Still having AF

[Debfro34]

Hi anyone on here had treatment but still in AF? My husband is on beta blockers, blood thinners and statins. He has just had a pace maker put in. He is still breathless and having arrhythmia esp at night and atrial flutter. He has hypertrophic cardiomyopathy. We are on a long waiting list for another hospital appointment and I am really worried. Thank you

[BobD Volunteer]

Sadly Atrial Fibrillation is a hard arrhythmia to deal with. Even when that is well controlled the heart often decides to throw another arrhythmia into the mix.

I'm sure that the pacemaker will start to help thing stabilise soon.

Has your husband ever seen an electrophysiologist, a cardiologist who specialises in arrhythmias? If not it may be worth getting a private appointment to discuss options if your wait is too long.

[Debfro34 in reply to BobD]

Thank you for replying BobD. We have been told the pacemaker will only help if his heart slows but they have increased his meds twice and his heart rate is still 90-105. We are NHS I'm afraid. He has been well looked after for the last 17years but since Covid has only been twice once for tests and once for the pacemaker. He is so breathless feels awful and I am really worried. We could not afford to go private I'm afraid. He is saying he would rather give up the drugs and go out on a heart attack or stroke because life's not worth living. I have called and asked for a quicker call back from the hospital but up to now the drugs have worked and we have not seen this before.

[Thomas45 in reply to Debfro34]

Electrophysiologists are part of the NHS system. You can ask your doctor to refer you to one. The Atrial Fibrillation Association can advise on your nearest electrophysiologists.

[jaz03 in reply to Debfro34]

Hi. Is he on Metroprolol? That is a Betta Blocker which makes me breathless. Even on 23.75mg.

Is he on PRADAXA?

Bisoprolol is better as a Beta blocker and should not make him breathless.

I agree he needs all of his history done and a specializing heart Dr to get to the bottom of everything.

Is he sweating profusely? Means his heart is under stress. Not enough oxygen getting around his body.

Cheri

[Debfro34 in reply to jaz03]

He is a sallow colour, he is breathless and I can see his pulse in his neck is very exaggerated. He is on Bisoprolol, a statin and a blood thinner. He is very tired after a small amount of exertion and he is not getting enough oxygen as when my mum came round with her oxygen monitor she told him to go to hospital as it was 55 but after he rested it went back over 67.

[baba in reply to Debfro34]

If his oxygen saturation is that low he should be in hospital.

[Debfro34 in reply to baba]

Hi you are right he was taken in this morning straight from GP office by ambulance. I couldn't get through to hospital so I drove him to GP and sat in reception until they agrees to see him. One ECG and tests later they called an ambulance. Waiting to see whats happening next

[baba in reply to Debfro34]

I hope he gets sorted and feel better soon.

[BobD Volunteer]

Having survived cancer these last eleven years life is very much worth living regardless of how slowly one has to live. It's amazing how much we kling to life when it is threatened to be taken away!

[jaz03 in reply to BobD]

Hi BobD

What kind of cancer Bob?cheri

[BobD Volunteer in reply to jaz03]

Prostate. Had radical prostatectomy, 33 shots radiotherapy plus three year hormone treatment since when they operated it had already escaped into surrounding tissue. (Took them five years to find it!) Six monhtly PSA blood tests since 2011 show it undetectable.

[Debfro34]

I hope he starts to feel the same. A very active man he is very angry and frustrated. Our son died from this condition 8 years ago at the age of 29 and he has never got over it. Congrats to you for a positive outlook.

[Desanthony]

Ask to be referred to an Electrophysiologist (EP). A Cardiologist can be likened to a plumber but arrythmia's are caused by electrical problems int he heart and an EP deals with these. Once i managed to get my cardiologist to refer me to the EP on her team I have never looked back - all on NHS.

[Debfro34 in reply to Desanthony]

Thank you for the advice. I will ring on Monday to see if they have one.

[etheral]

Sounds like he has Congestive heart failure due to the cardiomyopathy in addition to his arrhythmia problems. He certainly needs the best medical care available. I assume he is taking diuretics as part of his regimen. Sorry I'm not of more help, Best etheral

[Debfro34 in reply to etheral]

He is not on diuretics and no one has mentioned heart failure. Do you think that is a possibility? I will ask on Monday when I ring them.

[etheral in reply to Debfro34]

If he has cardiomyopathy and is short of breath, I think it is very unlikely that he doesn't have heart failure.. A simple Chest xray would show that.

[Debfro34 in reply to etheral]

I will check this out.

[bassets]

So sorry you are worrying like this, and for the loss of your son. As etheral says your husband needs the best care he can get and perhaps the best thing to do is to push for more help from your doctors. I hope things will be resolved for the better for you both soon.

[Debfro34 in reply to bassets]

Thank you for your kind words. Both my remaining sons have the gene , one now has a defibrillator as he was showing symptoms and my younger son so far is fine. He had six children not all with me and all 5 boys have/had it. Not our daughter. He feels guilty for killing his son (his owrds not mine) and I can see him giving up on himself. Hopefully the hospital will see him again when I ring on Monday.

[bassets in reply to Debfro34]

I understand but if he can get more help he may feel much better. As Theresa says, keep making a nuisance of yourself until you can get somewhere - and if you can find out about arythmia nurses they are a godsend and very reassuring. Best of luck x

[Oneday47]

Has anyone suggested getting the Wolfe maze procedure or maze procedure? I don’t know the different types of afib, and to be honest I don’t know even know what mine is called. I’ve had it for 15 years and after 5 ablations i am going to get it done. Just a thought to maybe ask your Dr. The recovery time is minimal with the the Wolfe maze procedure compared to the standard open heart one as well.

[Debfro34 in reply to Oneday47]

Thank you. I will add that to the list of things to ask. It just bemuses me so much is not suggested to him as a solution.

[jaz03]

HiLuckily I dont feel my persistent rapid AF.

I am finally (2.25yrs later) in control of my AF.

It goes up less on exertion.

It is the resting (15-30min) rate which is important. Also going up to 150-190 hbpm is serious especially if it takes a long time to go down.

My ECG recent since December when a private heart specialist took interest in me SHOWS 93.

No longer do I sweat dripping from face with and have to stop dead what I am doing.

I am now on 120mg Diltiazem which is a newish med since December, and reduced Bisoprolol.

My case has a history of stroke (embollic) with AF and 3 days later a scan showed I had undiagnosed Papillary Thyroid Cancer.

Now with Thyroidectomy and 12 lymph nodes removed (Just in time with 2 lymphs infected) I take the replacement Thyroxine Synthroid 125mcg and occasionally 150mcg. Keeping me to 2.0 - 3.0 TSH.

Then the above AF meds and 10mg Statin and PRADAXA.

That's me.

I successfully got through last Wed a TVT Surgical Mesh removal.

Cheri

[Debfro34 in reply to jaz03]

I am so glad you are on top of it now. Hope it continues for you

[Teresa156]

Hi Debfro34,

I’m paroxysmal AF over 10 years, controlled at the moment by Bisoprolol on a daily very low dose at the moment, so different to your husband. I’ve been on Bisoprolol since September. A lot of people dislike Bisoprolol and a lot love it.

Bisoprolol can make you feel breathless. It’s one of the side effects and at times it makes me feel breathless even on a small dose. What dose is he on? Has he been on it long?

Do you have access to Arythmia nurses at your local Hospital? I have been provided with a number at my local hospital for them and they are supposed to give advice…they work in the cardiology dept and he should have one too? If not, ask about that. Perhaps he needs to change the beta blocker to a something different and quickly by the sounds of it. I think you will have to insist. Bisoprolol is always the first one they dish out, but there are many others and they may be better suited to him.

Just keep on at them. Don’t give up calling and calling them for help.

Take care,

Teresa

[Debfro34 in reply to Teresa156]

Thank you

[Ablation7]

Sounds like he might need a hospital visit with oxygen that low. My Mom ended up with congestive heart failure several times due to AF. good luck!

[Debfro34]

Hi everyone. Just to update I could not get through to the hospital so I drove to GP and sat in reception until someone agreed to see him. The surgery did an ECG and called an ambulance. He is at the moment undergoing tests and I am back up there tonight after settling my autistic sons, Thank you all for your advice and support.