Paul

Age at interview: 68

Brief Outline: Paul was diagnosed with dilated cardiomyopathy 15 years ago. He has a biventricular pacemaker, takes minimal medication and can still do everything he wants to despite becoming breathless and tired. He helps run a local support group and gives one-to-one support to other people with cardiomyopathy.

Background: Paul is a retired business start-up advisor. He is married with adult children. Ethnic background: White English.

More about me...

Paul was diagnosed with dilated cardiomyopathy (a cause of heart failure) fifteen years ago after experiencing chest pain when cycling uphill and having breathing difficulties at night. The diagnosis was not explained to him, so he searched for information on the internet and contacted heart support charities. On finding there was no local support group for people with cardiomyopathy, he set one up that was hosted by the main hospital in the area.

Paul was started on tablets and it took two years to achieve the optimum level of medicines to control his condition. He currently takes a beta blocker in the morning and an ACE inhibitor with his evening meal. Previously he also took furosemide then spironolactone, but has now stopped both. Soon after diagnosis he had a two wire biventricular pacemaker fitted, which made little difference to him, but was later replaced by a three wire one, which immediately got rid of his symptoms. He is now on his 5th pacemaker. He took part in a trial that was investigating whether injecting stem cells could repair damaged heart muscle. The treatment made no difference to his condition and he later learned that he had received a placebo rather than stem cells. He feels frustrated and angry that he has never been told the results of the trial.

Over the years Paul’s condition has deteriorated a bit and he gets breathless and tired but he can still do everything he wants to do. He is on minimal medication and does not consider himself disabled by his condition even though he has a disabled parking permit. He retired about 18 months early from work after being offered a financial incentive to do so. He applied for Employment Support Allowance (ESA) and was initially turned down as he was considered fit to work, but it was granted on appeal. He worked a few hours a week (as allowed on ESA) until reaching proper retirement age. 

When he retired fully Paul and his wife moved to a different part of the country where he feels less supported by the hospital system than he had done before. He no longer has regular check-ups with a cardiologist and has to ask for an appointment or specific checks to be done if he is concerned. His latest pacemaker is monitored every night by a machine under his bed. The data is downloaded remotely every six months but if anything goes wrong in the meantime the technicians will receive an alarm message from the machine prompting them to contact him. He feels reassured by having a face-to-face check-up with a practice nurse annually, who measures his blood pressure, weight and height, listens to his chest, does a blood test and asks how he is. He weighs himself every week or two for his own interest. He occasionally measures his blood pressure at home if his symptoms are unexpectedly worse. He has little faith in GPs’ understanding of cardiomyopathy and his first port of call in the event of a problem would be the heart failure nurse at the local hospital.

Paul believes his cardiomyopathy was probably caused by his family history as his father and several of his half-brothers had died of heart problems. He accepts his condition as he can’t do anything about it. He recently had an operation with a general anaesthetic to fix a paraesophageal hiatus hernia with the aim of improving his breathing, but it didn’t. He has arthritis in his feet, which limits his mobility a bit. He helps to run a local cardiomyopathy support group and provides one-to-one support to other people through Cardiomyopathy UK.

Paul explains that it took a couple of weeks for his body to recover from each increase in dose of medicines; it took 2 years to achieve the optimum level for him.

Now as far as my personal circumstances was going on, my cardiologist needed to get me up to what he called an optimum medication level. Unfortunately every time he increased the level of medication my blood pressure fell through the floor, so it took a week or maybe two for my body to get used to the, the new level of medication, and everything was fine and we carried onto the next bump up. Well that took two years to get that sorted. 

Paul and his wife use their breakfast and evening meal as reminders to take their medicines.

Because of the fatigue it’s been suggested, or it was suggested quite a few years ago now that I split the bisoprolol and lisinopril at either ends of the day. So I have the bisoprolol first thing in the morning; my wife and I have a cup of tea first thing in the morning, so I’ve got them beside the bed and it’s just part of the routine to take the pill. And the other one I take in the evening with the evening meal, so that’s the catalyst which just reminds me that I need to take the pills. Plus the fact that my wife’s on pills as well for her diabetes, so we take our pills together. 

After moving to a new area Paul feels less well supported by the professionals than before and has to remind them when tests are due.

When I actually got to retirement age my wife and I decided to move to [town in different area] because that’s where her family is, so we, we moved down and I went to the local hospital, obviously, and got on, on their system, which as far as monitoring is concerned, personally I’m not too impressed with  what they do. I can’t really say I’ve got any complaints, but at the same time it’s, I don’t feel as well supported here as I did with the original hospital. I do find that I have to make the running. I’m the one who says, “Has this been done?” “Isn’t it about time that I had an echocardiogram?”, “Next blood test is due”, etcetera. It’s not coming from them. Also I was due to have my latest pacemaker change at the same time as I was due to go in for another major operation actually on my stomach, and the dates were likely to clash, and the two departments weren’t talking to each other, so they didn’t actually realise until I said about it that there may be a problem. And in fact on one occasion an echocardiogram that, appointment that I had been given fell through the floorboards and they’d just simply forgotten all about it. And again that was only through, through my contacting them that we managed to get it sorted. The actual monitoring, the actual tests that they do I’ve got no complaint with at all. The information is there and, and I do get the information eventually, and again though, I have to ask for it usually rather than them supplying it, so that’s about it really. 

Paul only ever measures his blood pressure if he has an ache in his chest that won’t go away or if he feels particularly fatigued or out of breath.

One of the symptoms with DCM [Dilated Cardiomyopathy] is what I term heartache, which is a minor chest pain. It’s so minor that you think to yourself, ‘Is it really there?’ Which is why I call it an ache rather than a pain. And it is a symptom of DCM and I’ve had it for years. But it normally goes off within sort of 20 minutes to an hour, something like that, and it’s not a problem. If that persists then I’ll take blood pressure and I do have a wrist monitor that I use. But other than that, or unless I feel particularly fatigued or particularly out of breath, because you do have better days than others, or worse days than others, but other than that I don’t, don’t bother normally. It just sits in the bedside drawer and that’s it. It’s there if I need it.

And again, do you keep the records or not?

No. No.

And you do it for your own interest, it’s not something you’ve been asked to do?

No own interest. And it’s simply that, you know, if it’s particularly low or whatever then I’ll get on to the heart failure nurse and say… 

Although he qualified for a blue badge disabled parking permit due to breathlessness, Paul doesn’t consider himself disabled.

I’ve now had five pacemakers, four of which are bi-ventricular. And again I’ve been lucky, I was one of the ones that really I’ve not had a bad time of it. I know of a lot of other people who have had a really rough time and use shed-loads of medication. And I’m at the situation now where, although I’m a blue badge holder, I would still consider myself not severely disabled or even disabled really. 

How far can you walk?

A couple of hundred yards on a level surface before I start getting out of breath, although the, on the, on the day that I went for my disability assessment for the blue badge, it was held at the local library actually, and the lady doing the assessment, who was an industrial qualified person who was doing this kind of thing all day every day by the sounds of it, accompanied me on a walk round the library and she noticed that I was starting to get out of breath within about 30 yards. And by the time we’d got back to the office where we were doing the assessment, and unbeknownst to me, she was actually timing how long it took me to recover from being breathless. And it took me ten minutes to recover. So I would say that that was a particularly bad day, a good day from the assessment point of view, but I’m not usually that out of breath, although it does vary.

After taking early retirement Paul applied for state benefits and was initially turned down but after a successful appeal had his benefits backdated.

My last seven years of work I was a business advisor for start-up businesses specialising in social enterprises, for a local enterprise agency up in [county]. We used to have staff meetings fairly regularly and often went away to have the meeting, so it was a bit of a social event as well. And at one of those events we were in something of a tower block, it was, about four storeys tall, and lunch was going to be on the roof, ‘cos it was a buffet and it was the middle of summer, no problem with that. However, there was no lift so I had to climb the stairs. Well by the time I had got to the top of the second flight of stairs I was pretty much out of it, I was really out of breath and gasping. And at just that particular moment my boss happened to come past, enquired if I was okay etcetera etcetera, which I told him it was not a problem, I just needed to rest and then I’ll be fine. I actually made it to the roof and had lunch etcetera etcetera, no problem. Within six months of that event, and I’ve got no nothing to substantiate the claim, I was offered early retirement with quite a substantial financial incentive. And as my cardiologist had already said to me at that time, “You’ve now reached the end of medical intervention, and really there’s nothing left for you now other than a transplant as and when that may be necessary”, I accepted the early retirement package, so I did retire early, about 18 months early, got my ESA. What’s that?

Employment Support Allowance.

Employment Support Allowance, that’s where the, eventually, because I went through the Atos assessment, which was quite frankly laughable, absolutely pathetic. I rather suspect that it was in line with their contract as written by the bureaucrats in London, but as far as assessing me as to whether I was fit to work or not, quite frankly it was just laughable. Also the person doing the assessment was, had nothing to do with, with heart conditions whatsoever, I think she was a physiologist but there we go.

So my initial assessment from Atos was that I was fit for work. Well I wouldn’t accept that and said that I would go to tribunal, and got supporting information from doctors and other professional people, and hey ho they looked at my file again, my case and decided that actually I wasn’t fit for work and I did qualify for ESA at the higher level and it should be backdated 18 months. So I actually ended up with them paying me an additional £1800 as a lump sum, and I think it was over £90 a week, but anyway, which was very useful. Also under ESA I was, I was able to work up to a certain limit of earnings, so I actually took a part time job as a driver for a blind lady who was going round demonstrating how to use computers to people who were losing or have lost their sight. So that was quite a useful and interesting and informative period as far as I’m concerned.