1987 was the turning point for my family and me. I was feeling fine but had to visit the doctor for a routine procedure, I needed the wax cleaned out of my ears. Whilst there he did a blood pressure check and he thought I might have a heart problem. So I was sent me off to see a specialist the very next day.

After many checks and blood tests I was told there was nothing wrong with the heart. But I did have a problem I had Hepatitis B, which had developed into cirrhosis. So I asked the question what is the treatment and is it curable? Nothing can be done was the answer, if the liver stars to bleed we can fix that and if you develop cancer we can treat that also. But there is no cure for Hepatitis B. So doctor what is the prognosis?

A maximum of ten years to live, (you ask the questions be prepared for the answers), as a family we were devastated.

I had not felt unwell although I had been very tired, but I put that down to sometimes after working eight hours and driving for two more I was called back to work for emergency breakdowns. Often this would mean just getting home to have to turn around and maybe work all night and the next day. This could happen anytime night or day seven days a week. After I was diagnosed I had to stop all of these call-backs and I just did the normal eight hours shift.

I continued to see the specialist every three months so he could monitor my condition. Then in 1989 I saw another specialist when my regular doctor was not in attendance. It turned out this specialist had worked at R.P.A. on the transplant team. He asked me if I had considered a liver transplant. We had never heard of this procedure and we were a bit surprised it had not been offered before. This doctor made an appointment there and then and we willingly went along to meet Professor McCaughan.

Our first meeting with Professor McCaughan went very well and he indicated that a transplant could be done when the time was right. My wife and I left the hospital that day laughing and cuddling and if I had had the energy I would have jumped with joy. There was light at the end of the tunnel, there was hope!

On the 27th June 1991 I received a call from Graham Kidd asking if I still wanted the transplant, I sure did. Be here in two hours John to get prepared for the operation.

After calls to the families in the U.K. and my daughter in the Blue Mountains to tell her we would see her at the R.P.A. we set off. My son driving and my wife taking care of me in the back seat. The preparation took a fair amount of time but my family took my mind off all the poking, prodding and shaving. They were telling jokes; laughing in fact it was like a party in the room. There were no second thoughts, this was the chance I had been waiting for and I really felt positive about the procedure. Then the call came they were ready for me down in theater. My family all wished me well as I entered the airlock of the theater, and said we will see you later, but there was never a goodbye.

My next recollection was waking up in intensive care with my wife and daughter at the bedside. My wife saying it is all done and you have come through it all. She tells me that she could not believe the grip I had when she held my hand for the first time after the operation compared with how it had been before.

As soon as all the tubes were removed from me and I was taking off the respirator I was moved into the transplant unit. This was about four days after my transplant. Next morning I was greeted by two smiling sisters asking if I would like to take a shower, that was an offer I couldn’t refuse. They got me out of bed and into the shower sat me in a chair turned on the water and said they would be back in a few minutes. So I got busy, got myself standing up and was really enjoying using the hand held shower to spray the warm water all over me. Just then the door of the shower opened and I turn to see who it was and of course with the shower head in my hand sprayed water all over the sisters. Needless to say there was no more offer of assistance re the shower.

Things went along very well for me after my transplant, my sister, brother and his wife came out from England and arrived about five days after my operation. This was a boost for me but I feel it was more worry for my poor wife who had the job of looking after them. All the same she never complained to me about anything and was at hand when I needed her.

All my test were going well and there was no sign of the Hepatitis B, then about two weeks after the operation I suffered some rejection. The doctors were quick to tell me this was normal and had the problem under control smartly. I was determined to make the most of my opportunity of getting a transplant and would exercise everyday walking up and down the ward and on the trying out the exercise bike.

I was discharged after a month and I was delighted at that, as I had expected to be in hospital for up to three months. Of course there was the usual three visits a week then two per week and then weekly. During this time at home I continued to exercise walking everywhere I went, I seemed to have so much energy I couldn’t believe it. It was now November some five months after my operation, I was getting stronger and I really felt very well. So much so that when some friends asked me if I fancied a part-time job one day a week starting in the New Year, doing some work on a computer and answering the telephone I thought I might give it a go.

Then in mid November I started to get flu like systems and my blood tests started going out of whack. The Professor didn’t like what he was seeing and I didn’t like what I was feeling. After awhile and things were not getting any better it was thought I should have a biopsy. So late in December I went into hospital for the day to have this performed. I was at this time still feeling well but I had the dread of the Hepatitis B hanging over me.

My family and I spent Christmas together and we had a real good time, it was my best festive season for some years. My wife and I had been invited to a New Years Eve party at some of our Scottish friend’s home, and we were looking forward to having a great night there. These friends always had terrific parties with lots of sing a longs and merriment.

That New Years eve about 4:0pm in the afternoon the telephone rang and it was the Professor with the result of the biopsy. Not good news John I’m sorry said Geoff, the Hepatitis is back with a vengeance. He wished my family and I all the very best for the New Year and I returned the same to him and his family. I put the telephone down, I told my wife. She walked up to me and put her arms around me and we just cried. I don’t know how long we embraced but when we broke away we decided we couldn’t go out that night. I decided to start the job I had been offered, as I said I was still feeling O.K. I found this helped me take my mind off things, and one day quickly became two days a week.

I was still going to the hospital on a weekly basis and I used to keep abreast of my results getting a copy from the nurse each week. My wife and I would discuss them with Geoff and we could see things were getting worse. Then one day I asked if it would be at all possible to get a second transplant. Knowing that it was most unlikely seeing it was the Hepatitis B that was causing the trouble. The Professor sat back in his chair and told me all the reasons why I should not get a second one, and then said but don’t discount it. We must consider that back in 1992 there were no anti viral drugs to fight Hepatitis B, and the medical profession knew that a second transplant had very little chance of success. In-between January and June of 1992 my condition deteriorated quite rapidly and I was admitted into hospital in mid June. I was desperately ill and there seemed an endless number of doctors and nurses attending to me. Unbeknownst to me I had been going though an assessment again to see if I have able to get though another transplant. Then Professor McCaughan, his registrar and nurse came to my beside one day in July while my wife was there and said John we are going to give it another try. You talk about OH WHAT A FEELING. You have never seen two happier people than my wife and I, we thanked Geoff and he quickly left. The registrar and sister remained to tell us that the Professor had been searching for possible treatments for Hepatitis B all over world and had found a company that wanted to trial a new drug. It was not a condition of getting a second transplant but would I like to go on the trial. Having been told the slim chances I had of success without help it was a very easy decision to say yes.

Shortly after midnight on the 8th August 1992 the registrar and the night sister woke me up. The registrar said John do you still want the transplant. I thought at first he was just playing a joke on me, as he knew that it was my birthday, so I asked him if he was pulling my leg. He burst out laughing and said no John it is on if you want it, go back to sleep and we will come and get you later. Of course I wanted it and there was no way I was going to be able to go back to sleep.

They then took me to a private room and started to prepare me for the operation. I asked them not to call my wife who was staying in the nurse’s home in the Queen Mary building until later. As they had told me the operation was not going to be until 8am in the morning and I thought it would be better if she was able to rest. My family where going to have a long enough day as it was waiting for me coming out of the theater.

Shortly before 5am they came I said I would be going to theater in an hour, you had better wake my wife and call my son and daughter then I said. They quickly got my wife and two security men went to Glebe to pickup my son. A telephone call was made to my daughter in the Blue Mountains and arrangements made with the police to ensure that her and her boyfriend had a safe run through to the hospital. All the family were there when it was time to go down to theater, this time at the airlock the family and staff all sang HAPPY BIRTHDAY, this was a very emotional moment.

Once again I find myself in the transplant unit after a short stay in I.C.U. Having already been though it before I knew what to expect procedure wise. Unfortunately what I did not expect was the return of the Hepatitis B so quickly. A biopsy showed in the first few days after the transplant that the Hepatitis had returned. This was of great concern and I was immediately put on an intravenous drug to fight it. This was not the trial drug we had talked about which was not available as yet. This intravenous drug seemed to do the trick as it was holding the virus at bay.

Six weeks after my transplant I was discharged from hospital after a severe bout of rejection and some other problems. But nothing that the doctors could not handle, they were on top of everything. I was shown how to administer the intravenous drug through a porta-cath I had fitted in my chest.

I continued to use the intravenous drug for some six months and it held the Hepatitis at bay. After six months there were Hepatitis markers starting to show in my blood tests. At this time I was given the trial drug to take and it was immediately successful in knocking out markers. This was of great encouragement to me as well as the hospital. I was taking six tablets a day of this drug and I had to have regular blood tests for the drug company's benefit, which I was quite happy to do as this medication seemed to be working very well for me. After awhile the drug started to cause me some problems and they had to reduce the dose from the six tablets to four. This in turned created the problem with the return of the Hepatitis B. Although Geoff thought that if we could contain the level of the Hepatitis it could be O.K. Later on as my results began to improve the Professor put me back onto the six tablets to try and knock out the Hepatitis B. This proved very successful as it quickly reduced the DNA level of the Hepatitis B to not detected.

I continued on this treatment up until 2001 and then I was put onto one of the new anti viral drugs, which has proven to be even more successful for me. It has knocked out all markers of the Hepatitis B and I am now producing my own antibodies to fight the virus. Apart from my Hepatitis concerns I have had other problems such as bile duct blockages and a hip replacement but the medical staff were always able to deal with them.

At this point in time all of my tests are very good and I enjoy a good quality of life. My wife Audrey and I go dancing three times a week, we walk on a regular basis and I do the gardening. We have been back to the U.K. on a couple of occasions to see our families and this has been a bonus as at one time I thought I might never see them again.

At this point I would like to say thank you to my hospital family The Transplant Team for what they have and still are doing for me. My wife Audrey, Martin, Diane and Gregg who were all outstanding and very understanding. My relatives and friends who have all supported us so well throughout this time. Also I must not forget the company which supplied me with the trial drug that did such a great job for me. Incidentally that drug was only successful on two patients in the world, so how lucky was I?

In ending I would just like to say I have always remained positive of the outcome and I have always felt that it was up to me if the transplants were to be successful. The medical staff and the nurses do a wonderful job but it works better when the individual puts in the most effort. Then and only then will you see the best results for yourself (that’s what I think anyway)?


- John Smith