Amy

Age at interview: 25

Age at diagnosis: 22

Brief Outline: Amy has chronic pain and fatigue, diabetes and asthma, and has experienced a brain injury. She spent 7 months in hospital in 2013 being treated for necrotising pancreatitis, a life changing event resulting in the removal of most of her pancreas.

Background: Amy lives with her family. Her health problems mean she is currently unable to work. Ethnic background: White Welsh.

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Amy’s current health problems relate largely to a 7 month stay in hospital, 3 years ago, when she spent several periods in ICU and underwent radical surgery for necrotising pancreatitis. In this sense, her experience contrasts with many people living with multiple health conditions whose problems increase gradually over a lifetime:

“I’ve got pain in my feet and my arms and things like that now. …It’s quite mad that you go in hospital one day and then seven months later you come out and everything is slightly different.”

Some aspects of Amy’s health have got worse since her long hospital stay. She describes her experiences as a “constant fight,” both with reference to physical symptoms (pain, fatigue, feeling sick) and depression related to the fact that her illness meant she missed out on a full-time job that she was due to start as she went into hospital. She is critical of some aspects of the care she received whilst in hospital and long waiting lists for psychiatry, counselling and pain clinics. She feels that patients in hospital need to be listened to more and given better explanations as to what is going on. She speaks more highly of her GP who she sees every couple of months and is viewed as “very understanding”. 

Amy describes in detail how she copes with the challenges brought by her ill health. Her mum helps her with the 40 tablets she has to take each day. She tries to keep busy and be as positive as she can. She gets information about health online and is a member of a patient support group.

Amy was admitted to hospital and eventually found to have necrotising pancreatitis, although the reason for it is not known.

I went into a hospital in… about three years ago, and ended up having necrotising pancreatitis, and I was in hospital for about seven months, and I was in and out of ITU quite a lot; my doctors used to tell me that I died three times during it, so it’s something that people can say. But, I have chronic pain now. I have asthma, diabetes, chronic fatigue, and depression and anxiety, for I’ve got a couple of mental health problems as well. I was fine before I went into hospital but because I was so poorly I came out and a lot of my…yeah, I’ve got a bit of a slight brain injury as well, I’ve got… a lot of my pain is neuropathic pain; so I’ve got… they’re kind of looking into that at the moment and getting assessments done and things like that.

So does everything, all the conditions that you have, all stem from this…

Yeah.

…hospital episode?

Mm.

And that what…what was the reason for that in the, in…in the first place?

They don’t know, I had idiopathic – I think that’s the right word – pancreatitis, there was no reason for it. Normally I think it’s gall stones that a lot of people go in with; but they just had no idea. It took them a month to kind of diagnose that I had pancreatitis and by that point I wasn’t breathing and my… wasn’t breathing properly, I had a… a lot of lack of oxygen; and that’s kind of where the brain injury stems from. And then I was in intensive care for six weeks, and then came out for two months, and then I went back and had three spells in ITU. And I lost all my hair because of it as well, so that was quite weird.

Because of the drugs that they were pushing through me that I’d had rapid, so everything was going towards my heart, all the blood circulation, so I have, I’ve got pain in my feet and my arms and things like that now. So, yeah, it all stemmed from there. It’s quite mad that you go in hospital one day and then seven months later you come out and everything is slightly different.

Amy tries to be positive but worries that things will get worse in the future. She tries to keep her thoughts to herself rather than discussing them with family members.

I try to be as positive as I can, but then at the same time I know that with age things are going to get harder, because I’m going to have kind of more pain as I grow up, and sometimes I use my walking stick, but I try not to use it at all, because I can’t… I don’t know why, I kind of fight it; it helps me so much, it gives me a lot of support, but I have… it’s this big wooden one, and I just feel embarrassed when I’m walking around with it; so I sometimes… my pain can be awful, just because I’m too proud to walk round with a wooden walking stick.

I do feel that sometimes…sometimes I feel that I’ll never be able to work again, that scares me, because even, oh, growing up, I’ve volunteered. I’ve volunteered since I was about 11, to 18, so I’m used to working and kind of doing… and courses and things like that. So now with… with my brain injury I kind of… I strug-, I used to love reading, I did English literature for my A-levels, and I kind of every ten pages I’ll have to go back five to know what happened, to remember what happened again; and that kind… it’s kind of… And I always worry if that’s going to get worse, so… You see these horrible stories sometimes, like I’m… if your diabetes isn’t the best, if you carry on with it not being good, there are people that have kind of like lost their feet, and things like that, and it’s a bit [pause] it’s a bit scary. It’s… because I think I’m scared because I don’t… I’m positive but I’m scared because I don’t know what’s going to happen in the future. Mm. That scares me a bit.

And I have… and one of the reasons I go to my counsellor is because I found that if I’m going downstairs in my house, before I go to the… down the stairs my instant thought would be, you’re going to fall down there and then you’ll break your neck. And when I closes the door, when I go… if I go out, I’ve kind of half… going to fall down these steps. So I’ve got this constant… kind of like a constant voice in my head, with all these worst-case scenarios, and then I do touch wood, and I do that about 20 times a day, touch wood. Because I’m so… because I know how bad I can get, because I… I was basically dead twice during it, I’m very aware of how things can change. Like when I went into A&E they kind of were like, oh, there’s a four-hour wait; and I said, I’ve got some chest pains as well; and I got seen straightaway, and three hours after that I was being put in the High… HDU and being sent to ITU. So it’s quite mad that if I hadn’t have told a white lie I kind of… I probably wouldn’t be here now.

So because I’m used to the worst-case scenarios I always kind of have that fear. And I… and now that I’m never going to work, and things like that. But I try not to… I try to keep that to myself because if you… if you tell your… if you talk to your mum, that you feel like that, and your family members, and your support groups and things, no, it doesn’t just affect you, it affects the whole family, when you’ve a mental health condition and kind of with any health condition, so I try to keep… That’s probably when my depression is worse than it is, because I keep my fears inside and… I’m positive, but there’s always that person at the back of my mind saying, you shouldn’t be… it’s kind of like a little devil.

Amy values the support she gets from her GP who invites her to book a follow-up appointment after every visit.

I’ve always had a good GP, it just… so hard to get appointments and things like that, you kind of have to wait a little. But my G… I… my newest doctor is amazing, she’s very supportive and she… if I go in, like, to do with my asthma or my chronic pain she’ll ask me to book an appointment for three weeks’ time to follow up. So there’s a lot of support that’s being given to me through my GP.

Amy was hospitalised and found to have necrotising pancreatitis. The level of medical input necessary to keep her alive left her with resulting health problems including asthma, anxiety and depression.

I went into a hospital in… about three years ago, and ended up having necrotising pancreatitis, and I was in hospital for about seven months, and I was in and out of ITU quite a lot; my doctors used to tell me that I died three times during it, so it’s something that people can say. But I have chronic pain now. I have asthma, diabetes, chronic fatigue, and depression and anxiety, for I’ve got a couple of mental health problems as well. I was fine before I went into hospital but because I was so poorly I came out and a lot of my… yeah, I’ve got a bit of a slight brain injury as well, I’ve got… a lot of my pain is neuropathic pain; so I’ve got… they’re kind of looking into that at the moment and getting assessments done and things like that.

So does everything, all the conditions that you have, all stem from this…

Yeah.

…hospital episode?

Mm.

And what was the reason for that in the first place?

They don’t know, I had idiopathic – I think that’s the right word – pancreatitis, there was no reason for it. Normally I think it’s gall stones that a lot of people go in with; but they just had no idea. It took them a month to kind of diagnose that I had pancreatitis and by that point I wasn’t breathing properly, I had a lot of lack of oxygen; and that’s kind of where the brain injury stems from. And then I was in intensive care for six weeks, and then came out for two months, and then I went back and had three spells in ITU. And I lost all my hair because of it as well, so that was quite weird.

Now as far as you’re concerned are these all separate conditions or are they all related to this…

Yeah.

…hospital thing?

Mm.

If you get what I mean.

Yeah. When I think of them, or if people ask me about them, I’ve always – because I was so poorly in hospital – that’s kind of how I work it; because I know I was ventilated five times in hospital, so that it kind of explains the asthma.

Right.

And, obviously my pancreas as well, so that explains kind of the diabetes and the enzyme problems. And I was, with… even though I was on very strong drugs in intensive care I can remember practically all of that, and that, you know, my doctor said it’s very rare that people can remember things so specifically; so that’s got a lot to do with my mental health problems, like my depression and my anxiousness. But, yeah, that kind of hospital stay sums it up a little bit for me.

Amy believes that you have to accept your situation. She tries to keep going with her “fists up” against whatever may come along next. She adapts ideas about managing from others met through support groups.

I think when you… you’ve got to accept the situation that you’re in, that’s definitely as a… from a personal perspective that’s the first thing that you need to have if you’re going to try and keep going day to day; because if you haven’t got the fight you’ll just kind of drop every time, so you’ve just got to keep kind of always go with your fists up, I like to think. So you’re kind of prepared for anything that’s going on. Just I think it’s just natural, you just… I think you learn things from other people as well, kind of like you learn about certain things; with the support group for instance, they’ll tell you things, they’ll put recipes up, they’re like, you know, kind of friendly when it comes to low fat and your diabetes and things like that; so you just pick things up and adapt it to your…your day-to-day life. Mm.

Before consulting with her GP, Amy draws on her past experiences in hospital and on information gleaned from a patient support group. That way, she has a ‘back-up plan’ to suggest if the GP isn’t sure what to do.

I’m interested in, in kind of how involved you are in the decisions that your doctor…

Yeah.

…makes, or not?

Yeah. When I was in hospital I learned a lot with the drugs that I was on and things like that. So when I went… when I struggled with my anti-sickness, there was an anti-sickness pill that wasn’t working, so I spoke to my support group, and I was kind of, well, what anti-sickness would you recommend; and I asked my mum what I was on in hospital. And then I’d go to the GP, and I had like my… it’s not working so can I try cyclizine because that helped me in hospital and they’re kind of like, oh okay then [laugh]. I do…do a lot of research for when I go to the GP, because I think I know my body more than anybody else; they can have you down with a medical condition but you kind of don’t know it until you’ve got it yourself. So I like…I do a lot of research, because I don’t…not that I don’t trust my GP because I really do, I trust…trust her and I like her; but I kind of… I feel that from going through that experience, the seven months in hospital, I kind of know when my body isn’t happy or if it’s not reacting well with a drug. 

Because there was… it was a time in hospital where they were giving me this drug and I was all over blotches and things like that, and they’d be kind of like, we don’t know what done it. So I’m like, have you changed any of my drugs; and then they’d go, we don’t know, you’d have to ask your doctor. And it’s a bit like, well, they’d pushed things through my NG tube – because I had that – but I… I didn’t have a clue what they were pushing in. So it’s a bit like… that’s why I do a lot of research now, because if the person I’m going to for help doesn’t know what to do, I want to have some idea of…kind of like a backup plan.

So if she was kind of like you know, your anti… there’s not many anti-sickness out there, I’d go, well, there’s… and there’s cyclizine, and she’d… she kind of went, yeah, that could work, and… I kind of have this backup plan for if they’re not going to agree with me, I kind of throw some words, and I’m like, yeah, cyclizine worked with me.

Amy found a friendly support group online through which she has made friends.

On Facebook there’s a pancreatitis UK and Ireland group, and it’s basically it adds people who’ve had pancreatitis or relatives, and you can go… If I’m having a bad day I can put it on there, and everybody in the group will kind of comment and give you advice, and we all kind of… well, it’s kind of like a little group of friends, we all kind of advise each other and… sometimes even if you just want to have a moan you can just have a moan, and people are like, oh, I know. And it’s… it’s nice like that. It’s kind of like support but in a friendly way, in a kind of more personal way; and even I’ve met a lot of friends through it as well.

I think you learn things from other people as well, kind of like you learn about certain things; with the support group for instance, they’ll tell you things, they’ll put recipes up, they’re like, you know, kind of friendly when it comes to low fat and your diabetes and things like that; so you just pick things up and adapt it to your…your day-to-day life. Mm.

Following a brain injury, Amy finds it difficult to organise her medicines, so her mum oversees the 40 or so tablets she must take every day. She previously tried to overdose on one of her prescribed medicines.

The kind of way that you have to manage the regimens for all these drugs, is that something that you’ve had to work out for yourself along the way, or…?

My mum does it for me. I had… she counts them, I’ve to have 18 tablets at night, and then I have [pause] oof, about 20, 22, something like that, during the day. But my mum lays them out for me; because of my brain injury I kind of… I used to put an alarm on my phone, but it’s kind of like I’d see that it was there but I wouldn’t…it wouldn’t kind of take it into my brain, so I’ll just… I just won’t take the tablets because my brain’s kind of somewhere else. So she even handles my drugs for me. Also because of my mental health problems as well, because I do have quite low periods, and I think it was about a year and a half ago that I tried to overdose with my Oramorph, so she kind of keeps my meds for that, just to make sure that if I’m having a bad moment that there’s kind of nothing around that can make me feel… make me do something that I’d kind of regret or something like that. Because when I’m ha-, when I’m kind of happy I’m happy [pause] but I just drop low very easily, I can be laughing at one minute and then I’ll be on the floor the next, crying, kind of devastated and… for no reason. So, yeah, she looks after my tablets during… I’ll have to learn soon though.

Amy thinks her GP is understanding and explains things in detail. She contrasts with an experience in hospital where staff did not listen and accused her of being “a drama queen.”

And what is it that you value about your GP?

She’s very understanding, and she kind of…she listens when I talk. I’ve had GPs in the past where they’ll kind of just go, no, we can’t give it to you, or, here you go; and give you a prescription and not really kind of talk to you or tell you what you’re taking and things like that. But my current doctor and GP, she’ll go…if I have to go on any medication, or antibiotics, she’ll explain it down to the finest detail. And she doesn’t like me going unless I’m happy and I fully know kind of what I’m doing now. So in that way she…she listens I think, because in my…well, in my experience in hospital, um, the night I went into ITU the second time, I was aware that I went into multi-organ failure and a peri-arrest, and about five hours prior to that I kind of I knew something was going on, and I was buzzing, and… said, you’re a drama queen, there’s nothing going on; and then five hours later I kind of went into multi-organ failure and stuff. So I really appreciate it when a health professional kind of listens for, like, if I’m having bad sickness she’ll ask me to explain it, and she listens and takes it in, makes a note, and then she kind of goes through what’s best, and I think that’s kind of what a GP should be like, kind of talking to you and explaining and things like that. And then she…she listens really well, that’s what I appreciate the most; because I’ve had so many professionals kind of not really listening; so when someone does listen I kind of…you appreciate them a lot more.