Liz

Age at interview: 70

Brief Outline:

Liz previously had a total knee replacement on her right side and was told by the surgeon that she would also need the same surgery for her left knee.  However, recent heart problems have prevented her having the left knee replacement. Liz is currently waiting for a new appointment with her knee surgeon to see if she is still eligible for surgery considering her other health issues. 

Background:

Liz is widowed and has adult children. She is a retired radiographer. Her ethnicity is White British.

More about me...

Liz’s left knee is painful, affects her mobility, and has contributed to having falls, including one fall which tore some of the muscles in her shoulder. She had a total joint replacement on her right knee five years ago. At the time, she was told that the scans showed her left knee would also need replacing in the future. The joint replacement surgery on her right knee went well, though she had complications with her blood pressure and needed to stay in the hospital longer than expected.

In addition to her knee problems, Liz has issues with her back; she thinks both are related to the physical demands she had working as a radiographer as well as her time spent horse riding and playing squash. She gets spinal spasms and pain which is like “having major toothache in your back”, though this improved somewhat after having a rhizolysis procedure. Her back pain also causes associated issues with peripheral neuropathy and circulation problems. Liz has been diagnosed with multilevel disc disease and facet joint degeneration, as well as rheumatoid arthritis and osteoarthritis. Her joint issues were part of the reason for retirement, after her legs “just went out from underneath” her at work one day. To manage her knee and back pain, Liz takes gabapentin as well as paracetamol and codeine on bad days. She also uses a brace and ice packs on her knee.

Liz also has heart problems, diabetes, thyroid disease, and asthma. She was diagnosed with having atrial fibrillation in her 40s and has since been taking blood pressure tablets and blood thinners. Since then, she has also been diagnosed with high blood pressure and heart failure and has had several minor heart attacks. At the time, an angiogram showed that inserting a stent would not yet be a suitable treatment option.  Liz takes metformin for her diabetes and keeps an eye on her diet. She takes tablets for thyroid disease and injections to manage a B12 deficiency. Liz’s asthma developed when she was in her 30s; although it is well-controlled with an inhaler, she is more prone to chest infections like pneumonia. Liz also receives injections for her shoulder injury.

Liz has sometimes struggled with her weight and worries about not being able to get active, which in turn has affected other aspects of her health. For example, she thinks that being unable to exercise because of her knee has made it difficult to keep her blood sugar down. She has diverticulitis, which makes it difficult to follow dietary recommendations like eating lots of vegetables. Liz tries to restrict her caloric intake, but finds that if she eats too little, she becomes dizzy and more prone to having falls.

About two years ago, Liz went to her GP about her left knee. She was referred to a physiotherapist who sent her for MRI scans and gave her a set of exercises. Liz found the exercises made her knee worse. She was then referred on to see a surgeon. Although this referral was marked as urgent, it “seemed to get lost in the system” as she didn’t hear anything for over a year. Liz found this delay “very distressing”, particularly because she had some bad falls and her knee kept dislocating during that time.

Going into her appointment, Liz hoped to be offered a total knee replacement. She thought that a partial replacement would be a “waste of time and a waste of resources” because her knee would probably need a total replacement later on. Liz’s mentality towards surgery is, “Why be in pain when you don’t have to be?”  -though she has some worries about the risks of surgery, like blood clots, heart failure, and breathing issues due to her asthma. She has found her background as a radiographer helpful, as she understood what was happening physically with her knee. Liz hoped that knee replacement would allow her to exercise more and do the things she’d been putting off, like adopting a dog.

At the appointment, Liz’s surgeon confirmed that she was in need of a total left knee replacement. However, he expressed concern about Liz’s other health problems and asked that she see an anaesthetist for a risk assessment. If given the go ahead, the surgeon told Liz that she could expect to have the procedure within 12 weeks. However, before Liz could be scheduled for surgery, her other health problems quickly worsened. Liz had a stroke which left her blind in her left eye, as well as a series of three heart attacks which required emergency triple bypass surgery. Liz spent five days in intensive care before being moved to coronary care, spending nearly two months in total in hospital.

Liz has struggled with recovering from bypass surgery due to problems coming out from having anaesthetic. In addition, a vein was taken from Liz’s left leg in order to make new arteries for her heart, but the wound in her leg became infected and the healing process was long and difficult. This leg was particularly painful as it was also the one in need of the knee surgery. As a whole, the procedure on her heart was relatively successful but left Liz with angina which, if untreated, could lead to further heart attacks. Liz has particular problems with her left ventricle, which has led to arrythmias and an abnormally high resting heart rate. Liz is disappointed that she continues to have complications following heart surgery, as surgeons had told her that she would have “in effect a new heart”. Liz has ongoing check-ups for her heart health and has been prescribed diuretics and a nitrate spray.

Liz feels that her family, particularly her daughter and son, were very supportive of her recovery despite having responsibilities to their own young families. Liz received social care support, and someone would come to her house for a half hour in the morning and afternoon to prepare her meals and care for her pets. However, Liz was shocked because, despite being told in hospital that this support would be free, she then received a £900 bill.

Because of her other health issues, Liz says that her knee has dropped in priority. She explains that, “after everything I’ve been through, any sort of surgery [e.g., knee replacement] is a bit daunting now”. Liz has not seen anyone to discuss knee surgery again since her heart surgery, and received a letter explaining that her knee operation would be put on hold for the time being due to the anaesthetic risks of her heart conditions.

Liz’s has an upcoming appointment with the knee surgeon to explore what can be done for her knee. She doesn’t have any sense of what the surgeon might say but is “keeping an open mind”. In the meantime, Liz is trying her best to stay active despite the winter weather. 

When Liz turned over in bed, her knee felt like it was dislocating. She wore a knee brace at night when it was bad.

I mean the awful thing about my knee was it was dislocating in bed: you’d just turnover in bed and the knee would sort of almost come apart—and you’d just have to lie still till it sort of sorts itself out.

And then, you know, sort of squish it straight. On really bad nights I would put my brace on in bed.

Goodness, so it must have been really affecting sleep as well, sort of day-to-day and getting around—?

Oh, yes, horrible. And because it makes you feel so ill when it happens - it’s- it makes you feel sickly and it’s really unpleasant.

Liz had delays in getting a referral through the Extended Scope Practitioner, although marked urgent, it felt as if it got lost in the system.

It’s taken two years to get my shoulder looked at and 13 months to get my knee looked at.

Because the new system in the North East is that your GP can’t refer you directly into osteo- what do they call it, musculoskeletal?  You go through physios.

So, they send the application to the physio and then they’re supposed to get in touch with people; just nothing happened.

And I rang them and - oh yes, they had it - so I had the referral, but nobody had had time to look at it, and this was one marked - well, for my knee it was marked urgent: ‘Needs urgent knee replacement’.

And it just- well, honestly, it seemed to get lost in the system.

I mean the physio that I spoke to was really nice. She was a consultant and she’s going to look into why it’s taken them so long to sort me out, but it’s been very distressing.

Because as the knee gives way- I mean when my right knee gave way was when I fell backwards down the stairs: I got to the top of the stairs and my right knee hyper-flexed and I just fell backwards down the stairs, and my husband was sitting there watching.

I mean he- the poor soul, he got such a fright and how I didn’t kill myself I don’t know. I must be quite made of sturdy stuff, I think [laughs].

Goodness, gosh. And how long was it once your GP put in that referral to the physio before you followed them up and sort of had to ask them what was going on?

Six weeks.

Six weeks.

Six weeks. I thought I had to be fair and I gave them a reasonable time but then I kept ringing and I think the woman got sick of me ringing in the end [laughs].

So then all of a sudden something happened [laughs].

I mean I had to see the physio before I could even have an X-ray and once I saw the physio, she got me off for an MRI very quickly mind - and it didn’t take that long to get the MRI results. It took a little while, but I think that was six weeks again.

But I mean I was fully aware that my knee needed replacing anyway because it wants to bend backwards, which really shouldn’t happen with a knee - unless you're a bird [laughs].

Liz hoped that having knee surgery would enable her to “walk properly on the moors” and strengthen her back muscles, helping to prevent spinal spasms and improve her circulation.

I’d like to go walking properly - on the moors. That’s what I’d like to do.

Get fitter. More exercise. Because I think, the more I walk, the more the muscles will support my spine, I’ll get fitter, it should help my spine, but I’ll have to walk through the pain to do it.

But if I haven't got pain in my knee and in my back, and I’m not worried about my knees giving way, then I’ll be able to do it better [laughs].

While waiting for total knee replacement, Liz’s other health problems worsened and she was no longer able to have surgery.

Unfortunately, before I've had the chance to get my knee operated, my heart problem’s overtaken me, and I've had three heart attacks and had to have a triple bypass, which has been very successful from the point of view of supplying my heart with blood through the main arteries, but still the smaller vessels aren’t receiving a very good flow of blood, so I'm still left with residual angina, which if left untreated, then develops into another heart attack, so I'm pretty dependent on this-, my spray, my GTN spray. I am improving steadily after the surgery, and slowly getting back to some kind of normality.

Goodness. And so, you were due-, you were eligible to have the knee replacement, but this all happened over the summer, before you could have the operation itself?

Yes, it did, yes.

Am I right in thinking, Liz, that you also had a stroke before the heart attack?

I did, in July, which left me blind in my left eye.

And you don't have your sight back in your left eye?

Yes, I can see a little bit of light, but I can't see objects or direction or anything.

And before you had a stroke and the heart attacks, did you see the surgeon to discuss if surgery was an option for you?

Yes, yeah. But I mean even before this happened, he was rather concerned about my general health.

And was that sort of health overall, or to do with the heart—?

Yeah, as an anaesthetic risk.

Okay.

When I had my right knee done, I had problems getting my blood pressure to come back up. I had terrible problems with passing out, with very low blood pressure. So that was how instead of just being in for 24 hours, I was in for a couple of days longer.

Liz’s heart problem worsened while waiting for surgery. She had three heart attacks, triple bypass surgery and an infection in her leg. This made her knee problems less of a priority.

Unfortunately, before I've had the chance to get my knee operated, my heart problem’s overtaken me, and I've had three heart attacks and had to have a triple bypass, which has been very successful from the point of view of supplying my heart with blood through the main arteries, but still the smaller vessels aren’t receiving a very good flow of blood, so I'm still left with residual angina, which if left untreated, then develops into another heart attack, so, I'm pretty dependent on this-, my spray, my GTN spray. I am improving steadily after the surgery, and slowly getting back to some kind of normality.

Yes, unfortunately they used a long saphenous vein in my left leg to make the new arteries for my heart, but that site got infected, and subsequent to that was- I had to go back to theatre and have the site all debrided.

So, getting my leg to heal has been rather a long process as well; it’s still getting dressings on it at the moment. They used an interesting machine called a ViPAC [VAC] which is a suction system that they put into the wound and it sucks away all the detritus and any sort of nasty tissue.

You have to carry round a little pack with you, but it’s a very clever system, and then it certainly healed the wound up beautifully. And I'm hoping in a couple of weeks to be dressing-free [chuckles].

Oh, bless you, so you've got sort of ordinary dressings now, you don't have to have that kind of machinery? No?

I don't have to have the pack, I've had it off for about 10 days now. It’s lovely, because it did interfere with sleeping, having to have these little battery-powered systems with you all the time.

Oh goodness. And you said it was your left leg where the veins had become infected, and that’s also the leg that you've got your joint problems with, I think?

It is, yes, it is.

Goodness, that must have been difficult.

I don't know if it’ll affect the surgery, I'll have to ask him next time I see him.

And can I ask about the times that you have seen the knee surgeon? I think when we last spoke, you were due to see him the next day, in late March of this year?

Yes, unfortunately I had to cancel that clinic.

Oh no, oh goodness, okay.

[chuckles] Yes, so I haven’t seen him, with being ill. But just he wrote me a little note saying that obviously because of my health, he was putting everything on hold.

At the moment I suppose you've got quite a lot of health concerns going on - wwhat is sort of the placing for your knee problems in relation to that? I can imagine that it’s sort of dropped down in terms of your priorities for the time being?

It has rather, yes it has. I mean obviously because I'm not well, I'm not doing as much, so it’s not affecting me as much as when I was more active.

Plus, with the winter and the weather, I'm not getting chance to get out and try and walk, and you know, it-, the weather in itself sort of slowing my recovery down.

Liz thinks healthcare professionals need to really listen to their patients

I think the most important thing is to remember to talk to the patient, and listen to the patient. Because as healthcare professionals, we're very good at listening to ourselves, but we're not that good at listening to what the patient has to say, and they are the ones who really know their body.

So even though it may seem not particularly appropriate at the time, they [the patient] can sometimes come out with something which afterwards gives you a clue as to what’s going on with them.

So, I think listening to the patient is one of the most critical things people should do.

And have you found that your doctors have been receptive to that from you?

Not always, no.

No.

You know, they tend to treat you like a silly old woman, or just a silly woman [chuckles].

Some doctors can be rather condescending, though the more modern ones don't seem to be, it’s a bit more some of the old-school, but - and I think it is important.