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

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.

Have you had anything like leaflets sent to you or given to you at appointments?

Yes, I have. And there are, I haven’t read them all through because I don’t want to know if it’s really bad, you know, if it’s really bad news. I’d rather do it stage by stage, to see what the consultant has to say and then okay, if the consultants says, “Well this is what’s got to be done.” What’s the point about reading about anything else? I’ll then like to mug up about, you know, what is going to happen once I know what is going to happen.

All that does, it just sort of frightens you all the more doesn’t it. But, you know, if the consultant says, “Well this is the stage we’re at,” well then read, read, read about what stage you’re at. ‘Cos actually it, it seems to me pointless reading about something which please God might not happen. All it does is upset you.

Well, what I usually do is I write things, I put them down on a computer sheet. So we had an A4 sheet of questions that we went with.

We made sure this time [husband] actually came in with me because we’d made a mistake at the six-week appointment, in that I thought I was just going into like, you see a nurse sometimes before you see the consultant.

So, I thought it was just for like blood pressure or you know all those things, height weight, blood pressure, blood test, all those things. Anyway it turned out I was actually in for the consultants’ appointment.

So yeah, [husband] came in this time and he’s very good at, like if there’s one question asked, he can see what might be a follow up, if there’s an answer, but it doesn’t give you the whole story, he can pick up on the follow up.

So that’s always reassuring having him in there as well as my prepared sheet of questions. And yes, quite a lot did get answered then. And that was where I finally got the answer to the complex total knee replacement. What that actually meant, the complex.

And some reassurance about the amount of bend and, you know, this thing about everybody is different, and it can be quite a long time before you know it’s where you want it to be, and all of that kind of thing.

When I’ve had face-to-face appointments, they’ve been pretty good. Because it is explained and you are, you do have the opportunity to ask questions. Face-to-face.

Telephone calls aren’t that easy I don’t feel. It’s not easy to explain to a telephone call what’s going on. You can explain it, but it’s not easy to get over how you feel about it.

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.

The Royal Orthopaedic Hospital has got quite a big website with all sorts of information.

Yeah, I looked at that as well, I did look at that, and they’ve got some people who are describing their experiences.

That’s good, yeah.

Yeah, you see there’s one video, a man taking his dog for a walk and he’s limping,—he’s goes to the park and he’s limping quite-, [chuckles]  And then after the operation they showed him again going to the park with the dog and then he was walking, you know, very good, you know.

Yeah, yeah, I think it’s a Royal Orthopaedic video, that is-, their website, yeah, and it’s got all about exercise and things like that, yeah, so—

That’s really helpful, yeah.

Yeah, so if you title it in a certain way, you know, it might catch somebody’s attention, you know.

I have got a friend who's had both her knees done. And she’s absolutely over the moon, ‘cause she’s pain free [laughs].

You know, and she said it is painful after, I did see her afterwards and she said it’s painful, you know, immediately afterwards. But, you know, you expect that when you’ve had-. ‘Cause it’s quite a lengthy scar and, when I had my hip done, it’s quite a lengthy scar and it’s bound to be sore.

But the actual knee itself, the joint itself wasn’t sore, it was actually more the operation site itself rather than the knee.

She’s, she’s over the moon [laughs]. She’s pain free. So, she’s had both, she’s had both of hers done.

Yes, I had one friend who’d had it done a couple of years ago, so I spoke to her about it as well, and she sort of reassured me, though she unfortunately was a bit worse than me because she had actually developed an infection in the knee.

So, she said, “I'm going to tell you that because I'm not going to keep anything back.”  She said, “that only happens, you know, one in-,” I don't know, “I was just very unfortunate,” she said, “that that happened to me.”

So, I was aware that things like this could happen, but it really didn't put me off because again she said once that was all over, she said she’s had a new lease of life as well. So that helped, yeah.

And I was glad that she hadn’t pulled any punches that she told me what could happen.

He gave me loads of leaflets and actually, he gave a little video as well to watch about what happens and that was really good, so I watched that beforehand. Obviously, they didn't go into the whole operation, but that was just to tell you what happens and about other people having it done; it was very interesting.

There was a woman in it who was in the same situation as me because I could see it from when she was told she was going to have the operation, till afterwards, and she was walking up steps, you know? Stone steps near where she lived, and I thought, ‘oh, I'd just love to be able to do that.’ Because I could never do that, and she was practically running up these steps, and that was after she’d had the operation done.

So, when I saw that I thought, ‘I’m definitely going for this, you know, I want to be able to run up stone steps.’

So, they’ll probably have all that written down.

Which is, which’ll be, which’ll be good, I think. Because then you can sometimes you might not take all the information they’ve got to give you, so writing it down on a leaflet or whatever it is, it’s good because they can come home and then you can, you know. I haven’t even - I mean the dentist now when they do extractions, they give you a leaflet.

You know, go home and if you get any bleeding or, wash your mouth, salty water, that sort of thing. You know so, so I hope that the hospital would will have similar information.

You know, if you’re living on your own or if you haven’t got you know, no facilities, downstairs toilet or shower or something like that, or what to do, or what not to do. Be careful of this, for the first few weeks of your, two months, or whatever it is.

So, I hope that all that is not so much they’re telling me verbally, but they just cover the main points and then give you some, say, - look, I should go home and read all this.  Just to say you’re fully aware of everything.

I like to know what’s going on. Because I mean some of the nurses actually said, “Have you got a medical background?” I haven't, but I’m just very, very interested.

The fact that it’s about me, you know?  I can seem to separate the idea that this is me they’re going to deal with and this is what’s going to happen, so I don’t get panicky or anything like that.

I did have someone with my hip diagnosis, but I'd already, you know, spoken to my children; my daughter’s a nurse, so I'd already spoken to her about it before I went in. Ao it’s being prepared so that you know what to ask.

If you haven't got anyone to go with you, then make yourself a list on a piece of paper, or on your phone or something, so that you know the questions that you're concerned about and that you can ask them, because you just forget when you're in there.

Well actually funnily enough a pal of mine actually is having a similar situation, he’s had it, I’m in contact with him, and what was of big help I got a cuff which I, which I used to put around my knee which was an ice pack but it was from, forget the name of them, but it was a big cylinder which you put ice in and then okay you lift it up and the ice then all, you know comes out of a cuff, or a collar, the very cold water comes, iced water comes down the cuff. That really was a great help when I was in pain.

Was that after the surgery or before you had the surgery?

That was before I had the surgery.

Before, yeah.

I’m sorry, after I had the surgery.

Oh okay. Yes.

I actually put, put frozen peas on my knee either general before the op, but then I was told about this cold ice cuff just before I had the op, I mean for what they are they’re very expensive, they’re a hundred pounds each, and when you look at it you think, “Well crikey what the, you know a hundred pounds for that? That’s ridiculous.” And really you, it, for what they are for a hundred pounds you would say crikey that really is so over the top, which I think it is. But on the other hand, from the relief that it gave me it was well worth it.

Was that the [city] team that had told you about that device?

No, it was a friend actually.

It was a friend?

Who’d had a knee op herself.

Oh gosh yes, I’ve- my daughter bought me, thank goodness, because I couldn't afford them, something that I borrow from a friend of mine: when I was complaining that my walking sticks, I have walking sticks, but because of the arthritis in my hands, it was hurting my hands to grip the sticks...

So my friend said, “Oh, try my crutches,” and I said, “What’s the difference in them, you’ve still got to grip the crutch?”  “No, no,” she said, “not mine,” she said, “they’re called elbow crutches.”

I said, “Oh right,” she said, “You just hold with your elbow, you don’t-” you can grip with your hand but you don’t have to, your hand goes underneath a strap. And so she said, “have a go and see what you think.”  So, I did, so I was upright better than with the walking stick, I wasn’t so leaned over and it was much better on my hands.

So, I was telling my daughter about it, I said, “oh,” I said, “I’ve seen the price of them online,” I said, “I can’t afford them,” but I said, “they were-” I could tell the difference immediately.  So then for my next birthday, lo and behold, my present from my daughter was my elbow crutches.

Aww.

So now I go walking with my elbow crutches and I’m more upright, it’s better for my posture, it’s better for my hands, so that’s an improvement.