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.

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.

And then I’ve been alright for the last nine years up till a year gone… a year gone January, when they diagnosed heart failure which I had an echocardiograph and they diagnosed heart failure from there. And I’ve just progressed from there with my tablets which the doctor put me on, different medication of course. He started me off with frusemide, water tables, and then we progressed onto beta-blockers and also another one called an ace inhibitor (you’ve heard of it), ACE inhibitor, and of course I take an aspirin you know. So that’s about where I am. It’s taken me a year to sort of feel better, it’s taken me a year. Initially when I first, before they started treating me for this condition, I was feeling tired, I was worn out, and I was out of breath a lot you know. And especially when I laid in bed, you know water, I was filling with water. And since they’ve [treated] me I’ve started getting a bit of strength back now, you know I’m alright, I’m a lot better than I was. I thought, in fact I thought I was finished, I thought I was going to die, ’cause I felt that ill.

I take my water tablet first thing on a morning with my others and within an hour of taking my water tablet I go to the toilet. Before I get dressed I go to the toilet; when I’m dressed I come downstairs and start doing something, I have to go to the toilet. On a morning it’s the only time it affects me. On an afternoon, after about 1 o’clock, I might go 5 or 6 times between 7.30 or 8.00am and 1.00pm, maybe more, but after that I don’t bother. And that’s one thing about the water tablets, I must admit is, I don’t have to get up, maybe once during the night but I think I’ve got rid of it all on a morning (laughing) so like theres nothing left;

Yes I have organised my life round them. I should do it more really, because if we go shopping to the local supermarket I know where the toilets are, if we go into town to do any shopping, I know where the toilets are; But it’s just a case of I know how long, it’s either that, or leaving my shopping in the car and running straight to the toilet, front door open, back door open, all doors open, just quick, get to the toilet;
;

No, I take them, the time I take them… well, yes, it does affect your lifestyle in as much as how many times you need to go to the toilet. So at one time I used to take one of the diuretics at night when I went to bed, in fact during the last summer, and I spoke to my pharmacist in the village because she happened to be a friend of my husband’s anyway, and then I spoke to her and told her when I was taking them and she said, ‘Why on earth do you take it at night?; Well I said I have to take three and I was eking it out. So she said, ‘Well don’t take it any later than midday. Consequently it is much better at night; I still have to get up twice in the night anyway. But..so it doesn’t really affect, well it does affect your life a bit I suppose but I’m so used to it;;

So you’ve got all your medicines in a dosette box [from Boots], so does that mean that you?

Nearly all except, except there’s warfarin, which I’m allowed to look after myself.

Yeah. So do you ever forget to take them, or is it easy cos they’re in the box?

Very, very seldom, I often don’t take them exactly at noon or whatever, but I don’t think it matters.

No.

And if I don’t take the furosemide immediately before I’m going out, probably if I’m going out early afternoon I tend to take it when I come back.

Would you like to explain, for the purpose of other people watching this, why that is?

Well it is a diuretic, it helps get rid of water, excess water in my legs. And it does it quite quickly after you take them, so it’s awkward to be on the bus into town and needing a toilet very badly. I just try not to do it.

No, because the main concern is the beta-blocker, isn’t it? Not even the water tablets are they concerned about because they’re, you know they ask you if you’re still taking them and you tell them. But it’s the beta-blocker that’s more of, the tablet that they’re more concerned with because that’s the one that they’re regulating with me.

Since I’ve been in hospital and come out, it’s nearly 6 months now, they haven’t altered any other tablet apart from the beta-blocker, right. So you know, even when, I had to re-register my doctor and I thought hed give me like a medical, nothing like that. Got my notes and says, ‘Okay, you can have these whenever you want’ because it’s like a repeat prescription and what have you. Fine, no problem but you know, are there any different doses for the water tablets? You know like in the summer, you know could it be higher because theres more intake of fluid because of the weather? I don’t know, nobody’s said nothing to me, you know what I mean? So, I don’t know, you just don’t know, do you?

Have you noticed any side effects from any of them?

Well, it’s hard to pin-point because I take 4, 5 in the mornings so I’ve got 5 tablets working around so I don’t know if it’s this or that. The only one I have, well obviously the beta-blocker, when I went up from the 1mg to 2.5 and then 3.75, then it went on to 5, oh that was, you know that was when I could feel the heart, you know what I mean?

Because obviously, well the way I look at it, it’s slowing it down so if I’m continuing doing what I normally do it’s putting extra pressure on my heart so obviously you’re going to feel it more, ain’t it? Because you’ve one slowing it down and theres you trying to work it and it’s going, hang on, what’s going on here, you know. This has said slow down and you’re saying you want more, you know what I mean? So, I explained that to the nurses down there and they says, ‘Oh, if you feel uncomfortable just drop that down to the one that you feel comfortable with. Like again, none of the other tablets, nobody said nothing to me about the other tablets, you know what I mean? And it doesn’t seem like they’re interested about the other tablets, it’s just the beta-blocker and that’s it.

I think taking the tablets is not a worry to me, because I’ve got it under control. At first I didn’t think I’d have to take them all the time, I thought once I got better I could come off them. But once that was explained to me, well what else can you do? It saved my life, so of course I don’t mind taking them.

The only side effects I had, was when I first started taking the beta-blockers, and I was really ill, sick and dizzy and breathless again. But no, I’m… I suppose I should read the packets and it says, ‘You may get this side effect’ but I don’t! I don’t want to read what side effects I’m going to get, because who knows, in my head I might start getting them, and I don’t want to do that. I know I trust my doctor, my consultant who put me on these tablets and I know that they’re good for me, and if I didn’t take them then I wouldn’t be here probably.

And hes [GP] monitored very carefully how they’ve affected me. One example was ace inhibitors which I can’t exactly remember what they do but, one of the unfortunate side effects was coughing. Coughing like mad and he changed that prescription to an alternative, can’t remember what that’s called, or can I? Candisatin, yes candisatin which is an alternative to an ace inhibitor and that has certainly not caused any side effects. So he regularly checks on the medication and the side effects.