Nuala

Age at interview: 60

Age at diagnosis: 48

Brief Outline: Diagnosed with AF 12 years ago, Nuala had unsuccessful cardioversions, a pulmonary vein isolation plus an ablation to regulate her heart rhythm before accepting AF as part of her life. Alongside a healthy diet and exercise, she takes digoxin, sotalol and warfarin.

Background: Nuala worked as an NHS manager before retiring to set up her own training business. She is married with five adult children. Ethnic background/nationality: White N Irish.

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Nuala thought she might be anaemic when 12 years ago she started to feel very tired and breathless when climbing stairs at work. After noticing her pulse ‘racing a bit’ she consulted her GP who diagnosed AF and sent her to hospital. Intravenous drugs and then a cardioversion returned her heart to sinus rhythm for a few months before AF returned. Pushed by ‘a drive in me to keep in sinus rhythm’, Nuala underwent 20-30 unsuccessful cardioversions and a pulmonary vein isolation over the next 8 years before reaching a decision with her cardiologist to remain in AF and regulate her heart rate rather than rhythm. She turned down the possibility of having an AV node ablation and pacemaker fitted because ‘I’m too young for that and you can’t bring it back again’. 

Nuala believes her AF is the result of a narrowing of the mitral valve; a condition she has had for over 25 years. At first she didn’t want to be on drugs for AF. She describes how she went through a ‘grieving process for losing my independence’ and admits that ‘part of me was in denial’. Today, however, her attitude has changed and she now accepts the need for medication to stabilise her heart rate. After finding that digoxin on its own caused her ankles and hands to swell, she was prescribed a combination of a lower dose digoxin and sotalol which ‘works pretty well’. 

Fear of stroke is Nuala’s biggest concern. She takes warfarin to protect her despite being anxious about its side effects, particularly bleeding. Regular blood tests have become easier, now requiring just a finger prick though Nuala has tentatively raised the possibility of having a home monitor. Her health professionals, however, are ‘not so sure of it’. Aware of new anticoagulants coming onto the market, she is wary because ‘there is no reversal if you do have a bleed’. 

Nuala speaks very highly of the care she has received throughout her experience of AF. Her healthcare team have listened to her concerns, explained procedures, given advice by phone at any time, and supported her through periods of anxiety. Researching her condition on the internet and talking to medical professionals has helped Nuala make informed decisions about her treatment. Describing how having a heart condition can undermine self-esteem and bring about feelings of despair, she urges healthcare professionals to be more aware of the psychological impact which AF has on people’s lives. 

For Nuala, having AF has ‘forced me to look at my life’. She eats well, manages her stress and has a ‘good warm relationship’ with her family. By modifying her diet, eating more chicken, fish and vegetarian meals than red meat, and giving up tea, fizzy drinks, and alcohol, she now feels healthier than ever. While unable to walk up hills or go to the gym because it would leave her too breathless, Nuala enjoys swimming and walking on the flat. While enjoying travelling, she is concerned at how discriminatory it is for people with AF to get travel insurance.

Nuala enjoyed a brief respite from AF recently when her heart went back into ‘the feeling of slow and evenness of sinus rhythm’. Disappointingly, this was not to last. Accepting AF as part of her life has been a key part of moving on for Nuala. She describes her journey vividly: ‘it was almost like a bully that was coming after me and I was running and running and running from it. But now the bully is living with me, at least now I know how to manage it’. She hopes that in the future stem cell research may offer hope for those living with AF. 

Interview held 15/03/12

When Nuala was asked if AF restricted her life in any way she talked about the discrimination she’s faced with travel insurance.

Oh it’s very difficult to get health insurance. Very are very expensive and I went to Australia last year and I had health I had insurance taken out but they didn’t cover me for anything to do with the AF and I went. I thought, “Well, I’ll never have to go to a hospital anyhow. I’ll take a chance.” And I did. I don’t like doing that, however, when I want to go Europe I have the E one eleven card [now the European Health Insurance Card] and I think, because one of my daughters fell one time and they didn’t want any insurance. They just wanted the E one eleven. So I thought, well, I’ll have that with me as well. But it’s it has been very difficult to get, once you mention that you’ve had a cardioversion and I’ve been thinking about going along to the my MP to see if there’s anything they can do because it’s very, it’s very discriminatory. Even though I haven’t been in hospital for four years and the only time I was and I’m a very healthy person but getting all, I think a lot of them, the companies won’t insure.

Can you pay extra?

Some of them just said they wouldn’t they wouldn’t insure, so there wasn’t anybody that said, because even if I would have paid the extra, particularly going long haul holidays but that’s the only thing and saying that, it hasn’t stopped me travelling.

For Nuala, science held out hope of a breakthrough in the treatment of AF.

And I don’t know why I’m not calling it permanent because it’s, I’m not accepting that it’s in permanent because of hoping there’s something that will bring it back to sinus rhythm.

I still have hope that something, you know, they’ll be some sort of discovery with and particularly with stem cell treatment, I have a lot of hope in that area that, you know, watched different programmes and I know in America there was a very comprehensive programme about how they manage atrial fibrillation and one of the things was a… other heart conditions and there was a doctor in America, who’d actually, the plan would be to grow a heart through stem cells. So I thought well maybe if they could grow a heart, they could grow part of the heart maybe through stem cells.

Nuala wanted to live her life without medication but realised that drugs would help stabilise her AF.

I had a value that I didn’t want to be on medications. I didn’t want to be on drugs. That was my own personal value, you know, was I wanted to be free from medication. I had to work through that and accept that, in fact, quite the reverse I’d say I was right to have them. I’m from a part of the world where we have access to medication and it’s free and all that so I’m okay. I think it was almost like a grieving process for losing my independence. 

Losing my life without medication, if you know what I mean and probably I think it was a grieving process and part of me in denial and then part of me maybe fighting against it as well. 

But now I totally accept my views of well, sure, if you can take something that keeps you stabilised, why not.

Nuala, a former nurse, reduced her dose of digoxin ‘very slowly’ and found that this reduced the swelling in her ankles.

So for about a year I was on digoxin only. However, I found that my ankles were swelling and then I was put on a diuretic as well and my hands were swelling. I couldn’t wear rings and I didn’t know what it was but I discovered that it was the digoxin, even though that they said they don’t give it, some of the medics would have said, “No, it wouldn’t cause that.” But I reduced the digoxin myself very, very slowly to an amount that was working okay but my swelling and everything else went down. So this time I went on it I went on a lower dose and along with the sotalol, it works pretty well. And I don’t have any swelling of my ankles from it.

Nuala had over 20 unsuccessful cardioversions before reaching a decision with her cardiologist to remain in AF and regulate her heart rate rather than rhythm.

It was me that was pushing for them in a way and I would have said, you know, I wanted it because I so much wanted to be in sinus rhythm and I suppose they were going along with me as well, although the last time, after three episodes both the doctor had said to me and I said I’d thought about it as well and I thought I really don’t want to keep doing this.

Did they discuss it with you much in previous times and so on?

They would have done I, you know, and talked about long term and said to me that I probably will go into AF and I suppose again I was in denial and didn’t want to hear it and I really pushed for it not to happen. And, at the same time, was thinking, if you keep doing the same thing, “If you if you keep doing what you’re doing, you’re going to keep getting what you get.” And all that was in my head but there was still this drive in me to keep in sinus rhythm.

After many failed cardioversion procedures, Nuala went on to have a pulmonary vein isolation ablation. She was disappointed when she went back into AF a few weeks later.

That involved again fasting from the night before and then did all the blood pressure and ECG and everything first and then looked like an operating theatre, laid out on the table. I was given some valium to just to check my anxiety but I was awake for through the procedure and they put a needle up through the groin and up and I could see it see it on the screen as well where they went up to ablate the veins around the, isolate the pulmonary veins around the pulmonary artery and it was okay. 

And they talked away, the people in the, the doctor and the nurses and the other staff that were there, the ECG technicians all talked away to me and probably that it was because I had been given valium, I felt settled. So it was about, I think it was about four, maybe four hours to six hours. Of course it didn’t seem like that length of time when it was being done and that was okay. 

Just immediately after the pulmonary vein isolation, [doctor] had said to me that he felt my left atrium was badly scarred and he didn’t think it would work, which was very disappointing. However, I left with hope that it would and within a few weeks, it went back into AF again. 

The sense of finality of having an AV-node ablation and pacemaker fitted was a factor in discouraging Nuala from having the procedure.

I just think I’m too young for that, maybe. You know, at the same time, I think if there’s something else that’s going to be developed and I have no AV node, you can’t bring it back again. So I would prefer not to do it, and as well as that, I suppose I know somebody who has had that done and they were taken off all medications. They didn’t need it and that was very attractive to me to me, at the same time, I thought, “Ah, you’re having a machine inside me.” I know at the same time, if I need it then that’s fine. If somebody said to me, “If you don’t have this, you know, you could die.” Then I’ll have it. 

Nuala explained how giving up alcohol had a knock-on effect on her social life.

My alcohol consumption has greatly reduced and when I look back on it now, I probably was taking far too much but I wasn’t aware of it at the time. But I was forced to because alcohol would have been another thing that would have would have messed with your AF. So for a time, I just stopped drinking and it was a very different time because we would have gone out on a regular basis at the weekend and for a meal and had wine. And so all that stopped and that was difficult because it was a big change in my lifestyle. Then I wouldn’t have, because I was so afraid of going into AF I wouldn’t I wouldn’t have had any alcohol at all and that was a change for me, big change, but probably not a bad change. And saying that, now that I am in AF I would have a drink but not extremely and I would be very aware of my alcohol intake and I think it has done me the power of good not taking. 

I’m much more aware of it now. It was difficult, very difficult at the time because you were on a lifestyle and I really, really wanted my type I wanted my life back again, the way I had it and it wasn’t going to happen. And it was, when I look at it through, it was very much a grieving process for the life that I had, denial at first, and then really angry and really frustrated at not being able to do what I wanted to do and particularly, going out socialising, even though I went out but I was the one that was sitting that wasn’t drinking.

So in a way, some things, as I say, it’s one of the worst things that has happened to me but it’s one of the best things that’s happened to me. It’s forced me to look at my life.

Nuala likes to know as much as she can about AF so that she can ask the right questions and make informed decisions.

I would say find out as much as you possibly can about it. Get to know your own body. Get to know the things that causes it or that initiates it. Ask as many questions as you can. Don’t just take medication blindly, find out what the side effects of the medication are and go on recognised internet sites and find out if there are any other possible side effects and particularly if it’s a new drug, you know, somebody is this a drug trial, make sure that you’re aware of if it’s a drug trial or not. But to be very, very much aware and find out as much as they possibly can and then when they going for consultations, have a list of questions they want to ask rather than going in there and forgetting about it because you’re not going to maybe be back for probably three or four months. But if they can do things that can reduce the episodes and whatever that is, whatever healthy changes that they might do it but, as well as that, push and see if you can get as much information as you possibly can. That’s my way of dealing with it, everybody is different. But I like to know as much as I possibly can so that then I can make informed decisions rather than maybe and I’m not and anyway because doctors have so many patients and nurses and they have to see to them all and so they’re doing what they’re doing the best that they can but if you’re not happy with it, you don’t have to accept it. And get second opinions as well.