Karen

Age at interview: 70
Brief Outline:

Karen has been through a lot in terms of her health and that of her family’s. She is a carer for her son, who has a brain injury, and her husband, who has Alzheimer’s. She has a history of blood clots, asthma, and donated a kidney to her son in 2015. She saw her GP about knee pain and went on to have a partial knee replacement, which has been “brilliant”. 

Background:

Karen is a retired antiques dealer. She is married and has one adult son. Her ethnicity is White British.

More about me...

Karen has been through a lot in terms of her own health and that of her family’s, and it became increasingly difficult to cope when she developed problems with her left knee. Karen had tried a walking stick but didn’t find it helped. She started experiencing pain in her right leg too “where I’ve been overcompensating”. Her GP advised her to take paracetamol every four hours, but Karen found this is of little benefit. Karen has always been very active and particularly enjoys tennis, yoga and swimming. Her knee problems meant giving up tennis, which she missed very much. Karen says she is not as fit as she used to be; the pain of her knee made exercise difficult, and she found herself eating chocolate more “because I haven’t had the strength to not eat it”.

Based on her past experiences, Karen has developed a fear of hospitals and treatments, explaining “I shake with anything to do with anything medical”. As a child, she was frequently in hospital with bronchitis, pneumonia and asthma. She had a car accident as a teenager which severely injured her left leg and required multiple operations. Karen’s son suddenly became seriously ill at the age of 18 with an autoimmune disease. He subsequently had a brain injury and, over seven years, was in and out of hospital, during which time Karen donated a kidney to him. Karen says she has still not recovered from the shock, and sometimes has flashbacks. Three years ago, Karen developed several large blood clots in her leg and was diagnosed with May-Thurner syndrome. She had a stent put in to her iliac artery, and takes blood thinner tablets every day. Karen says her leg has not been the same since. More recently, Karen’s husband was diagnosed with Alzheimer’s, and Karen feels completely unsupported by health and social care professionals.

Karen saw her GP about two years ago because of knee pain. She had an x-ray taken but was not told the results. She had a telephone call about six months ago with a surgeon to discuss options, and they agreed to have a face-to-face. Before her appointment, Karen was worried the surgeon would decide not to operate on her. She was also worried about looking after both her son and her husband during recovery for a surgery, and explained how caring for others has meant “my life hasn’t been about me for so long”.

 

Karen found her appointment to be a positive experience, and she was pleased with how thorough the knee specialist was. She felt discouraged though when the consultant told her that the wait time could be up to 18 months. Karen mentioned to her doctor that she may need to go private. However, Karen was sent notice of a surgery date shortly after her appointment, and didn’t need to explore other options. She thinks this may have been because the doctors saw that she was being proactive about exercising, and that the staff “just wanted to make me better”.

The surgeon spoke to Karen about her past issues with thrombosis and the blood thinners that she was taking. She was advised to stop taking the blood thinners leading up to the operation. Karen was told that she was in good overall health going in, and that her weight wasn’t a concern because her blood pressure was normal. Her May-Thurner syndrome was also not considered an issue. Before the surgery, the anaesthetist discussed Karen’s morphine allergy with her, and she felt very well cared for. Karen has previously had bad experiences with the hospital she attended, and did feel anxious about going back. She found having treatment for herself less worrying, as “it’s a different story than when it’s for my child”.

Karen ran into some issues with arranging a carer for her husband, to provide daily support whilst she had the operation and recovered afterwards. Social services had offered to send carers for short periods of time, but Karen was concerned that seeing a new person in the home every day would alarm her husband. She was able to sort out a private carer but this meant having to delay her surgery by a few weeks.

Karen had surgery to fit a partial knee replacement two months after her consultation appointment. She was pleased that a partial, rather than total, knee replacement was possible. The operation was done as a day surgery, which made Karen a bit nervous at first. Karen considers her surgery to have gone “really well”. The recovery was uncomfortable, but “altogether quite quick”. There were some tensions with the private carer, and Karen found it difficult to stand up for herself and oversee the carer’s role whilst in pain. Karen had physiotherapy exercises to do at home and noticed an improvement within a couple of weeks. She also saw occupational therapy to discuss aids and supports she could use, but this was not very useful because the appointment was many weeks after her surgery and she had mostly recovered.

Since her operation, Karen has much less pain and this outcome she describes as “really fantastic”. She has found that being able to walk without pain makes “such a big difference to your life”. She was able to go on holiday about two months after having her knee replaced; she enjoyed being in the sea, for example, but was “quite aware of falling on it”. Karen has been able to be more active through activities like Nordic walking, and has found it easier to lose weight. She finds that managing her other health issues, like asthma and eczema, are easier now that her knee is much improved. Karen no longer needs to take paracetamol for pain relief. 

Playing tennis gave Karen a release from her caring responsibilities. Her knee problems impacted her overall wellbeing and left her feeling very down.

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Playing tennis gave Karen a release from her caring responsibilities. Her knee problems impacted her overall wellbeing and left her feeling very down.

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I’ve tried everything I can think of that I can do. But my tennis I miss so much.That is my passion.

I mean because it’s getting rid of all the, ‘that’s for this person, that’s for that person’ and I miss the ladies because we’ve all lived in [country] and they’re all really lovely, lovely ladies, I really miss them.

It really does put you at a disadvantage having a bad knee, you know, you don’t realise how much it’s horrible.

Did you find that your knee was impacting on other aspects of your health?

Well yeah, it impacted my overall wellbeing. I mean I was getting down, getting very down and yeah, you’ve just got to really, I just felt like a disabled person. It was horrible.

Absolutely horrible, and I’ve you know it was awful. Really awful.

Karen asked the surgeon about the risks of having thrombosis during knee replacement surgery as she was worried about it

Karen asked the surgeon about the risks of having thrombosis during knee replacement surgery as she was worried about it

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Well, no I did ask because I had thrombosis so I was on blood thinners, and they said they could deal with that. And they said you know, when I’d had surgery I’d have to exercise and I said yes, I understood that. And you know, and, and I did those exercises, so yeah.

Can I ask a bit more about the thrombosis, and sort of blood clotting? What sort of conversations or you know explanations were there around that for you?

Well, they said as long as I was on the blood thinners, that was alright. And I’d, I had stents put, I had May-Thurner syndrome, so I’ve actually got stents in my body so they were satisfied that it would all be alright.

Karen was “astounded” that she received a surgery date within six weeks. She had been expecting to wait up to 18 months.

Karen was “astounded” that she received a surgery date within six weeks. She had been expecting to wait up to 18 months.

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It was only about six weeks. I thought it was going to be a lot longer but they were really pleased with the fact I’d been doing yoga and swimming and things, and they were pleased with the muscles around my knee and I think my overall health, they were pleased with it.

So, it wasn’t very long at all. I had said that I’d put off the surgery and I said I’d read that it was going to be up to eighteen - you know there were so many people waiting - and I said I know there’ll be a waiting list. And they said to me it could be eighteen months. And I said, “Well I can’t wait that long, I’ll have to pay to have it done.” But I did hear very quickly with a date, so it was great.

I did say to the sister, I said I was a bit worried about my weight, and she said, “Oh no, you’re, you know a little bit overweight but we’re not worried about that.” Cos my blood pressure’s always, is good, and all my readings were good, so you know it was nice to hear really.

Karen was scared but she knew she had to have knee surgery. She had found her pre-operative assessments very thorough and her discussion with the anaesthetist reassuring.

Karen was scared but she knew she had to have knee surgery. She had found her pre-operative assessments very thorough and her discussion with the anaesthetist reassuring.

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I think they’d kind of discussed before I went in, they knew my history, but when I went, there’s a whole day that you go for like pre-op discussions and I saw about eight different people and things were ticked off.

But the last person I saw was the one that made the decision about the anaesthetic, and all the rest of it. And the anaesthetist I had was incredible - he went through the pain relief, 'cause I’m allergic to morphine, and he went through the anaesthetic, 'cause I can be quite, I get quite affected by anaesthetic. He went through that he would anaesthetise the around the knee, and not put so much anaesthetic actually in my body. Which, which was, you know I was so pleased with.

And he had worked out quite a - it looked complicated to me the pain relief - but he said he would get the hospital to tabulise it; you know have it in boxes and colour coded, which ones to take when. So, he’d really, really thought it through. And I was so appreciative of, of that because I know that the anaesthetic is, well one of the most dangerous things with an operation. So it was that, I mean I was just so impressed by him.

Well, they checked absolutely everything with my health, it was incredibly thorough. And the last guy I saw read all of my medical notes and I’ve donated my body to medical science and he asked me about that. And all sorts of things.

They really went into it in depth, so I was, you know, there was obviously time in-between sort of waiting, but I was very impressed. They were very thorough.

Karen had walked and up and down stairs on the evening of her operation. Her knee wasn’t painful as she still had the benefits of the anaesthetic.

Karen had walked and up and down stairs on the evening of her operation. Her knee wasn’t painful as she still had the benefits of the anaesthetic.

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How was your experience of coming round from the operation?

Oh, it was great. Whatever they gave me I think I was really high, I was just like, “Oh right, have I had the operation?” [laughs]

And then they said, “Oh the physiotherapist is coming,” and they’d got the stairs, and I was walking up and down the stairs, and doing everything they told me to do, and then I thought, ‘Oh my goodness, when all this wears off around the knee, it’s going to really hurt.’

[Laughs] Which it did, but I thought, ‘Oh I wish I could have this feeling all the time.” It was lovely.

Karen was sleeping better and getting less pain three weeks after her surgery. Her doctor gave her a limited supply of opioid painkiller because of its addictive qualities.

Karen was sleeping better and getting less pain three weeks after her surgery. Her doctor gave her a limited supply of opioid painkiller because of its addictive qualities.

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After the surgery how quickly did you start to feel things were improving for you?

I’m not sure. Maybe about three weeks, I thought, you know, I wasn’t getting so much pain, and you know I had the stitches out, and I was just able to sleep. It was horrible not able to move really in bed, 'cause I couldn’t bend my knee, and it was, it would throb at night so, yeah it was, it was altogether quite quick.

When did you stop taking pain relief?

Well, the doctor gave me another prescription for it, but then he wouldn’t give me any more, and he explained to me that they were opioids and he didn’t want me to get addicted.

So, I kind of understood that, cos the tablet I was on, I can’t remember the name of it, but it was the equivalent of morphine. But yeah, so, but I did manage, but it’s just it got me to sleep and all that sort of thing.

As the months have gone by, Karen has been able to walk more and she has gone back to Nordic walking.

As the months have gone by, Karen has been able to walk more and she has gone back to Nordic walking.

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So how do you feel about the impact of the surgery?

Well, where I was so nervous, and you do meet people that have had- you know they haven’t been too happy or something’s happened with their operation, I was, I was nervous, but I’m thrilled with it.

Being able to walk, I hadn’t realised, I knew I was in pain but you know when you haven’t got it, it makes such a big difference to your life.

Can I ask a bit more about what has changed, so sort of pain and what you’re able to do?

Well, I’m able to walk.  I wasn’t really, I was having to work out how far everything was, you know from parking my car, could I go there? Could I get there? And then have to come home. I mean now I don’t have to think that; I can just act like other people.

So, it’s brilliant.

And is it completely pain free or do you have some pain still?

Well sometimes I just get like, oh yes, my knee hurts a little bit, but I mean it, no, literally it’s fantastic. Really fantastic.

I’m so pleased to hear that.

Yeah, it’s wonderful and I’ve lost some weight, cos I’m able to move and I’ve gone back to Nordic walking, so it’s brilliant.

It is easier now for Karen to look after her husband who has Alzheimer's because she can walk easily to the kitchen and up the stairs.

It is easier now for Karen to look after her husband who has Alzheimer's because she can walk easily to the kitchen and up the stairs.

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How have your other aspects of your health, or your health in general been since then?

It has helped, I mean I’ve still got - you know - like asthma and sinus and eczema and all of that good stuff, but and the main thing is looking after my husband with Alzheimer’s which is exhausting.

But I’m managing because I can walk now. I’m not having to think, ‘Oh my goodness I can’t make it to the kitchen,’ or you know, ‘I’ve got to go up those stairs,’ or all of those things. It’s fantastic.

So yeah, it’s really, it’s literally changed my life, it’s fantastic.

Karen thought her orthopaedic surgeon was brilliant. Communication was straightforward and the atmosphere at the hospital was fantastic.

Karen thought her orthopaedic surgeon was brilliant. Communication was straightforward and the atmosphere at the hospital was fantastic.

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I was very confident with the surgeon that I had and he was brilliant.

I did write a letter and thank everyone in the department. I mean when I phoned up to do the change of appointment, you know you could get through to the secretary, the bookings clerk, you could get through to everybody, they were really good

So I wasn’t, and the whole atmosphere at the hospital was just lovely. I think the staff were smiling, they’re relaxed, it’s really nice, it’s a fantastic hospital.

It’s nice for them to have the positive feedback as well, isn’t it? And to sort of know the success stories.

Well, I think so, it’s, you know they train for so long and they’re gifted people, and you don’t see them when you’re recovered kind of thing. I saw the head physiotherapist but I wouldn’t have seen the surgeon, but you know they make such a difference to people’s lives, it’s incredible.

Karen says keep pushing for a referral to the orthopaedic consultant.

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Karen says keep pushing for a referral to the orthopaedic consultant.

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I think you’ve got to, when you’ve got pain and there’s something that can be done about it, I think you’ve got to be very pro-active and push to get to see a surgeon. You’ve got to really keep asking to see a consultant.

Once you get to that stage, you’re alright, you know - you know the plan. I mean a GP can’t give you a plan, and each practice has a budget and I think a lot of it comes down to money at the end of the day. But you’ve got to keep pushing.