The patient experience
In this video we meet Alan Hyde, a liver transplant patient who was treated in Birmingham and learn about his experiences.
ZANIA STAMATAKI: Hi Alan, I thank you for joining us today. I wonder if we could start by introducing yourself and telling us how you came about to have your liver transplant.
ALAN HYDE: My name’s Alan Hyde, and I had my transplant some 16 years ago now. I was actually transplanted for the condition called PSC, primary sclerosing cholangitis. Prior to that I’d been poorly for three years, gradually losing weight, going thin in the face. Another condition I had was ascites, which is filling up of fluid in the abdomen. And this paid an awful toll on my life. Well, I was actually in the hospital being drained at frequent intervals, with the fluid, and I literally had got no quality of life at all.
ZANIA STAMATAKI: Right. Now, PSC is an autoimmune family disorder.
ALAN HYDE: Yes.
ZANIA STAMATAKI: How long did it take PSC to destroy your liver, from when you were diagnosed to when you were told you needed a transplant.
ALAN HYDE: Well, it was actually my wife who started noticing the changes in me At first, I was only thin in the face, and putting more weight on in the stomach. And I couldn’t understand the actual problem what was happening to me. But my argument then was I’ve never been ill in my life before, why should I certainly be sick now? My wife saw to it that I’d went to my GP.
I did go, and he examined me and said that he wasn’t really happy with what he was finding, and I was referred to my local hospital. Where– I saw a consultant there. He had me admitted on the ward. And I was on the ward for two weeks, having various tests done. One of the main tests was a laparoscopy, which is an internal exploratory. Which they actually did, and then I was when they found out that I’ve got liver disease. From that point onwards, I used to have to see him every three months, and this arrangement was for the blood test, blood pressure, weight, and ultrasound scan. This carried on for three years, this regime.
I was on medication for fluid retention, and other medication to try to get my liver into some sort of normality. This was holding me for three years. But after three years I went to see him as normal again, and in a couple days I had a phone call saying can you please come back and see me again. Which I did, and he basically said there’s nothing else he could do for me at his end. My liver had deteriorated to such an extent that I needed to be referred to the Queen Elizabeth and see a professor there regarding a transplant.
ZANIA STAMATAKI: You were put on the transplant list.
ALAN HYDE: Yeah. And eventually I saw the professor, and again I was on the ward for the week. Went through umpteen tests. At the end pf the week I was told that my liver was completely shot. Those are actual words he used and there was nothing that he could do, but offer me a liver transplant.
ZANIA STAMATAKI: How did you feel when you were told you needed a transplant?
ALAN HYDE: A bombshell had hit me, basically. At that point I had never been involved in hospitals before. The thought you’re going though like an operation like that. Putting off what you’re feeling. Initially, I did actually reject the decision, because I didn’t think I could go through with it all.
ZANIA STAMATAKI: Because it’s a major operation.
ALAN HYDE: It’s a very big operation. Very big operation. But the end of the day, ask anybody, then it’s your life back again. You’ve got no other choice, you simply have to go for it.
ZANIA STAMATAKI: So what sort of support did you get to make your decision?
ALAN HYDE: Initially, I was adamant I wasn’t going to have it done.
ZANIA STAMATAKI: What were you most nervous about?
ALAN HYDE: Going through the operation. Uh, fear of the unknown, I think, in many ways. It was a very difficult time for me and what the article this I will try I haven’t made sometimes it’s actually had the transplant and you can have a big impact on how you look at the situation
ZANIA STAMATAKI: They arranged the meeting with people that already had the same–
ALAN HYDE: Yes.
ZANIA STAMATAKI: –operation.
ALAN HYDE: Yes, and once I actually met those people I had this vision in my mind of people who sort of um, couldn’t go anywhere, were wheelchair bound, and this type of thing. And when I actually met them, I just couldn’t believe the difference. They’d had the transplant, they got their life back again. Going on holiday, whatever that wanted to. Here was me, going downhill rapidly, and at the end of the day, I was gonna die. So that changed my mind from being negative against having it done, to yes, please prepare the transplant list.
ZANIA STAMATAKI: So when you actually got on the transplant list, how long did you have to stay on? Were you told from the beginning, what were your expectations?
ALAN HYDE: When I was initially put on the transplant list, I was then sent back home. And you can get a call literally anytime, day or night, whenever it becomes available.
ZANIA STAMATAKI: Did you have to see your specialist a lot during that period?
ALAN HYDE: During the course of the– that time, roughly once a month I had come into the clinic to be checked. And my condition was deteriorating. [INAUDIBLE] after three months I was called in. I had the call to tell me there’s a possibility we might have a liver for you, can you make your way in.
ZANIA STAMATAKI: When you got that call?
ALAN HYDE: Oh, believe me, having received that call, it was panic stations, literally. It just goes through your mind.
ZANIA STAMATAKI: So it wasn’t, fantastic, I got a liver, it was like, oh my god this is all happening.
ALAN HYDE: Yes. Yes, and it was a lot to get around because I think there was a fear– again, the fear of the unknown creeping in. To be truthful, on the journey to the hospital, I never said a word to me wife at all, petrified that I was going through it all. When I got to the hospital, they did various checks on me. ECGs, and other blood tests to ensure I was fit enough to withstand the operation, which I was. The liver came in, and unfortunately it wasn’t good enough to be transplanted. So the operation was cancelled. That upset me even more, because I’d psyched myself up to go through with it all. The end of the day–
ZANIA STAMATAKI: The anticipation.
ALAN HYDE: There was nothing. That upset me even more so I then sent back home. During the course of the following three months– so I was waiting a total of six months before I actually had my liver– but during the course of the following three months I was going downhill rapidly. Very, very poorly, to the point where I got no life at all. I would literally wake up in the morning crying, because that how it had affected me.
Crying on and off all day long thinking is this ever going to happen? And it was just a waiting game, because obviously you never know when it was going to become available. And for me that was a very, very difficult time, waiting for the actual liver. You must bear in mind as well with the ascites I was developing more and more rapidly, so with every three or four weeks I would need to be coming to the hospital to be drained of the ascites, the actual fluid.
ZANIA STAMATAKI: Can you talk us through the day of the operation, what happened?
ALAN HYDE: Well actually it came and I was– I had a phone call in the evening. Well, here I say evening, early morning,
at 10 to 1:00 in the morning. Same thing, there’s a possibility we might have a liver for you, can you make your way in. I go into the hospital, same checks as before– ECGs and blood tests. I had a problem in myself this time, because I had lost so much weight they were very, very concerned about my health. And they said that there’s a possibility the may not to go ahead with the transplant again. If there was any problems at all, it was still on the side of caution.
ZANIA STAMATAKI: Mhm.
ALAN HYDE: The liver came in, the liver was fine. Complete reversal of you know the first time I was called in. So actually what happened then the surgeon come had a chat and said that it could cause problems or complications if we go ahead, however, we feel that if we don’t do it now we may be too late for you.
ZANIA STAMATAKI: And that was because you were in such a poor condition before.
ALAN HYDE: Yes and I said, so I said I’ve got– I’ve got to the point there where literally, I just cannot take anymore, and if I don’t wake up in the morning, to me it’s going to be a blessing, so you’ve got my go ahead to go ahead with the operation. Please do what you can for me. They took me down to the pre-op, and for me the worst time then.
I didn’t actually go down til 8:30 in the morning, I’ll just mention that as well. When I actually went down to the theatre, saying cheerio to my wife, I mean, it was worst time. I didn’t know if I was ever going to see her again. For me that was the whole– that were worst time emotionally, stressful time the whole procedure. Took me down to theatre and I was down for seven and a half hours. I then was on intensive care, and I was on there for a day and a half.
And within a few hours, I was after drifting in and out of sleep after the anasthetic even in the few short hours that I was awake, it was to me like being made born again. A lot of the problems that I had had– it was literally like a completely new life again.
ZANIA STAMATAKI: You felt a difference from that point.
ALAN HYDE: It was just amazing, totally amazing. My biggest problem– because I had lost so much weight, it was going to be a slow recovery process, which they did explain this, and I knew in my own mind, I’d been poorly for three and a half years. I’m not going to get better again in two or three days.
ZANIA STAMATAKI: How long did it take you until you were back on your feet?
ALAN HYDE: It took me a good 14, 15 months. That may seem a long time, but I did have other health issues at the time as well which didn’t actually help the problem with having the transplant at the same time. Some people nowadays, talking to other patients as I did when I got involved in the liver support group in the hospital as well. So I’m really quite involved with talking to patients and counselling patients. It’s very interesting to think that patients can go through as well as to what they are going to ask you as well. But the actual operation itself for me, it was a lifesaver.
And I’ll always tell people is if anyone comes out of that situation that I was, I was adamant in the first place. I wasn’t going to have it done. And if anybody is in a situation like that, please, please do not go down the path that I did. If they offer you a transplant, that is for one reason and one reason only. You need a transplant. And don’t be foolish. Don’t–
ZANIA STAMATAKI: And you keep monitoring your health.
ALAN HYDE: Yes. What actually happens now, after the transplant, it all depends on how well your liver is actually doing. I have to go in the clinic every six months for a check up now. Some patients it’s every three months, some patients it’s every twelve months. It all depends how well your organ is doing. Because what you’ve got to accept is that once you’ve had a transplant, your body can still reject it any time after the transplant which is why it’s vitally important that you attend your clinic visits and any sign of rejection is picked up. And then that can be corrected.
ZANIA STAMATAKI: Did you have to make any specific lifestyle changes to look after your new liver?
ALAN HYDE: Before the operation, I was put on a natural diet which basically meant what I– all the things I loved to eat, I couldn’t have. Because the problem was that I was creating for myself was with fluid retention, the more salt intake I was having, the more problems I was creating for myself with the actual fluid retention. So I was put on a no salt diet which created another problem. Because all the food I loved to eat, I couldn’t have. All the things I hated, didn’t like, I could have in abundance. So you know what the problem is now eating food I didn’t want, eating food that I didn’t like.
They put me on, also, high-protein drinks as well which, again, that made me more sick of trying to get those down. But what you got to realise is that by taking these, that’s the only way you’re going to get protein in your body. So you have to adapt to that lifestyle. After the transplant, because I was doing so well, then they said you can now eat what you like. And literally, the world is my oyster. And all the things that I couldn’t have, I can have in abundance. And going back home, and looking in the larder, it was, what do I fancy now?
But the other problem that I had then because I’d been on such bland food for so long and all the medication, you know the medication you’re on, your tastebuds completely go haywire. So all the food that you thought your liked didn’t taste the same. But of course, as they wean you off the tablets, then your tastebuds come back and they get better.
ZANIA STAMATAKI: That’s good.
ALAN HYDE: The only problem that I have now is that I was on very certain restrictions. I can’t have grapefruit because that affects the anti-rejection drugs– pomegranate, earl grey tea which I don’t like anyway, so there was no hard problem, and pomegranate.
ZANIA STAMATAKI: Doesn’t sound like a huge sacrifice to make.
ALAN HYDE: No. Believe you me, the life I’ve got now, I’m quite happy doing without all those.
ZANIA STAMATAKI: Brilliant. And you’re now a member of the liver patients support group here in Birmingham.
ALAN HYDE: Yes, I am.
ZANIA STAMATAKI: And you talk to a lot of patients about going to take a transplant. What questions do they usually ask you about this?
ALAN HYDE: What it’s like to go through the transplant itself? How long will the liver last me? How long is the operation? Will I be on medication the rest of my life? Basically just the health style and the life they can expect to lead after the transplant.
ZANIA STAMATAKI: And do you have a piece of advice for them?
ALAN HYDE: It’s the same advice I give to all patients on the assessment list. If they put you on the transplant list, it’s for one reason and one reason only. And that’s the only way you’re going to get your life back on track again. And if they put you on the list, take it with open arms.
ZANIA STAMATAKI: Thank you very much.
ALAN HYDE: You’re welcome. Thank you.
Your task: watch this interview in which we meet Alan Hyde, a liver transplant patient who was treated in Birmingham. Alan is a fantastic advocate for liver transplantation and acts as a member of our Patient and Public Involvement (PPI) panel as well as a volunteer who helps counsel current patients awaiting transplantation. Here Alan discusses how he came to need a liver transplant and what it was like to be on the waiting list.
If you would like to find out more information about the great work of the PPI group in Birmingham please follow the link at the bottom of this step.
Alan’s story is fascinating so do share your thoughts with other learners in the comments area.
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