Penny
Penny has had knee problems for the past eight years, which have been getting gradually worse. In her appointment to discuss knee surgery, Penny’s surgeon told her that she couldn’t have surgery while having intravenous steroid treatment for vasculitis. She is unsure about what the next steps will then be.
Penny is widowed, and has two adult daughters. She is a retired school cleaner. Her ethnicity is White British. Interview spoken by an actor.
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Penny has pain, swelling, and mobility issues in her right knee. Her knee began acting up eight years ago, and has been gradually worse since then. For the past few months, Penny has been in pain “all the time really”. She has also had issues with keeping her balance and going up stairs. After seeing a rheumatologist, Penny was diagnosed with arthritis. She was told that her the extent of the condition was “serious but it was treatable”. Penny had been hoping to have a knee replacement surgery to improve her overall quality of life. She thought this might also help her left knee, which has started to hurt from carrying more weight.
Alongside her knee problems, Penny has vasculitis at the moment. She first noticed the issue when her eye was bloodshot for a long period of time. She was referred to a specialist and started on steroid tablets. This helped a bit and then Penny started on fortnightly intravenous steroids which involves going into hospital. She has a few more treatments scheduled. Penny also currently takes statins and a low dose of blood pressure tablets. Weight gain and blood sugar have also been a bit of a concern for Penny, but she feels these are mostly under control through her diet. Penny had an operation to treat breast cancer in 1994, and surgery to remove uterine fibroids and her ovaries in 1998.
Before her knee pain became so severe, Penny had avoided seeing her GP about it, thinking that “there’s maybe nothing they can do”. She chose to contact her GP again after hearing that there was a physiotherapist based at the surgery. The physiotherapist referred her for an X-ray, which showed that her knee didn’t have much cartilage left. Penny was then referred to see a surgeon about joint replacement. The physiotherapist also recommended steroid injections, but Penny chose not to have these because she was already taking steroids for her vasculitis. She had been taking naproxen for her knee pain but stopped after hearing that it might cause issues with her vasculitis medication. Instead, she uses hot and cold compresses on her knee, which help a bit.
Penny didn’t know what to expect from her consultation about knee surgery, but she hoped to be offered a joint replacement. She knew about the general risks of surgery and recovery afterwards, but felt “not at all bothered” as her past experience with the NHS has been “really good”. She had heard from people with positive experiences of the surgery, which had given her “a little bit of hope”. Penny thought that a knee replacement would “make such a difference in my life”, and allow her to get back to doing the things she wants to. She explained that it feels “a bit weird” having her family caring for her, because she is so used to being the one who cares for them.
At the appointment to discuss knee surgery, the surgeon looked through Penny’s medical records and X-ray scans of her knee. While her knee showed significant damage, she was told that the surgery wouldn’t be able to go through while she was on steroid treatments for her vasculitis. The surgeon talked her through the added risks, which included blood loss, infection, and potential amputation of her leg. Penny was again offered steroid injections for her knee, but turned them down based on hearing another person’s experience where the steroid injections in their knee joint had only helped for a few hours.
Penny is confident in her surgeon’s expertise and that this is the right decision for now, though she does wish she had asked more questions in the appointment. The surgeon said that she could resume taking naproxen, which Penny had stopped taking after reading that steroids shouldn’t be mixed with other medications. Penny feels “thrilled to bits” that she can get some pain relief, though she doesn’t think these are a long-term solution and she wishes surgery had been offered before her problems with vasculitis began.
Penny is pleased to be back on painkillers, but. Penny currently she has “no idea” of next steps or the timeline for when knee surgery could move forward. She has more IV steroid treatments scheduled and will see what is recommended at these appointments. After talking to another woman on a lower dose of steroids for vasculitis who had recently had a knee replacement, Penny think it’s a possibility for her in a few months or so. She plans to get in touch physiotherapist at her GP surgery to discuss a referral back to the knee surgeon once she’s on a lower steroid dosage. For now, she would like to avoid using mobility aids as she think it would be difficult to stop after starting.
Penny‘s knee problems affected her walking, which limited what she could do. She felt she had little quality of life (spoken by an actor).
Penny‘s knee problems affected her walking, which limited what she could do. She felt she had little quality of life (spoken by an actor).
And just taking painkillers and everything, but I’m really sick because it’s now affecting my life now. You know I’ve no quality of life with it, really.
Well, I just can’t go anywhere I used to. Like, you know, I live in a little village, and I used to walk up and down to the shops, and I can’t do that now.
I used to walk up, I’d get my messages and then go to my brothers, and he used to run me back down to my house from the village. But unfortunately, he’s got dementia, and he’s in a home now, so there’s no way I can walk up and walk down.
So, luckily, I’ve got my car, otherwise you know I wouldn’t be, I wouldn’t be mobile if I didn’t have my car.
I would have to rely on somebody else to take us. And I used to go, we’ve got a football field at the bottom of my garden, and I used to walk round there quite regularly.
I used to get a bit of fresh air but I can’t even do that now. I get, it gets that sore.
And the pain that you’re getting with your knee, is that affecting your sleep and being able to get enough rest?
Well, it wasn’t actually for a while, for a long time it wasn’t, but yes, it’s starting now. You know sort of waking up through the night. And sitting on the side of the bed and until it goes. So that’s not good, either.
Penny had always been the one looking after everyone. She found it “weird” when she needed support with walking from her two daughters (spoken by an actor).
Penny had always been the one looking after everyone. She found it “weird” when she needed support with walking from her two daughters (spoken by an actor).
I went down there and she really didn’t realise how bad my knee was, because we had to go into town to do a bit of shopping and I literally couldn’t.
I had both my daughters there and they both had to take my arm, either side of us. Which was really quite embarrassing, I didn’t like it, you know. But that’s what they had to do to get us back to the car.
Why was it that you found it embarrassing, Penny?
Well because I’ve always been the one that’s looked after them, and I know they’re older now and I don’t need to do it, but you know, I’ve looked after my husband and I looked after my mother, I just seemed to not be taking this very well, people looking after me. It’s a bit weird.
Not that they mind, they don’t mind at all, but I still would like to be sort of normal again.
Penny worried more when she was alone in the house. Spending time with her daughter lifted her mood (spoken by an actor).
Penny worried more when she was alone in the house. Spending time with her daughter lifted her mood (spoken by an actor).
Well yes, I do, I do, when I’m by myself.
My daughter, one of my daughters has just been up for a few days and she took me to the hospital, and it was totally different having somebody in the house, you know?
And I didn’t sit and worry, at all. Like I do when I’m by myself, cos I think you always just make things worse. I think you always go to the worst scenario when you’re sitting by yourself thinking.
Because it’s been lovely having her here for a few days. I’ve not, my mood has lifted a lot.
Penny saw a First Contact Practitioner in her GP practice who sent her for an X-ray and referred her to a consultant specialist (spoken by an actor).
Penny saw a First Contact Practitioner in her GP practice who sent her for an X-ray and referred her to a consultant specialist (spoken by an actor).
You know it’s just recently at my surgery that I learnt that we had a physiotherapist. And I thought right, if I go and see him maybe he’ll refer me? Which he’s done.
And I feel as if I’m getting something done now rather than - I mean - I went at the beginning of the Covid carry-on. I was going into town for physiotherapy, but of course that had to stop. You know with the Covid, so I didn’t.
When we could go back out again and mix with people I didn’t go back to the doctors and say I wanted to take it back up, you know, go back to the physiotherapist. I thought I can’t be really bothered with all this carry-on. But as I say it’s now getting worse.
So, I thought I’d go and see the physiotherapist at my surgery and he’s been really good. He got me back for an x-ray and then he’s referred me to this specialist, which I’m gonna see tomorrow.
The physiotherapist at your GP’s surgery, how long ago did you see them? When did they put that referral through for you?
Oh that wasn’t that long ago, I’m trying to think when, it must’ve been January, I saw him, and then he sent us for an x-ray, and then I’ve seen him again while he was, wellI had to go back. He says, “I’ll see you in a fortnight.”
I went back to see him after the fortnight, but he was on holiday, so it would be into the beginning of February, I think.
And then he's seen me again and he’s had my x-ray results, and he said, “Right, I’m gonna pass everything down to the specialist, you’ll probably hear from them.” Which I did.
Penny could not have knee replacement surgery while having intravenous steroid treatment for vasculitis because she was at higher risk of bleeding and infection (spoken by an actor).
Penny could not have knee replacement surgery while having intravenous steroid treatment for vasculitis because she was at higher risk of bleeding and infection (spoken by an actor).
Right, my knee-, the surgeon wasn't going to do anything about it because I was on steroids.
I said, “Well, why’s that?” and he said, “Well, if it starts to bleed,” he says, “it could have not very good consequences, you might even lose your leg, you might get infection in it.”
I says, “Oh dear me, right, okay,” so I says, “we'll just leave that at the moment then.”
And I've got this condition called vasculitis, which is an inflammation of all the blood vessels in my body, and I'm going regularly for treatment at the hospital.