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Daniel

Age at interview: 38
Brief Outline: Daniel was diagnosed 3 years ago with cardiomyopathy and heart failure after experiencing breathlessness. He takes medicines and has an ICD but continues to experience breathlessness and fatigue and can do very little physical activity, which frustrates and angers him. He cannot work and lives off state benefits.
Background: Daniel was a Facilities Maintenance Engineer before he had to retire on health grounds. He has lived with his parents since he became unwell and his relationship broke up. He has two sons aged 9 and 5. Ethnic background: White English.

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Three years ago Daniel started having panic attacks in the night because he couldn’t breathe, then he became increasingly breathless at work. He went to his GP and to the hospital casualty department repeatedly but the doctors could find nothing wrong and suggested it was stress related and prescribed anti-depressants. His symptoms continued to worsen until one day he collapsed at home. He was rushed to hospital, where a CT scan revealed that his heart was enlarged and they told him he had cardiomyopathy and heart failure. Various medicines they tried didn’t work, so Daniel was transferred to a specialist heart hospital where he was assessed for a possible heart transplant. Although he was deemed suitable, a transplant wasn’t needed because, after removing a large amount of fluid from Daniel’s body, the drugs then began to work and his condition was stabilised. The right ventricle of his heart returned to normal size but the left remains enlarged and his mitral valve leaks. The doctors told Daniel that his cardiomyopathy had probably been caused by a virus, although he doesn’t recall experiencing any viral illness before the heart failure symptoms started.

It took Daniel about a year to recover, during which time his company continued to pay his full salary. He tried to return to work but just couldn’t do the job anymore, so had to quit. He was put on a cardiac rehabilitation course but could not complete it. Because he had lost weight during his initial illness, he was encouraged to gain it again but now needs to lose some if he is to remain eligible for a heart transplant in the future. He feels tired most of the time and spends a lot of time in bed, although he finds it difficult to sleep because his brain is not tired. He can do very little activity before becoming exhausted and breathless, so has to pick and choose what he will do each day and relies on his mother to look after him. He has no pension, so he receives state benefits including a car supplied through the Motability scheme with a disabled parking permit; he also uses a mobility scooter; his mother receives Carer’s Allowance. Daniel’s fluid balance is under control thanks to diuretic medicines (water pills) and a restricted intake of fluid in food and drink. Other medicines he takes for his heart condition include warfarin, ivabradine, carvedilol, ramipril, digoxin, omeprazole, and eplerenone.

A few months ago Daniel had a single lead ICD implanted, which is monitored automatically by a machine in his bedroom that sends data directly to the hospital down a phone line. He has had it checked and downloaded twice at the hospital so far but doesn’t know how often this will happen in future. Daniel sees a community heart failure nurse about once a month in a clinic run from a local GP surgery; he can also contact the nursing team by phone during working hours if he needs advice. He sees a cardiologist at his local hospital about twice a year. He sees the transplant team at the specialist hospital, where he goes about every three months for a thorough check-up, which includes a physical examination, blood tests, an ECG, chest x-ray, weight, blood pressure and heart rate measurements, and sometimes an echocardiogram and a right heart catheterisation —insertion of a special catheter into the pulmonary artery in the heart to measure the blood flow and pressures inside the heart and lungs. He can also contact the specialist hospital team at any time, including out of normal working hours, if he has concerns. Once a week he checks his own weight, blood pressure and heart rate, using equipment supplied by the local hospital, and sends them the figures by text. He receives a text reply stating whether things are stable or he needs to contact his heart failure nurse. Daniel also sees a GP once a year for a general check-up but the GP doesn’t alter any of the heart failure treatment. Because he takes warfarin Daniel has a blood test to measure his clotting time once a month at the GP’s surgery. 

Daniel’s heart failure is always on his mind. He feels frustrated and angry that he cannot do things that he used to enjoy, including playing games with his children, although he spends more time with them now that he isn’t working. He continues to take an anti-depressant and also speaks to a therapist from the community heart failure team who visits him at home every couple of weeks when he feels particularly low. 
 

Daniel says that each time the dose of his beta-blocker and ACE inhibitor are increased it makes him ill and his body doesn’t seem to adjust.

Daniel says that each time the dose of his beta-blocker and ACE inhibitor are increased it makes him ill and his body doesn’t seem to adjust.

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And they should slightly and probably listen to you a little bit more, in terms of actually how you feel, how it's affecting your day-to-day life. Because, like I said, they, they keep, the consultants at the transplant centre keep trying to up my beta-blocker, the carvedilol, and the ramipril, which are the two most important pills. But every time they do, my body rejects it, and I have a terrible time trying to get back to some kind of being stable. But they don't, they don't want to listen to the fact that I, I just simply can't get on them levels.

When you say your body rejects it, what happens?

It just sends - I feel nauseous, bed-bound, can't walk, out of breathlessness. All the same symptoms. It drops my blood pressure. Pulse goes through the roof. Just become unstable. From being quite stable and feeling quite well, just simply trying to increase those particular pills can cause me to become unstable. But I try and ride it out, because they always do, one of the beta, the beta-blockers are horrible drugs to increase, you always feel ill for a little while, but it's supposed to go away. But it just doesn't with me. I mean, the heart failure nurse understands that. And we both despair when they try and up them. 
 

Daniel may be offered a transplant if his condition worsens but he is unsure about the balance between quantity and quality of life.

Daniel may be offered a transplant if his condition worsens but he is unsure about the balance between quantity and quality of life.

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Well, initially when I came home, it took a good year to recover, to get myself back to being able to walk properly. And then ever since then, I've just kind of remained at one level, with, with having little dips in my health. But then I don't seem to get any better, or sort of any worse, as time is going on. They do tell me that I will have to have a heart transplant at some point, but it's just a matter of time before they, they make the decision for me to go on the list.

What will determine that, do you think?

Being well enough to have the operation and, and recover after. But also being ill enough to need the operation. 

That must be a very difficult balance.

It is. And I often think whether I'd want one now, because with having two small children, there's lots of things I'd like to be able to do with them. And I know a heart transplant would, you know, you can virtually have a, a normal life afterwards. And I'd be able to do the things I want to do with them, you know, kick a football around, and take them swimming and what have you. But they kind of only guarantee a heart transplant for ten years. I think that's something to do with the rejection therapy that you take. Although there are people who live a lot longer with them. So you, the balance for me is to think you live longer, or you have a, a better life now.

Mmm.

But it's not my decision, it's out of my hands.

Do you have any say in it? 

I don't know. I really don't know. I don't know if you get the choice to reject being put on the list or not. But I suppose if it's needed and they've decided, I would just go with it. 
 

As well as seeing a heart failure nurse monthly and a local cardiologist twice a year, Daniel has an in-depth check-up with a transplant team every 3 months.

As well as seeing a heart failure nurse monthly and a local cardiologist twice a year, Daniel has an in-depth check-up with a transplant team every 3 months.

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I am under the watchful eye of a heart failure nurse and her team. There's a couple of them, who they, I see them about once a month. More if I need them. I can also phone them for advice, and but we'll quite often speak on the phone, and change the pills, my pills, my medication around slightly, just depending on how I'm feeling. And in addition to that I'm monitored probably once every six months by a cardiologist where I live. And that's just a very brief check-up. And then because I'm under a transplant team at another hospital out of the town where I live, I see them once sort of every three months, where they do a more in-depth monitoring. I get ECGs and right heart caths, and a, what's it called? - Echocardiogram. Chest x-ray. That's, that's quite in-depth.
 

Daniel has been loaned weighing scales and a blood pressure monitor and sends his measurements by text to the hospital once a week.

Daniel has been loaned weighing scales and a blood pressure monitor and sends his measurements by text to the hospital once a week.

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And then also I monitor myself from home. Every Monday I send in a text to a, a system called Flo. And I send in my blood pressure, my weight, and my heart rate. And they, that'll send a text back telling me whether things are normal or I need to call my heart failure nurse. 

Mmm. That's very good.

Yeah. So I was given, at the start of that I was given a blood pressure monitor and a nice expensive pair of scales, set of scales, by the heart failure team. 

So this is at your local hospital?

Yeah, that's run through the local Trust, yeah.

And how long are you meant to carry on doing that for? Is that indefinite?

Yeah, that would be. That's indefinite, yeah. They can up the frequency of when they monitor. They could do it every day if needs be. But I just do it once a week at the moment. Initially I did do it sort of twice a week I think. And then they just dropped it down to once a week. 
 

If he feels poorly Daniel’s first port of call is his specialist nurse but he would like access to her out of normal working hours when he has to call his transplant team instead.

If he feels poorly Daniel’s first port of call is his specialist nurse but he would like access to her out of normal working hours when he has to call his transplant team instead.

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So if I was to start feeling poorly, and my blood pressure was to drop significantly, then I would, then I would panic and seek help. But in addition to that as well, if I was to hold onto fluid, if I noticed that my ankles were swelling up, or I felt a pressure in my abdomen, which is more normal for me, which is, that's where I hold onto my fluid, I would know that I was holding onto the fluid, and then I would seek medical advice, help as well. 

Who would you contact?

Probably the heart failure nurse at first. But that's only, I can only contact her in normal working hours Monday to Friday. But after that, the transplant centre, straight away, and ask to speak to a consultant.

So you could phone them round the clock, could you?

Yeah. Yeah. If anything significant, they'd just tell me to come straight there.

How quickly do you think you would do that if you were worried? 

Almost, straight away. There's been a few times when I, when I've called them.

What made you do that?

Just because I felt dreadful [laugh].

In what sort of way? Can you describe it?

It's difficult to describe, because I never get pain. It just, when I'm at the lowest and I feel ill, it's almost like having flu, times ten. You feel awful. And then the classic symptoms of heart failure come back, like, you know, you can't lie down on your back without gasping for breath, or you wake up gasping for breath. You feel your heart pounding away and you start to hold onto fluid. 

I don't think there's really much, much more that, that they could do for me, apart from me being assigned, you know, a nurse 24 hours a day, 7 days a week. I think I'm really, really well looked after. Really well monitored. 

The, I do have a gripe, with it being the weekend. If I've got a problem at the weekend, then there's only really the transplant team. The out, out-of-hours obviously the GP surgery you can call. I wouldn’t, and if I want, you know, to, I would want to avoid casualty sometimes. And there's, I can't, there's no heart failure nurse you can call for advice at the weekend. So weekends can be a little bit… I don’t know what the word is.

Do you worry about the weekends, or do you…?

No, I don't worry. But like there's been a few times sometimes when I've felt I've needed to speak to the nurse, and I've not been able to, so I've had to wait until Monday. Sometimes, initially when I was going into heart failure, I suffered with the panic attacks. I've no idea why. Apparently the doctor said it was something to do with the heart rhythms just causing, causing them. But there was also a lot of anxiety involved as well. And when I, when I feel ill, I can feel very anxious. But sometimes, just a five minute conversation with the heart failure nurse can stop that, and I can feel almost really well straight, you know, I can feel better straight away. Just, just a professional voice, just to reassure you, calm you down. But sometimes, obviously I can't always have that at the weekend.
 

When Daniel has longer intervals between check-up he feels reassured that his doctors believe his condition is relatively stable.

When Daniel has longer intervals between check-up he feels reassured that his doctors believe his condition is relatively stable.

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What if they wanted to change aspects of the way they were monitoring you, how would you feel? 

It depends whether it was optional or not. And if it was going to, if I thought it would improve anything. 

What if they wanted to see you less often?

Well sometimes they do, sometimes they do see me less often. And that's sometimes quite reassuring to know that they think you're obviously stable enough then not to see you. And then vice versa if they need to see you more. 
 

Daniel cannot walk far so is dependent on his car, which he obtained through the motability scheme as part of his state benefit entitlement.

Daniel cannot walk far so is dependent on his car, which he obtained through the motability scheme as part of his state benefit entitlement.

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How much can you walk? Well, I think you said earlier, about a hundred yards, and you're done in.

It can be less. Sometimes it can be less. Sometimes it can be ten yards. Sometimes it can be, there was times during this last winter when I was able to walk the dog a mile round the park, with regular rests on benches. But that's something I wouldn't be able to do at the moment.

So you're very dependent on your car.

Yeah. 

Presumably - do you have a blue badge?

Yeah, I've got a disabled parking badge. And also the car's supplied to me by Motability as well.

Excellent. 

It's a lifeline really, because it means I can see the kids when I need to see my children. Although I do virtually see them every day [laugh].

Do they live nearby?

It’s not far away, no.

So, how did you find out about the Motability thing? I mean was that just offered, or did you have to ask?

I actually didn't apply for Motability. I was applying for the Personal Independent Payment, which has taken over from the Disability Allowance, isn't it? And then I, I had a home interview by one of their inspectors, I suppose. And it was her, I think, filled out that side of it for me. I wasn't expecting it at all, when, when, I was quite surprised when I was awarded it.

Great. And so you get that PIP benefit as well, then?

Yeah, yeah.
 

Daniel found it difficult to come to terms with being unable to work and having to rely on state benefits; he felt he might be stigmatised.

Daniel found it difficult to come to terms with being unable to work and having to rely on state benefits; he felt he might be stigmatised.

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It, it's difficult. It affects, you know, when you come home from hospital, your mind is still all about work. You know, when, it takes such a long time for, it's almost like you've been indoctrinated to being a robot, to go to work. That's all I thought about. ‘Got to get back to work, I've got to get back to work’. And for a while, the thought of being on benefits horrified me. You know, ‘Oh, what's everybody going to think of me, if I have to go on benefits, you know, and I'm not working? God, there's a stigma attached to that’. And it does, it takes, it takes a long time. And I used to be quite, you know, turn my nose up at people that go, "Oh, I'm unemployable now, I've been off work that long". And I can understand what they mean now. Because if I was to have to go back to work, which would be a possibility after a transplant, I would find it incredibly difficult. 
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