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

It's been a lot, lot better. The pain is some, a lot, yeah, it’s certainly easier. I won’t say the pain has gone completely, but it just depends what I’ve been doing all day really. If I’ve been on my leg.

Yeah, that’s it. It really depends you know, if I’m on my feet a lot - it just has a sort of a bit of a grumble and then it sort of, it’s uncomfortable later on in the day.

But other than that, it’s fine.

Are there things that you can do now that before you had the surgery were sort of difficult or just impossible to do?

Mm. I can go up and down stairs. One thing I can’t do though, which is what I really was hoping to do was to get on the floor with my grandchildren.

I can’t kneel without it being uncomfortable. But yeah, that was the disappointing, a bit disappointing really, that maybe I was expecting too much, I don’t know.

I am because we go-, every so often we go to [company’s] Hotels at weekends, when there’s certain events going on, 60s, 70s, and what they call ‘festivals’, 80s, or what have you, and whereas before, my wife used to go up and have a bit of a dance, a bit of a boogie, I used to sit back and couldn’t do it, or might do if I had a few whiskeys, not knowing what I’m doing, and not feeling the pain, but now, I think last time we went, I got up and we had a bit of a bit of a dance and that and it was great, and like the old days.

So-, and the times when I go-, because I go and see my grandson up in [town], I take my walking stick and now he wants me to donate it to him now, [chuckles] “The stick, granddad.”

[chuckles]

Yeah, so I want-, you know, I went up to see him yesterday and I was running round after him, so you know, I’m even kicking a ball to him when he’s out in the garden.

And would you say that the outcome of the surgery has matched, or met, your expectations of what you’d hoped it would be like and the recovery from it—?

Oh, I wouldn’t say it’s-, I’d say it was more than, you know, expectations about it, you know. I mean it’s-, I can’t-, it’s hard to put in words how I feel sometimes when I can just go for a walk round the shops or go to walk round the-, what we call ‘the Green’ and that, you know.

I can’t kneel, [clears throat] excuse me, I can’t kneel, but mind you when I do kneel down, I can’t get up, so there’s no point in kneeling down anyway, you know, so, you know, but I suppose if you want to call that a drawback, that’s the only drawback, but it’s not a drawback to me.

As you say, it means so much to you though to be able to do things, have some independence, and get back to—

Oh, definitely, yeah. I think last Christmas was about the best Christmas we’ve had for ages in a respect of being able to go places, do things.

Wife: It’s quality of life, you know?

Yeah, yeah, you know?

Yeah, absolutely.

Being able to do the Hokey-Cokey New Year’s Eve and things like that, and it was great.

Wife: New Year’s Eve he was dancing-, and stood up dancing—

Yeah.

Wife: —most of the night.

That’s what the wife, New Year’s Eve I was dancing most of the night.

You go over in your head anytime you go somewhere, and you remember the last time you went down the staircase.

We’ve just been-, for example: this weekend we went down for Christmas to a place in [England], and we stayed in the same house. And I remember the Christmas visit - I think it was two, three year ago - and the staircase, it was-, it’s an old house with a huge staircase. It was like a dread to get up and down those stairs, you know?  I had to sort of lever myself, heave myself up, lever myself down.

I can remember coming down the stairs - this is what you do, you go over here - ‘oh the last time I did this, I couldn’t do this, I couldn’t do that.’

Even the little local bookshop was still there, you know - that’s got an upstairs: up the stairs.

It’s just-, I cannot tell you what-, how-, what it does to your life to get your knee changed. It’s just everything-, and it comes back to you every time what you couldn’t do and what you now can do; it’s just incredible.

It was just that painful and that restrictive, you know it really was. You know, instead of being 70, I was 90, that’s-, that’s what you go to. I want the last years of my life to be mobile, you know and now, it’s just-, it’s-, I cannot stop expressing the transformation in my life, of this, and being pain-free, and regaining mobility.

My own personal wellbeing, you know - mentally I've improved. Every-, everything, it just-, it-, it’s just-, I-, Yeah, I just cannot describe how different my life is.

Every morning you sling your leg out of bed and stand up, and you don't have to go through 10 minutes warmup, frightened to put your knee down. You know, honestly, it’s just-   I'm repeating myself, and I just can't tell you how-, what it’s done to my life.

Oh yes, yes, much better, I can actually kneel on the floor and actually get up, because I never could before, it used to take ages to try and, you know, get the knee sorted to get up off the floor and now I can do that, and I'm walking more on it as well, I'm trying to go out for walks most days just to keep it going, you know?

Which is great because it used to be I couldn't walk to the end of the street, the pain was so bad, you know? So that’s certainly changed.

That’s brilliant. And I know that you said last time, you've got young grandchildren, don't you? So, sort of getting—

Yes.

—down on the floor and being able to play it must be really lovely?

Ahh, it is, it is, it’s so funny because the little one, she’s just four, and she’ll say to me, “Grandma, I don't have to lift you up anymore,” because she used to give me a hand, you know, [chuckles] to, lift me up, so—

So sweet.

So yes, that is much better. I feel like I've got a bit of life back again, you know?

That’s so good to hear; brilliant.

Yeah.

And how has the rest of your health been since we spoke it-, the first time, so about nine months ago?

Oh, fine, fine, you know, now that the knee and all’s done: I've got a new lease of life so everything, touchwood, has all gone fine.

Oh, most definitely. I’ve been able to walk a lot further, yes most definitely. Uphill is a - still a bit of a bind but no most generally I have been able to walk a lot further and also you know to stand, whereas I couldn’t really stand before now most certainly I can. As I say I try and do a little exercise if I’m standing around for some time so whereas I would have to think about going for a little walk I now just don’t think about it, I just, we just go for a walk.

How have your other aspects of your health, or your health in general been since then?

It has helped, I mean I’ve still got - you know - like asthma and sinus and eczema and all of that good stuff, but and the main thing is looking after my husband with Alzheimer’s which is exhausting.

But I’m managing because I can walk now. I’m not having to think, ‘Oh my goodness I can’t make it to the kitchen,’ or you know, ‘I’ve got to go up those stairs,’ or all of those things. It’s fantastic.

So yeah, it’s really, it’s literally changed my life, it’s fantastic.

Oh, no, I feel much more positive.

Because before I went in, I was getting quite depressed because I thought, as I said, I don't like painkillers, and the pain was so bad I thought, you know, where’s this all going to lead? If I don't want to take painkillers and this pain is so bad and I'm moving less and less? I can't walk as far, I was getting quite down.

So now, no, no, I'm much more optimistic about the future, whatever future I've got. I mean you have to be realistic I suppose when you get to 85. But it’s made a real difference to my life,—

Good.

—and my mood I suppose.

Oh, absolutely. Once you get over, you know once that pain had gone from the side of my leg, I was absolutely fine. I mean you know we’ve been out and I’ve been up, believe it or not, and danced.

So, we went out with some friends a few weeks ago, and it was great, and I didn’t feel any stress on my knee or anything, and yeah, I’m fully functioning with it, you know?

And how has the rest of your health been over the last six or so months?

Oh good. Yeah, I’m getting there. I’m still trying to lose some weight, which is coming off slowly and yeah, good. I’m all, you know, I’m fine.

I am on, if you would like me to tell you, I’m, it doesn’t matter - I’m on atorvastatin. And ramipril, for blood pressure.

But I’ve lost some weight and I don’t, I’m hoping that I can in the next six months not take it after they say another six months, I hope I don’t have to take the ramipril. For blood pressure. I’m trying to bring it down and eat sensibly.

But yeah, no, I’m fine. I’m, you know I haven’t got a problem.

I have got a little bit of blood pressure but I think that’s quite, quite normal for people my age and I feel well in myself, so you know, so I’m very lucky really at my age to feel the way I do.

And last time we spoke, Dorothy, I think you said that you had some problems with your toes that you thought might be related to your knee problem?

Yeah, and do you know, I think that was absolutely right: that’s all gone.

Oh really, so it’s completely resolved—?

Yes, I was getting trouble with my foot, I couldn’t get my shoe on properly. I couldn’t wear the shoes I normally wore. And my one toe was very bad, but, no, that’s all gone.

And so, and I was also, before the operation, getting sciatica in the back of my leg and touch wood that’s gone too.

That is yes, it’s marvellous how lucky it’s cured quite a lot of other things that were going on at the same time.

Do you know, and they all seem to be attributable to the fact that I just wasn’t walking properly. And so, yes, I mean the thing is like you're transferring your weight obviously to the other side of your body, and then that doesn't do your other leg much good either.

And your back as well can be affected, you know? I’d find my back just get more backache. And so, yes, it’s not just the knee itself, it’s other things that it can make worse, I think.

I mean, except for the horrendous pain, which they did warn me about, it was more painful than the first knee, afterwards, and unfortunately, it’s been very, very painful ever since and still is, and that’s the awful thing.

Well yeah, I mean it’s just sort of continued and it looked like it was getting better. And you think, ‘oh, thank goodness for that,’ and then it wouldn’t, it would just get worse again. 

I’ve spoken to several other people around in [town] who’ve had knee replacements and they’ve said the same: their first one acted exactly fine and how they were told it would happen, but the second one, because it was done differently, each one of us that I’ve spoken to. We all had proper surgery on the first knee, we were put out, we spent four days in hospital and it was absolutely fine, it’s only - everybody is saying the same - it’s only because we had the epidural, we weren’t given-, we weren’t given the proper anaesthetic and they tossed us out, we weren’t given anything that we used to-, that we had with the first knee, if you see what I mean?

Oh, okay.

We were in hospital for four days and I think that it started off with decent treatment, but we were sent-, all we were sent home with was just paracetamol, and it didn’t touch the sides, with anybody that I’ve spoken to, you know?

So yes, it continued to get a little bit better and then it would get worse, and then it would get a bit better, depending on what you do. I mean if you sit around doing nothing, it’s fine while you’re resting, but then when you get up, it’s no good at all because you can’t even walk on it. You’ve got to keep it going, and I’m still doing the exercises even nearly a year later.

The activities that you were hoping to get back to after you’d had the surgery, have you been able to do them—?

None, I haven’t done any, I can’t do anything that I was hoping to have done, that I did with the first knee. With the first one I did everything: I was playing with the grandchildren, playing cricket, doing everything, riding a bike – I can’t even get on one now, leave alone ride it, so yeah.

Everything they promised with the first knee, happened, and it was absolutely wonderful, but nothing, I can’t do anything with this second one at all; it’s such a shame, it’s such a disappointment, love.

And you just-, well, you know? You want it done because the first one was so successful, you want it done because you want to be out of pain, I certainly didn’t think 12 months down the line I’d still be in pain; I can’t believe it, it’s hard to believe.

Yeah, well it’s seven months and I ain’t got anywhere yet, as I say, I’m not even walking on my own.

I can waddle like a duck, in the lounge, for about, I don't know, the length of a settee, but that’s about as far it goes.

So, I’ve had ramps. I mean they’ve been round-, I mean the physiotherapist got ramps for me to go through my conservatory, out the conservatory. And then I’ve got a path anyway that goes round to go out - because I’ve got three steps at the front and two steps at the back - so that means I can’t go out the front door, or the back door, so I have to go out the conservatory, which is further back and round.

And the rehab physio person comes-, well, she’s been coming about once a week, not always, but roughly once a week, and said, “Oh, we’ll go out in the sunshine and go and walk from there to there.” But that’s all at the moment, and nothing else, and I’ve got the exercises. So, I can’t do any more but be patient.

Had anyone said how long it might take to recover or has everybody just said it will take as long as it takes?

No, because I when I had the operation, I really felt good, I really was good and I got through that well, and I thought because other people were-, you know, I know other people, and, you know, they’d been sort of driving a car after four weeks or eight weeks, they were walking on their own two pins for-, after eight weeks, and I was just querying what the hell’s going on with mine?

But I-, it says on there, ‘try something,’ so I presume that mine-, according to the physiotherapist I had a full knee replacement, not part – full, so therefore, he said, “It’s going to take you longer anyway”.

So that’s why they’re saying, “Well, don’t worry about how long it takes.” Well, it’s all very well but I’m going potty.

And then what I did have was actually on my discharge paper called “Complex total knee replacement.” And it’s taken me almost till now to find out why it was classed as total. And apparently the answer is that it was so badly affected by the arthritis that you know it was quite a job for them, if you know what I mean. It was, it was complex because of all the damage that the arthritis had done.

I’m a little bit disappointed. It, you know, I can’t say in myself because I feel I’ve done everything I’ve been told to do, if you see what I mean.

But my friend, a friend of mine has had hers done I think it was January, yes it was January, and you know she’s, I can’t tell you exactly, I probably could if I struggled, but you know so many weeks on she was doing this and doing that, and stopping the pain relief entirely, and back driving and you know and so on.

So you know I do feel a bit disappointed, but I do also know that it’s different for everybody. I’m older than her, for a start. Mine was in such a ghastly state because it had been so long before it actually got operated on, there’s this thing about it being a complex total, you know, all that stuff.

So, you know I’m not, I’m not upset, just a bit disappointed that it hasn’t moved on a bit more.

The physiotherapist came out and that was-, after three weeks, that was the first time I’d seen any exercises to do.

So, I was doing the exercises and then various things happened. Then they had the rehab and they walked me out the house and round to there, but with my heart condition I was getting a bit out of breath, but no one’s doing anything about that, anyway, but I was taking furosemide for a while.

Anyway, then I had-, my legs killed me, so they changed the medication. So, I had a Longtec for 12 hours and I had-, I could have up to four five milligrams of Shortec in between if and when the pain reared its head.

So, I had agony from the knee down on one-, both knees, from your knees down once, and then I got over that, and then - the knees-, at the back of my legs were killing me and I didn’t know where to put myself.

Anyway the physiotherapist came and the GP told me I should walk up and down and do more exercises. The physiotherapist came and said because you had 30% weight on your knees and 60% on your frame, and you moved over to 30% on the frame and 60% on your knee, you’ve actually done too much on your knees, it was too much, so you’ve got to rest your knees and just go slowly at it, so that improved.

And then my anxiety state came back and I can’t get anything out the GP for that, and then I had-, as I said I had low-, very low blood pressure. They told me to drink loads of water, and when I went to the hospital to the acute triage on Wednesday of last week, they told me that was utterly wrong and because that’s why I’ve got such a-, out of breath, it’s because I had too much liquid, too much water.

So, I might have to take water tablets at a higher strength, or more often. And water tablets, I can only explain to you that if you take the water tablet in the morning, I can’t even get as far as the front door without wanting to go loo, so it’s terrible. And when I came back from triage on Wednesday, they made me take one in triage and I had to stop four times in the 11 miles back from the hospital to my house, so, it was a nightmare to say the least.

I’ve now got legs that ache because of course they’re swollen, and so we’re trying to get it down so I’m under the acute triage and I go back there on Thursday.

I am walking better and I am-, I can walk out to the front of my house, but I haven’t started to drive because I don’t want to drive while I’ve got these particular-, what they called, you know, these particular drugs, these opiates?

So, my sister, if I’ve got to go anywhere, she takes me. Her employer has been brilliant, and for the first few weeks I was home, she was home altogether, she’s been going back to work mornings only and she works from home in the afternoons, and she’s doing that and she’s going to do that-, she’s put in for her retirement, which will be [in] April.

But she’s been absolutely marvellous, because there are nights when I don’t sleep, I can’t get comfortable, my legs are like-, oh, they’re fidgety, they just won’t calm down and every now and again I get so anxiety status I just can’t lay down and sleep, whatever. Because it’s just-, I just-, oh, my brain does overtime.

When I think I’m getting better, something else comes along and throws me off beam.

I think it’s slower because I anticipated being in and out of this in eight weeks, and it didn’t happen, and if I’d have known that it was going to be triple whatever they call it, then I would have known I would have been longer.

The physiotherapist tells me, “Well, everybody’s different,” and, you know, so on? Yeah, accepted, but I think that people ought to have been a bit more realistic. I just felt that I was abandoned by the NHS because the physiotherapist didn’t come, the so-called urgent community response when you come home didn’t exist, it weren’t there.

I know they’re in difficulties, and I know they’re under pressure, but if you come out of hospital-, you know, my sister, if she hadn’t been working for [a hospice] - what about those other people?

I mean she works for [a hospice] so the nurses helped her move the lounge around and get the bed ready and put everything in place.

Well, it was the back before that was always the issue, where I got the pain, between my hips, so no that’s more or less the same.

But obviously the patches do obviously take some of the pain away, but it’s primarily taken the pain off my back, but that is what I have to stop now, I can't-, I find it very difficult standing, like you stand at the kitchen sink, or I stand do any ironing, I can't stand there too long because the pain comes through and I have to, you know, sit down, and then stand up and carry on again. And it’s like that walking, and I still sort of walk okay, well I walk quite normally, but then I get this pain in my back so bad, I just stop for a while, and it goes off and then I carry on again.

I was very confident with the surgeon that I had and he was brilliant.

I did write a letter and thank everyone in the department. I mean when I phoned up to do the change of appointment, you know you could get through to the secretary, the bookings clerk, you could get through to everybody, they were really good

So I wasn’t, and the whole atmosphere at the hospital was just lovely. I think the staff were smiling, they’re relaxed, it’s really nice, it’s a fantastic hospital.

It’s nice for them to have the positive feedback as well, isn’t it? And to sort of know the success stories.

Well, I think so, it’s, you know they train for so long and they’re gifted people, and you don’t see them when you’re recovered kind of thing. I saw the head physiotherapist but I wouldn’t have seen the surgeon, but you know they make such a difference to people’s lives, it’s incredible.

Well, I think in the long run, I think I'm glad that-, because although I might have got it-, it would have been nice to have got it done sooner, yes, but on the other hand, I don't think I would have had the option, if I hadn't gone privately. I wouldn’t have had the option of the bespoke knee, of the robotic assistant operation, and that’s been such a good outcome that in the long run it turned out for the better.

Can you feel a difference between your knees?

I can in the way that they bend, yes. The new knee is so much better, it bends further, and that’s without me doing many exercises. So-, because, you know, I couldn’t-, I was trying to do exercises for my back rather than for my knee, so no, it was-, it’s really, really, they've done a brilliant job on this knee, I'm very, very happy with it.

Good, yeah.

Yes.

In fact, I wouldn’t know it wasn’t my own knee.

If I wanted extra pain stuff, I only had to ask and I got it, so everything before the operations was good, it’s just anything following up since—seems to have fallen by the wayside or something, yeah. It’s such a shame.

With being, having the surgery and then going home the next, the same day, so not even an—

Yes.

—overnight stay? How—

I know that was awful, it was horrendous—

Was that something that you had been expecting, or was that a surprise?

No, I wasn’t expecting that at all, no, no. They said, “Pack a bag, bring an overnight bag,” you know? And I thought, ‘well, overnight?’ I mean I was in for four days last time, so I packed a bigger bag than just an overnight bag, but I didn’t even have to use anything because I was sent home that night; I couldn’t believe it.

How did you cope once you got home? Because obviously you’ve just had a major surgery and—

Exactly.

—you’ve lived alone and yeah.

It was awful, it was awful, love; I felt very alone.

If I had backup, it’s nice to be able to talk to somebody, but you see I’ve got no backup, no backup at all, that’s what I find worse than anything really, if you know what I mean?

If only a physio-, if only I could ring a physio and say, ‘is this-,’ you know, ‘is this right, is this expected?’ You know? Or if there’s anything else I can do, is there any more exercises, different than what I’ve already got that I can be doing? That would help, you know?

Because I do-, I love exercising and I don’t mind what I do: all I’m doing is following the ones that were given to me immediately after the operation, you know? And I just keep them up, and as I said I’ve-, I’ve even kept them up on my other knee from all that time ago, I do them every day, it’s the first thing I do when I get out of bed is do my exercises with both legs, and my arms, and my shoulders – I keep them up.

And in terms of your overall health and the overall impact of the knee surgery, do you feel it was the right decision for you?

Yes, definitely.

My only one criticism is the fact all through my life, and there’s thousands upon thousands of people that are exactly the same as me, is that it should be done earlier because mine could have been done 10 years earlier, but their argument is they say, “Well, the knee doesn't-, you might have to have another replacement in 10 years’ time.”

Well, I look at it the fact that I'm nearly 80, I'd have been far happier having it from 60 to 70, comfortable life, when I'd got more to do and everything like that, than I am now.

After the first X-ray.

As soon as you've got rheumatoid arthritis in your knee, it’s only degeneration that follows, it’s not- it doesn't recover.

You-, all they do is-, they're kicking the can down the road. And that’s exactly what’s happening.

So as soon as anybody gets spotted, get them in the queue, and give them a knee, and you could save a whole load of hassle, because they're not getting older. I guess it’s the fact that they-, what they want to do is time it, so they love giving 70-year-olds a knee because they know that they're going to last the duration. They're not going to need two knees, because you-, [chuckles] because you're at the end of the branch.

So 70’s about the right time if you're going to give somebody a knee, I think that’s what they think about it. Because they're so expensive, man - that’s the problem; it’s a massive amount of money.

I hope the outcome is something that you know clinicians can look at it and say something. And that is the point I want to make: an earlier prognosis would’ve benefited me immensely, just to say, “Now this guy will be goofed by the time he gets to 70, so we can fix him when he’s 65.” And I would’ve had five years of, you know, being able to participate in cycling and other things.

That’s what I really regret, that I've just had to limp on and take all these tablets, get fat, drink too much, and put, and now sit thinking.

Cos I get out of breath more easily than I ever did, you know?  Just I’m, even just noticing just walking around in the garden, I feel like I’m out of breath, it’s my heart not working as it used to. And that’s a major concern.