AF Association

AF, heart failure and Digoxin

Hi, I started with AF in my mid thirties, I am now 60, and in 2013 was diagnosed with heart failure through mild left ventricular impairment due to right ventricular pacing (I am on my second pacemaker) and 2 leaking Valves. After the HF diagnosis I was put on Bisoprolol and ramipril, and kept on Digoxin plus warfarin, which I have taken for all of the time I have had AF, in fact it was the first drug I was put on. However, I now read that Digoxin has a higher mortality rate for people who take it than those who don't. I also read on the internet that HF typically ends your life after 5 years from diagnosis, though I don't feel any worse than I did in 2013. So as you can imagine, I am now feeling a bit worried as to where I will go from here. Does anyone else recognise my story and had the same, if so how are you and how do you cope. I have always had the attitude to just get on with life, but suddenly it all seems to be doom and gloom, anyone got anything positive they can pass my way. Many thanks if you have, at moment I feel so alone.

41 Replies
oldestnewest

Stop reading things on the internet., You should know by now it is bad for your health.

Heat failure merely means that your heart is no longer fully capable of responding to all the body's needs. It does not mean it is about to give up the ghost and with proper treatment people can live many years like you. Enjoy life and stop worrying.

8 likes
Reply

Thanks BobD, I appreciate your reply and yes the internet only gives the doom and gloom side, thats why I am hoping someone on here can give me some positive real examples :)

Reply

jenmary

Welcome to AFA forum. I can see you have posted 4 times in half an hour here in different places so I'm guessing you must be very worried. Maybe it would be better to keep the conversation going in this thread that you have started rather than the 3 replies in 3 old threads.

The main question you seem to be asking is whether to stay on Digoxin which you have taken for many years. Could you post a link to the paper about Digoxin that is concerning you?

Obviously we can't advise about your treatment but the more we know about your situation, what your symptoms are, what tablets you take and any tests or procedures the more we can share our experiences that might be relevant to you and your particular situation.

3 likes
Reply

Apologies, I have only just joined the forum and am trying tofind my way around it and how to use it. The medications I take are in my post above and I first read about the Digoxin study on the British Heart Foundation site, which then led me to many other sites and reports on studies done. I work, my main symptom is fatique and some breathlesness on exertion, over 25 years I have had many ECGs Echocardiograms, 7 cardioversions, one cardiac arrest due to Flecainide slowing my heart rate to the point of stopping it (that is why they inserted the pacemaker) , but once I went from paroxysmal AF to permanent AF a better medication reigmen was put in place which was altered when I deveoped the HF, however, I now understand that Digoxin is no longer considered to be a good drug of first choice and there have been development of better medication regimens, Digoxin is only recommended for late stage HF sedentary patients, but as stated I have taken it for 25 years on a high dose of 375 mcg, but now wonder if I could get a better quality of life by stop taking it, or would it be detremental to the outcome of the HF. Many thanks for any opinions you could give me.

Reply

jenmary I have sent you a private message.

One thing I would like the medical profession to do is to stop using the term 'heart failure' as it sounds so much more worrying than it very often is.

9 likes
Reply

Rellim2

I take your point, the old terms pulmonary congestion for left heart failure, cor pulmonale for right heart failure and dropsy for congestive heart failure, seem less harsh.

How about cacospysy back in for irregular pulse, where did that come from?

1 like
Reply

Indeed they do sound less harsh. caco is Greek for bad is it not, as in cacophony. Spysy has me beaten.

Heart failure sounds much like engine failure and not what you want to hear.

I think I could manage to have dropsy. It sounds OK. In fact I was a little dropsy in front of the TV earlier.

ETA I have already apologised for flippancy jenmary in my PM and now apologise again.

1 like
Reply

I'm inclined to agree with you. Perhaps another term like "heart impairment"or "heart defect" sounds less scary ?

1 like
Reply

Much better.

Reply

Thank you for sharing you medical history. Whilst getting the highlights I had stopped reading the posts in great detail following an abysmal 2 years trying to 'get put right' but by chance I delved into your story today and yours is the only post which has mirrored what happened to me as far as Flecainide is concerned. I was feeling colder and colder (wearing a coat and mittens indoors), could hardly walk anywhere and despite complaining to my GP and Cardiologist no one would take any notice of me until my heart too seemed to stop.

To date no one has acknowledged the possible link between the near fatal 'event' and Flecainide. The consequence of this is that I then suffered something what seemed like PTSD, was so stressed I was taking my BP and Heart Rate every hour and was convinced I was going to have a stroke or had POTS as my balance went and I couldn't eat. Your story has thrown light on why this might have occurred and am sorry that you experienced the same thing.

I now live every day as it comes, grateful to wake up and have stopped taking any observations.

You do have the right to get a second opinion on this, but if that is going to take too long and is within your means I would ask for a copy of your notes and go private to reassure you about your ongoing treatment and medication as sadly GPs are not expert in this field.

Do let us know how you get on. With best wishes.

1 like
Reply

jenmary

I believe this is the paper referenced by the BHF article on Digoxin in 2015.

academic.oup.com/eurheartj/...

And this is the BHF article below

bhf.org.uk/news-from-the-bh...

I hope these are the ones you have in mind. The conclusion seems to be that further studies on the use of Digoxin are necessary. In the meantime, and this was in 2015, patients are advised to talk to their doctors.

Again we are not doctors and can not advise about treatment. My advice would be to print off both papers, show them to your GP and request referral back to your cardiologist, if you have not seen them and discussed this recently. It may be that your GP has red flags about Digoxin in the protocol for heart failure already, but also guidance about specific situations where it's use is still recommended.

Regular checks on serum Digoxin levels with renal and hepatic function tests seem appropriate, particularly with higher doses of Digoxin. Urea, creatinine and potassium levels are mentioned as being as being of importance. Nausea is apparently an early sign of toxicity. ECG may also be helpful.

The message seems to be that regular monitoring of Digoxin is considered essential. Sorry I can't give you any advice specific to your situation but there will be others here who take Digoxin who will have more up to date information and advice based on experience.

3 likes
Reply

Thanks four your help, much appreciated

Reply

Hi jenmary, the person to query this with is your Cardiologist, but I should stick with the BHF website if you are going on the internet, and read the real life stories of people living with HF which are very encouraging. If you are not happy with your cardiologist's explanation of why this is the right drug regime for you, you could ask for a second opinion. I hope your positive attitude returns soon because that is better for your health than any medication!

2 likes
Reply

thanks Buffafly, I hope it returns too

1 like
Reply

Hi Jenmary - I have permanent AF and HF and I am 71. Admitted to hospital in Jan 2014 with severe fluid retention and breathing difficulties, had loads of tests and AF also found was in hospital for 12 days. Have been on meds since then for both. I was on Digoxin for about 1 year but it did not agree with me, affected my memory, it is a side effect for some people so stopped taking it, it was replaced with Diltiazem. I am also on Bisoprolol and Ramipril and Rivaroxaban.

I think my HF is fairly well controlled, I have a little fluid retention at times (take flurosemide when this happens) my AF is not so well controlled and recently had a private consultation with an EP at Papworth. His recommendation is a pace and ablate, I am awaiting further test results before making a decision. He does not seemed overly concerned with my HF and if I did have a pace and ablate (the pacemaker would take over my heart rate which would then be stable and this would help my HF. I would be able to come off all the heart drugs except the Rivaroxaban. Not saying this is an option for you just what is happening with me.

Do you have a Heart Failure nurse/practitioner - I was allocated one when I left hospital in 2014 and she has been a great help - she is very well versed in AF as well - if you donn't have one see if one is available in your area. I see her every 6 months and is always there for a chat on the phone with any concerns.

The information you found that us HF peeps have only five years - mine must be up soon as it went undiagnosed for more than a year, thats me on the five year mark lol!!!

I have know of quite a few people with heart failure and many have been going for many many years.

Let me know if there is anything I can help with.

Cassie

6 likes
Reply

Hi Jenmary

I am sorry you feel so anxious. I have congenital heart defects, had my first operation when I was eight and then another major when I was 12. I am now 62. I can’t believe it! 14 years ago I was diagnosed with another heart issue and had aggressive drug therapy. Got back to “normal “ but 2 years ago I got AF while I was travel overseas and went into hear failure. Hospitalized and bought home in very poor condition. I now have a pacemaker, take bisoprolol as well as several other drugs. Can’t take warfarin so i’m on another blood thinner. Was on digoxin but even when injected or through IV it didn’t do anything for me.

I am now back at work and feel ok. I too have read a lot but when articles talk about morbidity and mortality rates, they are just that. What counts is how you are feeling, recovering and carrying on with your life. It can all get scary, but don’t allow this fear to ruin your zest for life. You are in the percentage that is surviving and doing well but the sounds of it. You’re in the good numbers. Just take care of yourself and be kind to yourself.

Take care

5 likes
Reply

Dr Internet is not a reliable source of information. Speak to your cardiologist and get the full low-down on your HF and the safety of Digoxin. Re Digoxin; this scare story has been going the rounds for a long time. Digoxin has been around for many years and is still being used. If there was a problem with the drug it would have been withdrawn. Check the facts out with your doctor and pharmacist. If they say there is something to worry about please let us know. Annel

Reply

Like most people here, I say be careful of what you read on the internet. Look for quality sites by all means, such as nice guidelines or nhs sites. We are not experts, not doctors, so it’s hard for us to filter good information from bad information, so it’s best to discuss with your consultant. I paid £140 for a private appointment with my cardiologist. It was well worth it, as I got a full hour to ask all my questions and came out feeling reassured.

2 likes
Reply

Leaving aside the digoxin issue, I think I would be more interested in the leaky valves and what is being planned to rectify the leaks. Having had valve repairs carried out, I got a distinct feeling that that at one stage I was being used as a bargaining chip in a funding battle between medics and politicians, not helped by the suspicion that there is also a tendency among the medics to leave everything until as late as possible.

The NHS has limited resources and seems to change the way it prioritises treatment of patients on a fairly regular basis so I suggest you have a chat with your cardiologist about what happens next. I always take my wife with me when I go so we can evaluate the consultants proposals and form a basis of action for the next steps to be taken.

Reply

Thanks Ianc2, that is my next plan of attack, to see cardiologist, but I want to get as much information as I can before I go. I work in the NHS and I know a lot of it is funding related, and Digoxin is a cheap drug to use, as for the heart valves, that will be my next question.

Reply

I remember reading that doctors only quote life expectancy figures for up to a five year period because after five years they don't have a clue....

2 likes
Reply

Thanks Meeko, I love your reply It has made me laugh and I think what you say may very well be true

1 like
Reply

Laughter is good for you! Xxx

Reply

Studies only run for five years usually. That is why they only quote up to five years

Reply

Hi Meeko. I don't believe anyone has a clue. I doctor I knew years ago said he had never delivered a baby who came into this world with an expiration date stamped on his/her tiny butt. LOL but true. BTW I believe in humor too. Plus life expectancy charts are just statistics. Over my 40 years as I nurse I've seen many people beat the odds their doctor quoted to them. Many even outlived the doctor!!!! Yeah. irina1975

Reply

Digoxin would only be indicated got rate control if other measures fail.Blaming your heart failure on your pacemaker makes no sense. It sounds like you need a complete reevaluation by a cardiologist and EP. Best of luck.

Reply

I was diagnosed with super ventricular tachycardia 10 yrs ago had the ablation lasted for 5 yrs or so and for me was doom and gloom went through it before 35 yrs ago with cancer ,I'm still here at 74. I too get fluid retention and breathlessness , i just have to do things slower and cannot do the heavy jobs that i used to but that also comes with age any way . I have been through the panic and distress that health issues present dont let it take over and put you off enjoying life, emotions also affect the heart . I still go on overseas holidays ,have a social life worrying doesnt change a thing who knows what tomorrow brings

3 likes
Reply

I was diagnosed with HF last August after having endocarditis in May. In October I experienced a very severe breathing attack and was rushed to hospital. Due to bed shortage I ended up in the Stroke Ward under the care of a geriatrician who was absolutely brilliant. He introduced several new drugs, all of them on small doses including digoxin to reduce my heart rate which had been between 110-130.

It successfully did this and since then I have been relatively fit. The o e downside is that apparently the digoxin changed my paroxysmal AF to persistent AF but I refuse to let this worry me. I rely on my drugs and the warfarin to keep me going.

Go and see your GP and/cardiologist if you are worried. That's what they're there for but in the meantime try not to worry. Fill your mind and your days with things you enjoy. We'll all die eventually but hopefully not for some time yet. I'm 76 this year and intend to see another 10 years in spite of the HF.

Good luck

1 like
Reply

Good for you and I hope you get your 10 years too

Reply

Hi Annel, thanks for your reply. In our country Digoxin is still used under the NICE guildlines, however after speaking to my GP he agrees that for AF they would these days only prescribe it for elderly people with a sedentary life style as it is not good at supporting the heart during periods of exercise. I was first prescribed it age 35 and have been taking it for the past 25 years, and now wonder if there are better drugs out there that could give me a better quality of life and a better chance of prolonging it. Though I have been on the intenet, it has not been my only source of information. My next stop will be the cardiologist. I have checked with the pharmacist, but they too are guided by the NICE guidelines.

Reply

Don't get all nervous about the term "heart failure". Doctors use this term indiscriminately scaring everyone. It's a misnomer. Failure means to stop working as in "power failure" or engine failure". Since you are writing in this post, I assume you are still among the living and will continue to be if you take proper care. The most important thing to be aware of with AF is heart rate. It's the rapid heart rate that does damage to the heart. Digoxin does keep heart rate low but there may be better alternatives. I take Carvedilol (a beta blocker) and it has kept my heart rate in the normal range. I also take 200mg to 400mg of CoQ10 which is a great heart supplement and good for heart rate. Don't get discouraged.

2 likes
Reply

Hi, I really appreciated your wise comments in response to Jen’s concerns. I noticed that you’re taking a beta blocker plus CoQ10. I am interested in taking this supplement too, but my cardiologist is a little nervous as I currently take Warfarin.

I just wanted to know if you’re on a blood thinner? If so, what is it? I am researching Vit E therapy as an alternative but haven’t yet managed to find a doctor who is comfortable with this an alternative to Warfarin. Thanks in advance. Jules

Reply

I was in permanent afib and took the beta blocker and warfarin with 400 mg of CoQ10 for four years and never had a problem. I'm not on a blood thinner now but do take a small dose of propafenone to keep my afib at bay since two ablations and several cardioversions failed to do so. I still take 400 mg of CoQ10 because it strengthens the heart muscle and helps it to pump more efficiently. My cardio doctor and EP know I take and have no objections.

Reply

thnks likebudd I will mention uour combination when I next visit my GP, it is information like yours that is both useful and interesting, I too wonder if there are better alternatives, many thank

Reply

Hi Jenmary

Reading your list of prescribed drugs reminds me of my aunts, identical in fact and she too suffered heart failure. She was diagnosed I can’t remember how many years ago but suffice it to say, it was a very long time ago. She passed last year at age 91 due to pneumonia. I think you can continue to look forward to a fruitful and happy life for a good number of years to come if my aunt is anything to go by. Her tip by the way was sleep, don’t be afraid to have a nap when your body feels like it at least that’s what she used to believe.

Best wishes

Doddsey-uk

2 likes
Reply

Thanks Doddsey-UK you have made me feel more positive, hearing of an example of someone else is more encouraging than just being told not to worry, if I could do that, I would, and would not be using this forum, many thanks

1 like
Reply

Hi, have had PAF for 15 Years. Am now only taking a small dose of Beta Blockers to manage fast heart rate after seeing Australia’s top specialist in AF (I have seen many specialists regarding my heart defect, and was so grateful for this appointment). His view is that Digoxin is ‘less than effective’ and not a good drug to remain on. Like you, I reacted nervously when told I had heart disease due to an ASD and spent a decade worrying and reading about my issue on the internet! I now regret that and my approach is to continue to be informed but to live a healthy life without stressing about my heart. I believe it’s stress that is the big danger. Talk to your dr about an alternative to Digoxin...I think it’s a good move. All the best. Jules

Reply

Thanks JulesAF, I know the internet is full of scary stories, but there can be useful information on there too, its sorting the good information out from the rubbish and being able to understand that information correctly that matters, you telling me what your specilaist has said about Digoxin has confirmed what I have read on some of the sites I have visited, so thanks for telling me that, I have lived with this for many many years and for most part have led a relatively normal life, and hope to be able to continueto do so by finding better treatment, unfortunately my doctors seem to have stuck me on a medication regimen for last 10 years, and I now feel forgotton about, thats why I am seeking to find other people's examples and opinions from this forum, so many thanks for your helpful example re Digoxin, kind regards jenmary

Reply

Hi Jenmary, I agree with Bob's explanation of heart failute. Simple, accurate, and to the point. Although the way information is often presented about this illness (heart failure)-scary, filled-with-doom, etc. it isn't this way for everyone. Many of us on this forum have lived for many years with our various heart probs, incl afib and heart failure. Yet as you read posts you will see that many of us have successful treatment plans in place that not only keep us alive, but comfortable, feeling well, and able at times to put our illness on the 'back burner', not obsessing over our sx every day. I want to add my thoughts about the internet. Some of us don't do well looking for info other than what we receive from our healthcare providers; others-like me-like to research and find out everything I like to know about what's going on with my body. The key, to me, is to decide which group serves each of us belongs to; are we frightened by too much info or does it help us be less anxious? Whatever the answer, a caveat I try to go by since I learned to read as a child re info is always use discernment and evaluate what you read/listen to/etc. Just because someone provides info on a particular subject doesn't mean it's valid and accurate. Sometimes we have to do deeper research because their info only skimmed the surface and didn't provide enough facts to help us learn and make good decisions. So I would say figure out what works for you. For me personally, L am an 'information junkie' and like to learn everything I can about a subject that interests me. But I never take anything as gospel without looking at credentials, thinking about the author's agenda, and doing further research to find out why information is valid or not. One more thing in this epistle: When I look for an answer on the internet I ALWAYS find articles,abstracts,opinions, etc to support both sides of a question. So which one is right? We have to be watchful re where and why the info gets and supports its views, and be especially cynical about who is funding the research. Often I bring articles to my docs for their take on things. But be aware that healthcare providers have their biases also. It is up to us to do complete research and not just believe any written word. Take care. irina1975

Reply

Hi irina1975, I totally agree, and like you I need to research what is wrong with me, it is not enough for me to be told you have this, take the meds and stop worrying, I need to understand what is wrong with me, why, and why the treatment plan I have is the best one for me, if I can understand, I find I am better able to cope. I am aware that trials are often biased by who is providing the funding etc. etc. as are health care providers who have budgetery restrictions, that is why I have joined the forum, to get information 'straight from the horses mouth' so to speak, from the people, who have the condition and what works for them, and why, but I am also aware that what works for them may not for me, hence the need to research. Over the 25 years I have had this condition, many changes have taken place, with new drugs coming on the market and new procedures happening, when I was first diagnosed, ablation was reatively new, now it seems a fairly common procedure, so I will continue with my quest and hopefully find some information that will be useful to me. Kind regards Jenmary.

1 like
Reply

Good for you. Knowledge is power. irina1975

Reply

You may also like...