I have been signed off from my care at hospital after 10 years of A fib and a stroke

[01maxdog]

I had a letter from my hospital that was dealing with my last ablation in 2019 , ECG ‘s etc . That they would no longer be looking after me - 2 weeks ago. I went back into A fib summer of 2020 during covid , I had to self assess my medication and my heart rate via my watch . I could see no one because of covid . Eventually I had an appointment for a phone call asking how I was . This Dec I was due another appointment as a follow up . My Gp has requested the usual once a year blood test and blood pressure . I am in permanent A fib and feel the system has set me loose . I find it hard to see my GP and have no idea if my medication is correct as my blood test has come back borderline , with a low count on white blood cells and neutropenia (?) any thoughts please

[jeanjeannie50]

I can only tell you that I have been in constant AF for about 4 years and my heart soon settled into a resting rate between 60-90bpm. It's constantly up and down. I've had 3 ablations and lots of cardioversions and was told that I wouldn't be offered any more or either.

Haven't seen my EP since, but did see a cardiologist twice in the last year. He took me off of Flecainide as looking at my ECG he said it was probably causing more harm than good. Feel better without it, so he was right.

So don't forget if you are concerned, your GP can always refer you to a Cardiologist. When I was referred it was to an elderly one who had obviously stepped in to help with the backlog of patients needing help. I was disappointed at first but he was so lovely, I had an ECG and echo-scan of my heart. I couldn't have asked for more.

I just take Metoprolol 25mg morning and night and Warfarin

Jean

[Lilylui in reply to jeanjeannie50]

Did the ablations help?

[jeanjeannie50 in reply to Lilylui]

First two definitely didn't help. Not overly sure how much the third did, was it that which made me feel better, or me changing my diet drastically. Really don't know.

[01maxdog in reply to jeanjeannie50]

Thank you . I was more concerned about self medicating and tweaking my drugs until I felt ok and stable . Bisoprolol digoxin rivaroxaban tildeium and a statin , my resting rate is around 65 but when i excercise it’s 140, just need reassurance

[kkatz]

I personally would feel let down if I was in your shoes but not enough about how you feel or how you are.I personally had a big fight having gone persistent in Jan 21.It took 2 years until ablation and I was told only 50% chance but I could always have another if need be.

My main reason for fighting was my big loss in Qol and this was my best fighting tool.

Have they said they can't do another ablation?And why?

[Lilylui in reply to kkatz]

Had the ablation worked ?

[kkatz in reply to Lilylui]

8 months at the moment.

[01maxdog in reply to Lilylui]

It was my third and worked for a few months , and was my last one

[01maxdog in reply to kkatz]

It was my third one and i can’t have another , scaring of the heart was mentioned , so that’s that

[Teresa156]

I do sympathise with you as you seem to have been left in the cold and it doesn’t seem right. I know you say it’s hard getting a GP appointment, but I think you are going to have to get one, as you are entitled to one. If you have to have a reason, it’s purely to discuss your heart issues and recent blood test results, which have come back borderline.

How is your quality of life? This is what it all boils down to and it would help writing notes of how afib affects your day to day life so you have it on hand at the appointment. If your QOL is affected badly , your GP will have to refer you back to Cardiology, as they are and should still be looking after you and checking on you. They too are the ones who can change your medication as necessary.

[01maxdog in reply to Teresa156]

I’m on 5 different drugs that I sorted out myself just need to know I got the mix right . So hard to get an appointment where I am

[Teresa156 in reply to 01maxdog]

Hi 01maxdig,

I do believe you when you say it’s hard, but it must be possible, as they are there to help patients. You must be able to get an appointment.

Failing that, if you can push to it ( about £250) you could make an appointment to see a private cardiologist. You’d get one to one time and you could voice all your concerns. If you Google it, you can contact the secretaries of cardiologists in your area. I see you’ve had three ablations. Scarring is what happens to the heart during them and that is supposed to happen. Did they say you couldn’t have anymore? It might be worth trying to get a second opinion perhaps, if you can?

[Autumn_Leaves]

There are quite a few people here with permanent AF who can share their valuable knowledge and experience about how best to self manage. I would prefer to be under the care of a consultant but it seems that if your situation is stable and there are no changes, many people are being discharged back to their GP. Is there any recommendation for repeat echocardiograms or annual ECG or anything like that?

As for your blood test results, please don’t worry. I’m a haematology patient and have a lot of blood tests and it’s quite interesting how changeable they are, particularly the white blood cells and especially neutrophils. I’ve had WBC below range many times and they’ve always come back up again. If you’re fighting off an infection or have any sort of injury, they usually go up. My husband’s WBC was above range during an arthritis flare up but went down when the arthritis settled. Your immune system is always on surveillance so WBC numbers will vary a lot. Even though my WBC had tended to run low, if I’ve had a blood test the day before I come down with a cold, my WBC will be up, so you can trust your body will know what to do. Don’t worry about borderline results. I’ve had two of the same blood tests done at the same time and one result has been a bit below range and the other has been inside the normal range, so borderline results are meaningless really. If you were way below range over a long period that’s a cause for concern, but I doubt it’s anything to worry about

[01maxdog in reply to Autumn_Leaves]

That’s interesting. I’m also in a lot of pain with a dodgy knee , arthritis, and sciatica in the other leg . Spoke to the GP who gave me excercise 2 years ago which do nothing , and a scan for my knee said if you can live with it don’t have a replacement! I was given anti depressants for the pain but hate taking them and being on blood thinners and variou other drugs can only take paracetamol. But hey , I’m alive

[secondtry]

I wouldn't trouble your GP and instead make a private appointment with a trusted/recommended cardiologist and keep that up annually. Reduces anxiety.

[Desanthony]

Are there cardio nurses attached to your cardio department. Because I am stable - in permanent AF I wanted to talk to them so have telephoned and they phone me back. If necessary I have a Kardia and send them the read out the morning before the telephone or in person appointment. I was shocked to find out that it was just over 2 years since I had actually spoken to them before so had "dropped off" the list but now because I have phoned with a query I am back on. My GP deals with full set of blood tests every year and although I did have a bit of a palava to go through with 3 cancelled appointments to get to see someone to get my results I now have them and they are fine. If you are worried about the results and need to discuss them with your GP then call and make an appointment. Here we can have an emergency appointment the same morning or afternoon/evening if we ring between 8 and 9 and 2 and 3, and a routine appointment within 3 weeks.

Good Luck

[01maxdog in reply to Desanthony]

Thank you for your reply . I haven’t spoken to any one for 2 years when I last gave an ECG from my watch to the cardio nurses . I will have a second blood test in November as it turns out that the first one is borderline - reading my notes on the NHS app I have a low count of red and white blood cells . When those second results come through I feel I need to speak to my GP