Ginny

Age at interview: 49

Age at diagnosis: 45

Brief Outline: Ginny underwent an ablation for atrial flutter but was then diagnosed with AF after an episode while mountaineering. She has taken warfarin and beta-blockers but is now drug-free after a successful catheter ablation.

Background: Ginny is an artist and teacher. She is divorced. Ethnic background/nationality: White British.

More about me...

Ginny’s great passion in life is mountaineering. So her biggest concern when diagnosed with atrial flutter at the age of 45 after a dizzy spell at work was that it might curtail her climbing pursuits and put an end to her ‘ultimate goal’ to climb the Himalayas. Beta-blockers (atenolol) stabilised her condition and were generally well tolerated although they did slow her down and cause sleeplessness at first. The atrial flutter returned, however, and Ginny’s consultant recommended a flutter ablation.

Describing herself as a ‘fanatical, unusual character’, Ginny put off having the flutter ablation until she had successfully climbed ‘the inaccessible pinnacle on the Isle of Skye’. The ablation initially appeared to be successful and after a one month period of recovery Ginny returned to the mountains and to a fitness programme which involved running up to 10-15 miles a week. All was well until she felt light headed one day while watching women ascending a climbing wall. Her GP listened to her heart but found nothing wrong. However, three quarters of the way up St Sunday Crag in the Lake District, Ginny found her heart pounding ‘very very fast’, her legs weak, and her pulse rate so fast that she couldn’t count it. Dismissing this as ‘an off day’, however, Ginny wasn’t overly concerned about her symptoms. A strong, fit athlete, she was used to being a bit out of breath.

A few days later, however, in what she thought would be a final follow-up appointment with her cardiologist, Ginny was diagnosed with atrial fibrillation. It came as ‘a complete shock’. Ginny finds it frightening that she could easily have ignored her symptoms if she hadn’t gone ahead with her appointment ‘out of respect for the cardiologist’. Although very fit, the risk of stroke and the desire to be free of heart problems so that she could carry on a ‘very, very active life’ influenced Ginny’s decision to have a catheter ablation. She was prescribed warfarin for six months before the procedure.

Living in a rural area, Ginny found being on warfarin very time consuming and expensive as she travelled to hospital for regular blood tests. Her former employer also found it difficult to accept that her appointments could make her late for work. Ginny was also concerned about the possibility of internal bleeding should she have an accident while climbing and was careful to make her fellow climbers aware of her condition and to modify her route where necessary as a ‘concession to warfarin’.

Although Ginny had headaches which she found ‘quite debilitating’ for 2 weeks following the catheter ablation, the procedure appears to have been successful and almost a year after treatment Ginny remains free from AF.

Ginny has found booklets and advice from the Atrial Fibrillation Association useful in helping her understand her condition, and she is full of praise for the cardiologists, electrophysiologists, and arrhythmia nurses who have treated her. They have been polite, helpful, reassuring, and willing to answer her questions, and, as a result, she has been happy to follow their advice. She says ‘I wouldn’t swap having had AF because I would have missed out on meeting some very professional, charming people’.

Having AF has, however, had ‘devastating consequences’ on Ginny’s career, holding her back from applying for jobs at a stage in life when she feels she should be moving ahead. It has also impinged on her leisure and she is still waiting ‘for that golden moment’ when health wise she is able to get insurance to go abroad to pursue her challenges as a mountaineer. Now drug-free since her ablation, Ginny is ‘fairly confident’ that in a year’s time she will be ‘where I want to be’. Her advice to others diagnosed with AF is to seek as much information as possible, and ‘keep yourself as stress free as life allows you to be’. Interview held 18/01/12

In her forties, Ginny spoke of the ‘devastating consequences’ AF had on her career.

You can’t really go applying for, you know, your, a job and say, “Oh, yes, you know, I’m fit and healthy.” When you’re actually seeing a cardiologist. You know, you just can’t do that really. So I’ve gone really through the going on for sort of five years now thinking, “Well, this hasn’t really impinged on my life.” It’s impinged on my leisure I suppose but it hasn’t really impinged on my life and then I thought, “Well, hang on a minute. Yes, it has. It has actually.” It’s impinged greatly on careers and at a stage in my life when I needed to be to be moving on and applying for better jobs and such things.

I literally, left one job because I didn’t think that I could cope with the stress that was going on in the job after I’d had my first ablation. I felt that I had to protect myself from that that environment and protect my heart from that environment because I thought by putting myself back into that environment, after having the ablation, I would go possibly back into AF or something would happen. 

Ginny, whose passion is mountaineering, explained her decision to have a catheter ablation. Although successful so far, she is unsure how long it will last.

I was pretty fit and it wasn’t necessarily, hampering me. You know, people would say, “Well, why, why, why go in for an ablation?” But, you know, you are at the risk of stroke and, you know, I wanted to be free of heart problems, you know, so I could I can carry on a very, very active life. And, as I say, he did the ablation and, to all intents and purposes, you know, one month went by, two months went by, three months went by, summer went by and everything has everything, as far as they can tell, is okay now. 

I mean my cardiologist said to me, the guy who did the, the specialist said to me, “Some people have one ablation and then that’s it for the rest of their life. No more AF ever.” I suppose for them, the jury is probably out on that because if I’m right, I think this is still considered to be in its infancy because it’s fifteen years research or something into it and there are a number of things they need to research as it like after the ablation on the left hand side of the heart for fibrillation, you do get headaches for two up to two weeks afterwards and they can be really quite, quite debilitating and quite, for me, they were and that that that I did not know before I went in for the ablation and that that was a bit of a surprise. But the arrhythmia nurse told me that that was the case, that the jury is out on that one. They really don’t know exactly why that happens. They think it might be alteration in blood pressure in the heart because of the hole they’ve made in your heart or it could be anything. They’re not really sure. So I I’m not worried that it’s going to necessarily come back but there is a possibility that it could come back within seven years.

Well, I am aware that ablations might not last forever and that AF can come back. I am also aware that, you know, that that, as I say, that that it possibly, that it can it can come back, anybody can get AF at any time. So I’m not I’m not going to worry about it. Once I am, you know, fairly sure, and I am more or less fairly sure now that it that it’s gone, I, you know, I, you know, I want to just get on with the rest of my life and move on and I think yeah, there is that that in the back of your mind that maybe when you get to fifty five or sixty, you could be looking at this problem again. And then you’ll just have to assess where you are, whether you’re fit enough to go through another ablation, whether you actually want to go through another ablation or whether you just want to stay on tablets, you know. Life is a lottery.

Aware of her increased risk of stroke, Ginny decided to have an ablation to keep her heart in check.

But you see, if you don’t take beta-blockers and your heart is not kept in check, you’ve got more likelihood of getting a stroke through having atrial fibrillation. Atrial fibrillation, don’t think for a minute that I’ve just had an ablation because I want to go and rush up and down a mountain. The older you get, the longer you have atrial fibrillation the more likely you are to end up with a stroke. You are a higher candidate in a higher risk category for having a stroke. So there is a very good medical reason for giving people ablations. It’s not just so they can go, like me, and go and run up and down some mountain. It is a serious, atrial fibrillation is a serious condition and can lead to stroke.

Ginny was advised to curtail her mountaineering activities while on warfarin because of the risk of internal bleeding.

Now I seem to be somebody who needs to escape before an operation, I need to escape particularly with this mountaineering and it sort of puts me in good stead to go through an operation. And the doctors realised this but I was on warfarin and he said, “Well.” I said to him, I said, “Well, how bad a bruise have I got to have before I go to hospital.” You know, thinking, you know, bruises, external bruises. Not being medically trained, it never occurred to me that his reply was, “Well, we’re not so worried about that but what we’re worried about is internal bleeding.” So he said, “If I was you, I’d put your more adventurous mountain activities on the back burner, while you’re on warfarin.” And I thought, “Right. Okay.”

Before her pre-operation appointment for an ablation, Ginny prepared herself by reading booklets from the hospital and the Atrial Fibrillation Association.

As I say, I’m somebody that has to know the far end of everything. So I’d I contacted the Atrial Fibrillation Association. I contacted the sister, the sister group. What’s that one? Atrial Fibrillation. AFA, atrial fibrillation yes, and I got all the booklets about catheter ablation from the Atrial Fibrillation Association before I ever went into it. I mean the hospitals are very good. They send you out booklets detailing, I think anything to do with the heart, they send you out booklets detailing the ins and outs of everything and the risks associated with it. I was glad I was actually very, very glad I had prepared myself for what was going to be told at the pre-op appointment for the atrial, for the ablation for atrial fibrillation because I think, I can see why the gentleman in front of me possibly, declined the idea of having an ablation because it is quite off putting to be sat there and to be told the facts and figures.

While praising the introduction of pulse checking days, Ginny added a note of caution.

Well, I know the Atrial Fibrillation Association is having a lot of pulse checking days. They did last year and it’s having another one this year. And I think that’s a I think that’s a very good idea but then I dread to think that, you know, we might end up swamping the NHS with a lot of people who think they’ve got something and they perhaps haven’t, you know. You can scare people.