Advice greatly needed please - Atrial Fibrillati...

Atrial Fibrillation Support

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Advice greatly needed please

Caza profile image
Caza
44 Replies

Hi, my husband was diagnosed with AF about 9 months ago. It was at a pre-op assessment for a hernia that they discovered it. They took it very seriously & were brilliant but we left the hospital in total shock. Since then he’s had all sorts of tests. His heart stays in AF. He had a cardio version which worked for a couple of days. Four weeks ago he had an ablation, we were told that they had trouble doing it & I’m not sure if it was completed. Since then he’s had an echo scan which we’ll get the results through on his next appointment which is on 14/3. My question is this, he doesn’t seem himself at all. He’s so very tired, he’s a dreadful colour but he also gets very confused muddled very forgetful, asking the same questions over & over. I’ve gently suggested going to our GP but he won’t go. Should I be worried & should I be doing something. I feel completely out of my depth. Help needed.

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Caza profile image
Caza
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44 Replies
meadfoot profile image
meadfoot

Sorry you are having a tough time both of you. Tiredness after ablation is certainly not uncommon so he needs to rest as much as possible. His heart has taken a battering and will need time to recover. Could you ring his consultants nurse or ask the consultants secretary if you could have a word with him or her as you are concerned about your husband. Alternatively could you speak with your GP even if it's on the phone and ask for advice if your husband isn't willing to see his doctor himself.

Given you are concerned about his forgetfulness etc it's wise to speak to the relevant medic for advice and support. Please don't just put up with it, for both your sakes you need some help and reassurance. Best wishes.

Caza profile image
Caza in reply to meadfoot

Thanks for your reply. I did ring the nurse after the ablation because he was so breathless that’s how come he had an echo scan last Thursday but he’s very reluctant to discuss his forgetfulness Just don’t know if it’s all part & parcel of his recovery.

jeanjeannie50 profile image
jeanjeannie50

Hi Caza

Yes, extreme tiredness is certainly one of the effects of AF.

I'm wondering about the memory problems though as your husband's do appear to be a bit extreme. What age range is he in and what medication is he taking? Beta blockers can make you a bit subdued and muzzy headed and I found Digoxin made that worse for me. A lot of members on here claim that their memory has declined with AF - or is it age? We really can't tell. If you've seen a marked difference in him I think perhaps you should bring that to the attention of your GP and ask if he could try some different tablets. The beta blocker Nebivol is said to have given a new lease of life to some AF sufferers.

Jean

Caza profile image
Caza in reply to jeanjeannie50

Thanks for your reply— he’s taking Bisoprolol Fumarate -Flecainide Acetate—Apixaban. He’s 71 but he’s always been fit & well. I might see if the GP will talk to me. Just not sure if I’m expecting too much too soon.

jeanjeannie50 profile image
jeanjeannie50 in reply to Caza

No Caza, you're not expecting too much with relation to his memory. Either speak to your GP about that, or contact the department where he had his ablation. Having an ablation can very often make you feel dreadfully tired for many weeks afterwards, sometimes it's months before you regain energy.

Please let us know how he gets on.

Jean

Caza profile image
Caza in reply to jeanjeannie50

Thank you, I wish they’d told us that he would be so tired. I think we both thought it would be similar to the cardio version in which he felt brilliant for a few days before it went back into AF. He’s very against me ringing the GP or nurse but I think I’m going to have to if no better by next week. Yes I’ll let you know how he gets on

jeanjeannie50 profile image
jeanjeannie50 in reply to Caza

I just don't know why people aren't told just how debilitating it can be after an ablation.

Before my first one many years ago (have had three), I asked when I could be climbing mountains again and was told 'after a day or so'. This would be foolish and is absolute rubbish, as many on this forum will attest to! The heart needs time to heal afterwards and scarring form where the burns have been made.The majority of us need two to three weeks taking it easy and after my second one I needed about 6 weeks before I could do anything that required a bit of effort.

Jean

Caza profile image
Caza in reply to jeanjeannie50

Yes I certainly wished I’d known. It wasn’t helped by me meeting someone who’d had it done & told me she’d gone to the theatre the next day & was fine & I’m sure she was but it certainly wasn’t the case for us.

An awful lot has happened to hubby in the last 9 months so I guess it’s not surprising he’s a bit befuddled so it’s great that he has you to look out for him. We are not medically trained so we can only express our opinions which are normally based on our own experiences and from what we have gleaned from reliable sources. If your husband was offered an ablation after the cardioversion we have to assume the hospital was reasonably confident that it would be successful. If this was all done on the NHS then you have been very lucky because to get where you are now generally takes a lot longer. If your husband had a Cryoablation (as opposed to an RF ablation) then it is possible that the expanding balloon which freezes the tissue around the pulmonary veins might not have ablated the whole area. This is not uncommon because very often the tissue can be irregular and very often, a second RF ablation is required to ablate the missed areas which is what happened in my case. You really need to read the AF Association factsheet on recovering from an ablation (link below) because it will help to understand the full impact of the recovery process. Dehydration is a big problem so make sure he drinks as much water as possible as this will quickly improve the amount of oxygen reaching the brain which in turn will help his current forgetfulness. You husband has had two significant procedures within a relatively short period of time and the medication needed to help control AF can have a significant impact on his wellbeing but hopefully, this may improve in time. This IS a lot for you to take on board but there is a lot of information available on the AF Association webpages and of course, there will alway be people here on the forum who will help you get through.....hope this helps....

heartrhythmalliance.org/res...

Caza profile image
Caza in reply to

Thank you. This was very informative. Yes I have read the fact sheet & found it very helpful. It has been a lot to take in. Yes it was done on the nhs & they were brilliant. I guess I didn’t ask enough questions at the time & had no idea of the seriousness of the condition or the procedure. He is getting lost of rest & drinks water but the memory loss is puzzling me. I know people can only offer me advice based their own experiences but it’s a wealth of experience & I can be guided by it. Many Thanks

Buffafly profile image
Buffafly in reply to Caza

For most people neither AF nor an ablation are 'serious' in a life threatening sense which is why an extreme reaction should be investigated.

Auriculaire profile image
Auriculaire in reply to Caza

Did he have a geneal anaesthetic? Sometimes there can be noticeable cognitive impairment in older people after thisespecially if it was for several hours. This usually improves but can take time.

Caza profile image
Caza in reply to Auriculaire

No he didn’t have a general anaesthetic but they did heavily sedate him, they said.

Auriculaire profile image
Auriculaire in reply to Caza

Maybe you could find out what sedative was used. Some are worse than others for memory problems. Certainly there are reports of such problems up to 3 months after a general anaesthetic.

.

I think all of us would rightly be worried if we or a loved one had problems like this four weeks after an ablation.

If his colour is very poor, and this is new, he needs to be seen urgently. Ring the surgery and ask for a home visit from the GP or the district nurse today.

Did he have a general anaesthetic? At older ages, confusion after a general anaesthetic is not uncommon. Otherwise a review of his medication is important

Ask the arrhythmia nurse today to inform the cardiologist urgently His condition now may be related to the problems at ablation you referred to. An echo after an ablation is uncommon. and may suggest he had some fluid round his heart.

If you are not making any headway, please ring 111 tonight for advice about the next step.

Caza profile image
Caza in reply to

Thanks for the reply. I don’t think it is urgent as such. He’s very pale & looks so tired. He’s driving & reading the papers etc.. it’s just that his concentration is shot & his long & short term memory is just ‘not working’. No he didn’t have a general anaesthetic but they did say that they had to give him more sedation because they were having trouble. It took 3hrs.

If I thought he needed urgent medical care I would certainly make sure he got it.

Buffafly profile image
Buffafly in reply to Caza

Hi, I know we are all different but what you describe doesn't sound 'normal' to me and I would push for more medical attention if it were my husband. I know it is worrying as I had the same experience after my husband had an operation but that was a huge abdominal aortic aneurysm op and he nearly died from blood loss. He did recover eventually. It can't do any harm to get him checked out? Especially as he is driving which can't be very safe. I don't know if he is still in AF, because that would make a difference. Best wishes, please let us know how he gets on.

Caza profile image
Caza in reply to Buffafly

I would say he is still in AF as his breathing is as bad as it was before but of course I don’t know for sure. He says he feels like it hasn’t changed. My problem is that he won’t go to the doctors & I don’t think he’s bad enough to call them in. His driving seems fine no different to before. Thanks for replying.

Buffafly profile image
Buffafly in reply to Caza

You can tell simply by feeling his pulse. If it is irregularly irregular he is in AF. It sounds as though he may be short of oxygen but of course only one way to find out.

Caza profile image
Caza in reply to Buffafly

He won’t let me take his pulse & he won’t take it himself. I can tell by his breathing that it’s no different than before the ablation & in fact I would say it’s slightly worse. Thanks for replying.

ijan profile image
ijan

Sounds as if you've both had a testing year!

My partner has been through many procedures, though none for AF (I'm the one with heart arrhythmia). Like your husband, he is very reluctant to seek medical advice leaving me to research, worry, and attempt to steer him in the right direction.

I've found consultant's secretaries very helpful in getting questions answered and worries allayed, or addressed. For arrhythmia, and EP proceedures, the specialist nurses have supported many through the ablation process and may be open to questions from you if your husband doesn't want to contact them himself.

Good luck and please remember to look after yourself!

Caza profile image
Caza in reply to ijan

It certainly has been a testing year in many more ways than AF 😩 I tried to have a chat with him last night about going to the GP but he’s very adamant that he doesn’t need too. He has asked me not to phone the nurse/consultant just give him time. Obviously if he gets worse then I would override him but at the moment I don’t think I should. I somehow thought life would get easier as you get older boy oh boy did I get that wrong!!

ijan profile image
ijan in reply to Caza

Having been in a similar position I understand how difficult it can be to take action when your husband is adamant that he wants to 'sit it out".

Although, his current malaise might be due to the recent ablation there is also a possibility that something else is going on. Either way, you need advice from someone who is medically trained. Letting things drift could result in his condition deteriorating when a timely intervention could have improved the situation for both of you. When my partner resits seeking medical advice it is because he is fearful of another hospital admission. Understandable, but very stressful for me as I have to decide when to take action in his/our long term best interest.

Take care, and do look after yourself.

Jan

Caza profile image
Caza in reply to ijan

Thanks your right, he’s frightened. A lot to take in. He now has 3 appointments booked for the beginning of March, I’m keeping a close eye on him & will make sure he gets seen straight away if I think he needs to.

ijan profile image
ijan in reply to Caza

Good to know you have those appointments booked.

I find it best to go in with my partner otherwise his stock respose of, "Fine Thanks!" to, "How have your been since I last saw you?" does nothing to get the best from the long awaited appointment:-)

Take care.

Jan

Gincalpe profile image
Gincalpe

I would say you should definitely seek medical advice. A phone call to the arrythmia nurses at the hospital is a good place to start. I am 72 and had a cryoablation 4 weeks ago and feel fine and my heart rhythm is normal and I have hadnone of the side effects you describe.

Caza profile image
Caza in reply to Gincalpe

That’s brilliant & that’s exactly how it was told to me by a woman I met. He’s very against me seeking help. I will watch & wait. Thanks for replying.

Buffafly profile image
Buffafly in reply to Caza

Dear Caza, has your husband always been very uncooperative? Because if not I think now is the time to take charge.

Caza profile image
Caza in reply to Buffafly

That’s a really good question that’s really made me think. He has never really been ill up until now. I guess he has always been stubborn but it’s never been an issue. I think he’s terrified to be honest. We’ll get there.

Buffafly profile image
Buffafly in reply to Caza

You are right, he has his head firmly stuck in the sand, very understandable. I hope you don't mind, I briefly described your worrying and frustrating situation to my husband. His comment was crisp, '**** the husband, call an ambulance!'. I had to laugh at the contrast to all the carefully worded long replies to your post 😊 Best wishes to you both, hope the appointments in March are helpful.

PS Mr B's strong reaction may have been promoted by an incident when the friends he was playing cards with noticed he was having a mini stroke but didn't take any action......

Caza profile image
Caza in reply to Buffafly

I promise I will if needed. At the moment I don’t think it is.

robert1957 profile image
robert1957

hello caza please research magnesium deficiency and symptoms of magnesium deficiency also benefits of vitamin d3 and k2 Mk 7

Caza profile image
Caza in reply to robert1957

Thank for replying. I’ll try—I’ll let you know how I get on.

robert1957 profile image
robert1957

thankyou and good luck

Marney profile image
Marney

Hi Caza. It’s Valentine’s Day in Canada. Buy your husband a machine that tests for afib, heart rate, blood pressure. Tell him you love him and this is his Val gift. If it was me I would be firm yet calm. He will probably use the machine since you invested in it( there not a lot of money. ) At least these numbers from it is a good start to see what is going on. I know it has helped me. I have had some of these problems in the past, and with the knowledge I received from monitoring myself I was able to tell the EP and he was appreciative and together we changed some meds and this really helped a lot.

Knowledge in health issues to me is like Gold.

Marney

Goalnsr profile image
Goalnsr

Hi Caza,

I’m so sorry to hear of your husband’s health issues. It is also very difficult as caregivers to know where the boundaries are, as far as insisting that our loved ones go to the doctor or be more proactive about medical issues.

I wanted to reach out to you because a very similar situation happened to my coworker and she became very frustrated that her husband would not go to the doc when he wasn’t feeling well. He had afib but also had other health issues. One day, he came home from work, ate supper and then said he didn’t feel well. She insisted that he call 911 but he did not want to go. So they waited a while and when he wasn’t any better, she called. Unfortunately he passed away before the ambulance got to them. He had an aortic aneurysm that he knew about, but was scared of having surgery. She feels so much regret that she did not push him more to go to the doctor, but the truth is there is no way to know if it would have made a difference.

I’m not sharing this to frighten you. However, as caregivers, we need to sometimes lovingly nudge our loved one into action because fear can paralyze them from moving forward. I know that fear all too well as I am having an ablation tomorrow and have considered canceling it many times. My husband gently reminds me that I am doing something proactive to improve my health and we talk about all the things I’ll be able to do afterwards, without the constant fear of when my arrhythmias will hit. He reminds me that I am doing great and how proud he is of me for making this difficult decision. He lets me cry when I need to cry. Most of all, he understands when I get angry or frustrated and say “I’m going to the operating room, you get to go to the waiting room.” He doesn’t hold it against me because he understands that when the time comes, I will walk that path alone, even though he’ll be with me right up to and right after the procedure.

My advice would be to share your feelings with your husband and at the same time let him know how proud you are of his strength, that you’ll support whatever decisions he makes, but that you want him to make those decisions with all the information he can get from his doctors. Listen without judgment and remind him how confident you are in his ability to get through this.

Here are some of the things people said to me that helped me move forward with my medical hurdles: Knowledge is power. Knowing is better than not knowing, as it allows you to make informed decisions. Get a second, third, or fourth opinion in order to be sure you are comfortable with treatment decisions. Afib is treatable and people live long and happy lives with this condition. And here is a big one: FEAR IS A LIAR. It makes you think you can’t face what’s coming but that’s an illusion. The mind is a powerful thing! Think of all the things humans have endured. And finally, the medical technology to treat heart conditions is truly amazing. With minimally invasive procedures and medications, we are lucky to be alive in this day and age!

You will both get through this. ♥️

Caza profile image
Caza in reply to Goalnsr

Thank you for your reply & good luck with today.

Aquataine profile image
Aquataine

Hi Caza

Sorry to hear about your husband, my husband who is 67 was diagnosed with AF last August, he has been very poorly and exhausted all the time sleeping up to 15 hours a day. However after his bisoprolol (beta blocker) being increased recently he has improved markedly. He is not his old self but has some quality of life now. My husband has been mentally slower and very uninterested in life till this last improvement. However if I was you I would be worried about the confusion and maybe ask the GP to visit. It may well be a consequence of his medication but it should be looked into. Hope all goes well

Caza profile image
Caza in reply to Aquataine

He has 3 appointments booked with the hospital in March, all in the first two weeks. So I’m hoping that they’ll be able to throw some light on what’s happening. Of course if things worsen then I’ll make sure he gets seen straight away.

Janith profile image
Janith

What medication is he on for afib? What is his age if l may ask. I think that he should be checked out forthwith.

ronnt profile image
ronnt

hi sorry to hear about your husbands struggles...you may want to check side effects of his meds i know eliquis caused me to have memory problems when i was on it few yrs ago ended up back on coumodin problem cleared up and im in my 50's

Caza profile image
Caza in reply to ronnt

Thanks for the reply, I did wonder that, I’ll take a look.

maxandpoppy profile image
maxandpoppy

Hi my husband age 75 has had paroxysmal AF for 5 years. In the last few months it seems to have become persistent. We were very interested to hear about your husband's slowness, confusion, tiredness because our experience is the same. He's got really worried and frustrated, not being able to get words out. We were thinking TIAs and dementia so he had a brain scan but all was well. So we are thinking it must be the AF. His blood pressure is often low which presumably doesnt help with oxygen to the brain.

My other question is please we would like to hear about people's experiences with Amiodarone, which he has been on for about a month - how effective it is, is it prescribed long term, have people experienced awful side effects, has its long afterlife caused problems. Thanks

Caza profile image
Caza in reply to maxandpoppy

That’s interesting, his blood pressure has been on the low side. I hope things improve for you & your husband

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