My Mum was diagnosed with AF approx 5 years and has lived a healthy and full life. Prior to Christmas we had 4 A&E visits and she is now in permanent AF. Her quality of life has diminished drastically and she has hardly left the house as feeling tired and unwell, medication has been increased dramatically and also now includes digoxon . She has seen a cardiologist briefly and underwent a stress test on Tuesday which has made her feel very unwell and unsettled. We were told her results would be sent away so no further treatment or advise for the foreseeable future. Could anyone advise if this time lapse the norm and other options i.e. a private consultation. So sad to see my once happy and outgoing Mum (she is 83) lose interest in everything and spend day after day stuck in the house.
Permanent AF: My Mum was diagnosed with... - Atrial Fibrillati...
Permanent AF
Really feel for you Sheila, the fact that your Mum has done so well until Christmas is obviously good, but it does make the sudden deterioation in her condition more difficult to come to terms with. Unfortunately, it will probably take time to get the help she needs to stablise her through the NHS, but if I were you, I would consider pursuing a two options. Continue with the NHS and push hard for her to be seen by a Consultant to see what can be done to make her more comfortable. Also, consider if possible, a private consultation which will be a much quicker process to enable you establish the same objectives but you need to be clear in your on mind what might be best for her. I would imagine she will want some input in that process as she sounds quite feisty and her views are clearly important too.
Not an easy situation, but hopefully others here will have some helpful advice to help you.
Thank you so much, do not have much faith in our hospital due to horrendous experiences with other family members and our GP's surgery not particularly helpful. NHS like curate`s egg unfortunately. Thank you for listening.
Nothing much to add to Flapjack’s post. The wait to see an EP in our area at this time is approx 6-9 months - even a private appointment with my EP is currently 4 weeks.
The stress test would, I imagine, be conducted by physiology - they would write their report, return to the referring specialist for interpretation. You could ring the cardiologist’s secretary to push but the whole system is under pressure and will vary from place to place.
The trouble with modern medicine is that there is so much specialism but in this case ensure your Mum does see an EP - cardiologist who specialises in the electrics of the heart.
A full assessment to see if there are any underlying, untreated conditions might also e useful if not already undertaken - such as thyroid function, liver & kidney functions, ECG & ultra sound.
If those all come back clear - it could be a review of medication is in order. A lot of medications for AF are for symptom control but they also carry side effects, fatigue, apathy and depression included.
It is hard to see loved ones deteriate. I haven’t been able to do much at all today - but thoroughly enjoyed watching the Winter Olympics!
Thank you, so nice to speak to others and yes unfortunately NHS struggling enormously at the moment.
Sheila, obviously we do not know what you know about AF, but I have seen a lot of posts from folk who have progressed from paroxysmal AF (comes and goes) to persistent AF and very often they have said that it is, in many ways, easier to live with. The general view is that the body adapts to the way the heart functions and very often, their symptoms become less noticeable/troublesome. Just thought you would like to be aware......John
My suggestion would be a private consultation with a geriatrician. Cardiologists are not engineered to provide an holistic assessment of a sick elderly woman who is likely to have multiple pathologies. I don't think you should assume your mother's problems will necessarily be resolved simply by fixing her heart. Do you think she may have developed a mild reactive depression consequent to her loss of independence? Are there as yet undiagnosed metabolic problems, mild uraemia secondary to dehydration, digoxin toxicity etc...
This is all within the remit of a good GP, but you have reservations about the local practice. For a geriatrician, this is routine, and she will also be better able to co-ordinate your mother's care.
But don't say the word geriatrician to your mother 🤐
Exactly which medications is she on and what was the dose increases. I have permanent AF and at one stage they increased my dosage to try and get my heart rate down of Bisoprolol from 5mg to 7.5mg. I could not tolerate this felt really tired, blurred vision and spaced out wasn't capable of going anywhere. So went back to 5mg, my heart rate generally is on the high side but I can cope with this, have the odd blip when it goes mad and causes breathing problems as well and end up in A & E. The same thing happened when they decied to increase my dose of Ramirpil (I have heart failure as well. I became tired bit spaced out and not very with it - again went back to normal dose and okay.
I was when first diagnosed on Digoxin for about a year but that affected my memory so had to come off that, had to fight to get this changed but eventually I was put on Diltazem which has been fine. Sometimes increases doses is not the answer, the whole picture needs to be looked at.
As others have said if you can get a private appointment second opinion, I did this recently and have been recommended a pace and ablate, still thinking about. The EP did say that the medications are causing some of my problems, normally I can carry on a fairly normal life but if I did have the pace and ablate I could come off all medications except the NOAC.
Hope you get things sorted - I went to Papworth for private appointment it was £275.00 and £75 for an ECG. I later had a echo done and a 24 hour ecg monitor, for this I was put on his NHS list so no cost and will stay on his NHS list.
Cassie
I have permanent AF too, and was also on Bisoprolol initially, but like you it made me feel like a Zombie with no energy or inclination to do anything. I told my GP and was also changed to Diltazem,along with Digoxin, which has done the trick .I'm 65 and have been bodybuilding for more than 45 years, i can still train daily and as heavy as i used to, with no ill effects, infact if i didn't know different, i couldn't tell if i had AF at all. So to anyone thats on Bisoprolol, I'd definitely recommend changing to Diltazem
Please don't listen to people who "write off" older people. I spent my 82nd birthday in hospital having an ablation. An excellent Ep saw beyond my age and nearly two years later I go out to different activities every day. Have just bought myself a new computer and am enjoying myself.... dare I put it "AF free".
Yes I do have other little bits showing signs of age but my brain tells me I am still intelligent.
You know your mum and if you can find the necessary cash for a private consultation - it will be faster and longer. You can transfer after the consultation to NHS. I did all my arranging on my own but read the suggestion on here.
Hi Enjoy. Your reply to sheila re her mom is, in my opinion, spot on. Take care. irina1975
I am convinced diet has everything to do with it and I am going to do more research on this subject. What a simple fix that might be. There are all kinds of chemicals in our foods. who knows what the manufacturers have added.
Hi Sheila, Your mom's path trough afib seems similar to mine, so-not giving medical advice-I'll just share my story as quickly as I can. I'm in the US so my ability to be seen and treated was probably a shorter time but push for what you need. The previous posts are all on target though I would reinforce if you could possibly be seen by an Electrophysiologist (EP) asap do so. I would consider a private consultation even if you had to wait several weeks. I'm not that familiar with the NHS but I would push for this route if possible. OK. Here goes. Am 73/ diagnosed with afib 2011. Was cardioverted and had 3 years afib-free. Then sx sent me to ER, was back in afib, was unsuccessfully cardioverted and placed on meds. All this was done under the care of my Electrophysiologist. Remained in afib, various meds tried-felt awful, had side effects, meds changed frequently. Soon I was diagnosed with permanent a-fib. Had stress test/Holter monitor/echos etc-the usual workup, All through this 'trial and error' time with various meds was about a year +. I limped along on meds feeling tired, depressed, and generally unwell throughout. I complained re never feeling well and sooo tired. Finally, in 2016 my Electrophysiologist suggested an AV node ablation with a Pacemaker insertion. I am a retired nurse and really wanted off meds if possible as no combination ever seemed to help. Also, a diagnosis of tachycardia-bradycardia syndrome was added (which basically meant my heart rate was all over the place" fast/slow/fast/slow.) I had the pacemaker insertion and av ablation in Nov 2016 and almost immediately afterward felt much better. And have continued to feel fine. I now take no cardiac meds and wish I had done it sooner. This may not be the solution for you but only an Electrophysiologist can diagnose and help you decide what is best for you. It's not a dire emergency and if you have to wait several weeks to be seen take that option. Just my opinion, but if it were me I wouldn't be prepared to wait months to get this resolved. That's a long time to feel bad and be so tired. Being so tired can wear me down quickly. I was happy to find my resolution. Try to be seen asap so you can begin to feel better. I will repeat because for me I wanted to skip over my PCP/GP and regular cardiologist. I knew seeing the EP would cut to the chase and I could get on with appropriate treatment. Hope I have helped. Take care. irina1975 (Atlanta Georgia US)
Hi Sheila. Rereading the posts had a thought I wanted to share. Just my opinion but I believe this is a cardiac problem for a specialist-the Electrophysiologist, not a geriatrician. Just my opinion. Take care. irina1975
Thank you all so much for your invaluable advice,I have learnt more from your posts than the doctors/hospital.Mum has really enjoyed listening to your advice,now looking to go for private consultation with an EP.Thank you and take care
I'm happy to hear about your plan. It's also heartening to hear your mom is actively taking part in her care. I believe, and have posted often, that we-as patients- are an equal partner (along with our docs) in our treatment plans and care decisions. Good luck and take care. irina1975
Just a quick update, Mum underwent a myocardial profusion stress test and unstressed test last week,she felt dreadful after the stress test! No confirmed cardiology appointment,approx mid April. Her dosage of drugs is very high, warfarin 4.5,Bisoprolol 10 mg, candesartan 16 mg, Digoxin 125 micrograms. She has had no discussion with a specialist/ GP re this and still has episodes when her heart is unsettled, particularly at night/ early morning, also an upset stomach. She is very downbeat as has no energy and would like any suggestions.
The dose of Bisoprolol is quite high - what dose did she start off on, normally it is 2.5 to 5 to 7.5. to 10. I would be in zombie land on that dose - but we are all different some people are fine on Bisoprolol. As I said in my previous post if it has suddenly gone up or this is her original dose have it looked into.
Cassie
She was on 2.5, straight up to 10, need to speak to a GP as really affecting her, dizzy,tired,.Need some advice asap! Thank you for the response
Hi sheilab - I have no medical training but 2.5 to 10 does sound rather drastic. I bumped into a lady I know from walking my dog some months back, she had not been out for ages because she had been feeling unwell, very tired and listless, it was a nice day so she thought she would take a little walk. We chatted and it transpired that she had AF and her GP had upped he dose from 2.5 to 7.5. She did not complain to GP because she just thought it was the AF causing the problem and did not like to make a fuss. I told her she must go back to he GP (same practice as me) and recommended her to my GP there. She did this and has been put back on 2.5 and diltiazem. She is now much better and out walking again.
Hope you get some help soon.
Cassie
You have been such a help, I'm going into battle tomorrow and fingers crossed will get a doctor's appointment.Thank you so so much, will keep you posted
92 years old with AF
Af or something else?
Does AF always become permanent?
Permanent AF Again
