confusion

[Luludean]

I have just read the many replies to Hammerhead . His post was about his “ open heart surgery “ in Papworth , due in June. The reples show me how technically “ uninformed” I am . May be that is a good thing for me.

But , I have to confess to being slightly jealous of other people’s care.

in 2000 I had mitral valve repair in the lovely old Papworth. The operation done by their top surgeon was a success. I came home after 5 days. I was alone with my 11 year old daughter, It was hard , especially for her. But we got through the difficult 6 weeks till I could drive. 8 years later , after a nasty virus I developped AF . AF then was still deemed to be simply caused by hypochondria . Luckily those times are gone!

My AF is persistent, 2 ablations failed . I take my Apixaban , Digoxin and Losartan , I have learnt to live with it and am thankful that these pills work for me.

But, I am no longer having yearly cardio checks and, I do not ( never have had) an arrythmia nurse. I think I have dropped off Papworth’s radar. The last cardio consultation I had was 3 years ago , a “telephone” consultation not with Papworth.

Sometimes I feel quite forgotten . Not moaning , more mystiified.

[Buffafly]

Hi Lulu, you’re not forgotten, just not complaining! When I have an AF ‘crisis’ of some sort - too fast/too long - I sometimes get referred to cardiology. Last year I was finally referred to the AF nurse who was fantastic and took a really ‘in depth’ history. Then, as I didn’t need a cardioversion by that time I was ‘referred to cardiology’ to attend a clinic which then turned out to be a phone call! I was determined not to be discharged again because by the time you get referred through your GP it’s too late so I said that as I went into persistent AF every year during hot weather I was very keen to get out of that cycle and did they have a plan for this year? So he said they would book a checkup in June but I could phone if I had problems in the meantime. I am much happier with that arrangement.

That’s probably TMI but it shows how the system works (or doesn’t you might say) and how to get attention if you need it but under present circumstances ‘checkups’ seem to have gone. If you are unhappy with your QOL you have to shout! (Politely) Best wishes ❤️‍🩹

[CDreamer]

Once you have been treated you are usually returned back to primary GP care. It is quite normal unless you go back to GP with exacerbation, symptoms &/ or concerns and they then believe there is cause to refer you back for tests. Waits for none urgent care can be long, we were quoted 58 weeks for a follow up echocardiogram so we went privately - amazingly suddenly we appeared back on the radar.

There is no automatic follow up - Buff is right - they who shouts loudest gets attention.

[Hidden]

I feel for you, and we're in the same boat. I'm in Wiltshire and I had a phone call a few months after being diagnoded with PAF 2 1/2 years ago and an 8 minute face to face with a cardiologist 18 months ago. I was supposed to be followed up after 6 months, having been prescribed Flecainide & Biso as PiP. I just found the letter from the cardio to my GP and it clearly says 'to be followed up' but that was 18 months ago, as I said, and nothing since.

I have been given not one piece of information about AFib other than 'take these pills'. Everything I've learned about AFib I learned on this forum & Dr Google. Not an arrythmia nurse or service in sight.

I think it's very 'postcode lottery'ish. It's shocking really. This is a wretched condition that has a huge impact on our lives.

[mav7]

But, I am no longer having yearly cardio checks

Do you have an annual check with your GP where he discusses your cardio health ?

You don't mention concerning symptoms so it appears your afib is well controlled, but seems should be monitored at least annually by your GP.

[credimus]

I had my tricuspid valve repaired in July 2021. I got my post op consultation on September 2021 and annual check ups with two echocardiograms thereafter. I am happy with that, I try to avoid visits to hospitals in the present climate.