Emily
Emily had hip replacements on both sides, and a total knee replacement on her right. After a difficult recovery from the last surgery and the death of her husband, she was “not ready mentally” to consider knee surgery for her left side any sooner. At her appointment, Emily was told that she will need to wait eighteen months for her knee surgery.
Emily is a retired customer services advisor. She is widowed, and lives in an assisted living complex. She has one adult son and a grandchild. Emily identifies as White American/British.
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Emily has osteoarthritis, which she describes as a “rotten disease”. She had a right and left total hip joint replacement in 2002 and 2009 respectively, and a total knee replacement on her right side in 2011. Before her appointment about problems with her left knee, Emily was taking paracetamol in the morning and at night. Emily has also been diagnosed with fibromyalgia. She takes allopurinol for gout in her feet, metformin for type 2 diabetes, and uses an inhaler for her asthma. Emily takes around 18 different vitamin tablets and supplements. Emily says that her sleep and appetite are affected by her recent bereavement, and “of course the pandemic had put paid to a heck of a lot of things” like going out and socialising too.
The pain in Emily’s left knee varies; sometimes it feels like the joint “finds a place in there where it’s not rubbing”, but other times, “it hurts like hell”. Arthritis also affects Emily’s right shoulder, and she has back problems. She has walking sticks and crutches, and a device to reach things and help her put on her socks. When her back is very sore, Emily wears a brace to help support it and uses hot water on it. She also has a bandage that she puts over her knee when she expects to be using it a lot, for example when she goes grocery shopping.
Emily first saw her GP about joint problems over 30 years ago. It was put down to being a ligament problem and that she was recovering slowly after having a baby two years before. However, over time, the problems “just got worse and worse and worse”. She kept going to the GP but was repeatedly told that she was “too young” for joint replacement surgery. When Emily was 55, she had her first hip replacement. She says recovery from her two hip replacements was “a walk in the park”, compared to the total knee replacement on her right side in 2011, which took about 18 months before the pain was gone. She doesn’t know why it took so long to heal after her knee replacement; with hindsight, she thinks she “should have exercised more”. The only physiotherapy Emily had was privately, which she cancelled after several sessions because it was so painful.
Although Emily knew that her left knee had problems and likely needed replacement, she “kept putting it off and putting it off” because she was “not ready mentally” and didn’t want to go through the surgery again. Then, in 2018, her husband was diagnosed with cancer and Emily’s focus was on caring for him. She also withdrew herself from a research study that she had joined for her right knee replacement – a decision Emily later regretted, because it could have sped up the process of being seen about her left knee problems when she was ready. After her husband’s death, Emily says she “waited until the dust settled here in the house and [to] get myself back on an even keel” before contacting her GP.
Going into hospitals is very emotional for Emily, and brings back upsetting memories of her late husband’s illness. A local patient transport organisation took her to her assessment appointment, so that she did not have to drive herself. She has had bad experiences with anaesthetic during previous surgeries and worries that she may have another problem with anaesthesia.
During Emily’s appointment to discuss knee surgery, she was told that the wait would be around 18 months. The surgeon did not discuss any alternative options, but did recommend that she see her GP if the pain got to be too much. She found the surgeon to be “very nice, very sympathetic”. Emily is currently considering taking part in a robotics surgery trial, but this would not speed along surgery and she is concerned that she is not “motivated” enough to be a good candidate. Emily would prefer not to go private as the expense would put a strain on her finances. She feels somewhat unprepared to go in for surgery, as she feels she needs to resolve some bereavement-related tasks beforehand.
Since her appointment, Emily’s health has remained about the same. She has a mix of good and bad days, and notices that cold weather is a problem for her joints. She recently started using liquid ibuprofen as a painkiller, which has been expensive but “absolutely fantastic”. Emily continues to use crutches, walking sticks, and handrails to get around. The pain from arthritis and fibromyalgia related fatigue “gets depressing” for Emily.
Having already had three joint replacement surgeries before, Emily has been thinking a lot about the practical arrangements of recovering if she has another knee surgery. She’s had her bathroom refitted to make it easier to get into her shower, for example. Emily’s husband died 18 months ago and she knows that her son and his family are busy juggling their lives, so Emily wants to be as prepared to look after herself. Emily says that she hopes the outcome from knee surgery will be to “walk for more than what I can walk now” and to be able to enjoy spending time with her grandchild, for example looking for fossils on a beach. Emily think she will also need to consider surgery for her back eventually, but “can’t even think about that until after they do my knee”. She explains, “I don’t want to end up in a wheelchair” because of back problems, after “having to go through all the agro of having both my knees and my hips done”.
Whilst Emily has known for years that she needs a knee replacement operation, she is still concerned about the “unbearable” pain she experienced the first time she has the surgery done. She advises doctors to try to be less “blasé” about knee surgery and to let patients know that it may “hurt like hell”. She is trying her best to “take each day as it comes” and feels that for now she is “holding fair”.
Emily’s gout in her foot affected walking and balance. Fibromyalgia affected the muscles around her knee and made her feel very tired.
Emily’s gout in her foot affected walking and balance. Fibromyalgia affected the muscles around her knee and made her feel very tired.
Yes. I don’t, I don’t look like I’m walking in a straight line [laughs]. And sometimes I feel like I’m going to lose my balance too, not because of my head but because of the way my feet are moving.
My doctor just looks at me and just shakes his head and says, “Well,” he said, “it’s just your arthritis.” And of course I have fibromyalgia and that plays up because then it makes me tired, and it takes me twice as long to do anything as anybody else. So, it gets depressing.
And, you know, I think of the things I should be doing, I could be doing, but I don’t, I don’t get to do them, I don’t get to do them but, you know, there you go.
The fibromyalgia is knocking me for six; it makes me so tired. So tired.
Would you mind sort of—
And sometimes my muscles really hurt—and that’s not the joint, but the- the muscles around them, I can feel it.
Emily felt “sick to her stomach” when taking co-codamol in tablet form. She took ibuprofen in liquid form which helped tremendously.
Emily felt “sick to her stomach” when taking co-codamol in tablet form. She took ibuprofen in liquid form which helped tremendously.
Did I mention to you that my GP was giving me - well, he is still actually but he doesn't know I’m not taking them - a prescription for paracetamol?
I was taking it- I took that because I can’t take co-codamol because it makes me feel sick to my stomach.
I’ve been seeing these commercials on television for Flarin, with the liquid ibuprofen, so it’s a liquid rather, and I thought, ‘oh, I’m going to try it.’ So I went out and spent £10 something for a box of it, and I thought, ‘gee, that’s a bit expensive.’ But anyhow I did, and my goodness me, what a difference that makes.
Absolutely fantastic. You can take up to six a day. I take three a day: I take one mid morning, one late afternoon, well, say round about six o'clock, and then another one at 11 o'clock at night when I go to bed. And that does help.
Okay.
That helps tremendously. Of course, I always take it with something in my stomach so I’m very careful of that. But yeah, it’s helping tremendously. And my chemist, my local chemist who delivers my prescriptions, I’ve explained it to him and he now orders me in three boxes to come out with my prescription. I give him my debit card over the phone and he just includes it in with my prescription once a month.
After a difficult recovery from her previous knee replacement and her husband’s illness, Emily decided to delay having knee replacement surgery.
After a difficult recovery from her previous knee replacement and her husband’s illness, Emily decided to delay having knee replacement surgery.
How quickly into the appointment did you know that surgery was an option for you and that it was going to be offered?
Oh, I knew years ago I needed it. They told me before [my husband] was poorly that I would need it and I just looked at them and I said, “I know I need it, but I’m not coming until I’m absolutely destitute.”
And he said, “Why?” and I said, “Because, have you ever had a knee replacement?” And of course he said, “No.” It was a young man, and I said, “Well, it hurts like hell before you have it but after you have it, it’s 100 times worse.”
And it really is, the pain is unbearable. I would rather have nine hip replacements than another knee replacement; I’m just dreading it.I really am. To be perfectly honest with you. The pain was horrific, absolutely horrific. And it took almost 18 months before I felt normal again.
Gosh, yeah.
It really took a long time. I don’t know why, it just did. Yeah, it was a real bugger. And I kept putting it off and putting it off and then of course, in 2018 we discovered that [my husband] had melanoma. And I mean my knee was, I was in, I was hurting then, obviously I’d been hurting all along, and I thought ‘well I can’t do anything now because I don’t know which way [my husband] is gonna go and I’ve got to be able to look after him to some degree and he can’t be running around looking after me if I’ve had, got my knee done’.
So yeah, so [my knee] was put on hold and I waited until after the dust settled here in the house and get myself back on an even keel, and I contacted my doctor last year. And now they’re getting the ball rolling.
Emily says there needs to be more funding put into NHS physiotherapy to improve access for patients after joint surgery.
Emily says there needs to be more funding put into NHS physiotherapy to improve access for patients after joint surgery.
If there’s anything good that can come out of this it’s to please ask the powers that be to - and I know that funds are limited and maybe they don’t have the staff, they don’t have enough physiotherapists - but people really need more physiotherapy. They really, really do.
Yeah, it’s, I know and it’s vital. And not only that, it’s not only good for the joint that’s been done but you need that to get up off your backside and keep your circulation going the way it should do. It’s good for your heart and everything else, but you just need more physio.