Accessing care

[ElizabethBee]

I was finally diagnosed with AF in June this year (2023) after 7 years of experiencing fluttering in my throat, occasional heart racing during the night and a feeling of occasional faintness during the day. Granted Covid put a stop to most hospital and GP visits so I soldiered on with concern which didn’t help my condition. Last May (2022) a GP finally listened to what I had to say and started the process of me visiting a Consultant at the Heart Hospital. It took until this year to get an appointment and after several tests the Consultant was happy that I was fit to discharge from his care with ongoing BP medication. Then he advised a final test of a 24 hour ECG monitor - just to be on the safe side. Thank goodness he did. It captured 1 hour 43 minutes of continuous AF. I have begun taking Edoxaban as well as my BP medication Adizem. The point of this post is the frustration of getting someone to listen and take seriously what you are saying, the slow referral times for appointments and a dedicated Cardiologist to take all the necessary steps to diagnose the problem. It can be a frustrating journey and the frustration, length of time involved between appointments (12 months in my case but 7 years since my first bout of AF which lasted 6 hours) and the need to keep returning for tests which can all be done on the same day with a little organisation - all contribute to a feeling of stress which should be avoided. Thankfully I am now in a system that should by all accounts keep me stress-free but a two month follow up appointment should have culminated in me seeing the Cardiologist this month but I am still waiting to hear from the appointments team!

[BobD Volunteer]

Sadly oh so common. Even more sadly I think is that fact that ladies will often have even more trouble getting diaganosed than men. " It's your age" "it's anxiety" etc are all common comments . Some years ago I posted that ladies are their worst enemies in this regard as pride prevents them from turning up at the doctor's looking like they feel so they still do their hair and makeup.

I know it shouldn't be that way but all too often it is. Add in the past problems of covid , the growing and aging population which puts such a strain on our NHS here in Britain and I doubt things will get better very soon.

It is also important to accept that AF can be the devil to find. You said yourself that your cardiologist had done every test known to man (person?) and then the last re-test found it. Paroxysmal AF is such a mongrel condition it taxes the system.

Regarding your two month appointment it is also vital to understand the shorthand here. My AF journey these last twenty years has taught me the following,

NHS Speak Three months Reality Six months.

NHS Speak six months Reality nine months to a year.

NHS speak Urgent Reality a month/ maybe six weeks

These are guide figures only and depend largely on your postcode.

OH and a final warning. If you don't have a sense of humour you shouldn't have joined.

[ElizabethBee in reply to BobD]

Thank you for your reply Bob. You’re right of course in every respect and yes, I am learning to have a sense of humour. Happy journey! 🐝

[kitenski]

It's good news they did manage a proper diagnosis in the end. Have they discussed about what they are going to do/what you do when you have an AF episode?

[ElizabethBee in reply to kitenski]

Hi Kitenski. No, I presume that is what this follow up appointment (which I am still waiting to hear about) is for. I have learnt though through trial and error, that propping myself up in bed (it usually happens during the night) and sipping water, relaxes me to the point of dosing off again and when I wake, it has usually settled down. Thank you for your reply 🐝

[Buffafly]

This is why the Kardia is so popular! You can record a rhythm strip and get a fairly accurate diagnosis immediately. I say ‘fairly’ because it recently diagnosed frequent ectopics as AF but I knew it wasn’t because I had recently seen an AF nurse (brilliant!) who pointed out that on my hospital ECG it showed frequent ectopics which imitated AF - symptoms: lots of ‘hiccuppy beats and breathlessness. The next step is to get your GP to take it seriously - my GP was very dismissive, as I persisted wrote to Cardiologist mentioning’phone app’ (subtext, this woman has health anxiety) who took one look and arranged an urgent appointment with an EP because I was having long pauses in heartbeat. Good luck, fortunately you seem to have it as ‘under control’ as you might hope. You might try raising the head of your bed slightly and making sure you are not dehydrated when you go to bed as your episodes are at night ❤️‍🩹

[ElizabethBee in reply to Buffafly]

Thank you for your reply Buffafly. I am totally at the beginning of my AF journey and learning as I go along. It was far from my mind when I began with these abnormal palpitations 7 years ago but strangely, I feel much better for having a diagnosis. 🐝

[Sixtyslidogirl]

like you, I have been having having episodes of something for years, particularly racing heart in the night. I put it all down to menopause palpitations, as does Dr Google. You have probably already done this, but one thing that has made a massive difference is to me is giving up alcohol. Whatever my heart is doing now and it is far from perfect, it is not waking me up racing in the night. I still do have some pangs for a drink, but remembering those nights puts me right off.

[ElizabethBee in reply to Sixtyslidogirl]

Hi Sixtyslidogirl, thank you for your reply. I have completely turned around my lifestyle (all suggested to me by my GP in 2016 when I first experienced flutters) especially my drinking and eating habits. I only ever drank socially but I haven’t had any alcohol since 2016. My GP also suggested to only have one coffee and one tea daily because of the caffeine but I was truly a teaholic and couldn’t just have one cup especially in the mornings. I gave up both tea and coffee and haven’t touched either since 2016. As I was already taking BP medication and my cholesterol was 5.4, it was suggested I look at ways to lower my cholesterol naturally as I didn’t want to take statins. So I now eat Mediterranean style when I can, mixed salads and fresh varieties of vegetables cooked/roasted in olive oil etc. although my fruit choices are limited (not a great fan). My granddaughter gave me her old FitBit watch 3 years ago and I started to lengthen my daily steps until I was walking 5 miles (and more) daily. All this has truly turned my life around and I feel much better and wonder just how different things may have been if I hadn’t taken some control over this thing called AF. 🐝

[secondtry]

Once fully immersed in the system my experience is that it is good, the problem is reaching that point. Diplomatic pressure needs to be exerted these days and if funds allow you may find you have to go private for a more rapid pathway, a second opinion or just reduce anxiety. Be persistent it does pay off 🙏 🙌.

[ElizabethBee in reply to secondtry]

Thank you for your reply Secondtry, I do feel more relaxed now I know I’m in the system. Have a lovely day 🐝

[Vonnegut]

Gosh! Your experience trumps mine! But I might still be waiting for a diagnosis if I hadn’t gone to Bath Spa with my daughter to celebrate her birthday almost five years ago - not advisable for those with heart conditions!! I’m sure mine developed after a bout of shingles when I got the pain before the rash and couldn’t get an appointment (pre covid) for almost two weeks by which time the pain had gone but the rash had arrived but it was too late for an antiviral! I had been very fit and healthy prior to that and now have chronic fatigue as well as the paroxysmal AF but still alive at 79 and able to enjoy lots!

[ElizabethBee in reply to Vonnegut]

Very frustrating Vonnegut - thankfully I do not feel much fatigue. We need to live life in the moment and enjoy those moments completely. 🐝

[Vonnegut]

Exactly! That is my attitude too! We can only live in the moment and enjoy what we can-

SandiBee