Petra

Brief Outline:

Petra’s arthritis affects her knees and other parts of her body. She’s had six knee surgeries including partial joint replacements, removals, and total joint replacements, but problems with her knees are ongoing. She is weighing up the risks of having another revision surgery on her right knee and whether she might also need back surgery. Petra worries that if another knee operation doesn’t work, then amputation might be her last resort.

Background:

Petra is a retired personal assistant. She is married and has two grown-up children. Her ethnicity is White British.

More about me...

Petra had issues with her knees even whilst at school, and the pain and instability has been “getting worse and worse and worse” since then. Her arthritis also affects other parts of her body, “from my head down to the tips of my toes”. In addition to six surgeries on her knees, Petra’s also had operations on her shoulders, elbows, hips, back, fingers, and thumbs. Petra has other health conditions and takes medications for these, including levothyroxine (since having her thyroid removed), metformin and glicazide for type 2 diabetes, duloxetine and pregabalin for multiple sclerosis, a medication to protect her stomach, a blood thinner, ramipril for blood pressure, a statin for cholesterol, and antidepressants. She has additional pain relief, such as co-codamol, to take if she needs to. Petra thinks the number of medications she takes “may even be too much” and would like to see her GP to discuss if there are any she could stop taking.

Between 1998 and 2015, Petra had a lot of surgeries on her knees, including partial replacements and a two-stage revision in which the partial joint prostheses were removed and total joint replacements inserted. In addition, she’s had a number of back operations and broke her femur whilst on holiday in 2011. Petra feels it was a mistake having partial joint replacements in both knees in 2003 and 2005 respectively. She feels it led to more interventions, including manipulation under anaesthesia. Her knees have remained painful and unstable.

Petra’s most recent knee surgery was a two-stage total replacement on her right knee in 2019. Since then, she’s been in a lot of pain and struggles to bend or straighten it. After the surgery, the knee was unstable and she had 32 falls in the space of one year. It got to the point where she didn’t even tell her husband if he was asleep upstairs, for example, and instead used the sofa to prop herself back up. She has a chair lift in her home, and uses a mobility scooter to get around. Petra doesn’t know why she’s had so many problems with her knee surgeries. She knows other people who have had joint replacements with good outcomes, but this makes her upset and “cross” that her experiences have been so bad.

Although Petra wants help with her ongoing knee problems, she is worried about what might happen if the next surgery doesn’t work. She has been told that amputation is a last resort. Petra had an appointment to discuss a revision of surgery but she didn’t see her usual surgeon. She felt that it was expected that she would already have made a decision about whether she wanted to have surgery. She sensed that the doctor was in a rush, and wasn’t paying full attention to her.

Petra doesn’t feel ready yet to make a decision about another knee surgery and has been “sort of putting it off”. She feels that she is choosing between two options – risking surgery going wrong or carrying on with mounting discomfort – and these are “not nice” topics to have to think about and choose between. She explained, “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?’”

In terms of her knee and back pain, Petra says “each sets the other off”. She had been attending a pain clinic for her back, but stopped after having issues with doctors being inattentive. She expects she will have back surgery eventually and has been told she needs to lose some weight first, but it is difficult to be active with her knee problems. She is currently having meal replacement biscuits to try and lose weight, but finds these increase her blood sugar and impact on her diabetes. She explains how difficult it is to juggle between health concerns: “it’s one thing or the other. Something has to give so that I can sort out something else”. She thinks it’s unsurprising that she developed depression after “having operation after operation” without feeling any benefit, and breaking her leg whilst on holiday was when “the rot really set in”.

Petra has previously had private treatment and surgery through her husband’s work insurance. If knee surgery goes ahead, it will be through the NHS as the insurance won’t cover it. Knowing that another surgery is a big decision, Petra plans to talk to her family and to see the consultant privately first to be able to discuss her options in a longer appointment. She hopes it might be possible “to have a simple arthroscopy” before any more treatment options are considered. She would also like to ask about having corticosteroid jabs “just to tide me over”, as these helped her in the past. The two main risks in Petra’s mind about another knee replacement surgery are that it may not work again and that there is a risk of death. She also had a past experience of problems with both her blood sugar levels and blood pressure after a previous surgery. If Petra has another knee surgery, she hopes to stay temporarily in a nursing home. She stayed in one a few years ago when she was having a lot of falls and her family struggled to cope.

For the last few months, Petra has remained unsure about what to do about her knee and her back, and in which order she might have these surgeries. She had planned to book a private appointment with a knee surgeon to discuss options but held off to have some tests done on her back. She’s now waiting to get the results. She is hesitant about seeing the knee surgeon again; she dreads the prospect of “having the damn thing cut up again”, and worries that another surgery will not help with her pain anyway. If Petra decides to have knee surgery though, she hopes it will be done promptly: “I just want to get on with it”.

Petra has had trouble with her knee since she was at school.

I always had trouble with my knee. Even when I was at school, I used to strap it. I first had an arthroscopy in 1998. I remember my knee was painful. I couldn't walk on it. It kept giving way. And it’s-, was ever thus, I mean it’s just like that to this day.

But that’s really the start of it. The arthroscopy in 1998, I, left one-, that was the right knee.

My left one was done in 2003.

Those were the early symptoms.

Petra’s remote-control fold up mobility scooter helps her to be more independent when flying abroad on holiday.

The scooter I’ve had a lot longer. We used to take it on holiday with us, which was great… and we still do ‘cos I’ve got one that folds up.

Oh great.

And people were always fascinated to see it, ‘cos it’s a remote-control thing. And the weight is 23 kilos which is the maximum weight of a suitcase.

That works well then, yeah.

It goes in the hold. I’ve actually been to America on my own with my scooter because I was able to drive my scooter with one hand and hold my suitcase handle with the other.

And I remember, we’ve got great friends in America and I remember highly entertaining my hostess in [American state] when I was leaving. The airport was just empty. And it was big as everything in America is. I had a wonderful time. I was just scooting around with my suitcase in one hand and, and she was in hysterics.

[Laughs]

Oh yes. Gotta get some fun out of life.

Petra had several knee operations with the same surgical team. She phoned them directly if she needed a referral.

Do you have to go through your GP to get referrals to see them?

No, I go direct.

You go direct.

Now, I’ve got to the stage I just go direct. I know their names and I know where they work. I need to leave a message. I will phone. I mean, I know, I used to do a lot privately because my husband had this included with his job. But, of course, when he retired, the five years afterwards or something it then, it then stops.

It’s much much easier to get an appointment with whom I wish to speak to if I go privately. And actually I’ve, I’ve stopped going privately to this particular consultant because he obviously does both.

But I think I, I have stopped going privately. I… rather hope the insurance might pay and of course, they don’t, ‘cos I’ve had too many, I think. So, we’ve been paying to go privately to see him in his office. And I think this is why I’m going to have to go again. Although, any operation he does will be in the NHS place.

But they do the operations in the big NHS hospitals rather than the private hospitals, especially the operations like this, ‘cos this is a very major operation, having one’s knee totally done. Just in case anything goes wrong they’ve got all the equipment there. Which is why they choose to do it in the big NHS. And I can understand that. It makes a lot of sense.

And I did say to him, “Presumably, even if I go privately, the operation will be done on the NHS well-, will be done in the other, in the big hospital.” And he said, “Yes, it would be.” So, I thought ‘right, I’m going to try and see if I can do a bit of both’.

Petra is unsure whether to have a revision knee replacement operation. She is having knee problems still, and had had six previous knee surgeries. Having a good rapport with the surgeon is important to her.

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.

Petra is approaching her decision single-mindedly and thinking about having a successful outcome from knee replacement surgery rather than worrying about the risk of her diabetes and high blood pressure.

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.