Jennifer's story

Hepatitis B

Jennifer describes having Hepatitis B as a young woman, years of ill health and finally a liver transplant in her forties.

“When I got hepatitis originally, it was in 1967. I was in my first year of teaching and I can remember for about a week feeling off colour and then I developed yellow eyes and I was feeling pretty tired and the doctor immediately diagnosed me with hepatitis. It would have been nearly three months I had to have off school. I had Sam, my eldest child in June 1968 and I was fine from then on, I had no problems that I can recall and then in 1970, February 1970, I became pregnant again and I was really small right through the pregnancy. The second child was a month overdue and very very tiny.

Pippa was very sick, well quite sick, came out foetally distressed and of course she was in an incubator for a while. And I was itchy, that was it and during the first hepatitis as well I can remember that itchiness, that was awful, the itchiness, and of course I couldn’t have antihistamine being pregnant. I can’t remember being terribly ill, certainly no jaundice, nothing like that, but for some reason I was sent to the Liver man and he did a couple of biopsies for I don’t know what and he decided I had chronic persistent hepatitis and it wouldn’t damage my liver. I think I was under the impression that it would generally go away.

Late ’77 I had a retinal haemorrhage and they decided that they wanted to check me out. They wanted to put me on prednisone for that and he wanted my liver checked because I said I had had a liver history. About a year later at the end of 1978 I had a bleed, an intestinal bleed and it came out of the blue. I had intestinal varices and they had erupted. They transfused me straight away I think and that started a cycle of several episodes like that. I was still under strict instructions not to lift anything and I did try, but oh usually, after it had happened, you could think what had caused it.

It usually happened in the middle of the night so again you are very reliant on friends and I was full time teaching so it did disrupt the school and this happened several times. I can remember in August I was in Auckland Hospital being assessed for having the veins, the varices treated internally by injecting them with what I used to call concrete and the next time they did it, it caused another bleed to start so they gave up that game. They had talked about bypass surgery, a shunt. I think I owe New Zealand an awful lot of blood and of course they don’t want mine. Even a coughing fit or going to the toilet might start one which was a bit scary but you know I just did what I could.
I think actually anything like this is much harder on your family than it is on me.

I had the surgery, had the by-pass and this meant that I had to have a very strict low protein diet because the blood wasn’t passing through my liver, my liver couldn’t take it. Still fine, no problems, just six monthly check ups, no alcohol, and still on this limited diet. Then about 1993-94 I think, I don’t know what caused it but I think I got encephalopathy. Yes. I just lost it for a day and that would probably be the most scary thing that has ever happened, the bouts of encephalopathy that I had.

During this time I felt alright but people now tell me that I wasn’t right. I thought I was really energetic and leading a full life. I think I was probably quite tired and strained a lot of the time. But I can’t remember feeling sick, and I think sometimes my eyes were jaundiced because people would sometimes say oh your eyes are really lovely and clear. I think the first time it happened, it was weird, I was out of control. I went to the bank and I said I want to put this cheque in my account. And I couldn’t actually write properly. I was driving and I shouldn’t have been driving. Somebody saw me driving home and said that I kept going off the road. So I got home and I think I said I felt awful. Oh it was scary, and I was aware of this and I can remember saying I felt really tired and I went to bed. And I think I got up and went to the toilet and I couldn’t find the toilet in the bathroom.

You know you do terrible things, terrible things, you just say terrible things. Like biting people, I’ve never bitten a person in my life. My husband used to say I hope you haven’t got rabies. I have had several bouts of it and I think that would be the scariest thing, coming to, and not remembering anything that you have done. And so that was encephalopathy which was really scary you know. I was ashamed, I was always scared it would happen again and where would it, if it happened at school you know …

About that time I had another appointment with Dr O, it must have been about 1994 and he said “have you ever thought about a transplant, a liver transplant?” and I said ” No I don’t want one of those.” It was an absolute shock. My initial reaction, when Dr O had first mentioned it, it was too expensive and I was too old; 49, or maybe 48 when he first mentioned it. Far too expensive. He said it was something like $150,000, and I said, “oh I am not worth that, I am too old, if there are any livers lying around give them to somebody else, and it is too expensive, it’s not worth mortgaging myself for that”.

Then the shunt (by pass) closed off. They discovered more varices and decided to ‘band’ them – a bit like docking lambs. But anyway I had the most tremendous bleed and it was the worst bleed that I have ever had. Apparently the banding had ulcerated and so it had all bled internally. And then they shipped me off to Auckland and they said you are for a transplant. You have got to consider it now, your alternatives have run out. And I realised that you haven’t got the option. Then I was told that there were grants and things and it was feasible financially without crippling us, but no, I don’t know if I would have gone through with it if I had had to pay $150,000 you know.

So I went to Brisbane and had a transplant.

Well of course, you have just got no option. And then I was waiting. You are armed with a pager. You have to stay within an hour of Brisbane which wasn’t difficult and you just lead a normal life, eating the right things and waiting for a liver. You make the most terrible jokes…. things like I’d look up the exchange pages in the paper, the financial exchange rate and tell people how much livers were costing that day, you know work out what $80,000 Australian was worth in New Zealand.

There was the odd time when you think why me, I don’t want to do this. I was asked when they were doing the assessment what was the biggest risk and I said “oh infection”, and he said “is that all?” and I said “yeah”. I couldn’t think of anything else and he said “oh well I would have thought death would be the biggest risk”. And that hadn’t occurred to me. It didn’t faze me really. I wanted to have the transplant, but well, if it didn’t work, well it didn’t work. I am not scared of dying. I don’t want to be old. I have been in enough hospitals and seen enough old people and I don’t want to be like that. In the end encephalopathy isn’t nice. I wouldn’t have wanted to stay alive doolally.

Oh there were the odd tearful times when you got sick of it. I didn’t ever think I am going to die, this isn’t going to work, it was just a day to day very selfish life. I think anyone who is sick and in hospital a long time gets very hospital oriented and self oriented. Again, much much harder for the family than for me because I was there. They were just here waiting, wondering when it would happen. Yes, really much harder on all of them.

I think it was a bit scary when I was actually paged in, I wondered what the noise was when my pager went off. I can remember walking back to my flat and getting my clothes - it was like being pregnant, you had your bag packed like when you are going to have a baby. I can remember walking past an accident scene and wondering if my liver is coming from this.

I was fine, I was feeling really well. When you have a transplant, the healthier you are when you go in to it the more chance you have of coming out of it fine. And so about half past nine that night I was wheeled in to theatre; are your teeth alright? You haven’t got a toothache, you haven’t got a cold? Chest x-rays, they were absolutely determined that you weren’t suffering, harbouring any infection because once you are on the immunosuppressant drugs straight afterwards, if you had any infection that would have bolted in. They couldn’t take that risk. It is a long operation, it took about twelve or thirteen hours but they did have a smoko for about two hours while they were waiting for the liver to arrive.

But then it was all down hill from there, no problems. I have just been so lucky. The medical care, my friends, my family. It did have big effects on them, they took it a lot more seriously than I did and put up with me while I was being so selfish. You think that you can run the world just because you are waiting for a liver transplant. Or you have just had one.

Then about 18 months after the transplant I had a bit of a funny thing with my liver results and they thought I was rejecting and so they pumped me full of prednisone and stopped it. And that probably brought me more into reality - thinking how lucky I had been. I had taken it all for granted. Because that is the way I am. You just keep on going. You don’t stop and think. It made me realise how lucky I was. I thought, I still think about the donor and his family, that side of it, and it’s not until something else happens that you really realise how hard it is from their side.

I mean if I could have avoided having hepatitis. They think I must have contracted it through a teenager who had it without realising. And so it would be nice to think that people didn’t get it any more because it has affected my life for 30 years. It has been there and no matter how much you play it down or ignore it, it is always there to grab you back either with the encephalopathy and I am scared, that is the only thing I am really scared of. I can cope with bleeds because I know they can give me more blood, but the encephalopathy is something you have got no control over and it is really scary. And I hope I never ever have to have that again.

They had told me years ago that I had a decreased life expectancy which didn’t worry me. That was fine by me. But suddenly all that had changed and now I did have to think about an old age which in today’s age needs money, that is how you survive.

An after effect of the transplant really, it was quite amazing to me, oh it must have been about four months after the transplant I started to feel very down and I think I was really worried about how on earth I could afford to live, that was the main reason, that I had got this life and I wasn’t, I should have felt really grateful and I did in a way. But then I thought well now I have just got to work flat out for ten years and save all my money and not have any fun so I could afford to retire and live. It just seemed all, it just didn’t seem, well, fun to me at all. I went through quite a stage of depression, just not wanting to get up, all those classic symptoms, not wanting to get up in the morning, not wanting to make decisions just not feeling happy. Which was a very strange way for someone to be feeling who had just been given their life back again. And I felt a bit guilty about that. It was quite a long time, about six months or a year on antidepressants to get over it.

You know it is the side effects of the hepatitis the after effects, they are worse really than the actual hepatitis itself and the major effect of it is on your family. At the time, it must have affected them. It must have been really really hard on them.”

This story has been edited from a recorded interview with Jennifer for the Piercing Memories project and is posted on IMAC’s website with her consent. The interviewer was Elaine Ellis-Pegler.