplants
Peter Allinson
Shonqueela Mallory
Andrew Wilson

Lvad's
Jonathon Holmes

Carers Story
Jan Fisher
Sandra Taylor

Waiting For Transplant
Diana Chandler

Jan Fisher
My Wife Tells How She Coped
jan@janfisher.co.uk

When John asked me to write a piece for his website, I was very reluctant at first. To be fair everything for me was still very ‘raw’. I felt that he was the one who had been through so much, and I had no right to draw attention to myself or my feelings. But since then I have read and seen so many people’s accounts and their own personal stories that I feel the relatives feelings shouldn’t be ignored. Anyone whose partner is going through this will know the enormous worry and emotional stress that comes with it. So, if in some small way this helps anyone whose partner is currently awaiting transplant, it’ll be worth it.

When John complained that he had numbness in his little finger, in early 1995 to be fair, I didn’t think it was anything serious, but with a friend having recently had a stroke, I suggested that he had it investigated.  I remember saying it’s better to be safe than sorry. But in the back of my mind I thought this might be an early warning sign of something else, but I never told John. After all, John had always been an extremely fit person, so neither of us was really concerned.  John had a series of neurological tests, and when they found nothing wrong they referred him to a cardiologist. I remember going with him in October 1995 to have his angiogram. Par for the course so I thought, so when we were told later in the day that he had “a gross leak on the aorta valve” to be fair at first I didn’t know what they meant. When he explained I just went to bits, how could this be? How could anyone who only had a numb little finger and no other symptoms be so seriously ill?  We were both in shock. We were told that if he didn’t have the op, he’d be dead within the year. I was in shock; my father had had a valve replacement 18years earlier but had died 2 years later, verdict misadventure. Therefore, I had no faith in heart specialists, but to be fair this was not at Harefield Hospital. People were trying to convince me that medical science had progressed and that this operation was routine and nothing to worry about. But no matter what anyone said, I couldn’t stop worrying. 

John was very much like my dad in his ways and mannerisms, they even shared the same birthday, and now John was going to have a valve replacement as well, all a bit too similar for my liking. Needless to say John had the operation, and everything seemed to be okay. Then 5 weeks later John collapsed at home and was rushed into hospital for an emergency operation. There was a build up of fluid in the bag around his heart and it was crushing his right ventricle. Everything happened so fast, I just sat there again waiting for him to come out of theatre hoping everything was okay. Thankfully he got there in time, another hour and he wouldn’t be here now.  John became very thin and pale. I remember going shopping one day and caught sight of a man sitting in a parked car behind me at traffic lights and thinking ‘boy he looks ill, he looks like an aids victim’. I then realised that that man was my HUSBAND !  

John was very weak, the new valve was leaking. I was very angry, after all he had been through how on earth could this have happened.  I can remember the surgeon saying, "after the operation you’ll feel so much better” what absolute rubbish!  I felt very bitter, even guilty. I kept thinking, if I hadn’t made him have a check he wouldn’t be so ill now. But then if he hadn’t gone he wouldn’t be here now, so I just accepted it. Remember this is all because he had a numb little finger! For me to see him going from an extremely fit and active person to being so weak and breathless made me feel very guilty. 

It was suggested by the consultant that John have a third operation to repair the leak. I went absolutely berserk!  I remember phoning the consultant and giving him a mouthful.  How could they even consider putting John through another operation so soon? Couldn’t they see how weak he was. You can’t keep stopping and starting the heart! I told them to forget it.  Give John a chance to recover and get his strength back, and we’ll consider it in a year’s time. A year later he did have his operation, but I can’t really say that there was a significant change. As time passed John’s heart was becoming more enlarged and he was becoming more and more tired and breathless. We had regular visits to see the consultant, who would always "touch"on the subject of transplant, but we both hoped that the drugs would reduce the size of the heart. They were not working, every time we went his heart was becoming more and more enlarged, and his breathing more and more difficult. We were never at any time given any positive hope for the future, even the consultant told John that he ‘wouldn’t make old bones’. The thought of this was unbearable, our youngest child was only 5 years old. I had to resolve to the fact that John was not going to with me in my old age, he’d be lucky if he saw Charlie get to secondary school. I used to dread going up the hospital every three months. I always came away feeling numb, the prognosis was always doom and gloom!  I used to sit there fighting back the tears, having to listen to them tell me there wasn’t much hope. I was always miserable for the week that followed, and I would mope around trying to push it to the back of mind, keeping myself busy. I would lie there at night thinking about all the things that the doctors had said that day, thinking about my children, and imagining a life without John. It was all too much. I would cry myself to sleep, I just couldn’t face it. So I did what everyone does, make the most of what I had while it was here and blocked it out until the next visit. Transplant was being mentioned now more and more.  But still no one gave us any real hope or encouragement. We were quoted statistics, which lead us to believe that if you lived 5 – 10 years after transplant then think yourself extremely lucky!  John was still very reluctant, and who could blame him, we were under the impression that once he had the transplant it was the beginning of the end.  

As time went on John’s heart was only working at 8% efficiency. He was advised to go on the waiting list, but there is no guarantee that you’ll be accepted. You go from not wanting a transplant to praying that you’ll be accepted. Your life is in their hands!  I remember going with John for transplant assessment.  Believe me they pull no punches. Nothing is hidden. We sat there for at least an hour being told about all the drugs that John would have to take and their possible side effects. I remember thinking if he doesn’t die from an enlarged heart, then these drugs will certainly kill him. There wasn’t any condition left known to man that wasn’t mentioned.  We were also told of all the food that he wouldn’t be able to eat after transplant. Every food that they mentioned, is what John enjoys most. Again I remember thinking, once he’s had this transplant I can start counting the days before he’s no longer with me.  I never felt transplant was not away forward, just away of extending his time with me. Inwardly I was dreading it. John was accepted for transplantation, but he decided to have a once in a lifetime holiday to Australia and he’d put his name down when we returned.  He was adamant he was going. I wasn’t so sure that he would make the flight.  I remember saying to him ‘if anything happens to you while we’re there I’m not bringing your body back. I’ll have you cremated and smuggle you back as talcum powder!’ I was always saying silly things like that, but that was my way of dealing with it.

December 1999 John went on the waiting list. Believe me the next 8 months were nerve wracking. Every time the phone rang you’re wondering, is this it? I’d recently been made redundant, and was working as a temp, so we had money worries as well. Time went by and John became extremely weak. His skin had become ‘grey looking’ with no colour in his face. He had a large oxygen cylinder by our bed, at times he could barely breath, and spent a lot of time sleeping. I would go to bed and John would be like a block of ice, he was always so cold. I’ve lost count how many times I’ve woke in the night shouting ‘JOHN’ thinking I’m lying next to a corpse! It happened so many times, that in the end I became crafty and just tried to find a pulse. The worry was telling on me, my hair started to fall out and I suffered a lot from stress headaches.

John started to drink a lot. He was not an alcoholic, but this was his way of dealing with it. I used to think that if a call came through tonight, he wouldn’t be able to go. I used to nag him, but only because I was worried. He also had these food binges.  He would pig out on prawns, jellied eels, stilton, pate and rare steak, and as you are strongly advised to avoid these foods after transplant (because they can bring on rejection) John was making the most of it.

When the call finally came I wasn’t at home. I was on my way home from a family party in Kent, but I was only 15 minutes away. It’s strange, but you never react the way you imagine you will. I thought I would panic, but no.  John phoned me on my mobile, and I remember saying to him ‘ how do feel about this’. I wanted him to be sure, after all only he could decide. We were both amazingly calm.  I told him to wait for me and I’d take him to Harefield.  I remember taking a deep breath, and thinking I’ve got to get home. John was waiting, ready to go, all still very calm on the outside. We picked up a friend of mine on the way. I remember driving and John telling me not to worry about red lights. But I didn't listen, I still remained very calm and was concentrating on getting him there in one piece, not a word was said.    

The nurses were waiting for us to arrive. John was prepared for the op. I helped him shave and shower, then blood samples were taken and forms signed. Then we waited, and waited. I laid on the bed with John, not saying anything, no real thoughts, everything was happening so fast, it didn’t seem real somehow.  Then the nurse and porter came to take John down.  John was joking about something as usual. It must have been about 5am.  I was fine until we reached the theatre doors, and the nurses told me to say goodbye.  It was at this point that I cracked, I just couldn’t handle it. It suddenly hit me that I might never see John again and it all became too much. I was crying my eyes out, which didn’t help John, but I couldn’t help it. All this time I’d been so strong and now I was in pieces. I remember saying to him ‘don’t leave me, don’t leave me on my own’ he said ‘I’ll see you later’ to which I replied ‘you’d better’.  I told him I loved him and he was gone. My friend and I went back to the room and waited. When I heard the operation was underway I decided to go home. 

John has never really understood why I went home. "Everyone else waits at the hospital", he says "waiting for news".  Two reasons really. Johns mum was at our house not knowing what was going on, and anyone who has been in that situation will appreciate, it’s the not knowing that does your head in! At least she knew as much as I did. We propped each other up so to speak. Also, I was absolutely shattered, and to wait 6 hours and then drive home seemed crazy.  If anything happened to John, I wouldn’t be able to drive home anyway. Our youngest Charlie asked me what was going on. She was only 6 years old.  She asked me if daddy was going to die, I had to tell her the truth. Yes, daddy could die. She knelt beside my bed and prayed. I knelt with her and prayed for the donor’s family as well. For them to make the decision to donate at this very traumatic time, must have been very hard. I will never be able to thank them enough. Meanwhile  it’s a long time to wait when you don’t know what’s happening. When I rang and was told the operation had gone well the relief was overwhelming, it’s unreal. 

John has since gone from strength to strength. When he said he was going to build a website I thought it was a brilliant idea. We didn’t have anyone to speak to. There was nothing, everything just seemed like a black hole of despair.  That’s why this website is so important. If just one person gets some comfort and encouragement from knowing that they’re not on their own, and that other people do know what you’re going though, it’s worth it! A whole new chapter of your life is about to begin.  It’s not all doom and gloom, and with care you could live a long and happy life! 

God bless you all, have a wonderful life, you deserve it! 

 Jan