AF Information & Advice For Patients

Jenny's Story

Jenny Hutton noticed her husband’s heart ‘beating all over the place’, which the couple laughed off. A few weeks later, he suffered an AF-related stroke. She shares her story as a carer on how AF has affected their life. 

I had never heard of atrial fibrillation (AF) so one evening in 2008 when we were watching television; I was lying on my husband James’ chest and heard his heartbeat. It was so chaotic. I said “your hearts beating all over the place” and we chuckled. I never knew what an irregular heartbeat could mean, so we ignored it.

Six weeks later when we returned home from shopping, James went upstairs while I was unpacking the groceries. I called up but there was no answer. I called again and still there was no answer. This was very unlike him – he always responded when I called out. So I rushed upstairs to find him keeling over the banister.

Immediately I knew he was having a stroke. All the symptoms were there – his face had dropped to one side, he couldn’t speak or raise his arms. I dialled 999 and told them to rush – I knew every second was crucial.

At the time I seemed to go into overdrive. I appeared to be doing all the right things – sat him on the bed, asked him to try to speak or raise his arms, and called for an ambulance but told James to keep calm. I guess when you are in the situation you just get on with it. There was no time to panic. 

Just 20 minutes earlier, James had been driving on the A46. It is terrifying to think what could’ve happened if the stroke had occurred before we got home, when he was behind the wheel. We were very lucky.

Three days after the stroke, a doppler test was carried out on James to determine the cause of the stroke. The radiographer said they couldn’t find anything in the test, which scans the side of the neck.

They mentioned heart mapping and glossed over it as an option. I told them about the irregularity in his pulse a few weeks later and further tests proved it was a blood clot from the heart that had caused the stroke. It took a further two weeks before James was diagnosed with AF. 

I went home to research on the Internet and came across the AF Association, which is where I read up about treatments. I wasn’t given any information about AF by the hospital. So, I pushed for catheter ablation to try to help James’ heart to go into normal rhythm. Had I not been proactive in doing this, I doubt we would’ve received any therapy.

James was offered cardioversion instead, which worked very briefly but the AF returned. We then went private to see a cardiologist who suggested a rhythm controlling drugs option rather than the surgical route. So amiodarone was prescribed but it didn’t suite James at all. It got to the point where he couldn’t go upstairs or even put the rubbish out without taking a break.

I then read an article about AF, in which the AF Association was mentioned. I got in touch with Jo Jerrome at the charity, who offered me all the direction I needed and suggested we seek advice from a heart rhythm specialist, or electrophysiologist. That is how we eventually got in touch with Professor Richard Schilling, who offered catheter ablation. Once we met Professor Schilling’s team, we were in great hands.

Sometime later, my mother mentioned she was feeling tired and breathless a lot recently but her doctor couldn’t seem to identify the problem. I checked her pulse and noticed an irregular heart rhythm, so instructed her to tell her doctor to do an ECG to check her heart rate. The GP did this and detected AF. So now my mother is diagnosed with AF too.

The whole experience has shocked me about the lack of awareness and promotion of AF, which is so common. More needs to be done to prevent AF strokes, rather than react when they happen.

Earlier this year James had surgery for an unrelated condition, so had to come off warfarin temporarily. After that he could not get appropriate time in therapeutic range (TTR). 

Despite how much James was struggling to normalise his INR levels, his GP insisted other anticoagulants were too expensive, they were not approved by NICE and why change if he had been on warfarin for over four years. But the fact was – he couldn’t reach TTR level. And although he had been taking warfarin for years, the time and effort it takes to go to the clinic to get your INR checked, as well as discomfort of being injected seemed to us a good enough reason to get an alternative if it was available.

The GP was adamant on the decision. Eventually, it took for a letter of recommendation from Professor Schilling’s team, as well as me producing evidence of NICE approval of new anticoagulants. James was then switched from warfarin on to rivaroxaban, and he has been getting along with the anticoagulant just fine.

I think the best way to describe the effect of a stroke is like throwing a pebble in water – the ripples that come from it as a result continue and are bigger, and more far-fetched. Likewise, the impact of stroke on our lives five years later continues to have a rippling impact.

This year, James’ life insurance stopped when he turned 65. I have been trying to get alternative cover and have been told by some insurers that he will not be covered because he has a history of stroke. He has had three surgeries to try to bring his heart back into normal rhythm, but it remains irregular. It just does not end. 

Stroke doesn’t just affect the individual, it cripples the entire family. We are reminded about the stroke every day – if James doesn’t answer for any reason or if I don’t hear from him every so often, I panic at the thought of finding him keeled over somewhere with another stroke. I’m forever mindful and watchful of what he does, where he goes, how long he has been gone.

James once went put to buy milk and left his mobile phone at home. He decided to get the car washed as well but there was a long queue at the car wash. By the time he returned home I was fraught with worry. Stroke has left a lasting legacy on our lives.

If we had done something when I first noticed his irregular heartbeat, the stroke may have been prevented. Without the stroke, our lives could have been very different. 

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