Toby
Toby was diagnosed with rheumatoid arthritis 30 years ago, which later developed into osteoarthritis that affected both knees. He tries to keep active but movement is often very painful. Toby has also had heart surgeries and a hip replacement. At Toby’s appointment, he was told that both knees require surgery but that he would likely wait a long time for these surgeries. He has now had a total joint replacement on his right knee, which went well, and is waiting for the same surgery on his left knee.
Toby is a retired construction projects manager and engineer. He is married, and has four children (two adult children and two children who died). His ethnicity is White British.
More about me...
Toby was diagnosed with rheumatoid arthritis 30 years ago, which later developed into osteoarthritis. He has had a number of heart surgeries (angioplasties and stents) and a hip replacement about 15 years ago. He also has Von willebrand disease (a blood clotting condition). Toby developed problems with both of his knees in recent years. He tries to keep active, but walking, especially on uneven ground, twisting, and getting up out of a chair can be very painful. He sometimes dreads going down steps “because I know it’s going to give me a jolt pain wise”. Occasionally the pain has been so bad that he feels sick. Toby says that the pain and its impact on everyday life “wears you down a bit”.
Rheumatoid arthritis meant that Toby suffered for many years with aches and muscle pains. Doctors often assumed he also had joint pains, which he didn’t at the time. Toby took prednisolone and methotrexate for several years. Although he didn’t experience any side-effects, he felt uncomfortable with taking these medications and slowly cut back to only paracetamol. Toby received steroid injections routinely from a rheumatology specialist, which helped with the pain. Eventually, the rheumatologist suggested a referral to a knee specialist. Toby decided to hold off for a few months, as the Covid-19 pandemic had begun and his wife was shielding.
Before Toby’s appointment with a knee specialist, he thought they might decide that his knees were not “bad enough” yet, but he expected that replacement surgery would happen eventually. Toby hoped that joint replacement surgery would be arranged as quickly as possible if it was needed, so that he could “get on with my life without my knees being such a problem”. He knew that recovery would be important after a joint replacement and, after his hip replacement, “followed the rules to the letter”.
At Toby’s appointment, the surgeon recommended that both of his knees be replaced. His X-ray scans showed that they were both bone-on-bone with significant deterioration. In the appointment, he didn’t think to mention his bleeding disorder, but in hindsight would have done so. There wasn’t any discussion of alternative treatments, which Toby thought was because his need for the surgery was a “black and white” case. He found the consultant to be “absolutely charming”, and accepted the idea of having surgery.
Because of the backlog on joint replacement operations, Toby expected to wait a long time. The surgeon joked that “I’ll try and get it done before you’re 100 years old.” Toby was unsurprised that he would need to wait, and didn’t feel there was much point chasing up an appointment: “your turn will come round one day eventually”. Toby felt some regret for turning down his rheumatologist’s offer to refer him earlier.
After the appointment about his knees, Toby continued getting steroid injections in his knees and shoulders. He generally tries to limit the number of medications he takes, and sparingly used paracetamol for pain relief. He was also diagnosed with diverticulitis, but says that the doctors “don’t look upon that as a major problem” in his case.
In terms of his pain and reduced mobility, Toby felt that: “you accept it, you live with it but it does change the way you are”. He worried about falling, as he has seen the outcomes of falls in friends his age. Generally, he tries to avoid talking to friends about ageing and health issues, as it can be disheartening. Having ongoing mobility issues made Toby feel like he was “living in a slightly different world”, where getting around was difficult and some activities off limits. Although things like climbing up the stairs have been a “major problem”, Toby held off on using mobility aids. He thought it was best to “plug away as long as you possibly can” to hold onto your balance and mobility.
After a 16 month wait since his appointment to discuss surgery, Toby had a total joint replacement on his right knee. No issues were flagged at his pre-operation appointment, so the surgery was able to proceed. He was given the option between being put under and staying awake, of which he chose to stay awake. Toby felt fine after the surgery, and was “chatting away quite happily” in the recovery room. He stayed in hospital for a few extra days to monitor his Von Willebrand syndrome, thought this didn’t cause any issues.
In his recovery from knee replacement, Toby has taken the physiotherapy exercises very seriously. He was signed off ahead of schedule as his knee was recovering so well. The surgeon echoed this in the follow-up appointment. Toby’s knee can still feel a bit stiff in the mornings or after sitting for a long time, but he is able to walk more normally and it feels much more stable. He is waiting for a date to get his left knee replaced, which he hopes will further help with things like long walks and using stairs. He is concerned about the potential strain on his wife when he gets the left knee replacement, but he figures that “the sooner it’s done the sooner we can put it behind us”.
In Toby’s overall health, he is currently having some issues with back and neck pain. He takes co-codamol and fenbid gel to manage this. He has recently had cataract surgery; though he didn’t like the thought of the operation, it went ahead without any issues. Toby’s doctor has also referred him to a diabetes prevention program, but he decided to stop attending as he couldn’t fully commit the time and energy. Toby’s left knee continues to cause him pain, but having had his other knee replaced has helped his overall quality of life. Toby’s advice to others was that if “your knees aren’t going to get any better”, to have joint replacement surgery. He also emphasised the important of keeping physically fit and sticking to the surgeon’s advice and recovery plan after the operation.
Toby has had rheumatoid arthritis for 30 years which causes “aches and pains” rather than joint pains. More recently he has developed osteoarthritis which has affected his knees.
Toby has had rheumatoid arthritis for 30 years which causes “aches and pains” rather than joint pains. More recently he has developed osteoarthritis which has affected his knees.
I’ve had what was originally prescribed as rheumatoid arthritis for probably 30 years or so.
But strangely enough it developed into osteoarthritis and the signals, whatever they are, of the rheumatoid seemed to perhaps lessen. They say this can happen but I’m not too sure of the medical situation there. But the effect of that is that I suffered for years with aches and pains. It wasn’t so much joint pains, it was just general aches and pains - legs, shoulders that kind of thing. And I took strong medication for many years which eventually after thinking about it and discussions with various consultants, I weaned myself off of that.
But I still, I still have aches and pains.
The knee problems came along in more in recent years.
You know, my legs ached, but the oddest thing was I didn’t have joint problems, and they always found this strange. It was more like my muscles and you know various other parts of my body that sort of ached really badly.
When, when I was walking, I mean my lower legs were dreadfully painful.
And they never really worked out what it was because every time I saw anyone, and they would say to me, “And how are your joints now?” And I would have to politely say, “I have never had a joint problem,” which most medical people find a bit strange, you know.
My joints are even now, apart from my hands are getting a bit stiff, are pretty good, apart from my knees, you know, they’re the main problem at the moment.
Toby walked carefully to avoid falling. When using stairs, he was consciously lifting his foot.
Toby walked carefully to avoid falling. When using stairs, he was consciously lifting his foot.
Even walking the dog around the house at night I have to walk carefully because I turned quickly on one occasion - he was going one way and I was going the other - and I fell flat on the concrete slabs.
I went down so quick that I was there before I even realised I was going down and I, I badly grazed my arm and it just happened turning, you know?
You seem to trip very easily when you’re older and sometimes on steps you - even going up steps you can almost not quite lift your foot. Although they’re only about seven or eight inches, which is a standard tread or standard rise on steps you can actually just catch your toe by not lifting your foot high enough and going down.
You absolutely have to make sure you’re stepping down properly. It’s quite a little thing really and if you don’t take care, you will definitely go down.
Toby has lived with rheumatoid arthritis and osteoarthritis for a long time. He hoped knee replacement surgery will fix some of the "pain on pain."
Toby has lived with rheumatoid arthritis and osteoarthritis for a long time. He hoped knee replacement surgery will fix some of the "pain on pain."
I really would just like to be able to get on with my life without my knees being such a problem.
I’d like the pain removed by whatever means they can find. So that I can walk more, and I’m very, very active you know, within the limitations of what I can do, knee-wise and that. I’d just like the pain removed, in short terms.
Whatever that takes.
I’ve been in pain with arthritis and I’ve accepted that for 30 years I guess, and when something like the knees cause problems - which is some considerable time now - it’s pain on pain and people can stick all kinds of pain really but it’s just, I think it wears you down really.
And I simply wish that it could be fixed fairly soon.
Because you accept it, you live with it but it does change the way you are.
And the pain is like that - on top of the general pain I get from the arthritis osteoarthritis these knee pains, the knee pains are fixable, the arthritis isn’t. And so, because they’re fixable it would be a tremendous help if I could get them fixed, you know?
Toby says the aches and pains wore him down a bit. It was hard to be “happy go lucky” because every movement was a reminder of the problem.
Toby says the aches and pains wore him down a bit. It was hard to be “happy go lucky” because every movement was a reminder of the problem.
But I think the aches and pains affect your nature, wears you down a bit, because it’s constantly there.
I think that’s just absolutely inevitable because there isn’t any time during the day that it doesn’t flip into your mind, you know, and you get a physical - When I get up out of this chair in a minute, my knees are going to remind me that they’re a problem.
And so, I think you know with the best will in the world, it’s difficult to be happy go lucky all the time.
I mean you keep going because that’s what human beings do, but it’s absolutely bound to have an effect on you emotionally.
Toby was referred to a knee team by a rheumatologist who gave him steroid injections for rheumatoid arthritis.
Toby was referred to a knee team by a rheumatologist who gave him steroid injections for rheumatoid arthritis.
We started talking about it I would say possibly 18 months to two years ago.
And it got progressively worse.
And the doctor I was telling you about, she’s a very nice lady, she said to me probably about nine months ago, maybe a year, “If you want me to refer you to the knee team I will.” And I said, “Well you know we’re in the middle of a pandemic, or at least the pandemic’s started, so I don’t really want to go into that sort of situation,” ‘cos my wife was shielded.
And, you know, at my age with a few medical problems I’m at risk, so I said, “well I’d like to do it at some stage but I don’t think this is the right time”.
And then I contacted her more recently and said my knees are such a problem that yes, I would like you to refer me to the knee team.
And so, she then referred me. And then out of the blue six months later she wrote a letter to the knee team saying I referred [participant’s name] some time ago and I note that he is yet to appear on the list and she was quite, you know she was quite unhappy about it.
And I was amazed that she’d actually picked up that I hadn’t appeared on the list because it’s not her job if you know what I mean? The knee team is one department, the Orthopaedics’ another.
But she had noted that I hadn’t appeared on the list. But it’s my fault entirely that I didn’t - that the whole thing didn’t get going a bit earlier.
Toby believed if he started to use a stick, he might lose the little bit of balance he’s got left.
Toby believed if he started to use a stick, he might lose the little bit of balance he’s got left.
I’ve got a number of very nice walking sticks downstairs just inside the door. I’ve never used one - perhaps that will come one day, don’t know.
But I feel that when you, let’s go back a bit - if you decide that you’re not very well and you sit in an easy chair and you’re saying, "I can’t do this and I can’t do that and I can’t do something else," that’s- that to me is progressive and it’s best to plug away as long as you possibly can.
And if I take to a walking stick possibly then I’ll take to two walking sticks, and so on and so forth,
I can manage now - albeit that it’s painful. There’s the odd occasion when I’m walking through the woods when I think, 'oh perhaps a stick in my hand would help,' but I can still manage and I shall continue to manage for as long as I can.
Because I think it’s the best way really - I believe if you start leaning on a stick you might lose the little bit of balance you’ve got left.
Toby’s approach to knee replacement surgery is if it needs to be fixed then he’ll get it done. He puts himself in the hands of the surgical team and trusts they will do whatever is necessary.
Toby’s approach to knee replacement surgery is if it needs to be fixed then he’ll get it done. He puts himself in the hands of the surgical team and trusts they will do whatever is necessary.
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.
Toby phoned the team at 3 months and at 6 months to see if there had been any progress with getting a surgery date.
Toby phoned the team at 3 months and at 6 months to see if there had been any progress with getting a surgery date.
It’s a fairly routine sort of situation, something they’re dealing with all day every day and nothing unique about my knees really for people my age.
And so, obviously, I asked - I didn’t bother him too much about what when and why - but I said “I’m bound to ask the question when do you feel you can operate on my knees?” And he said “Well, the best guarantee I can give you at the moment is I’ll try and get it done before you’re a hundred years old.”
And the nurse fell about laughing and I, you know, I mean to be quite honest even my subsequent calls to them, just you know, I don’t pester them every day there’s no point, we all know the situation. But I did - I guess I asked the question after three months and I asked the question after about six months, something like that. And they have absolutely no idea at this moment in time when my knee operation could take place.
And I didn’t pursue it or pressurise them in any way, there’s simply no point because you know, I think we have to recognise that we’re just a name to them. You know, your turn will come round one day, eventually.
Yes, you don’t actually speak to the consultant of course, you speak to the appointment secretary and my guess is they’re being bombarded by calls because the list is enormous now I, I do know that.
And she was quite reasonable but fairly abrupt on the last occasion I spoke to her - “We can’t, we cannot tell you when you’ll be seen you’re in the list you will be contacted you know, when we can provide you with an appointment but it won’t be for some considerable time and I can’t give you a date at the moment.”
Toby says it’s very important to look after his general health and tone up his knee through exercise while waiting for knee surgery.
Toby says it’s very important to look after his general health and tone up his knee through exercise while waiting for knee surgery.
Just walking on the level is a good thing. Staying fit generally is I think that’s ultra-important with anything - if you possibly can.
And we eat excellent food, and all that sort of thing, so you know, we eat well.
Look after your general health so that’s an absolute must isn’t it? And exercise if you can. And by exercise, I mean walking ideally.
Yes swimming - swimming apparently is good for you. Because the water takes your weight, you know?
I’ve been told to walk and you know get as fit as I possibly can, so that, you know-
And because the knee isn’t very good you can sit in a chair and sort of say, “Oh I’m not doing anything cos my knee hurts.” You know that’s an extreme sort of case, but in actual fact the thing is - you should keep going.
And get it toned up so that it’s, it’s as ready as it - well at 86 it’s about as good as it could be at 86 - for the op.
After surgery Toby stayed in hospital for two days for monitoring because he had a condition that can cause post-operative bleeding.
After surgery Toby stayed in hospital for two days for monitoring because he had a condition that can cause post-operative bleeding.
Oh, I thought that was fantastic. The anaesthetist asked me how I felt about being unconscious or, you know, if he put me out or what, what would I prefer. And I said the minimum required - just to control the pain - because I’ve never really liked being unconscious. I’ve always avoided it.
So, he got it a hundred percent right, I was awake throughout, quite amazing operation, what they do. And I was totally lucid as they wheeled me back to the recovery room, and I thought it was absolutely first class.
I was in for about two, three days I think because I have an obscure blood problem. It’s not anything that amazing - it’s just that the platelets don’t behave properly so I can have post operation bleeding.
Toby was discharged from the physiotherapist and the surgeon six weeks after his total knee replacement surgery.
Toby was discharged from the physiotherapist and the surgeon six weeks after his total knee replacement surgery.
So that was then six sessions, six weeks, and she signed me off on the fifth week because with the exercises I’d been doing at home my knee was as good as it could possibly be.
It had gone well beyond 90 degrees, and I could do all the exercises and walk without crutches and all that kind of thing. And then of course roundabout the same time I had the post-op session with the people in [hospital] surgeons.
And they said exactly the same, he walked in the door, checked my knee and he said, “Stand up, do this, do that.” He said, “It doesn’t get any better than that.” And he just signed me off as well.
So, you know I guess it went quite well really.
And that, I have a feeling it’s all about listening to what they say to you.
Six months on from his knee replacement Toby just had stiffness after sitting or lying. He is expecting this to improve as the muscles become more stable.
Six months on from his knee replacement Toby just had stiffness after sitting or lying. He is expecting this to improve as the muscles become more stable.
How do you feel six months in?
It just stiffens up a bit, you know, in the morning when you get up, or if you get up at night. It’s best to sort of stand up and then flex it a bit. Because it stiffens up, and I think that’s what it’s all about for the year.
It’s like - I imagine it’s the muscles and everything just really stabilising themselves
I mean at the moment now I can walk around perfectly normal, but if you sit down for a while it stiffens up and if you lie down for a while it stiffens up.
How is the pain and the mobility in the knee at the moment - how does that compare to what it was like before the replacement joint?
Oh, there’s very little pain, you know, it’s basically - it’s sorted.
Toby says follow the guidance post-surgery. It will make a difference to your recovery.
Toby says follow the guidance post-surgery. It will make a difference to your recovery.
Listen to what they say to you about getting yourself ready for the op, you know. It’s important to get physically fit before the op if you can, you know what, so that the muscles are about as good as they can be.
And above all listen to everything they say to you about what you do post-op.
I think that is above everything else that’s important because they do it all the time. I mean they’re churning people out each and every day, and they know what happens when people don’t take the advice.
And the results. A lot of people simply think, “Oh I feel absolutely fine, you know.”
And as I said before these joints when they - if people don’t take notice and they manage to dislocate their hip or they mess up their knee or something like that, or not do the exercises for your knee, can’t be bothered, you know? Then they don’t get the result, or you know they get other problems.