Sue

Age at interview: 76

Brief Outline:

Sue has had a partial left knee and total right hip replacement, and is now experiencing problems with both her knees. She had wanted to ensure that she is on the surgery waiting list now rather than delaying it until she is at her “wit’s end”. At her appointment, Sue was told that her knees did not show as much damage as expected. She was referred on for an MRI, which she is now waiting to discuss the results of.

Background:

Sue is a retired primary school teacher. She is married, and has three grown-up children and seven grandchildren. Her ethnicity is White British.

More about me...

Sue is currently having problems with her knees and feels they “are needing some care”. She also has problems with her hips, and finds that her hips and knees on both sides have been affected by problems with each another, for example in terms of “the knock-on effect of having walked differently”. In 2013, Sue had a partial knee replacement on her left side in 2013 as part of a clinical trial. Then, in 2020, she had her right hip replaced, after being given the choice about whether to operate on the right hip or knee. She opted for her hip in the hope that she would be more stable and less likely to trip, and that it might resolve the problems with her knees. Sue had cellulitis after her hip operation in November 2020 and doesn’t know if some ongoing health concerns are related to the infection she had. Sue is happy with the outcome of the hip replacement, but thinks it highlighted “the fact that my knee does need doing” still. She also has varicose eczema, which causes her legs to tingle permanently and can make her more aware of her joint problems. She takes medication for hypertension and asthma.

Sue finds that walking downhill, on steep stairs or on uneven ground is particularly painful with her knees. Sue thinks she might benefit from using a walking stick for stability but explains, “I think my age is such that I just don’t want to feel even more like an old lady”. She remembers her father calling his “a walker’s stick rather than a walking stick”, and she keeps one in the car when going out and about. After her partial knee replacement, Sue used crutches for quite a long time afterwards, whereas her recovery from her hip operation was much quicker. Being able to drive is a concern for Sue because she lives in a rural area and needs to be able to get around. She feels she has missed out on a lot because of the problems with her hips and knees, including being able to get on the floor to play with her grandchildren. Sue thinks that Covid-19 and the lockdowns, with being “stuck indoors a lot”, have had an impact too: “one copes with things less well, I think”.

When Sue saw her GP recently about problems with her right knee, she had some x-rays taken and was put in touch with a physiotherapist. Because she had already had physiotherapy sessions before and after her hip operation, the physiotherapy team “knew the background” with her knee problems. They agreed that she could be referred straight onto the specialist joint team and that surgery would be likely. Sue had previously had steroid injections for her hip joint which helped, but she has not been offered these for her knees. She feels fortunate that she is not always in constant pain with her knees, and says that she’s currently in a “period where it’s not quite as uncomfortable as it has been”. However, she wants to ensure that she is on the waiting list now rather than delaying it until she is at her “wit’s end”.

Going into her appointment, Sue expected that knee surgery would be the next step but wasn’t sure if a partial or total replacement would be offered. She thought that if she also needed surgery on her left knee (which has a partial replacement) then it would be a total replacement. She expected to discuss her options and “a plan of the way forward”, though she anticipated that it might be a long wait.

During her appointment, Sue’s specialist identified that she has a spur of bone in her left knee but not as much wear and tear as expected. She thought that a procedure to clean out the spur would be recommended, but this didn’t come up. Sue felt “surprised” that it was recommended that she might need to have her left hip replaced rather than her knee. She was especially struck that this was “almost a throwaway comment”, though she does think it could be a good idea as her previous hip replacement helped with her left knee. Sue was referred on for MRIs of both knees, which took place three months later. She is still waiting on the follow-up discussion of the results five months later.

Since her appointment, Sue’s knee issues have remained the same. She had expected her knee to be a “downward spiral”, but other health issues have been more troublesome. Sue has been having issues with persistent symptoms following Covid-19 including fatigue and brain fog. This has been hard on her mental health, as have changes to her husband’s health status and being more isolated during the Covid-19 lockdowns. Sue’s varicose eczema has also been particularly troublesome lately, which is at times difficult to distinguish from her knee pain.

Sue thinks that knee surgery is still an option but she regrets not asking more about the timeline and worries that she may be waiting for over a year. She is aware of friends in their 90s who she doubts will have knee surgery because of their age, and worries recovery will get harder as she gets older. Although Sue is able to afford private care, she would prefer not to spend the money if possible. She acknowledges that the waiting lists are long and that there are people worse off, which makes her feel like she “can’t push” to be seen earlier. Sue advises specialist to really listen to their patients and to take their pain a “little bit more seriously”. 

Sue thought her swollen and painful knees were because she needed a hip replacement. But her knee needed fixing too.

Yes, I had, back in 2013, I had half a knee replacement. And I took part, at the time in the study.

But since then, I had a hip operation - replacement hip - back in November last year.

At the time, I was having considerable problems with my hip and my right hip, my right knee, and it was difficult to know which was worse, to be honest. But I think and I was asked which I needed doing first, which I felt I needed to, to have done first because they would both need doing.

And my feeling was that, for stability and feeling I could actually, yes, feel that I was being stable and not tripping or losing, suddenly losing it’s a, it’s a bit difficult to explain. But the more- it is more for stability.

I felt that the hip would be better, and I know that, in fact, they would prefer to do the hip before a knee.

And that’s been fine. The hip's been very good for a long time. I have had, more recently, some problems with the hip but I think it’s more to do with the fact that my knee does need doing and also now, I’ve discovered my other knee also needs doing.

Okay.

I had a phone call about my left knee which was my half-knee replacement. It was back in November last year. It was one of these research students I think who just telephoned and asked me about how I was getting on and how pleased I was with it and so forth.

I said, “It’s wonderful, I would recommend getting it done. It was brilliant.” You know, it’s made such a big difference, really to my lifetime. And he said, “So you’re not having any problems now?” and I said, “Oh yes, I am. I’m actually, it’s swollen. It’s painful.” But as I was waiting for the hip operation which was due to take place in about a week after the interview I had. I felt that it was probably because I was walking differently, doing everything else differently, so it was putting extra pressure on the knee.

But I didn't realise until after I’d had the knee done and after I’d had the hip done, I, I was that actually I was having problems with my knee. And it wasn’t just that. So, at the moment, I’ve got two knees that are needing some care. I, and I think that probably that is why I was having a certain amount of problems with the hip.

But yeah, I’ve also been told that my other hip is on its way as well.

I think when I have the half-knee done, to start with, I was told whole knee, half-knee, and hips are on the way. So [laughs] you know, that was a sort of overall feelings that, at the time and that was 13 years back, so, you know, I’ve not done too badly. Well, 14 years I suppose, because of the wait to have it done.

Sue felt lucky that her pain was not constant. Her knee pain varied depending on what she had been doing.

I think I’m pretty lucky in many ways, because I know that a lot of people have a considerable amount of pain and mine does vary a bit. And at the moment I’m going through a period when it’s not quite as uncomfortable as it has been. But, you know, I know it’s, it’s there.

I’m aware of my knees [laughs] you know? In fact, I mean, the knees do vary a bit. Some days, it’s worse than others, some days I’m having more problems from the hip - the hip that was done - but that’s more to do with when I lie on it in a particular way. One day it’s absolutely fine, another day it’s not.

But I think it must depend very much on what I’ve been doing. How I’ve been using my legs, and, you know, I play bowls. It’s something I took up when I had to stop playing badminton because of sort of high impact. You know, it was only social badminton. It was still too much for my knees - so ages back I stopped that and more recently I suppose four and a half years, five years ago, maybe, I started playing bowls, which I’d always thought of old man’s game.

My grandfather sort of play it, and now I always think that, but actually I thoroughly enjoyed it. I’m not terribly good, but I joined the bowl’s club, done something completely different and it does mean that you are doing a different type of exercise. But you are bending. You’re walking. You’re, you know, doing a lot of that sort of exercise.

I’m finding walking on a flat is normally okay. Up or downhill is not good, particularly downhill. But I sometimes have problems with the air - with the asthma - walking uphill as well. Walking on a very uneven ground, over rocky ground, stones or across ploughed fields or something like that is not good. It can be very uncomfortable.

Actually, downstairs is not brilliant either, to be honest. Some days I can walk upstairs straight and it’s no problem.

Sue had varicose eczema which made her legs tingle all the time and swell. It made the problems with her knees worse.

Yes, something called varicose eczema which means that my legs tingle all the time. I don’t know if you know anything about it, but it drives you potty, to be honest. Worse at night, but it’s there all the time, which of course, then makes the other problems that you have with the knee - sort of exacerbates, really.

And you mentioned that the eczema in particular can exacerbate problems with your knees, or sort of impact on the other health conditions. Do you mind saying a bit more about that, please?

Yes, it’s varicose eczema, which I’d never even heard of. To me eczema is a sort of skitch- an itchy skin complaint. But this is quite the same. I do have varicose veins. And I’m told it’s like having leaky veins.

I sort of have read up on it, but [laughs] it can make funny shape to your legs as well. It’s not too bad at the moment. But they do say something like upside down champagne bottles [laughs] which is a little bit weird.

But yes, just can’t even think how many years I’ve had that now. That’s a lot more recent, a lot more recent. And yes, it’s just a constant itch. It’s not a question of itching because if it’s itch you want to scratch. But this doesn't actually feel quite like that. It is tingling the whole time, which is like an itch, I suppose.

I don’t think they particularly interact, It’s just that because you’re constantly having this feeling in the legs, you know. It’s, it’s just means that it intensifies everything. If you like.

I’m aware of my legs. I’m aware of my knees [laughs] you know? In fact, I mean, the knees do vary a bit. Some days, it’s worse than others some days I’m having more problems from the hip - the hip that was done - but that’s more to do with when I lie on it in a particular way. One day it’s absolutely fine, another day it’s not.

But I, I think it must depend very much on what I’ve been doing. How I’ve been using my legs, and you know, I play bowls. It’s something I took up when I had to stop playing badminton because of sort of high impact. You know, it was only social badminton. It was still too much for my knees.

And it’s difficult, some days I’m very aware of my knees, sometimes I feel that they’re huge, they're probably not half as huge as I feel- that they feel that way, but sometimes they do feel very large. But as I said before, I have this varicose eczema which also has an impact on my legs, so it’s difficult sometimes to separate the discomfort of one and the other.

However, at night sometimes I’m lying in bed and I’m aware of a pain going up into my left buttock, or a pain in my knees, which always seems peculiar, but I know it’s what happened before I had previous ops.

It seems odd that when you're lying still, and you're not moving around, that that pain is there. But I believe that’s quite normal.

 

Sue said inside she is still “the active person I want to be” but when she saw herself in a shop window she didn’t recognise herself.

Well, I think it was, it was getting more and more uncomfortable. More and more painful. There were lots of things I couldn't do and I had to stop doing as I say, badminton or you know, walks and things.

I mean, I can walk, you know, I can walk, but it’s, it’s difficult.

It would be nice to just feel you can walk at a family pace [laughs]. Whether or not I’ll be able to do that without them having to make concessions for me all the time, I don't know.

I really don’t know. I think it’s a bit older I suppose it’s different anyway. But I don’t feel any different inside me, you know?

Yeah, it’s such a shock when I look in the mirror - and shocked when I walk past [laughs] a shop window and I think ‘my god, who’s that awful old woman there?’ But you know, it’s sort of inside me and I’m still like the active person that I want to be.

So, yeah, it’s but that’s just getting older [laughs].

Sue was put on the surgery waiting list after speaking to her GP. She knew from having previous joint surgeries that it could take a while to be seen.

But I already knew that I needed a knee. And they told me that, you know, “Yes, you need a knee after the hip”. And I’m thinking that you know, my husband is not doing as much driving as he was. You know, maybe I’m going to need to take on a lot more on that side.

And really, leaving it a long time would perhaps be foolish. I feel I’m young enough, if you like [laughs] still to be able to heal. I don’t want to get to the stage where I’m really at my wits end before something is done about it.

I have a feeling it’s going to be quite some time and therefore I feel it’s right to go ahead now to make sure that I can get on a list however long it is, it happens to be.

At least I’ve got something to look forward to if you like, you know? I know that something will be done. I don’t really want to wait until I’m so desperate that I can’t move around in which case if you go then, and you still have to wait which you - one waits for a long time anyway.

I think with my knee originally, I waited for a year and a half in the end. I think from my first saying, “I think I’ve got a problem.” In fact, I’m not sure it wasn’t longer than that. I think it’s nearly two years, [from] the first talk to the GP. I don’t much feel that, you know, I’ve got another two years on top of everything.

So, if I had the discussion now, they’d say, 'we’ll put you on a list, but you’re a long way off,' then at least I feel I’m on a list and at some stage something will be done and I don’t have to wait till I’m literally at my wit’s end beforehand - before, you know, it gets taken seriously.

I still want to be able to go and enjoy time with family. We had a family get together, not last weekend, the weekend before, post-Christmas family get together, post-2020 Christmas. It’s the first time- the family got together.

Oh gosh, so it’s nearly the next one [laughs].

We did walk around and do, you know, we went on walks and they were very patient waiting for me [laughs]. And taking easier routes and things like that. But you know, at least at the moment I can do that, but it’s not gonna be that long before I’m gonna find that is impossible. And I know that I can’t do it the same as them.

Sue says it’s difficult for GPs to get to know you when they change frequently in the practice.

There’s been a number of changes of doctors, so that the doctor I’d seen before left, and it was another doctor, and then another doctor.

We’ve had a lot of changes—so it’s difficult. People don’t really know- don’t know- they don’t get to know you—and you don’t have everything on a list.

I mean I know it’s on their computer, but whether or not they can really get everything just in those seconds before you go into the appointment, I sort of have some doubt to be honest.

Sue used a ‘walker’s stick’ when she had her hip replaced, but was reluctant to use it for her knee pain because she didn’t “want to feel even more like an old lady.”

Before I had the hip done, I was using a stick for quite a while. And afterwards, of course, for a while.

But then, you know, miracle, I was fine and I didn't need a stick.

Well, maybe I would be better using it. People have said to me, “Why don’t you use it, Sue?” But it’s you know; I think my age is such that I just don’t want to feel even more like an old lady. [Laughs]

So I know the people in the physio department have always said, “Oh, just use the stick.” You know?  And I did have ‘a walker’s stick’ rather than a walking stick, is what my father always called it. There was his, he said he didn't need a stick but he’d have a walker’s stick. It was a walker’s stick [laughs].

So yes, I used his stick which was quite useful for me. I don’t - I always carry it, in the car if I need it, in case when I’m out. But I don’t at the moment use it.

Over seven months, Sue had a few NHS physiotherapy sessions and exercised at home. With limited benefits, she asked to be referred to a knee surgeon.

The GP was quite good, and they knew that I’d had a problem before with my hip, my knee, my half knee, and I mean he did say, “Yes, I think we’ll refer you.” But of course I didn’t get referred to the [hospital], I mean this is a long time back now, I got referred to [intermediary organisation] which are a company that deal with the physio side.

So he- the GP - said he was referring to the [hospital]. But it never got to the [hospital], it just got to [intermediary organisation] which is the next step.

And then for something like seven months I was- I’d had an occasional visit to the physio, and they would give me a few different moves to sort of practise at home, but the appointments were quite short, and more or less you're told what to do, rather more than them watching how you do it because their time is so limited.

And eventually- you know, they- because I was told at that point by the physio, there’s a possibility you can work with this, have physio, and then learn to live with the pain.

And I’d said that I thought, yeah, I was happy to give it a go, I mean, I was more than happy to try, but I did feel that if it was bone on bone rubbing on- and so forth, that it was very difficult then to say, ‘you've got to learn to live with that pain and that you could find your way to living a normal life without having any surgery.’

And yes, in the end I just had to say to them, “Look, you know, I am doing my exercises, I am doing this, I am still having problems and really I feel that perhaps now I’ve given it a go and maybe it might be better to go to the [hospital] to see what they felt.”

And I had to push that a bit, but having had it done with my- the first knee, this is before I had the hip done, and the hip and knee-

Oh, okay, yeah.

—and having had it done with the first knee, I just felt that I needed that.

Sue's GP sent her for an X-ray after she told him about her knee problems. She was then referred for physiotherapy.

I did tell the GP that I’d had - I did have problems and he said - well, I didn't actually see him of course, this was over the telephone -  he said, “I suggest you go along and have some X-rays.”

So, I went to our local X-ray department the following day. I think it was the following day. And they X-rayed both knees and, well, I think if they do one hip, they do both at the same time. So, and from then I had a letter referring me to the physio department.

The guy who actually did the X-ray said, “Oh yes, I can see there’s considerable change in the knees.” And I knew the right knee anyway. He said, “Yes, that knee needs doing, but your left knee is also needing.” And the hip, he told me was fine, and my right hip which was the one that was done, because I was unsure at the time because I was having quite a bit of discomfort from it.

But he told me, at the X-ray, that actually my hip was absolutely fine. But that obviously he couldn't say too much, but it needed a specialist to look at it. An orthopaedic specialist to look at it and then I would be told later. But that I would need something doing.

And, in fact, I got no feedback. I got no message about the results of the X-rays at all. The GP said I’ve considerable, that’s right, he said I have considerable deterioration. The GP said, “You’ve got some deterioration”

Sue would love to be able to sit on the floor, play silly games or kick a football with her grandchildren after knee replacement surgery.

I think the one thing I haven't said, perhaps, is how much I feel I’ve missed by having knee and hip problems. Because, particularly with grandchildren, it’s lovely to be able to, you know, you sit on the floor and you do this and I can’t sit on the floor.

And if I do get down on the floor, which is very, very rare, it’s the most appalling job getting back up again. It’s bad enough trying to get down. But you know, getting back up is extremely difficult to me – very undignified to say the least.

And, you know, it’s those sorts of things that you feel you’d like to be able to do, a lot more with the grandchildren - the eldest is now 10 and so you know, already you’ve gone through the stages that I missed where, you know, you were playing silly games or doing things or, or kicking a football around a field or whatever, which, you know, I’ve missed out on.

I think that’s quite sad. We do lots of other things.

Sue’s surgeon wanted her to have an MRI scan to provide more detailed information before a decision was made about a knee replacement.

Well, he did tell me that I had a spur on my left knee which is where I’ve got a half-knee replacement  -a spur of bone that was possibly causing some problems. And in actual fact it does cause certain problems if it catches, it doesn't happen all the time, but if it catches it is excruciatingly painful, but then only for a few seconds until it sort of rights itself and, you know, things are back to normal.

I thought maybe they would say that they do a sort of clean out of any bits of debris, but having sort of looked they said, “I think we need the MRI scan,” so they can really see what’s going on in better detail. But they did also say there was a slight possibility that maybe it would be better to do my other hip first.

Having had partial knee replacement before, Sue knew what a difference it had made to her quality of life.

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.

Sue prefers to get information about knee replacement surgery “from the experts” than the internet.

So, but afterwards, I mean, I should hopefully have some idea of the way forward, that’s what I’m hoping for is to get an idea, a plan of the way forward.

And then if they say well it’s likely that such and such will happen, or that we would look at doing so and so, then I, you know, they may say you can look online because there’s a good site for whatever.

But I do think you can overdo it. I find looking online can be very helpful. But I also find that unless you really know what you’re looking for, I think you can be putting perhaps too much emphasis on that, and you know, it’s my situation it’s my problem. Maybe not quite the same as everybody else.

It’s certainly- I find it quite useful to look online and, yeah, see other people’s maybe reactions to something can be very good, very helpful. You know, I have done that.

I think probably after that last one - the hip one - yeah, just yeah, probably to just say how long did it take to feel more comfortable or whatever. So, yeah, I suppose from that point of view, yes, I have looked. But when it comes to actually the op itself or what will happen in the op, when I don’t know until I discussed it and got advice from the experts.

Sue prefers to wait until she has information from a healthcare professional rather than looking online because information online might not be relevant to her situation.

Haven't really looked online for that because, to be honest, you can work yourself up into thinking all sorts of things if you really start sort of looking.

I know that I’m waiting for the specialist to tell me what needs doing. I haven't seen the X-rays. I haven't talked through the X-rays you know, at all, so actually not seeing X-rays you’ve got no idea of quite how much deterioration there is within the knee.

And it seems daft to, to just to go online too much and [sighs] and to sort things out, whereas it might not be my situation at all.

No. I know it’s going to need doing and, you know. I know, I’m waiting for advice.

Sue thinks longer physiotherapy sessions would help to make sure you are doing exercises properly.

It’s tricky because I honestly- I do know that, [sighs]  the National Health is under a huge amount of pressure obviously, and it always is - let alone at the moment which is so much worse. So you can’t really say you ought to be seen by somebody earlier, but- [sighs] and maybe it is the way out for a lot of people, just the physio helps.

It obviously helps to keep you going to have the physio. I mean I think it’s probably very important, but maybe a slightly longer period of time with anybody that you see. If you're doing exercises at home, it’s very easy to get them perhaps wrong, that- not make the most of it.

Unless you're doing in front of somebody a number of times, rather than just once, to make sure that you're doing it properly—maybe it’s easy to not make the most of that opportunity.

I suppose that’s where people going privately are probably far better off because they’ll have a longer appointment, and they will be given perhaps rather more detailed instructions, not really walk away with a sheet of paper that is perhaps easier to misinterpret in some ways.

Maybe you suddenly discover, ‘oh gosh, well, I wasn’t actually doing it quite that way even though I thought that’s what it meant.’