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
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.
When Nuala was asked if AF restricted her life in any way she talked about the discrimination she’s faced with travel insurance.
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.
For Nuala, science held out hope of a breakthrough in the treatment of AF.
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.
Nuala wanted to live her life without medication but realised that drugs would help stabilise her AF.
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.
Nuala, a former nurse, reduced her dose of digoxin ‘very slowly’ and found that this reduced the swelling in her ankles.
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.
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.
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.
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.
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.
The sense of finality of having an AV-node ablation and pacemaker fitted was a factor in discouraging Nuala from having the procedure.
Nuala explained how giving up alcohol had a knock-on effect on her social life.
Nuala explained how giving up alcohol had a knock-on effect on her social life.
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.