Making decisions about knee replacement as an older person with multiple conditions

How quickly did you and the consultant come to the decision that surgery would be necessary at some point?

Immediately. It shouts at you from the X-Rays, you know?  When, when bone’s touching bone you know? You can’t just inject some cortisone or something like that you - well that’s what we’re doing to kill the pain but, you know, the really -, it has to be opened up and something has to be inserted.

To be honest, I suppose looking at it from the way you are, he just said he would operate as and when the opportunity arose. And I just took my usual approach to that which is to say "I’m in your hands," you know, "you will do whatever you think is the right thing to do."

I mean I’ve had several stents, I’ve got six stents in my heart and when they do that, I just say, "away you go."

I’ve had four heart operations at once, that kind of operation, done open heart and I’m quite content to put myself in the hands of these professionals and hopefully the outcome will be correct and they’ll do whatever is necessary.

Because you’ve had previous experience of surgeries have gone quite well, do you think that - is that in your mind if you’re thinking ahead to possible knee surgery?

No, I just think that’s more my nature. You know, as you make your way through life you have lots of different experiences, and I don’t think I’m - I’m not really afraid of things that much.

And I feel that if, and that is for- relative to the entire family - if someone’s, someone’s got a problem, you know, one of the children, or the grandchildren, or something like that, I’m forever saying, “Get it fixed, get it fixed, get it fixed.” You know?

I think if you’ve got a medical problem, you should get it fixed. I don’t see any point in struggling if there’s a - and you know, the pain or whatever it is comes along with it.

I mean it, it’s not much, it’s not fun to look forward to, that, but you get over it, you know? And you can endure it.

I trust him completely, and he has a very, very good reputation in the area, and I had very good treatment from him before. The hospital here-, he’s one of only, I think, they said two surgeons involved in this robotic surgery as well, in trialling it, and he’s doing it for hips as well.

No, I trust him completely, and I don't know anyone who’s ever had a bad word to say about him, so I definitely wanted the same man.

I’m obviously hoping that it would solve more problems and my knee would be absolutely fine, and I’d be able to get up and walk away. Not literally. But you know what I mean?

That is obviously the best hope, the best outcome. I think it’s highly unlikely because I think after this number of operations if it hasn’t worked now, it’s not going to. And I suppose that’s really what makes me think ‘do I bother and even have it or do I just run this thing into the ground and then it really has to be just taken off?’

It, it is a difficult decision and in a way that’s partly why I want to go and see the guy again, so I can just talk it through a bit more. And I think that is why I may well go privately to him. That’s so we can have a certain amount of time on. I mean, you know, we know that I know I’m going to see the guy I want to see. And I also know that I’ve got one half an hour or whatever they give you. It may even be 15 minutes, is better than nothing.

NHS really, it’s very much sort of in out, in out. And I didn’t know this character at all the last time I saw him. And I really wasn’t, I didn’t warm to him. And I do like to have a rapport with my surgeon, I really, really do.

I think it’s so important that you get to know your surgeons to find out how he thinks, or what, you know, he thinks. I mean, my original surgeon, I used to ask him about his family and all sorts of things, you know? One was on very personal terms and that’s lovely.

And as you said earlier, you’ve built up a rapport with the surgeon as well haven't you? You’ve got that relationship.

Absolutely. Very much so, yes, indeed. So, I think that and I think that’s actually quite important when it comes to this sort of thing. I trust what he says. He has said, he actually said the word ‘amputation’ when I asked him what happened and I just thought ‘this is awful’.

So, what I think I’m going to do is to try and put up with this as long as I can because, and then just get back to him. I don’t know, what I’m well, I don't know what I’m going to do. I haven't really, I need to talk to the family, I think.

I don’t seem to come through things easily as you’ve probably gathered, you know, with even the cataract starting it all off. And that’s, you know, what they consider to be probably the simplest operation going these days.

Then the mitral valve left me in a complete and utter mess and, not only that, but was only partially successful. And then I’m not that happy with how my eye looks and feels from the glaucoma operation.

So, and there’s smaller things as well. I don’t seem to-, things don’t quite seem to go as they’re meant to go. So yes, I do have some anxiety about that.

And obviously, the longer everything goes on, I’m getting older and older, which is, you know, [the surgeon] was very clear about everything, both the things I’m taking, the age and all that kind of thing.

He has to, like they do, tell you all the downsides before anything. Yeah, so it’s not- [laughs] it’s not something I would look forward to except in the sense that it would be great if I can have it, get over it and be more mobile.

But as I say, when we first heard that [partner] had breast cancer, quite honestly for some time the world just stopped turning if I could put it that way. But I mean, she’s received marvellous, marvellous treatment and, which we’re very fortunate and she still is, the way they’re looking after her as well at a particular hospital where she goes to, which is a centre for breast cancer, I mean, absolutely superb. And the hospital I go to for heart is one of the leading heart hospitals in the country. And I mean, the treatment I have had has been fantastic.

And what is great at that particular hospital is that when you’re talking to anybody, they make you feel as if you are the only person, you are the only patient they’ve got. And you feel so, they’re so concerned about you and nobody else. And, you know, that sort of things like that are very reassuring. And I have to say that I found that similar experience when I went to my local hospital here for my bladder tumour. And that sort of treatment I feel rather than being one of a number like, “Next please, yeah, alright, right,” you know. No, no, no. The sort of treatment that I have been fortunate to receive at my original hospital and now at the hospital for my bladder tumour, I feel that I’ve been most fortunate and I’m just hoping and praying that fortune is going to continue [laughs] with my knee [laughs].

If it’s offered, as he seemed to think it might be possibly a- a half knee then yes, I would certainly go ahead with it.

I know that when I had the last half knee done, it was one of the most painful things afterwards that I think I’ve ever experienced in the knee. You were sort of so reliant on being- on that to sort of carry you to move around, but it was certainly worth it in the end, you know? From the difference.

So from beforehand, before I had it done, and after it made such a difference.

I sort of feel, yes- and what worries me I think is seeing how people older than I am struggle to get around. I don’t want to be left to feel that I have to wait so long that I’ve lost the ability to move around, you know, fairly- fairly easily, or fairly regularly before they- they will do the surgery. Which means that the recovery is going to take so much longer and maybe not happen.

I’ve got friends in that situation, really, who’ve now such as looking at their real problems with the knees and they’re in their 90s, and I think, you know, obviously it’s not going to happen, I think.

Having had my hip replaced, obviously, I know what it’s like afterwards. It was painful. And we’re assuming it will be something like that again.

I remember the following morning when I woke up, I was in a lot of pain from my hip and they gave me some morphine then which I must admit it did wonders. So, I’m thinking it may well be the same, you know, the same type of thing that I will probably wake up the next morning and think oh golly, it’s horrible, my knee hurts again. And hopefully they will give me something to put it right.

But after that first dose, they were very good actually and they did -. I mean they get you out of bed very quickly, which amazed me. But I think it’s good because it gets you moving again.

So, I’m assuming that it will be something the same.

Oh, I knew right away I would have to, it was the only way, and then when he said how bad it looked on the X-ray and so on. He says, “I know you're in a lot of pain, we'll get this done if you're happy with that?” And I said yes, I definitely was; I wanted the pain away.

Which has happened, so it really has.

I wondered as well: in addition to talking to the surgeon, was there anybody else that you talked to that sort of informed your decision to go ahead with the surgery?

Well, obviously just family really, and what they thought about it, and they were all for it because they knew what I'd been like. And my doctor at the surgery, you know, because she was good. So yeah, I talked to her about it and she just said, you know, “Do it, just go ahead and do it.” So yeah, it was sort of the doctor and family; that was it.

Yeah, and I’ve a Motability badge, you know, I’ve got a disabled badge, it’s not only because of my knee, and because of my other conditions, they’ve let me have a disabled badge and-, but it was no-, it was no-brainer when they said, “Yeah, you-, we can do it,” and, you know, epidural here I come, I didn’t even think about, ‘oh, shall I, or shall I not?’ No, I don’t-, I went for it; I just wanted it done.

I’d be very guided by what the consultant says, you know, the likelihood of it being successful.

What the risks are going to be, and I mean [sighs] I suppose I’m prepared to undergo a fair degree of risk to try and get myself more mobile, to be honest.

Could you say a bit more about that?  I suppose I’m just interested in, in what you mean by what level of risk would you be prepared to, to go under to have the outcome that you hope for?

Well, I think if, you know, a really qualified consultant said ‘not on your nelly’, I wouldn't [laughs].

But if- I mean every operation you have, they always tell you that there’s a possibility you could die, isn’t there?

You know, the- I mean that’s a fact of life, whatever procedure you have there are certain risks. So yeah, I think I would be very much guided by what the consultant advised and said. I mean obviously one’s very anxious about going in for any operation, but yeah, I think that the quality of life, you know, it’s deteriorating badly and it’s not much fun.

You know, if it was going to do any good, I’d go ahead and have the operation if it was offered even though there may be underlying risks. I think ‘well, what have I got to lose now?’ Because sometimes the pain is so bad you think ‘oh, what is this- is this how it’s going to be from now on?’

You know, if I don’t have anything done, these are my only means of carrying on, by having stronger and stronger painkillers you know, is that the only way to deal with it?

And I would hate to end up, as I say, sort of sitting around all day now, doing nothing. I think the quality of life is better than the quantity.

I mean I was in such pain with my knee, and I was walking with a stick and limping a lot, and I had been like that for some time, and really, I thought unless I had an operation, I could well end up in a wheelchair because I couldn’t walk very far before the pain kicked in, and it sort of limited what you could do. I mean even a simple thing like going out shopping, etcetera, you know, I didn't have to walk too far before it got worse.

And anyway, I thought anything was better than carrying on as I was, and I’d rather take the risk and go ahead, you know, and just sort of put the disadvantages, or things that could go wrong, at the back of my mind.

Well, you have to weigh it up, that’s why I’ve, you sort of deliberate it. Yeah, I could have been more vociferous potentially, thinking. So I’ve maybe kicked the can down the road as well, you know? Reluctantly, because the physios did say - you know there’s no guarantees, you know - you’d be better off if you just keep doing this. They are insistent that, if I just kept going with the exercises, I would be alright.

And for you at the moment the balance of the benefits that you hope a surgery or a treatment could have versus the risks - what’s the balance for you? What’s your thinking about that at the moment?

No, I’m - if he says I can have a knee replacement, any surgery, I’ll do any surgery now cos I’m just heading for sitting in a wheelchair now. That’s, that’s it. If I don’t do it, I’m- me mobility’s reduced, or I’ll just fall over and have a heart attack.

Or I’ll get diabetes and then I’ll be, there'll be something else, so whatever the outcome is I’m hoping he’s gonna get a knife inside me knee and do something, fix something.  Whether it’s just the ligaments or something like that, or to clean the joint out, or to do something with the cartilage, whatever it is.

But I’m at the point now like, even if I got septicaemia or Covid, I don’t care. I want my knee fixed.

It’s like a risk that you’re - worth taking?

Yeah aye. Yeah, it’s yeah. It’s a no brainer. I’ll just - I’m doing it now cos I am heading for sitting in a wheelchair.

No, just fix my knee. That’s the one, what I want him to do. I’m not worried about anything else, just, even if he tells us all the associated risks, I’m not bothered. I just want my knee fixed.

I delayed my operation for a long time because I wanted to avoid any surgical procedures - I didn’t want to put my heart at risk, you see? Yeah, yeah.

But then my mobility got so bad that, you know, I’ve not been able to go out. Would have been another-, because that would have made my heart worse [chuckles]. You know what I mean?

Yeah, so that you’ve got to sort of weigh up, you know, the pros and cons. 

And I said, “Look now you see, if I’m sort of- if I can’t go out. If I am very weak, and something like that,” and he-, "and I could have an operation which will give my mobility back."

And I’m sort of-, I mean over cautious-, you know? Or worry too much about what will happen with my heart.

Told my brother, I said, “Look, I made my decision.”  Well look, I’m not going to sort of be wishy washy or dilly-dally, I’ve got to decide whether I want it done or not.

So I went in with a positive-, you know? I went and I said to the doctor not to look for reason why I can’t have it done, but the reason I should have it done, you know? Because it’s a quite a successful thing.

And I thought that unless the doctor tells me, advises me against it, then yes - if he’s saying that’s fine, he can-, I could have the knee surgery, and said, “Yes, it, yeah, looks that way, we can sort of, your leg will be straighter and you’ll be independent, you’ll be more independent, you’ll walk.”

And then I said, “Fine.” He said, “Yeah,” I said, “Yeah.”

So he read me some of the things on the consent form and so forth, and risk and all that. I said, “Yeah, fine.”

So I’ve signed it.

And you mentioned the pros and cons of surgery that you discussed with the surgeon; could you talk me through those please?

Well, he wanted to make sure that I knew that surgery was actually, it -, that other options would have included injections and things like that, but neither of us thought that was going to solve the problem, certainly permanently.

And because-, I think it was possibly slightly shorter because we have discussed some of this before - he told me some time ago that the knees needed doing, and then of course Covid intervened, and he said he would leave it up to me more or less to decide when it was really necessary.

He said, “I've got to warn you, that knee surgery is often not as successful as hip surgery,” and he knew, obviously that I’d had positive outcomes from the hip surgery, so he just wanted to make sure that expectations were not too great, but it was absolutely fine.

And was that outcomes in the sense of more pain initially or that the mobility might not be so good in your knee compared to—?

All of those things, and the length of recovery time. And he did warn that some people would say, even after the knee operation, that they were sorry they’d had it done, it had made no difference to them, but I can-, could never say anything like that at all.

How did you feel when you heard that information, that some people would be disappointed with their outcome?

Well, I thought to myself, ‘it can't be any worse than I am at the moment, even if I flatline here, it’s no worse.’

Well, I mean the cons are having the damn thing cut up again, and he did say this is going to have to be the last one because he’s running out of bone, and that I can quite understand. And that’s why there’s- there would have to be an amputation because he would have no more bone and he couldn't do it again.

And I think that’s what I’m concerned about is the fact that if it doesn't work, and up to now it hasn’t - so in one sense I see no reason why it’s going to - I then do have to lose a leg and that idea doesn't appeal to me.

I have to go and see him, and I’m going to go and see him actually before I make the decision, because I just want to- I need to talk it through with somebody and see if there are any options at all, and I mean I would see if he could do an arthroscopy rather than doing a two-stage before he does it, just to see if he can identify any problem.

You know it’s- no, it’s-, but it would be nice to just be able to talk it through with somebody who knew what they were talking about. So, I will go and see him.

So, will that be privately that you arrange to speak to the professor but the surgery would be on the NHS if you have it?

Absolutely, got it in one, yes. Yes, that’s exactly it. I mean I will go and will pay for an appointment, definitely.

Do any of your other health conditions affect your thoughts on surgery?

No. I can’t let them because it’s, the whole thing has to be, I have to concentrate on the fact that this is the arthritis and it’s no.I just, I mean, when I go into it, I sort of, I know for a fact that it’s the only way around this and I’ve got to have it done.

And, so, I will just yeah. Just go into it almost single-minded and not worry about anything, because that-. Mind you, you see blood pressure that was—that, I do tell them because I have had trouble post-surgery with blood pressure.

I also had trouble one famous time with blood sugar and that was a very unexpected one. But that shot up to about over 30. And I was kept in recovery I think for about 11 hours while we got it down.

Gosh.

That was, that was a major, I don’t know when that was. I can’t, my god, have I got it written down? Yes, December 2015. And August 2020 it took nine hours to get it under control.

But if the patient wants to see a surgeon, unless there's an absolute bar to why they shouldn't have an operation, and you could make an argument that that's not for the GP to decide, a patient may make that argument - the question is is it the right thing to do to give the patient the opportunity for the audience to talk to a surgeon to make that decision? And a surgeon would hopefully look at that fairly sympathetically. And what they would usually do is ask the opinion of the anaesthetist, who is the doctor that puts the patient to sleep, because fundamentally, when they have surgery, it's the anaesthetist that is responsible for all of the medical problems and their, you know, whereas the surgeon will just focus on putting the new knee in. And we see that, we see we see patients come through that the GPs referred because the patient wants to talk about an operation and they have various comorbidities, and the surgeon will ask the anaesthetist to sit them down and give them a full medical assessment. And, you know, that's a difficult decision between anaesthetic surgeon and patient, isn't it, as to what the risks are, what the likelihood is that things aren't going to go very well. And then three people make a decision as to whether they proceed or not.

How quickly into the appointment did you know that surgery was an option for you and that it was going to be offered?

Oh, I knew years ago I needed it. They told me before [my husband] was poorly that I would need it and I just looked at them and I said, “I know I need it, but I’m not coming until I’m absolutely destitute.”

And he said, “Why?” and I said, “Because, have you ever had a knee replacement?” And of course he said, “No.” It was a young man, and I said, “Well, it hurts like hell before you have it but after you have it, it’s 100 times worse.”

And it really is, the pain is unbearable. I would rather have nine hip replacements than another knee replacement; I’m just dreading it.I really am. To be perfectly honest with you. The pain was horrific, absolutely horrific. And it took almost 18 months before I felt normal again.

Gosh, yeah.

It really took a long time. I don’t know why, it just did. Yeah, it was a real bugger. And I kept putting it off and putting it off and then of course, in 2018 we discovered that [my husband] had melanoma. And I mean my knee was, I was in, I was hurting then, obviously I’d been hurting all along, and I thought ‘well I can’t do anything now because I don’t know which way [my husband] is gonna go and I’ve got to be able to look after him to some degree and he can’t be running around looking after me if I’ve had, got my knee done’.

So yeah, so [my knee] was put on hold and I waited until after the dust settled here in the house and get myself back on an even keel, and I contacted my doctor last year. And now they’re getting the ball rolling.

No, it was, I mean he’s very nice, a very nice man and, you know, as I say he was quite hopeful that my knees could go on, you know, quite a while if I was lucky, I suppose. And, I do have to put up with the, you know, with the pain of them, you know, more so when I’ve had a busy day or something like that, you know. But you’ve always, you know, gotta weigh that up against, you know, six weeks laid up after an operation and [wife’s] situation, I [sigh], you know, I would be really reluctant to have to go in hospital and with [wife] gets these bad times in the night, you know.

Wouldn’t be something I’d relish, you know.

Of course. And so, what is the situation at the moment in terms of are you waiting to hear back about a date for surgery or-?

No, no, well the ball’s in my court to request it if I get to the point where I think I can’t put up with this anymore.

Okay.

You know. But as long as I can reasonably keep working which I do and like I say I’ve gone back to play table tennis and well then obviously when I do stuff, I ride my bike, you know, they hurt and that’s it, but then I know that. You know, its choices have to be made, you know.

And that’s, that’s sort of my choice, certainly at the moment, you know.

What with, you know, [wife]’s situation with her night times and you know, I’d be, well I wouldn’t be too reluctant about going in to have it done regarding the Covid because I think they must have got that all planned out fairly well, but obviously it’s difficult times and it’s everything all together, you know, I, it would be really difficult for me to say, “Yes, can I have my knees done?” you know.

I’d have to sort of, I think they’d have to be, deteriorate to the point where they were giving out or locking or something, and then I would have to.

Take the plunge somehow or other, you know.

But until then I’ll probably, if they stay as they are, which they’ve been the same now for oh I’d say they’ve been at this level now for two or three years probably. And I’ve managed to deal with it and do everything I wanna do. And that seems to me to be the best option at the moment.

The most influential factors would be the length of time you’re off doing anything after the surgery because my wife can’t drive.

And also [wife]’s situation in the night time which, with her nightmares, I’d be just worried sick for her, you know. If I wasn’t there, you know.

So, it’s that as well. And it’s a combination of the two, you know, because it would be extremely difficult for us if I was laid up for six weeks twice, you know, with [wife] not being able to drive.

Well, the topic he’ll discuss with me I hope, is my knee, and what they feel that they can possibly do for me and [sighs] I would want to discuss with him the possibility of being able to have something done with it without having surgery, and how long that they might consider I could go with it as it is without it seriously needing surgery, if you understand what I mean?

So, your preference would be to put it off- avoid it altogether or put it off as much as possible in terms of surgery?

Yes, yeah. Yeah, but that is for my own personal circumstances, because as I say, I live here on my own at the moment, and it becomes difficult once you're in a situation whereby you've had that operation, in being able to look after yourself, that’s the only thing.

I’ve got [sighs] no problems with having the operation, and in fact if I speak to anybody about my knee op- my knee operations,  that are complaining about their knees, I seriously tell them to consider having it done because it’s one of the best things that you can have done.

But as I say, at the moment my knee is at a stage where I can live with it, it is- it does become somewhat painful, but I can live with it.

But the reason for seeing the specialist, or mentioning it to my doctor and then being referred, is I want to see whether living with it at the moment is causing serious damage to it that you know- or can I carry on as I am at the moment, bearing with the discomfort that I’ve got and not be doing more very serious damage to my knee.