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.

What if your doctor four hundred miles away said, It’s silly you coming all the way down here, you know, You should, we should transfer all your care to your local hospital. How would you feel about that?

I would say, Fine if that’s what you want to do, you don’t want me as a patient, that’s fine, but don’t expect me to see anybody else, I’ll deal with this on my own. I wouldn’t see anybody else. It’s as simple as that. And the subject has been approached. He did say to me, you know. Well, to be fair, when I moved from where I used to live up here to where I am now, there is a four hundred mile difference between my consultant, I did go to a consultant nearer by, which seemed like a good idea at the time. I had one consultation with this other consultant whom I was told that I was basically a hypochondriac, I’m not qualified to test my own INR and monitor my own health issues, blood pressure that kind of thing, so there’s absolutely nothing wrong with me and I need to get a grip of my life. So I then got up, said, Thank you very much, and walked out. I came home and I phoned my previous consultant who I was under originally, spoke to his secretary and I said, There is no way I’m seeing anybody else; I want to come back and see my normal consultant, who I’d been under, who’d gone through the, the pulmonary, the valve replacement with me and, and everything. And she said, Oh there is proper channels we need to do, so we’ll go through the proper channels and we’ll see how it goes. And then within two months I got an appointment to see my original consultant, and I said to him then, Don’t ever, ever ask me to see anybody else because it won’t happen. So that would have been ten years ago, nine years ago. I’ve lived here for ten years, so it would have been about nine, eight, nine years ago I went back to him.

I mean the medical profession have been absolutely fantastic with me, I can’t fault them in any aspect. But on saying that, they are not always right and they don’t always know everything, so it, it’s got to be, I think you need a really good relationship with whoever you’re with, that they understand what you, you know, how you know yourself to how they know you. I do think that helps.

I travel four hundred miles to see my consultant. I won’t see anybody else unless my consultant says, you know, he’s away or whatever, you, somebody else is going to be seeing you, and that’s happy. The pacing team are exactly the same, I see the same consultant and they’re aware that, you know, I do travel that distance for a reason, because in my opinion that’s the place I get the best care, the best quality, I, my husband is informed with everything that’s going on, I’m treated like a human being, you know, it’s not a Mrs So-and-So, it’s first name terms. I know his wife’s name, I know his children’s names, I know what his kids do, what they want to do when they’re grown up. It’s a very very personalised relationship.

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.

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.

So can you tell me a bit about your heart condition?

I was born with congenital heart disease, Tetralogy of Fallot. It’s basically four problems wrong with the heart, which have been, were rectified when I was three. That was when I had my first open heart surgery. I had regular checks as far as I’m aware up until I was about 16 when I left home, got married, started my own family. Never had any intervention really from any cardiologist until I was in my early thirties. I started to feel unwell, passing out. Went to the doctor’s and said I needed a new valve replacement, which I was absolutely shocked cos I really believed that the operation I had when I was three was like going for your tonsils out. Once that was done you were fit and healthy. I had a normal life right through school, had two beautiful healthy boys.

When I was in my early thirties I had a valve replacement done, which at the time I believed I would be in hospital, valve replacement done, out of hospital and I’d be back to being my early twenties, which didn’t work. I had quite a lot of psychological problems dealing with what had happened, which has all been sorted out and I went through therapy for. And I had my pulmonary valve replaced in 2001, it’s all been very successful, I have regular checks. I normally have my heart checked at least every six months. And then in 2006 I had a pacemaker fitted. And about 8 weeks ago I’ve just had another pacemaker fitted as that was running, that had run out of battery life, so they put a new one in, a bit of an upgrade apparently.

Two years ago I did get word that maybe I would be going on a transplant list, that would be the next step forward. Thankfully my health has picked up and I am not on a transplant list, but there is always that, it is a possibility further on in life, which at the time I couldn’t deal with. I don’t want anybody else’s heart, I’m happy with mine. My heart’s got me to 46 and I’m proud of that. I don’t want another one, I’m quite happy with that. So I did go through another emotional time; I had fantastic family who supported me, talked me through it all. Two years on, even though I’m not on a list, and it doesn’t look like I would, I don’t need a heart transplant in the near future, but I have got my head round it, and if that’s the case, yeah, bring it on, let’s go for it.

Oh okay so now you would be prepared to have

I would now, yes, yeah, yeah. I didn’t agree with it, I’ve always been very, we are born individually with what we have and we should all be thankful of what we have. And I did find it very very difficult to comprehend having some, somebody else’s heart to keep me going, because as far as I was aware, and as far as I was concerned, my heart’s done me proud, and I would feel like I was letting it down. It probably sounds ridiculous but everybody has their own emotional ways of dealing with things. The family sat down, my three boys, my husband, we all sat down, had a discussion about it. They all put their points of view across and, to be fair, they were all right because I chose to get married, I chose to have a family, and as a mother and a wife, and now a grandmother, it’s my responsibility to keep me here as long as possible to look after them. And if that means I need a transplant, I need more operations, then so be it. So yeah I’ve, that’s all sorted and thankfully, like I say at the moment, I’m not needing a transplant and I’m not going on any list, so it’s just keep ticking over and keep looking after myself as best as I can and live my life to the full.