John Feehally interview with Peter and Wendy Davis – 2018

 Peter Davis developed renal failure in the early 1970s, and was among the first patients to start regular haemodialysis in Leicester when the renal unit opened there in 1974. After four years on  dialysis  he received a kidney transplant in 1978 which was still functioning well forty years later when he and his wife gave an interview in 2018 describing their many years experience as kidney patient and carer.

Transcript:

J:   I’m  sitting with Peter and Wendy Davis in their house in Whitwick in Leicestershire. Peter and I have known each other a long time. How long Peter? I think probably since 1984. But let’s go back to the beginning. When did you first know you had kidney disease?

P: I Was 26 years old – 1972. But I had a kidney out when I was 7 years old. There  was a staghorn calculus

J: And no one ever said at that stage that the other kidney might be in trouble later? Nobody really mentioned that?  They didn’t arrange for you to have any follow ups or check-ups after that?

P: Not after about six months after the operation. And then they signed me off.

J: And then what happened in 1972?

P: Well, we had just got married and we wanted to take out   mortgage protection life insurance, and they said you’ve got a problem, which we’ve got to look into. So they referred me to the Leicester Royal Infirmary initially. The renal unit in Leicester did not open until summer or autumn 1974. And then the Infirmary referred me to Addenbrooke’s.

J: So this is still 1972?

P: Yes, and I was getting towards end stage renal failure. Fortunately, the unit in Leicester opened, and I was one of the earliest patients to go on the machine (dialysis) in Leicester because can you imagine an 80 mile trek to Cambridge when you’re not feeling the best anyway.

J: Yes  I remember one of our very early Leicester patients, telling me he dialysed in Cambridge, and he would dialyse twice a week. He’d finish work, drive to Cambridge, dialyze for 12 hours overnight, drive back and go straight to work; and do that twice a week. You just can’t imagine it can you. So tell me  about you, you’re a local Leicestershire man, are you?  Are you born and bred here?

P: Yes, born in Leicester in 1946 moved to Groby in 1948. Educated in Groby primary school and Anstey Martin Upper School, secondary modern it was called then. Opened  to cope with the baby boom.

I left school at 15. I didn’t do GCEs, I went into  printing, got fed up with that after a few years and went to Charles Keene College to do some O levels and got into the civil service. I was a valuation clerk in those days but worked my way up to chartered surveying technician. A bit of a grand title; it just meant I was out and about rather than in the office. I did that for 37 years, My employers were really understanding when I got kidney failure. I went on dialysis overnight, I wanted to keep my job because I thought if I lose my job, with a medical history like that, I might have difficulty getting a decent job. And I’d worked hard at it.

I worked for the Inland Revenue District Office. I was called  an Inland Revenue district valuation officer.

J: So you were mostly out and about looking at properties valuing and…

P: Yes, probably out three days a week. In the old days writing it up, and then of course computerising it later on.

J: And what about you, Wendy are you a local person as well?

W: Yes, I come from Glen Parva. So I knew his father before I knew him because his father was an English teacher at South Wigston  High School, which I used to pass on my way to get the bus to Kibworth Grammar, and I used to pass him as he was  looking after all the bus queues and things. I didn’t know who he was then couldn’t believe it when he turned out to be   Peter’s father .

J:How do you two meet?

W:  I think we  met through the columns of the Leicester Mercury didn’t we?

P: We were both on the rebound at the time, and we just clicked, you know. My dad said, ‘ If you don’t marry Wendy I will’ and I thought Mum might have something to say about that!

W: I started off (teaching) at Eyres Monsell Primary School. And I was there for six years before we had Fiona. And yes, that that was great fun.

J: And you were always a primary school teacher?

W: Yes. Right the way through.

W: And I always wanted to teach small ones. I used to be a Sunday school teacher before that. So I sort of got my hand in as a teenager. My sister is eight years younger than me. So I was used to having little ones around.

J: So, you get married, you appear to be perfectly fine. You go for your mortgage protection insurance  medical, and they say you’ve got kidney disease. And  presumably once you got to Cambridge and met the folks at Addenbrooke’s, you began to realise what was going on?

P: Yes. Well, I thought I’d be dialysing, but their attitude to kidney patients was to keep a number of patients on the ward and then they’d get an opportunity for a transplant if a kidney came in. You weren’t on the waiting list, as such .

J: So the idea was you’d hang around until a kidney became available?

P: Yes, that was their policy.

J: That isn’t very good if you live in north west Leicestershire is it!

P: I can’t remember who was in charge. But his attitude was, ‘Just imagine we’re going into battle and some of you will die. And some of you won’t’.

J: It may be a difficult question to answer at this stage. But was it frightening? Was it just overwhelming? I mean, when you started hearing this news about dialysis … the two of you, what do you think?

P: I ‘ve always been quite laid back, a philosophical sort of a chap. So my concern really was ‘Well I’m married. I’ve got to crack on with it’ . I’ve never gone into hysterics or… I thought ‘I’ve got to keep my job’ as I’ve explained. I had nightmares occasionally about it, prior to going on dialysis , because I had no clue how it worked, or anything like that. I had horrible nightmares, but once I settled into the routine, on dialysis, that was just another part of my life.

J: Did you think to yourself; my life is going to be short?

P: Yes. I went on dialysis in October 1974, and our first daughter Fiona was born in January 1975. So I thought ‘Well, I’ve got to keep battling on because I want to see Fiona grow up. My employees were really understanding and I had precious little time off. I’ve never been one for taking time off sick. My cup’s always half full rather than half empty, if see what I mean.

J: I completely see that. And I admire you for it. But what about you Wendy? When all this broke, all this news arrived, how did you manage it?

W: It was quite terrifying at first, especially when we went to Cambridge and we were in the outpatients. And I was  not sure what on earth was wrong with him. There were some patients there who were being brought  in wheelchairs. And I thought it gets to this does it?  I had  no idea what was wrong.

He was there for such a long time and luckily being a teacher, I had summer holidays. I went down into lodgings at Cambridge for about six weeks to be there so they let him out during the day as long as he didn’t  have anything to eat or drink because they were monitoring everything.

J: How long did they keep you in hospital in Cambridge for?

P: Six weeks, I think. They were testing me for various things, and I was drinking distilled water all the time, nothing else, and the low protein diet. I mean. I’m three stone heavier now.

J:  I’ve been looking at old photos of you back then. You were quite a slim chap. You were disappearing on the Cambridge diet.

P: I thought ‘I should be sitting by the Cam with a glass of beer in my hand and a pie.’ So, a few years ago, we went back to see … because I was in the old Addenbrooke’s, in the last ward of the old Addenbrooke’s Hospital to close down. So we went back a few years ago and it’s a block of flats now. And I thought, well, this time I can have a beer and a pie. Because when you are on the strict diets, you dream about food, you dream about what you can eat. The food adverts used to torture me on the television . They always seemed to be advertising food. And what I used to do on Friday on dialysis, I’d pig out with a steak pie , sausage rolls and chips. Once a week because the dietician used to say  you’ve got to let yourself go occasionally. But I’ve always done, what I’ve been told, generally by the doctors, you know, it’s probably one reason why I’m still here.

J: You said you dreamed about food. What about fluid, was fluid restriction difficult.

P: The drink side didn’t really bother me , because we don’t drink that much in the way of alcohol, so that wasn’t a problem.

J: Because I know some people, particularly young men, find real difficulty in keeping to the fluid limit, not because of fear but you just get so thirsty. It’s so difficult. You don’t remember that being particularly was too much of a challenge?

P: No, not really. No.

W: He could only have a pint a day. So he said, Well, if I can only have three cups of tea in a day, I’m going to have the best cup I can get. So we had a real bone china cup, and he used to have it three times a day. And then one summer, we were in the kitchen. I was talking to him and suddenly I turned around and he wasn’t there. He was flaked out on the floor. Of course, it was hot, he hadn’t had enough fluid and he’s fainted. So then we got in touch with the hospital and they said, ‘oh yes, he can have more when it’s hot’.

P: I honestly think they give you restrictions tighter than they really want to because they think you won’t stick to it. They assume that people will stray from the straight and narrow but I’m the type who sticks to it exactly. I mean, even now, I tick on the calendar when I have prednisolone every other day to make sure I don’t forget. I’m that strict with myself about it

J: And so, you started dialysis. You were in that first batch of people  to dialyse in Leicester. Were you feeling lousy when you started dialysis? And did you feel better when you started dialysing?

P: I didn’t really before I started dialysing, I didn’t feel that unwell, to be honest with you

J: It was just that John Walls said it’s time to start.

P: Yes, he interviewed me prior to me even having a fistula done and he was asking me all these probing questions. What’s your job? Are you married, any children, three months pregnant…? I got it in my mind that it was to decide   whether I was to get the dialysis or not.

J: That’s how it felt?  Being interviewed to see if you pass the test.

P: To be honest, the doctors in those days hadn’t got a particularly brilliant bedside manner, with me anyway. You know, it was in the days when you didn’t tell the patients as much as you do now. You don’t hold anything back nowadays. They let you know anything you want to know now but they didn’t then. So that was a bit frightening.

J: That general business of not being told so much  has clearly changed now. Do you think that that made things more frightening? Because you didn’t know things?

P:Frankly, I think it did. I’m not attributing any blame, that was the system. It was very different. There was no advisor or transplant coordinators or anything in those days. There was no social care side of it. In fact, me and Wendy and another patient set up the patient’s society so we could have Christmas parties in the hospital.

J: And so who set up the Patient’s Association – you two and  Pam Gardner?

P: Wendy cribbed the constitution from one of the other patient societies. We kind of borrowed bits to get it registered. We raised many thousands of pounds over the years locally.  Groby working men’s club, they raised 1000s, Whitwick Constitution Club they did too – they were all the people we knew. So over the years, we’ve tried to put something back, you know.

W: We used to have lovely garden parties in his mum’s big garden at Groby. Bill Maynard’s son William , who was performing in Jesus Christ Superstar, he came to open it. That was in 1979.

J: Patient associations are great fundraisers, but also great support for each other. And that was really why it was it started?

W: We used to write a newsletter every month. And it used to go out with the supplies to the patients in their homes to keep them in touch. And they used to contribute articles. And we used to put news in about all the patients and how they were doing. So the van man used to say, It’s terrible. People would say ‘where’s the newsletter?’ not ‘where are the supplies!’

P: It was group therapy really.  If you did something silly at home on dialysis, you say, Oh, yeah, I did that. What do you do? I just plug this in and switch this off. You know, somebody clicked it there and right. Nobody’s worried about it. We talked it out.

J: And also because they were the only other people who really understood what it felt like, what you were doing. So, how long did you dialyse on the unit, and when did you start dialysing at home?

P: I was only on the unit for a very short period of time.

W: Yes, they started putting the machine in in the January because they were doing it when Fiona was two weeks old. We’d got three bedrooms in a semi where we lived then. And we’d got this room that we’d started decorating ready for the baby. And of course, once Peter had to go on dialysis, they said ‘oh, we’ll have that room for dialysis’. So we had to put the baby into the little box room at the side and decorate that one. And of course, when they came to start putting the kidney machine in one morning, I was a bit late getting the baby up. She was still asleep. And then I went upstairs and they were resting a big hammer across the end of her cot and we’re talking about where the pipes were going from the airing cupboard. And I said, ‘Excuse me, can I just get the baby? And he said, ‘I thought it was a doll! I had no idea it was a real baby!’ Yeah, about two foot long wrench that was right at the edge of the cot, balanced on the end. They couldn’t believe it when I picked this small baby up.

P:Anyway, I was on dialysis there and then came home in 1978 in the March. They’d just put the new machine in and I developed pneumonia. Yeah. And Doctor r Walls said, ‘well, we’re going on the emergency transplant list  if there is such a thing, but he said we’ll certainly push it. So all this dialysis stuff was only here for a few weeks and then I didn’t need it.

J: Let’s get this get back to home dialysis because it’s quite unlike anything in any other branch of medicine. The idea that the two of you would take a machine home and do it all yourself. Did it just seem like the right thing to do or did it scare you?

P: Well, the whole experience is quite frightening. And the fact you’ve got to stick these fistula needles in which are about the size of cocktail sticks (big cocktail sticks) . It’s amazing what you can do to yourself if you have to.

J: And you wanted to just because of the advantage of being at home and being in control of your life, really?

P:Yes. And having a small daughter and keeping the job. So I could go on dialysis when it suited me.

J: So you dialysed evenings? Or overnight?

P: Overnight, yes… I mean, sometimes I felt like walking death. People would say ‘you look rough’.

J: People often say the day after dialysis is the worst in a way because you feel pretty washed out, but nevertheless, you dialyse overnight, take yourself off, you’d get yourself up,  and get to work on time.

P: Wendy of course had to be trained up to look after me.

W: I had to go on the bus with the baby in a carrycot to get to the General to learn how to do it. And then leave her in the staff room while I did the training. It was fun. It was fun when we were building the kidney because you know, in those days we had to build the Kill. So it was, you know,   gloves, gown, over shoes and the baby in the carry cot on the landing while we did it. ,   It was fun in the middle of the night when the baby cried for food and then the kidney machine alarmed and you didn’t know quite where to go to first. So the poor baby used to get stuck face down on the floor with her head toward the side to wind her, while I nipped  up the stairs to see what was wrong with the kidney.

J: But it is interesting to look back now…To ask a young married couple with a young babe to do that.  You managed it and you did it.

W: I mean, on one occasion, I remember I put a clamp in the wrong place on the line. And the line exploded, and the blood hit all four walls of the room and it was dripping through my hair. And I just stood there rooted to the spot with terror and Pete calmly on the bed said, ‘just put the clamp on here Wendy and it will be all right’.  I was absolutely rigid with terror.

And on another occasion, I walked in and there was a kink in the water pipe. And I walked into the room and it was about two inches deep in water all over the floor. And then once he’d got an ordinary cellular blanket on his bed and he kept a light ( just a light bulb in a holder on the floor so he could still see)  , and the cellular blanket had fallen onto the light and it was all singed and burnt. It’s a wonder he didn’t burn himself to death. I couldn’t believe it and he slept through the lot. He slept while he was on his kidney machine. I hardly slept a wink and he went to sleep. He can sleep through anything, which I think is great.

P: To be honest, it was dark days at times for my wife – with the baby as well.

J: So Fiona was born just then and then your second daughter Ruth was born  after the transplant.

P: I’ll tell you something quite funny about that. There was this Scottish doctor       Dr. Muir at the Health Centre who used to look after me. And lots of the old women in the village wouldn’t go to see him because they said he was too rude. It was his sense of humour; he wasn’t nasty rude. When I came home after the transplant, he popped in on for about two weeks on his way home from the surgery to see how I was doing. One day  I said to him my haemoglobintime was about 4.5 – you can get much lower and still be alive.  When  I said it had gone up to about 11, he turned to her and said, I’ll also see you in antenatal before you know it. He was in his 70s then. He smoked like a chimney and drank like a fish, a real old fashioned GP!

You’d go to his surgery and he’d say ‘you need a drop of jollop (an old word for medicine)  ,not that rubbish from the pharmacy, and he’d get a bottle of whisky out of a drawer and give you a tot of whisky.

J: How long were you on the transplant list before you’ve got the transplant?

P: Only a few weeks.

J:So all those years on dialysis you weren’t on the transplant list?

P:Not so far as I’m aware. No.

J: Because these days we’d   we’d be aiming to transplant them as soon as possible and we get them on the transplant list often before they even start dialysis but it was very different then wasn’t it. Transplant wasn’t really discussed with you much.

P: It wasn’t really mentioned. And I think if you’re happily plodding along at home you were probably in a siding as far as they were concerned, you know, but then we moved house in March and I developed pneumonia and Doctor Walls said ‘we’ve got to do something about that. We’ll get you something sorted very quickly’. And the kidney arrived  in the June – end of June, I got a phone call. I remember, I was on dialysis. He said: ‘This is Dr. Hamilton. We’ve got a kidney available. Are you interested?’ And I said ‘ I’m on my way mate!

J: I’m interested in what you understood about a transplant? Obviously, it got you off dialysis, which is okay. But   did you have any sense,  if the transplant went well, of what was going to happen to you in the future? Did you still think about how short your life was going to be?

P: I think it’s always in the back of your mind that it could be life limiting. But I don’t think I ever let it get me down. I just thought ‘Well, this is the opportunity, make the most of it. Get on with it’.

J: Right. So, you’ve never had any hesitation about going for the transplant. Because it   was in your own mind absolutely clear that it was better than dialysis.

P: Well, I went into   the room before we go to theatre and you know, putting gear on and they couldn’t believe how cheerful I was.

J: Did you know anything about the donor who gave you the kidney? And did you ever find out?

P: strictly I don’t. But I read my notes once when they plonked them on my knee when I was going for an X ray.  And I think it was an 18 year old man who had been killed down in London.  When Radio Leicester and Rob Sissons from regional television asked me, I said I don’t know because that was hospital policy.

J: Did you ever   think you wanted to know or be in touch with the family? Or did that ever cross your mind that that would be something you’d want to do?

P: I think I would like the family to know how successful it had been.

W: Yes, I think it would give them some you know, feeling that they’ve done the right thing.

P:   But it was always quite a sensitive issue at the General  and I wasn’t going to make waves. I should respect the hospital policy.

J: And what happened with the transplant? Did it work well straight away? I must have asked you this in the past. I can’t remember.

P: No, it didn’t. I was on barrier nursing. I had to be dialysed after the transplant because it didn’t work for two or three weeks

W:  It was quite terrifying.

P: And the advancing  pneumonia as well. And they said ‘oh, we will do a biopsy’. And the doctor who did the biopsy was built like a rugby player. And I thought ‘oh heck’ but I didn’t feel a thing.

They said, ‘We’ll know by breakfast tomorrow’. And one of the doctors stuck his head round in the morning, to say, ‘it’s fine. It’s just been lazy. We’ll leave it. We’ll carry on’. And within a few days it started to function, and I’ve never had any rejection whatsoever.

J: So once it started to work, it worked. And that was it. And it has just been azathioprine and prednisolone ever since.

W: he did get stomach ulcers first of all. His favourite meal was roast duck. And he said, when I come out after my transplant, that’s the meal I want. I got it ready, buthe couldn’t have it for weeks.

P: They put me on some drugs to reduce the acidity and it solved itself in a few weeks.

J: it very common early on, because  the high doses of prednisolone particularly irritate the stomach. A lot of folk get it. And these days, we’d always put you automatically on an acid blocker, ffrom the beginning. But the transplant itself never misbehaved at all.

P: No, no problems, whatsoever. Amazing.

J: And so what’s happened since then? A  new hip?

P: Yes, a complete left hip.  Mr. Birtwistle did it , Stuart. They did an X ray. And he said, you’ve had a disease when you’re a boy, you probably didn’t know anything about it.

J: Perthes disease. Yeah. So the  hip doesn’t develop that well,

P: even I could tell the difference. My left leg was markedly shorter than the right leg. He said, Well, we can put that right when we do the operation. I said I did lose the use of the left leg when I was seven at the same time as the kidney trouble. It took them weeks to identify… they were giving me heat treatment, traction, they just thought my leg was playing up , but whether that was connected I don’t know.

J: Probably completely separate.  . Obviously,  your own  hip did pretty well to go so long… when was your hip done?

P: About 4 years ago when I was 68.

J: You mentioned, you developed type two diabetes as well.

P: That was about 15 years ago.

W: He doesn’t take any medication for it. It’s just the diet controls it.

P: Well, we grow  an awful lot of our own fruit and veg, we got a freezer for half an allotment for homegrown fruit and veg as well.   We have lots of white fish and white meat and that sort of thing. Yeah. So pretty healthy so like I say, apart from pigging out once in a blue moon, we’re pretty sensible.

J: After this fantastic 40 years, do you do you still think about your transplant every day?

P: Yes. Without a doubt. It’s not a thought but I’m aware of it every day. I can remember one of the nursing sisters saying after about 25 years ‘When do you forget?’ Well you don’t. You can’t you know, especially if you’ve had a stint on dialysis as well. It didn’t rule my life. But it’s something I don’t take for granted. Yeah.  I say God bless our National Health Service. I do. And I don’t mind who hears it.

J: in the early days after the transplant,  did you wake up thinking ‘Is it going to be all right today? Will something go wrong?’ Were you anxious about it?

P: Yeah. To be honest. But not so much now, I know what symptoms to look for So I’m reasonably happy when I go to the clinic.

J: Do you use PatientView to look at your own results?

P: I’ve not got it at home, but they do twizzle the computer round when I go to clinic  and scroll through the results for me.

J: You don’t go to clinic worrying?

P: No, not really. There’s a little bit of apprehension. It wouldn’t be natural otherwise I don’t think. I think I’d know, after all these years, if I was out of sorts really. Well, I ought to!

W: We usually go out then sit there  high fiving each other.

P:  You know there’s a trend in the NHS is to have practitioners now, isn’t there? Nurse practitioners and pharmacists. I think I’m a patient practitioner

J: Yes. There’s this idea of being of an expert patient isn’t there? I always say to the young doctors, ‘talk to the patients, these people know more about kidney disease than you for sure’.

W: One or two have tried to change your drugs routine, and you’ve said, ‘ no, I’m not doing that.

J: Did they try to give you cyclosporin?

P: Yes, and I discussed it with your clinic. And you said like me ‘if it ain’t broke, don’t fix it’. And I was mighty relieved when you said that.

J: That’s absolutely right. It might be that now you don’t even need the tablets. You know, it might be your  body’s completely acclimatized to the kidney. But we’ll never know, and you’d never do the experiment.

P: I’m sure I read somewhere about  patients in America, who tried it and failed

J:  Yes – there are people who just stop their tablets. Even after years. And, quite often they reject,but sometimes they’ll be all right.   It’s very odd, they just get fed up with taking the tablets.

P: Well, I’ve got a routine about mine. I always take them at six o’clock because I used to take them when I got home from work. Because if I took them in the morning when I was in a rush to go to work and two children, I might muck it up. I always take them after dinner in the evening. And I’ll put them in a pot and take one out and when I’ve taken one, I put (another) back in the pot. So I don’t think ‘have I just taken one?’ That’s a sign of old age isn’t it!

J: Yes! It’s what I do. I have to take regular tablets, and I’m very bad at it. So I have one of those little boxes with Monday, Tuesday, Wednesday, Thursday. I’m on four different medicines if I didn’t have that I would not have a chance.

J: We talked a bit about patients who started dialysis with you. Pam and Rod are the only ones you know who are still alive?

P: Yeah. But quite frankly, they were the only two I can remember. But they were the ones that I was most close to

J: And both of them got transplants soon. And I know Pam’s on her third transplant and Rod’s on his second. They are roughly your age, aren’t they?

P: Rod is certainly coming to the party but we’ve not heard back from Pam yet.

J: But it is unfortunately true, isn’t it, that most folks who started dialysis when you started in the 1970s are no longer alive now.

W: Well, we knew a few who used to do silly things like going out and eating all the wrong food. And they met a quite sticky end which was really upsetting. And I mean, all the nurses on the ward used to be really upset about it as well because they knew the patient so well, you know, it was like a big family.

P: I’ve met some lovely fellow patients, absolute marvels, you know, who are no longer with us. But the thing is, most of them didn’t tackle it, or face it with a sense of humour. I remember thinking ‘Well, I might be knackered, but I’m still going to enjoy myself’

J: So you’ve said several things as we’ve been talking that show you’ve been incredibly good at looking after yourself. I mean you’re obviously very careful with your diet, careful your fluids, careful with your medication, but is it you or is it Wendy?

P: Well, it’s partly down to my commanding officer! But it’s in my own interests because if I cheat, I’ll have cheated on myself, so why do it?

J: And therefore cheating on Wendy and the girls and maybe you wouldn’t be here.

P: I’m very lucky. I’ve got two lovely daughters and three fabulous grandchildren. I was 26 when I know I’d got renal failure and I’ll be 72 in April. That can’t be bad, can it?

J: No it is absolutely fantastic. Isn’t it?

P: I still shake my head in wonderment, sometimes.

W: We can still do lots of things. We find now that we don’t go to the seaside and things like we did with  children. And now if we go abroad to go to somewhere scenic, like Switzerland or the Italian lakes or something. For our Ruby Wedding we went to Switzerland, we went to the Jungfraujoch It’s three different trains with three different sort of modes, and it takes you right inside the Eiger. And it stops and you can look out through tunnels and see the glacier right next to you at the side and it takes you right to the top. The views are incredible.

J: I was interested about how you made friends with the people you were dialysing with? And I guess you were a pretty small group of people, weren’t you, right back at the beginning?

P: Well, the first Christmas on the renal unit, there were so few of us the  nurses bought all the patients a little present. That’s how small it was.

J: And now there are hundreds and hundreds of people on dialysis and hundreds and hundreds of people with transplants. Did  it feel like a bit of an experiment as though  it was sort of a new treatment, and you weren’t quite sure about it? Because it was early days, wasn’t it?

P: I had confidence in the treatment. It was beyond the pioneering days by then. I never had any doubt that it was effective. So no worries on that front.

J: And were you the same Wendy?

W: Yes, Yes, I think so. Yes, it was a bit scary. But there again, we’ve got every confidence in that. And in fact, the nurse that was in charge of the renal unit then was called Maren Gracie, and our younger daughter, her middle name is Maren.

J: This is not to be critical or give blame. But it is true that things were different than in terms of how much information patients were given And then on the other hand, you had to know lots of stuff in order to dialyse at home. And so did you feel like you had enough information? Or could that have been done in a different way that would have been easier for you?

P: I think possibly they could have explained a little more with what was going on but I’m not blaming anybody but it was… the unit was pioneering then  – the unit was new and being set up, wasn’t it when I went in the October? I think it only opened in probably the summer.

J: That’s right. It was John Walls, two or three nurses and Peter Walton the senior technician. It was like a very small kind of family in a way, wasn’t it?

W: The worst of it was when the technician, who used to come out while you were dialysing at night, was doing his courting. And if he was on the other side of Bradgate Park, when he was out with his girlfriend, he couldn’t hear the signal when we telephoned on the emergency phone in the middle of the night.

P: Sense of humour was a big factor all the way through. Doctor Walls in those days used to crack jokes with some of the patients. There was one patient who said, ‘I’ve got a neck ache’, and he said ‘Well  you’ve been a pain in the neck ever since you came on the unit.’ There was another old chap, who was dialysing and John Walls would say ‘Morning Admiral’ and he said ‘No, it’s Brigadier today, so he said ‘Oh, morning Brigadier!’ So, that cheered us up .

Who was that little, small patient? Albert Neat!  (all three remember him with fondness)

W: He was a lovely man. We’d say, ‘we’re doing an event in Russia, Albert, next week, is that ok?’ and he’d say, I’ll be there.’ Wherever you went, he would go, on public transport. He was such a nice man. And he showed us his list of medication. It was huge. You remember people like that.

J: He had a transplant for many years.

P: There was one patient. I can’t remember his name, who’d had a transplant for donkey’s years and they gave him a massive dose of prednisolone . I don’t think they lowered it quite so much. And it affected his eyesight. Gave him cataracts.

J: Yes, that’s correct. Big doses of prednisolone  may give people cataracts. Yes, true.

J Is there anything you haven’t told me that you think we ought to record  – the kind of things that people don’t normally ask about? Things about how it felt, or what you went through?

W: I don’t think so. I think when patients first go home though, they were a lot more scared when they got by themselves on dialysis at home than they were letting on. Because in the days when we did the patient society, there was one lady in particular. And every time she was going on dialysis, she used to phone me up and say, ‘I’m not going on tonight’. And I had to talk her into it, to get her onto the machine every night and sort of point out all the good things that were going on, and all the things you know, ‘we’re going to the theatre next week, all of us, you know, you’ve got to be there’. I think it was the needles more than anything, she was petrified of it. And, you know, continually all the time, it was every other

J: So you were not only supporting Peter, you’re supporting half the other patients as well.

W: I used to go down there. They used to call for me to go to the hospital to go and talk to the new patients all about the ‘s society. So I’d take the baby with me and nip down on the bus and go and talk to the patients .

P: Sometimes I’d pop onto the unit when I’d had my transplant, but they put a stop to that, probably  because of health and safety? I’d put my over shoes on and gown up. But the nurses had a sense of humour too. I remember walking through the main reception at the general once and one of the nurses shouted loudly to the crowd. ‘Peter, you look different with your clothes on!’

J: What was the very worst moment, each of you, in all of these nearly 50 years? What’s the worst time?

W: The time when I thought his transplant wasn’t going to work. When he was really ill, after he’d had it.

P: I’d go along with that.

J: Partly because, you’re hoping it’s going to be the great thing that’s going to change you, isn’t it? You have so much invested in the transplant.

P: But I never thought it was going to fail. I thought ‘ I’ll have it, let’s see what happens’. I didn’t think any more deeply than that. I thought there was no point. You can’t change anything . And the thing is, I’ve been fortunate enough to have this opportunity. We got lots of fabulous friends who we have made from the unit as well.

W: and we still hear from some of them. Mare Waterfield writes to us. Kay Withers, but we’ve lost touch with her. We had a super patient who lived in Colville and his wife did all the demonstrations and the toy exhibitions for Palitoy. So when we had all our garden fetes and things, all the toys that had been on the display, she’d bring a carload and give them to us, It was like Christmas! There were Star Wars toys, Millennium Falcons things like that, you know, all in their packets.

P:  We used to get things from clothing factories in Leicester , socks by the barrel load, but now all those firms are all gone. And you can’t have a ‘do’ at home now because of health and safety. If people you know, trip down our steps they might sue us. So we don’t have a fete anymore. We just put a big notice at the bottom of the stairs. Disclaimer. You enter at your own risk. When we first started, lots of people had little garden fetes and they’d get a couple of hundred  pounds here and a couple of hundred pounds there. But that doesn’t happen anymore so we’re doing a sponsored walk and hopefully we’ll get some sponsorship for this roaming dialysis unit.

J: That would be fantastic. Yes  in the in the early days when I was a young consultant I  was very often on a Saturday or a Sunday out at a fete or a whist drive dance or something picking up a cheque.

P: Yes, John Walls did that for us occasionally, like Groby working men’s club, collecting a cheque. He went to quite a few places, picking money up.

W: I remember going to Stone Hill School and speaking in their assembly to them about it and taking the baby in the push chair. Collecting money and the Methodist Church. We went all over the place.

P:At the end of the day I’m incredulous that at the age of 71, having being diagnosed at 26, I’m still plodding quite happily along with a growing family

J: and looking in very good nick. It’s wonderful isn’t it?   I remember you saying to me right back near the beginning, that when you first started you were thinking would you be alive to see Fiona grow up. Maybe I’ll see her through school. Maybe I’ll, maybe I’ll, and you would never have  thought about seeing your grandchildren

P: it’s not being morbid, it’s just fact.

J: It’s being realistic.

W: It’s been lovely seeing both their weddings and everything and then the children as well. You know, grandchildren it’s just fantastic.

P: I’m now playing rough and tumble with my two year old grandson now, climbing on me.

W: He loves his grandpa.

J: Thank you both very much for talking to me.

Last Updated on April 8, 2023 by John Feehally