Back to main page
BRITISH BROADCASTING CORPORATION
RADIO SCIENCE UNIT
CASE NOTES
Programme 3. - Transplants
RADIO 4
TUESDAY 15/01/08 2100-2130
PRESENTER:
MARK PORTER
REPORTER: ANNA LACEY
CONTRIBUTORS:
CELIA HYDE
ALLISON JOHN
MAGGIE GAMBRILL
CATHERINE SUDERSHAN
STEVEN SACKS
PRODUCER:
NOT CHECKED AS BROADCAST
PORTER
Hello. Around 3,000 organ transplants - heart, lung, liver, kidney and pancreas - were performed in the UK last year. But there are over 7,000 people - adults and children - still waiting for one. Time is not on their side. Many of them will die before they get the call to say a suitable donor has been found.
A situation the government hopes to redress - as Gordon Brown announced at the weekend - by overhauling the system behind the NHS Organ Donor Register.
As well as looking at the latest proposals for improving organ supply, I'll be finding out what it's like to be told that transplantation is your only hope.
CLIP
I'd always been well and fit and kept myself involved in sport etc., and I just didn't know why - why me? - was my question and I know that's a question that people say you're not supposed to ask but I think it's hard not to say why - why me?
PORTER
And I'll be discovering what life is like after you have had a transplant, or in Allison's case, after your third!
JOHN
I didn't go through all these transplants just to sit on a sofa watching TV, I wanted to enjoy my life, do exactly what I wanted to do - travel the world, become a doctor, get married one day - and I think sometimes you have to take risks.
PORTER
My studio guest today is Celia Hyde, she's a sister at the transplant unit at Papworth Hospital in Cambridge - the UK's main heart and lung transplant centre. Celia, let's start with the issue of organ supply and the current debate about the "opt in" or so-called "opt out" system. Firstly how big a problem is it for you to find organs for your patients at Papworth?
HYDE
It can become very difficult particularly for certain blood groups and certain sizes - if you're a very large tall person you're likely to wait a lot longer on the waiting list.
PORTER
But the long and the short of it is that people are dying on the waiting list and something you must see regularly.
HYDE
Most certainly yes and very distressful because you offer them hope then unfortunately they don't make it through to the operation.
PORTER
The current system is an "opt in" one, where you have to sign up to the NHS Organ Donor Register - but only one in five of the population in the UK do. Gordon Brown has suggested we switch to an "opt out" - where basically we're all signed up unless we say that we don't want to donate our organs. Do you welcome that?
HYDE
I think anything that makes it - the public more aware of what's going on and what's required is a good thing.
PORTER
The trouble is that increasing the size of the register isn't going to solve the whole problem we've still go to broach the subject with relatives which must be very difficult.
HYDE
Absolutely and that's probably the most crucial point is actually to talk to your relatives, so they know your wishes, so that it doesn't come as a shock when the doctor actually approaches the family at a very, very stressful time to say could the organs be used and what organs.
PORTER
So whatever you do make sure you share your wishes with your family.
HYDE
Definitely.
PORTER
What about other obstacles, I mean do you think doctors and nurses working in intensive care units and other areas think transplantation?
HYDE
Not always because I think - I suppose the first thing is to save a life and you're working on that person and it's when you actually say there is no hope, however, we need to think about asking the family to consent to donor organ.
PORTER
It's a very big change of tack isn't it when you're looking after someone trying to get them better and then you appear to have given up and say actually can we have the organs to help somebody else.
HYDE
Yes, yeah.
PORTER
Well five years ago Maggie Gambrill developed a problem with the muscle of her heart which meant a transplant was her only chance of survival, and she was put on the waiting list at Papworth. Albeit not for very long - as our reporter Anna Lacey discovered when she went to Cambridgeshire to meet Maggie.
GAMBRILL
I was diagnosed in 1998 and I was put on mediation which keeps the condition stabilised but then I went downhill again and I just got very, very sick indeed and it resulted in seeing the transplant surgeon who then confirmed that if I didn't have a transplant I wouldn't survive many more months.
LACEY
It can be very difficult to face such a serious illness, but the prospect of a transplant can be equally worrying. I went to visit Catherine Sudershan, a consultant cardiothoracic surgeon at Papworth Hospital in Cambridgeshire, and asked her about the psychological issues patients face before they have a transplant.
SUDERSHAN
For 90% of our patients I would say it's not a huge surprise when we tell them that we have actually chosen them to be a candidate suitable for a transplant. However, whatever's said and done it is a big shock because number one, it is a big operation, which obviously is a life threatening operation and carries a huge risk for their life. Number two, it will be a whole new change for them in many ways.
LACEY
And how do you try and prepare people for this massive change?
SUDERSHAN
They have the opportunity to talk through with the various members of staff who are more than willing to answer questions but more importantly we do have the patients who've undergone transplants who are there to be witnesses and advocates to show the new patients how they would be if they had a successful transplant.
LACEY
But even with preparation and support, Maggie found preparing herself for the transplant a traumatic time.
GAMBRILL
Well I was told on a Thursday afternoon that I would be put on the list and because at that time I did find it very traumatic and difficult to come to terms with and I actually made the decision there that I wouldn't put my bleeper on, which is what they give you to contact you when the time comes, I said I wouldn't want to put my bleeper on until the Monday - I needed those few days over the weekend to come to terms with it and to prepare myself. So I put the bleeper on, on Monday morning and on the Wednesday evening, as I was just about to take my dinner out of the oven, I got a call from the transplant coordinator. So the bleeper went on on the Monday and I had a call Wednesday evening.
LACEY
That seems remarkably quick.
GAMBRILL
It was scaringly quick, yes, it must be difficult for people to be waiting for that call to come through everyday and I'd only had three days even to think about it. But it was - because everything happened so quickly and in fact within a week really of being told that I needed a transplant it was very traumatic.
LACEY
Thankfully the operation was successful. Maggie has restarted her active lifestyle and is taking part in sports she never thought she'd play again - and has been selected twice to play in the World Transplant Games. Although transplant operations clearly focus on the new life given to the recipient, in the case of heart transplants it's very common in the following weeks for the patient to consider the life lost. Catherine Sudershan.
SUDERSHAN
Once again it leaves the patient with a mixed bag of feelings. One of anxiety but more importantly of sometimes guilt that someone else actually had to die. But once they've realised that they weren't really responsible for the death of that patient I think very few actually look back.
LACEY
Do they ever feel that they miss in some way their old organ and that new organ doesn't really feel a part of them?
SUDERSHAN
They definitely feel different, especially for the ones who've had a very successful transplant, they kind of feel they've now been given a new lease of life. But I can't believe they would actually miss their dicky organ.
GAMBRILL
To me I always felt it was a gift that somebody had chosen to give and that's how I've always looked upon it, that it is a precious gift and I feel very blessed to have it. And will always look after it.
PORTER
Maggie Gambrill talking to Anna Lacey. You are listening to Case Notes. I am Dr Mark Porter and I'm discussing transplants with my guest transplant nurse Celia Hyde.
Celia - three days on the waiting list means Maggie was hardly a typical case, we've just been talking about long delays but was she just very lucky?
HYDE
Very lucky normally an average wait is about nine months, people may wait up to a year, year and a half.
PORTER
But as she said she hadn't quite adjusted to the idea, had she, she only turned her bleep a bit before.
HYDE
Absolutely, we have done the odd patient that's been at Papworth for their assessment and have had - got the proper organ and everything was set up and the patient had their transplant. However, psychologically I think that's very difficult to deal with, they don't have time to go home and talk to friends, family.
PORTER
How do you decide who to call on your waiting list?
HYDE
The coordinators get the call from Bristol, we get the blood group, the size and then we match on our ...
PORTER
So Bristol is the national centre?
HYDE
It's the national centre, yeah. And then we decide on the list the right blood group, the right size.
PORTER
Explain the size thing because presumably if you've got a child you can't put an adult's heart in and vice versa.
HYDE
No, yeah, it's mainly height - height and weight.
PORTER
Because if the heart is actually bigger and it's too big for the hole.
HYDE
Exactly, exactly.
PORTER
What about prioritising people on that list, you might have more than one patient that might be suitable, you go for the sickest presumably?
HYDE
You do unless you've got to bear in mind of course that people do become too sick on the waiting list, so yes that is an issue.
PORTER
What about an age limit for the donor? I'm 45, if I was going in to have a heart transplant it would be great to a 20 year old's heart, I perhaps would be a little bit more concerned if I had an 80 year old's heart, now those are the two extremes but practically you must have some sort of cut off where you wouldn't put an older heart in?
HYDE
No you wouldn't and also I think what we do is put a good heart in, whatever the age, we actually look at the heart on inspection, you look to see that the heart's working well, there's no coronary disease before you take it.
PORTER
And do you have a threshold though at which you probably wouldn't consider...?
HYDE
We wouldn't go over 55, 60, yeah.
PORTER
But presumably if you haven't - excuse the phrase - but beggars can't be choosers - I mean if there is a shortage of suitable donors you probably sometimes have to take hearts that you wouldn't be so happy with?
HYDE
No we always take hearts that we're happy with because otherwise if you put a poor heart into a poor recipient you get a poor outcome. So I think you know we have to be sensible.
PORTER
In terms of the state of the organ obviously transport is very important, the condition that it arrives in, how are they actually transported?
HYDE
In a cold box surrounded by packaging and ice.
PORTER
And the timescale is what, how quickly do you have to get them into the new body?
HYDE
To get them back in within four hours really is the best time.
PORTER
Now at Papworth you've been working on new technique with so-called beating hearts, which essentially - if I've got this correct - is you're connecting it up to a mini heart and lung machine to transport it, so it's still beating in between patients.
HYDE
That's correct, it also gives us longer outside of that four hours to put the heart in.
PORTER
That extends the life of the heart.
HYDE
Absolutely.
PORTER
And allows you presumably also to check that the heart's okay, does it do more tests on it?
HYDE
Yeah we can do more blood tests, we can see that it's working well.
PORTER
And is that likely to become the technique do you think?
HYDE
I think it's one of the way forwards because we'll be able to go further distances from Papworth.
PORTER
Because at the moment presumably sometimes - I mean do you have a helipad or something - how do the organs arrive from further away?
HYDE
No we just upset the villagers by landing on the cricket pitch.
PORTER
I'm sure they don't mind.
Well someone who spent more than her fair share of time on the waiting list is Allison John. Allison has just taken a break from her medical studies at Cardiff to have her third organ transplant.
JOHN
Well I was born with cystic fibrosis and diagnosed at six weeks old. At seven years old I was diagnosed with liver disease, so that would be - I'm one of the 10% of CF patients who have liver disease. By the time I was 14 I was put on the liver transplant waiting list and waited 16 months to have the liver in 1995. Two years later I needed a heart and lung transplant and that was done in August 1997. And in April 2005 I was diagnosed with chronic renal failure, due to the toxicity of the immunosuppressant drugs that I'd taken to stop my body from rejecting the other organs. I was 16 months on dialysis and I received a kidney from my father in December 2006.
PORTER
So you're now well, because you're a medical student aren't you studying to be a doctor?
JOHN
That's correct, yes, I'm very well at the moment. I've got a little bit of a croaky voice but nothing major.
PORTER
And the drug regime that you're on at the moment - you mentioned there that you've been on immunosuppressant therapy, which of course everybody's on after they've had a transplant, but in your case it actually caused problems for your kidneys. So what's happening now?
JOHN
I'm on a very low, low dose of immunosuppressant at the moment because my body's naturally become more and more used to it and I therefore need far less of a dose than normal people have immediately after a transplant. So in that respect I'm not on any different regime now than I was before my kidney transplant.
PORTER
But the hope is that with a new healthy kidney it can cope much more with that?
JOHN
Exactly yes, it's working 100%. So the outlook is that the kidney can cope with it.
PORTER
And medical students are renowned for their hectic social lifestyle, do you burn the candle at both ends, has it affected your ability to work and play?
JOHN
I did - the period during which I'd had my heart and lung and I was diagnosed with kidney problems I led life to the full, to the max as it were, and possibly maybe I should have taken it a little bit easier. But I think that that's why I had a transplant, to be honest, I didn't go through all these transplants just to sit on a sofa watching TV, I wanted to enjoy my life, do exactly what I wanted to do - travel the world, become a doctor, get married one day - and I think sometimes you have to take risks and even if it all ended tomorrow I'd look back and say well I've really, really enjoyed my life, done the things I've wanted to do, of course, I want to live much longer than that but I think that's the way that I live my life, you know, try everything.
PORTER
And Allison is one of life's triers. Her doctors initially told her that she couldn't have a kidney transplant because they were worried that her heart and lungs wouldn't be up to a long general anaesthetic. Faced with a life on dialysis Allison persuaded them to do it with her awake using local anaesthesia - a similar method to the epidural technique used in women undergoing a caesarean. Now all she had to do was find a suitable kidney. Something Allison's father was more than happy to help with.
JOHN
It was very psychologically important for my dad as well I think to be able to help me because he could see first hand the hell I was going through. He's actually retired and he drives dialysis patients to and from dialysis, so he knows first hand what dialysis patients go through. And it was as important to him and my mum and my boyfriend for me to go through the transplant as it was for me. So it wasn't just a selfish kind of position that I was going through, it was a family decision and once the doctors said yes they were willing to kind of go with the epidural and spinal anaesthetic idea I was seen by surgeons and anaesthetists etc., and my dad was found to be a good match and it went on from there.
PORTER
Well we know that you've done well, I presume he did well as well, we should ask about him?
JOHN
He's fantastic, he was out of hospital in four days and he was back in work in four weeks. So - and to be honest he's still flying high from the idea that he actually saved me from a life on dialysis, I think it's the greatest gift of all to be honest.
PORTER
And that life on dialysis, you talk about it as if really was something that was depressing you, is it that bad?
JOHN
It was for me, I think it depends on how much your freedom means to you.
PORTER
You were tied to the machine for how much of a week?
JOHN
Nine hours a week. But it's not just the amount of time that you're on the machine, you know, it's the amount of time you get to the hospital, you have to wait for your machine to be prepared, then you're on the machine, then you go home and then you feel absolutely dreadful when you get home, it really is an exhausting experience, you feel nauseous all the time. I couldn't eat much, everything tasted differently to me - I had this metallic taste in my mouth all the time. I lost about two stone in weight. And I was sleeping - I was so lethargic - all of the time, so I literally didn't do anything in between dialysis. As soon as you get off that machine obviously the toxins are starting to build up again until you get your next lot of dialysis treatment. To me it was just a means of survival. I didn't have any quality of life. Now not everybody feels like this on dialysis because some people get on with it better than others but for me it's not something that I wanted to live with for the rest of my life.
PORTER
Allison do you know what branch of medicine you want to go into eventually?
JOHN
No I didn't but I'm more and more thinking about nephrology because I've been so involved with the decision making and the instigation of my transplant, I've had to learn but I'll have to wait and see really.
PORTER
It gets harder Allison trust me.
JOHN
I'm sure it can't be harder than making a decision for a kidney transplant.
PORTER
Maybe we'll have you back on the programme one day as a resident kidney expert.
JOHN
I hope so.
PORTER
And I wouldn't bet against it. The very determined Allison John talking to me earlier.
Celia, do many people find dialysis as hellish as Allison describes there?
HYDE
Absolutely, it's about the tiredness and one of the things that Allison didn't say is quite a lot of the patients have line infections, so they're back in to have lines removed. And it is, it is very, very tiring.
PORTER
And this is one of the great things about a transplant is it removes that and you feel completely normal and really well again for the first time, sometimes, for many years.
HYDE
Absolutely, going back to normal - doing normal things.
PORTER
Let's move on to life after a transplant. We'll miss out the operation bit, very technical because we haven't got time to cover that. Let's - the patient's now back on the ward or probably not the ward, they're back on intensive care presumably afterwards.
HYDE
Yes they go to intensive care, some are there just over 12 hours, 24 hours and they move on to the surgical ward.
PORTER
And then how long before they could expect to be at home if all goes smoothly?
HYDE
Average stay, post heart transplant, now is three to four weeks.
PORTER
Amazing isn't it, quite a short time considering. But within that is another big hurdle and that's the period of rejection, this is where the immune system spots the new organ, thinks it's an invader and tries to basically kill it.
HYDE
Absolutely and also you've got to remember that patients are exercising, they're learning about the drugs that we put them on, how to take them themselves, all working towards going home - good diet. So lots of work going on before they leave the hospital.
PORTER
So when's the danger phase for rejection?
HYDE
It can be anytime, it is obviously more in the first sort of few months but obviously when you change immuno-suppression or you have really bad bouts of diarrhoea and sickness you can still get rejection because you've lowered your immuno...
PORTER
Not absorbing so much drugs.
HYDE
Absolutely, absolutely.
PORTER
And then the drugs are what - what sort of drugs are they taking and how often do they have to take them?
HYDE
Twice a day for the rest of their lives. And we have a little blue book we give them and there's 12 spaces in that, quite often at the beginning they start with all 12 filled in and that can then go down to four or five different types of drugs.
PORTER
And there's been quite an advance in the regimes used, I mean that's probably the major advance isn't it in terms of long terms survival and outcome is that we're much better now at stopping this rejection.
HYDE
Certainly and it's a lifelong commitment from patients and us to them looking at what is the best drug which doesn't give them as many side effects but offers them protection.
PORTER
What sort of common problems might they run into in terms of side effects, presumably because their immune system's weaker they're more open to infection aren't they?
HYDE
Infection, we also tell them, pre their transplant, that there is a possibility they could develop renal failure, that they could cancers and we look for that every time they come to clinic.
PORTER
Cancers because the immune system is mopping up cancer cells.
HYDE
Absolutely.
PORTER
And how do you monitor them once they're out in the community, do they have to have regular tests to check that everything's okay?
HYDE
What we do is ask the patients to take their weight and their temperature everyday and we run a telephone helpline in our department that patients can ring up if they have any signs - they get short of breath, they have any fluid retention - they ring us, we would see them that day if necessary, if not the following day.
PORTER
So you have open access to your clinic - and that runs for how long after the operation?
HYDE
Forever.
PORTER
Forever.
And what about the long term outlook, how well do heart transplant patients do these days?
HYDE
Very well. I mean a lot go back to work, go on holidays, do all the sorts of things you and I take for granted. And I love it when somebody rings up and they've forgotten an appointment saying: Oh Celia I'm really sorry I've forgotten to come to clinic today - because I think that actually sums up what transplantation's about.
PORTER
And you'd expect - I mean what sort of proportion of your - because the initial danger phase is that time of the operation but you'd expect the vast majority of your patients to get home?
HYDE
Yes.
PORTER
And most of them will go on to lead perfectly normal lives.
HYDE
Yeah, yeah.
PORTER
Well Professor Steven Sacks is director of the MRC centre for transplantation at Kings College London and he's heading a research team to find if current immunosuppressant therapy can be improved upon during the first few vital days when the new organ is particularly susceptible to attack. Not surprising given that it has been plucked from one body, transported across the country, and put in someone whose immune system thinks it's an invader.
Conventional therapy aims to prevent rejection by weakening the response of the host's white cells, but these don't mount a full attack on the new organ until three or four days after transplantation. Professor Sacks believes additional benefit could be gained by blunting another, more immediate layer of defence known as complement - a group of circulating proteins that trigger inflammation the moment they come into contact with the transplanted organ.
SACKS
Well the system takes advantage of natural proteins which are there to block the effects of complement in ourselves, so they don't overreact, start to damage your own tissues. And by cloning some of those soluble proteins it's been possible to engineer them and tag them. So the tag will allow them to adhere to different tissues. And in this particular case it's become possible to treat the donor kidney which becomes lined with a layer of - a film of this inhibitor which prevents complement attack.
PORTER
You're treating the kidney before it goes into the patient or once it's in to the recipient?
SACKS
No one of the novel aspects, as you say, to treat the donor kidney without treating the recipient, so the inhibitory proteins, the new drugs, remain bound to the donor kidney and not released in any significant degree in the circulation. So the treatment is at the kidney, it remains within the kidney, as opposed to giving the recipient more treatment.
PORTER
So it's acting as a - I mean forgive me for putting this simply - but it's acting as a sort of coating that's disguising the kidney when it goes in?
SACKS
Well it's certainly a coating, it doesn't disguise it, it simply blocks the inflammatory cascade from damaging the kidney.
PORTER
So that'll stop the immediate reaction that would happen in the first few days but presumably that coating, in inverted commas, can't last forever and eventually there is going to be some form of complement response, what happens at a later stage?
SACKS
Well the concept is that it acts at a critical period in the time of transplantation and it seems that if you can actually prevent inflammation within a very tight timeframe, within the first few days after transplantation, you can significantly influence what happens after that for many years. So the idea is just to achieve an initial effect within the first few days of transplantation.
PORTER
Does this have implications potentially for organ supply in terms of the fact that maybe the transplant team would be able to use an organ that wasn't quite so perfectly matched to the recipient?
SACKS
Yeah I think that's one of the greatest potential uses in fact because of the organ shortage people are using organs which are described as sub-optimal - they're from individuals where the organ has had more damage than the average kidney. The results are still quite good with some of those organs but they're not as good as with a perfectly handled organ. And this type of treatment, we hope, will make it possible to use more and more of the organs that might otherwise have failed or be rejected.
PORTER
What about matching criteria, does it have any effect on that, does it allow you to not have something that's quite so closely matched?
SACKS
We don't know that yet but certainly the other angle of the inflammatory proteins, that I've been talking about, can be tight and there is certainly evidence from initial studies that if you know the type of the complement protein in the donor organ you can predict how well it's going to do after transplantation and therefore make allowances in the therapy. So, for example, in the future it might be possible to type the donor into range of complement proteins, decide which one a particular donor organ is from and then to predict whether it will have a stormy time or an easy ride and to tailor the immuno suppression into intensive or less intensive accordingly.
PORTER
So you're neither overdoing it or under doing it as far as the patient is concerned?
SACKS
Well exactly, in theory there is a good chance that it will actually lessen rejection in those people at risk by giving them more intense therapy and as you say avoiding over immuno suppressing - over exposing - people to side effects those who don't need such intense treatment.
PORTER
Professor Steven Sacks.
Celia, one thing we haven't mentioned in terms of technology and advances is the use of mechanical pumps, something that you use at Papworth.
HYDE
Yes we do and we've got at least five patients in the community at the moment on mechanical assist devices. One of those has been in for about a year, which obviously gives them longer to wait on the waiting list so it's not so crucial.
PORTER
This is not a substitute for their heart, it's so-called piggy backing type thing where basically they're helping a failing heart?
HYDE
Absolutely, it's a bridge to transplantation. However, there are advances being made in actually having totally implantable long term devices.
PORTER
But at the moment the use of these devices for you is to keep the patient alive until a suitable organ can be found.
HYDE
Absolutely.
PORTER
And they're very effective at that?
HYDE
Very effective, I mean ...
PORTER
You say in the community so the people are obviously at home.
HYDE
Yeah, yeah they're doing what they want to do, obviously they shouldn't drive because obviously that's not a very good thing with a mechanical heart but we've had people go on holidays, in this country obviously...
PORTER
Is the heart actually inside or is it external?
HYDE
The drive lines come out of the chest into the mechanical device.
PORTER
So the pump actually sits outside, they carry it around with them.
HYDE
Yeah but it's actually quite small now.
PORTER
But presumably they wouldn't - I mean one would hope they wouldn't be too long on it because they'd be able to get a heart and the best way to get a heart is to increase the supply of donors and we mentioned earlier on that organ supply remains the biggest hurdle - and the main reason for people are dying unnecessarily. We talked about reforming the system as well but we wouldn't need to reform the system for registering donors presumably if more people came forward. It's my understanding that most people are happy for their organs to be used after their death for some reason but not everyone signs up, why do you think that is?
HYDE
I think it's a lot about being slightly lazy - we put it off until tomorrow. It's one of those things like you know doing your own will and things like that you don't really want to think about ...
PORTER
Yes seven out of 10 of us don't have a will.
HYDE
Absolutely and we don't really want to think about it until it's too late. And also it's about again, as we mentioned before, it's about talking to your family and making sure that they know what your wishes are and also what their wishes are, what their concerns may be.
PORTER
Because let's make it clear, I know that if a family do not want the organs to be used there isn't a doctor or a nurse in the country who's going to impose that upon them, no matter what you've signed up to.
HYDE
No matter what you've singed up to, no.
PORTER
Okay well details of how to join the register are on our website at bbc.co.uk/radio 4, or you can call our Action Line on 0800 044 044.
Celia Hyde thank you very much.
Just time to tell you about next week's programme which is on the metabolic syndrome, and the latest thinking behind the link between expanding waistlines and problems like gout, infertility, diabetes, high blood pressure and heart disease.
ENDS
Back to main page
|
听Print this page
