I’m very lucky because my cardiologist, he says that you know sometimes more about these things because you’re so used to it, you’ve got carte blanche to do what you feel is right. And this is the situation I’m in with the diuretics. At the moment, you know, I sort of increase and I have to weigh myself every day. And if I weigh myself and my weight goes up then I take another half of diuretic. If it comes down then I go back to my normal dose. But I kind of sort of dot all over the place with it and he’s happy with that.

And I also I take diuretics, I take three a day. Cos I get up in the morning, I weigh, and then I adjust my diuretics to my weight. So I do that myself, you know, because, you know, cos a nurse had told me what to do, so I like to feel, you know, help yourself a bit.

So do you do that every day?

Every day yeah, yeah.

And did you do that off your own bat or did they ask you to do it?

No they asked me to do that, yeah.

I weigh myself every day, and if I have an appointment with the cardiac nurse, Oh we’ll weigh you. I said, Well I’ve weighed myself today. I’m not going on the scales again. And I think to be treated like that is just awful. They, you know, that. So I tell them what I weigh, which my silly scales only do pounds, and that, you know, they have to convert it into kilos. And I think that, for goodness sake I’m an adult , I’m not going to, I’m not going to fiddle the books. What’s the point? And they should take. So I don’t go on their scales, which upsets them a bit.

Oh so you don’t ever go on their scales at the hospital?

No, no because I weigh myself at home. And that is a weight which I do before I get dressed in the morning. So it’s a very good weight. Whereas every time I go and see them I’m wearing something different. So their weight is all over the place and not really a good guide.

You don’t get fed up with just having to do that as part of your routine?

No. I mean I go into the front bedroom, draw the blinds, go on the scales and that’s it. I’ve stopped writing it down. I wrote it down at one time and that was a, that was a hassle because I could never find my pen [ha]. But no, there is no point writing it down because nobody is going to look at it.

Right. So when you go and see the nurse on the occasions that you do, they don’t want to see all your records?

No they’ve never asked. They’ve never asked, and I’ve got pages of the stuff and I think, Well it’s a waste of paper.

Yeah. And is it relatively stable?

[mmm] Yeah, yeah.

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.

Oh yes, that was basically, its blood pressure testing every day. And weight. Then it was all put onto an iPad, which they monitor from the hospital. That’s basically all it was, really.

So you were doing that yourself at home every day?

Yeah, yeah, every morning doing blood pressure and weight.

How long did you do that for?

OhProbably three, four months, I would think.

And they supplied all the kit?

They supplied the kit, yeah, yeah. I wanted to carry on with it, cos it helped me as well to keep an eye on my blood pressure and that. But they said, there is so many people they want to do it, you know, they let somebody else have a go. And if they started it again, they’d consider me for another round. But it didn’t happen, so

So you were weighing yourself and measuring your blood pressure. What time of day did you do that then?

That was first thing in the morning.

First thing in the morning. And you had to enter the figures into an iPad that they’d given you.

That was automatically done.

How was it automatically

It’s apparently the scales talk to the iPad.

Oh really? Now that’s clever isn’t it.

Yeah. Yeah, it was. And then the only thing I had to do was put the weight in. It’s blood pressure. No that done it as well. That’s right. The blood pressure machine spoke to the iPad, or communicated whichever you want to put it. No, they both did, that’s right, didn’t have to do anything except switch it on. It’s good.

And then how often did you have to take the iPad up to the hospital, or didn’t you?

I didn’t. That’s, that was, that was remotely monitored through the Internet. It’s all, all good stuff.

Does she [community heart failure nurse] weigh you?

No, she leaves me to tell her what my weight is.

Oh ok, so how often do you weigh yourself?

Oh about once a month.

So just before her visit?

Yeah [laugh]

Yeah.

Then we work out whether it is going up or whether it is going down.

And is it fairly stable or

Yeah, yeah.

I weigh myself at least once a month. That’s not due to my heart condition or, well yeah, no it is, it is, it is due to my heart condition. I have always been advised that I should stay round about 9 stone in weight, because of obviously the more weight you put on the more pressure and more stress you’re putting on your heart. I totally relate to that. I’m very small framed anyway and a couple of years ago, it would be about three years ago, I did get up to about ten and a half stone, which I wasn’t comfortable with in my own self, so we decided, my husband and I both decided that we would go onto a diet. So we went on a diet and we weighed ourselves every week. Again, on a Monday, routine, we weighed ourselves every week for 18 months and monitored our weight. We then didn’t come off the diet but gradually introduced things we shouldn’t be having: sweets, takeaways, the usual that people over indulge in every now and again, still keeping on the diet mainly. So I would say we regularly weigh ourselves at least once a month.

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

Right I have a, a small machine which I can show you. it’s basically a finger prick, very similar to the people that have diabetes. You have a pen, a finger prick, you have a little strip, you put that, your blood on a strip, you put it in your machine and it’ll come up with your INR.

The actual test strips I get on prescription, and the lances that go into the pen I get on prescription. So although the machine I had to pay for initially, I do get the lances and the test strips on prescription.

I’ve found that where, because we live in such a remote area, when I was getting my INR tested at the doctor’s, by the time it got to the hospital and the lab, it was all delayed, so by the time the, the specialist would ring me with my dosage it would be two days later. So I’d either stop my INR in between the test, the blood test and the results, or carry on taking it and then by the time I’d done the next test it was all completely up in the air.

So I found that if I did it myself, I do it every week, like I say, on a Monday, and my INR has been in range ever since I’ve been doing it, apart from, obviously, when I’ve had minor ops obviously you come off your warfarin and, you know, if I’ve been ill or if I do, which I don’t drink, very very rare, but if we do have a family occasion, Christmas, weddings, funerals, christenings, and I do have a drink, if, I know what compensates and how to dose my INR, I know what foods alter my INR personally to me, so if we go out and have a curry, but we’ve had a curry maybe two or three nights on the run if we’re on holiday, I know that affects my INR, so I’ll just for those two nights I’ll maybe miss a dose, or instead of taking five milligrams I’ll maybe only take three, so that I can keep it. But I’ve been doing it for six years and I think it’s habit and you know your own body, nobody knows your own body like yourself. And it’s the best thing that I’ve ever done.

I generally get an appointment and what I do is I’ll download, if I get an appointment say 20th July, 9 o’clock, I’ll download my pacemaker, which is a very simple procedure. You just put a device on top of your pacemaker and it will record. The information will then get sent down to my hospital. If they pick anything up that needs, or they feel is not quite right or needs changing, depending on how severe it is, if it’s something that just needs a little tweak they will ask the local hospital to do it, which they’re quite happy to do, they do work in conjunction with each other. If it’s something a little bit more serious that, you know, that the specialist wants to see, then I will get an appointment to go down and, and have a check done there. If everything’s fine I don’t hear anything, as my Mum always used to say to me, No news is good news. So I don’t, I don’t worry about it, I just, if the appointment comes through I do it, send it down, it’s all done via satellite. If I feel that maybe my heart’s not in its correct rhythm or I’m feeling breathless or something’s not quite right, I can then ring the, the pacing team, explain to them the situation, and they’ll say, Right, well if you do a pacing check within the next half an hour, we can check it and we’ll get back to you. So it’s all done harmlessly, effortlessly, great.

Medtronic?

Medtronic Care Link

OK

So

It’s a machine?

It’s a machine. That plugs into the socket of the phone, where your phone goes, it plugs into there and then you turn it on. I must admit the, a DVD came with it and I haven’t looked at that yet but I was explained that as long as I am in the are that picks up the signal of this implantation (ICD). And it is monitored down at the hospital in [town] 24 hours and if something goes wrong they’ll know about it and they’ll phone me up

OK to check that you’re OK?

Yes.

Yes, I, three times a year. They set the date and it’s all wireless, so I don’t have to do the mouse over the shoulder. It’s a wireless unit that I have underneath the bed upstairs. And whilst I’m asleep it just zaps off to the hospital. I don’t know what time it happens but it just happens and I get a letter in the post saying everything is fine. I I’m well pleased. Or on the other hand, Oh, we’ve got a problem here and you need to come down and see us. I did have that happen on the, on the first device, obviously, when the battery was coming to its natural end. So, but then you’re being monitored pretty close to weekly because they want to use as much power as possible but they don’t want to leave it where there’s not enough power. At £20,000 a time these devices are not just handed out like drugs are.