Interview HF08

Age at interview: 69

Age at diagnosis: 67

Brief Outline: Cardiac arrest 2001. Dilated cardiomyopathy 2001. Heart failure 2001.

Background: Retired secretary; widowed with 2 children.

She carries a copy of her ECG printout with her in case of emergency.

Yes, my regular monitoring is at a hospital, and that's very close and very reassuring, because I know that if I get into trouble I can just go through and ask them to help me. Its quite intense monitoring, a lot of tests are done, scanning and... blood tests, blood pressure, body scanning and things and they get the history of it and its... I have an area which I've accepted now, and don't get afraid, but it's a blockage as well. It's something to do with the electrical impulses and the nerves and valves wherever they are, just go a bit askew and block themselves out, and that always shows up on the ECG. So if I carry an ECG chart with me wherever I go and a list of all my medications, so that if anybody else takes my ECG and suddenly finds this blip in my graph, I say, 'Don't worry its just my blockage you know, its been there for yonks, you know'

Yes I do take the ECG graph with me, 'cos if I ever, and the rest of my medication, because if I ever was in trouble in another town, and I had to go into an A & E department, if I collapsed and I couldn't breathe and I had a real major oedema problem, they take ECG's and they come across this blip which is not a very nice looking one, I can say to them don't worry I've had it before, its it's a it's a left bundle blockage (laugher) all these you know veins all blocked together, its like a M25 blockage, you know.  
 

Was reassured that there was something that could be done for her at diagnosis.

I was told I had heart failure at the [hospital] when they did the angiogram. I always thought heart failure was really the bottom line, you know, you were then going to just die, but you don't apparently (laughter). You can creep along and do very very well. You get the medication right and your  weight and your diet and you know, behave, you have as much chance as somebody who has faulty valve or arteries and has you know stents and pacemakers you know you can, if its heart failure, be quite successful. So I was alarmed because I wasn't expecting that, I thought it was more angina, and then when they said it was cardiomyopathy and was dilated, I thought that didn't sound too healthy having a heart that was enlarged and not functioning properly, but then they said not to worry so but then it was all going happen with medication and eventually with a  pacemaker.  

In the past when you didn't have the pacemaker, you had to wait for a heart... and have a transplant, and then start all over again with a healthy heart, but now medicine and sciences and all the various areas where they know what they can do powerful medication, the right ace inhibitors and beta blockers, they have all these pacemakers available now, so you can still enjoy your own heart with a pacemaker ticking away for you giving you the electrical impulses and synchronising your beat, your heart beat, so therefore you can still, you don't have to wait for another heart. You don't have to, its not that serious. There is so much on the market now apparently in that field of pacemakers. So when they said it was heart failure and know how I can be able to have  a successful life, I thought well ok, just go with it, we know what it is and just try and understand it. 

Describes her ideas about the causes of her dilated cardiomyopathy.

When... I came out of the hospital in [name] and was asked to see my... a cardiologist in my local hospital here and the local cardiomyopathy association which happened to be near to me as well, which was a great help... I was all very confused because up to this time I had really been far more involved with my husband and his illness and then suddenly the tables were turned and it was me, you know, and having to cope, and fortunately he was in a nursing home so I didn't have that worry, or that, you know battle, trying to get him a place somewhere in a home, So that in a way was the reason we felt my condition was probably brought on, even through genetically, the genes being there, or could be through a virus, or stress or a congenital heart disease and this can be with you all your life and it can you know materialise until a major problem early in life or in later life, with me I was fortunate I had got my 60's and then it all suddenly reared its head.  

But I just put it down to stress, but when I look back and discovered my father died as a young man at 42 of heart condition maybe he had the same sort of cardiomyopathy disease, and there are four different types of cardiomyopathy, so therefore it could be genetic. And it could be that I've had it, but didn't know! 

She describes how it felt when she had oedema that led to a cardiac arrest.

July 2001 it was quite a warm summer and I was suffering from breathlessness and  I thought it was because of the heat of the day and my husband had been ill for several years, about 8 years and I was looking after him and I just felt that my feeling of unwell was due to the distress there. But on the Sunday morning I woke up and I felt quite ill, I felt a sort of crackly sound like (laughing) crunching of crystal (crunchy noises being made) sounds and I thought that was silly because I had been in bed and had a good night's sleep and I woke up, and said to my son I'd like to be taken into a hospital to the Accident and Emergency department because I didn't feel well, which he thought was amusing because I... you don't just go for that reason. And we did, we went in, and whilst I was there I took ill, and the cardiac arrest you know, happened. At the time I thought the pain was just like an angina pain, but there was obviously more involved because I felt this fluidness... in my lungs, and I had a spell of vomiting, which was a frothy fluid, and blood which was the lining of the lungs. And at the time I didn't quite understand it, now I do know and can appreciate, it was the oedema which was the lungs filling up with water and that is a feeling of drowning in your own... within your own body which is rather frightening.  
 

She describes her angiogram and why she found it slightly uncomfortable.

When I went into the [hospital], that was four hour tests where they put a wire through you in the groin and the wire goes (which is not very pleasant), miles of it, into the heart, and those tests show the various areas where [cough] they can put the wires for the pacemaker. There is a kind of dye that goes in as well because I was able to look at a screen facing me, there were 7 screens in front of me (a whole bank of technicians who were, it was quite impressive, all working in different areas of their particular jobs of the screens), and the actual bed, it wasn't a bed actually, it was sort of table I was lying on 'cos the wiring job they called it (I don't know why) was very narrow and they had... cameras and screens above your body, below your body so you had pictures from both sides of you and you had to be still, I was still for about 4 and a half hours. So that was really not very nice at all. But I was able, I was conscious of it most of the time and able to see what was going on and there was things floating around and then when it came to taking the wires out, they had problems, because I had very curly veins [laughter] that took some time, not a very nice test at all, but it gave them the answers they were looking for.  
 

She balances her diuretics with her fluid intake and to avoid dehydration.

Yes the diuretics, I think the Ace inhibitor does that as well doesn't it, but I'm not terribly sure, but I think it does make it dehydrate, so you have to have enough fluid, but I have diuretics and to get rid of excess fluid, so you have to take in fluid as well (laugh). So to keep the kidneys on the right track otherwise they get too dehydrated and then you can be in trouble.

Can you tell me a bit about the diuretics and how you take those?

Well I used to have two every day, two tablets, and I found that I was in a lot of constant you know trots and things and then they cut it down to one because I was getting peculiar side effects and dizziness, and I'd had more kidney blood tests done, and there was an area where the graft didn't show the right figures it should have had and the doctor said to me that I should really be drinking more water. But the fact that I wasn't drinking enough water he said he would try cutting down the diuretic to just one tablet and I've been on one tablet ever since and that seems to be helping. 

 

Describes how her bi-ventricular pacemaker works.

So that's what happened. I'm on medication now. I'm also being looked after by a hospital in London for a programme for a type of pacemaker, which will help resynchronization of the heart muscle - give it the right messages so it does the right thing - and it synchronises the input of the oxygen and the blood flow to the lungs so everything gels together and they all get the right messages and behave. And then the medication itself will be successful. If not, you get wired up, and you have a pacemaker that is new but is still being quite successful in its early days. You have a situation where you have the pacemaker, resynchronizing the heart muscle and it is there for life. You have the battery changed every few years which can be you know not too difficult a problem, but it does mean that your quality of  life improves and your you hopefully you live longer!  So there's always a lot of help around and with cardiomyopathy with four different types, you just have to pinpoint the one that you have, and therefore your heart failure can be regulated and kept under a satisfactory control, so you then do benefit from your medication and/or the pacemaker. 

She describes her cardiac rehab programme which includes a session of relaxation.

I do also go to the hospital every week, twice a week on a Tuesday and a Friday for exercises, and that's through the Cardiology Department Rehabilitation, because I had a session of rehabilitation after my illness was diagnosed at my local hospital and that went on for 7 to 8 weeks and a spin off from there was that I had to carry on with exercises, and that is controlled... with a nurse, who is aware of each one of our conditions and our shortcomings and she knows I have low blood pressure and I can keel over, so she stops me doing certain exercises in case I land flat on my face! But its all very reassuring  and very good, if you can make the effort  to go to the hospital or to a gym or wherever you have to go to, and do the exercises twice a week you know for an hour each time, it's very good and you feel better for it.  

Yes I do feel tired. I do feel tired quite easily. I don't know whether its just that I'm getting older... next year I shall be 70, so I think maybe that's my you know... something I should accept and think well why shouldn't I feel tired, I've got every right to be tired (laughter), you know I should  sort of just sit down and pick up the paper or just have a snooze. Part of the... weekly exercise we do at the hospital, they tell us we should have half an hour each day of doing nothing what they call it 'stop, flop and drop', and absolutely unwind and its stop, flopping and dropping. It does the trick. So I say to myself, well come along, just do that then and I've got  half an hour and put everything out of your mind and it really is magnificent because you do unwind and you feel sort of a new life and rejuvenation and you feel you can carry on the rest of the day what you have to do so its important. So I do feel tired, and then I think well I should 'stop, drop and flop' and it works.  
 

She has accepted that she has to pace herself with housework.

I don't mow the lawn, my son does that I don't do any heavy gardening. Vacuuming, I have a lady who comes and helps me in the house, she does the vacuuming. I do a lot of tidying, even changing the beds we do together because of turning the mattresses and things. Well its taken the best part of a year to accept all this because I know if I did try to do them I shall puff and pant, and I shall have to sit down and then think well you silly girl you know you shouldn't have let yourself be in that condition. So you pace yourself, I have learnt to pace myself, and I get signs in my breathing just how far I've been and then I think well OK that's it we'll stop now. So... moving furniture around you know, doing things... standing at the kitchen cooking for long times, I tend to cut that down and do them in spells. I don't have a huge baking day. Well standing there you know all day, you know baking. But you accept that, you get, you can manage quite successfully you just work your way around it.

She knew she had to make an effort to help herself physically as well as mentally and that she...

Yes I have changed. Yes, because my husband was ill for 8 years and everything revolved around him and when I was ill nobody could believe I was ill, and thought well it can't be me, its never been me - I have to be the strong one. 

But it can suddenly happen and maybe sometimes these things happen for the best 'cos you have to start taking notice of your own bodily... you know, requirements and sort yourself out, and you don't get another chance of it. You know I've got another chance and to be able to come through the initial scare when I had the, what I call this time, is cardiac arrest. So I've got to give myself the best chance and really do the things that have been recommended, but I have changed, in many ways. 

The other thing you are supposed to do which is a bit strange is to look after yourself personally and make the most of yourself, because when people say to you oh you do look well, it makes you feel well and because you put an effort into yourself and into your clothing and into your makeup and into your hair and you change your hair style and change everything and you're different, they say oh you've lost weight, you look different, you look well and you think well I do believe them, I must look well, and it makes you feel good and if you feel good then you're sending the right messages to your body and it seems to work. You know you suddenly find that even if you are in bereavement, as I've been in bereavement, you tend to still feel quite... well at times, you know, and that's probably, and you have friends and neighbours and your children and your family are very supportive and they will tell you if you look awful!