Permanent Afib

[Mollykin]

Hi everyone, I was diagnosed with persistent Afib in August when I ended up in hospital with pneumonia. I was put on Amiodarone which I was allergic to so had to stop and cardioverted early December which only lasted two weeks. I’ve just received a letter from my cardiologist out of the blue to say that I must now accept that I will be out of rhythm all of the time. I really struggle with feeling breathless, struggle a lot with stairs and can’t walk too far. This has made me incredibly low and scared. My last echo said my heart wasn’t pumping to well and I had a stretch on the left side of the heart. I have an active job and doing a degree and have two young teenagers and struggle big time with tiredness. Any advice on how I can cope with this would be very welcome. Was really upset I didn’t receive a phone call from the cardiologist to discuss any of this and feel very abandoned. Thank you 😊

[Bradee12]

Something doesn't sound right! How high does your heart rate go? If it's like >150 for long periods you are going to need some serious attention.

[Mollykin in reply to Bradee12]

It was very high to start with and flooded my heart and lungs but now under control on bisoprolol 1.25 mg. it’s not pumping properly which scares me.

[Mollykin]

Thank you for your reply. I asked to be referred to an EP and was told no as I couldn’t tolerate the Amiodarone and ablation too risky. I’m thinking of saving and going private to see annEP.

[Bradee12]

"been told ‘live with it’ with no discussion or explanation."

That is unacceptable coming from any Dr.

But if the bisoprolol is helping it will buy you time to see another cardiologist. Make sure you get a good recommendation from friends. The Cardiologist can then decide if you need to see an EP or not.

And before you go, may I suggest that you write down the questions you have and read them to the Dr. Don't rely on memory.

[Hidden]

You have mentioned being overweight in a previous thread. If you can get your BMI to a low normal number, that could help with your symptoms, and perhaps even make you a better candidate for possible ablation.

In your position, I wouldn’t wait to be referred for a second opinion. I would ask here or on the AFA forum for recommendations for an electrophysiologist (EP) at a regional centre.

Then self refer for a private appointment which should cost between £200 - £300 (with luck the consultant will do an immediate basic echocardiogram and an ECG without extra cost if you are face to face, which I would recommend)

For that money, you should get a treatment plan and recommendations for any further tests to be arranged by your GP on the NHS. Private tests are obscenely expensive if you are self pay.

Print off relevant correspondence from your files held on your GP practice website including all results of blood tests, scans and ECG recordings, to send to the consultant, take with you or both.

You should get a private appointment within 2-3 weeks. Be sure to look for a consultant EP who has at least 750 ablations under their belt and is aged under 60. The procedure can last up to 6 hours or more, and requires stamina from all concerned!

If the advice is towards ablation, there will be a wait of up to 12 months on the NHS, though your circumstances and domestic situation may give you some priority. So you will have plenty of time to get your weight down, if you still need to.

From personal experience, I would say that the single factor which has improved my symptoms from permanent AFib/AFL is getting my BMI down to the very lowest level of the healthy range.

[Mollykin in reply to Hidden]

Hi Badger thank you for this I didn’t realise we can self refer I shall definitely look into that. Weight gain has been since I started beta blockers and diet not working but I shall continue to try.

[Peony4575 in reply to Mollykin]

I was only on atenolol for a few months and piled on the pounds which I am now working off . You are having it tough . Did you have the breathlessness and exercise before you started bisoprolol ? If not may be worth asking if you can change to another beta blocker . A lot of people including me can’t tolerate bisoprolol because of side effects like that . I agree with Badger. If you can, pay to see someone else

[Mollykin in reply to Peony4575]

I’ve asked the cardiologist and gp if I can change as it’s defo side effects from bisoprolol but they repeatedly say no. I am researching finding a good EP. Thank you for your reply