Daughter of Mom with recent AF diagno... - Atrial Fibrillati...

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Daughter of Mom with recent AF diagnosis/looking for her "new normal" life. Thanks in advance!

sharileigh profile image
7 Replies

Hello AF community,

My 82 year old mom has recently been diagnosed with AF. We live in Texas. I'm not sure how I wound up on this site but I'm grateful to be here! Everyone is so supportive. My mom has spent the last month in and out of hospitals. She is told that she's probably had AF for years but has been disregarding her symptoms. She is on lots of medications in hopes of stabilizing her numbers. She was admitted for the first time at 158. She is on a blood thinner/coagulant as it sounds like all of you are too. Here is my question. Is it typical to have a great week and then have your numbers vary wildly? We are all so confused as to what she should expect her life to look like right now. She has been dealing with anxiety and depression which makes everything worse. I loaded a breathing app on her phone to help calm her during the night when she feels her heart fluttering. I hear many of you talk about ablation. That procedure hasn't been mentioned to her. Thank you so much.

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sharileigh
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etheral profile image
etheral

Is she taking any drugs to keep her in Nomal Sinus Rythym? Tikosyn (dofetilide) has worked well for me (66 to male) and I don't believe has any age restrictions. I"ve been afib free in the 9 most I've been taking it. I was hospitalized in CHF due to the afib.

Yeah I'd say I have days I feel really tired which in the past has been an indicator of being a bit unstable the day after, so I've learnt to rest as much as possible. It tends to be day by day, not week by week. But if I have a full blown episode breaking through the mediation, I feel lousy for at least a week.

Hi there sharileigh,

My view of this condition ( that of a patient of 8 plus years of experience and not as a medical person or a scientific person) is that AF is all things to all people and it is therefore pure mongrel !

The patient, irrespective of age, can either let it make life a misery, or live a life on meds, have invasive surgery or go hunting for a trigger, a reason if you like as to why it happens.

For me I took the medication as required (and still do) then I discovered that my AF would kick in after I'd eaten. I consulted a Nutritionist and we agreed my diet could be a problem. I treated my food intake and eventually managed to tame the beast. EVEN SO, I have had one AF in February 2018 and that came from when I was asleep and lying on my left side. Nothing to do with food at all. I might add that the event in February was the first in almost 3 years.

Today, as we speak, I have been nearly 3 years, 3 months and only had this 1 event. I was 65 when I was first diagnosed and am 74 in a few months.

Many people have different triggers, some food, some drink, some exercise others lying on their left side - it can be a fools errand looking for triggers but like me you might get lucky. In some people there can be a genetic influence too.

Increasingly, AF is hitting people in their 30's and 40's so it can no longer be regarded as 'an old persons condition'. I might add - to illustrate what a weird thing this AF is, my daughter, in her early thirties was diagnosed with AF - each event occurred during her two pregnancies. Once she stopped breeding the AF stopped. She now indulges herself in Thai Kick Boxing - this is just to make you aware how weird a condition this AF beast is. Mind you, what she is gonna be like in her 60's and 70's is quite another matter :-)

At least your mother is on an anticoagulant - I am too - mine is Coumadin (Warfarin here in Britain).

I wonder if your mother has had an Eckocardiogram - a method which looks at the structure of the heart as distinct from an electrocardiogram which looks at the electrical activity. If you are uncomfortable with the way she is being treated at the moment why not see an EP - an Electrophysiologist, a heart specialist who deals with the electrical activity of the heart.

Being weary and tired is part of the condition I'm afraid - partly as a result of the medication and partly because the heart is no longer working efficiently.

Hope this is of some use - may the force be with you.

John

Clearly a difficult situation for you to be in sharileigh, watching your mum experiencing these problems and feeling so helpless. As you may know, AF is a very complex condition and it effects folk in so many different ways. There’s three types of AF. Paroxysmal AF is the type that comes and goes, often without warning. Persistent AF that is there 24/7 but can respond to treatment and Permanent AF which, as the name suggests, is there all the time but can be moderated with medication. For many patients, the condition varies enormously as you will have seen from many of the posts here.

The best thing you can do first, is to read all the information about AF which you can find on the AF Association webpage. Anticoagulation is extremely important so it’s good that that is covered. I know you will not want to hear this, but with your Mum being 82, there may be limits to the kind of treatments available to her, so much depends on her overall health and general condition. If I were you, I would arrange for her to see an Electrophysiologist (EP) who is a Cardiologist specialising in Arrhythmias as they are best placed to determine the best treatment plan suitable for your Mum and that may well include an ablation if appropriate.

I hope this helps a bit, your Mum is very fortunate to have you looking out for her.....best wishes and please let us know how you get on.

CDreamer profile image
CDreamer

Hi Sharioeigh - really good answers above especially from Flapjack. As long as your mum is anticoagulated then all other treatments are for quality of life. It may be an idea to ensure she has had all the tests such as testing for thyroid, any nutritional deficiencies, diebetes, sleep issues, other medications including OTC meds and echocardiogram to check the heart structure and ensure AF is not caused by vascular problems or altered structure. Once those are all in then you will have a much better idea about the suitability of treatment options. Please be aware that many of the meds, especially beta blockers, can cause unwanted symptoms including breathlessness and tiredness which are also symptoms of AF - so often really difficult to know if some meds really do improve QOL.

Many people live very adequately with persistent or permanent AF, but often are less symptomatic. Yes they will not be able to do what they used to or for as long as they used to.

The name of the game is adapting to new possibilities, keeping calm and anxiety under control and knowing that AF on it’s own can make you feel really rubbish but is not usually considered an emergency, more a chronic very unpredictable condition.

Both my husband and I have AF, Hubbie is 85 but has a pacemaker for bradycardia so it far less symptomatic than I am. The only treatment option for me now is insertion of a pacemaker with an ablation of the Sinus Node. This doesn’t stop the AF or the sensations of palpitations but there is a good chance of reducing the symptoms and fatigue and therefore improving my QOL.

Read up as much as you can about options - loads of info on the AFA website - so that you can then question your Mum’s doctors and ensure you see a specialist cardiologist called an EP - Electrophysiologist as many cardiologists are not always up to speed with latest thinking.

Ask your Mum about what she would want to happen and continue to do what you are doing - supporting, researching, informing, advocating and biggest of all - helping her cope with the anxiety. Gentle, slow Breathing exercises will also help.

Many of us use daily Mindfulness which can slow HR and eases anxiety - I use an app called Calm which my husband also uses and finds it very helpful.

Best wishes

doodle68 profile image
doodle68

Hello sharileigh and welcome :-) I am a bit like your Mom in that I have had P-AF (the type that comes and goes) for many years not knowing what it was and doing nothing about it until it decided to make its presence know more regularly and with force giving me lots of those 'wild numbers' .

For now I seem to have things under control most of the time with the help of medication to slow my heart rate. I have also changed what and how I eat with small meals of healthy foods, no processed food or alcohol, regular gentle exercise and getting plenty of sleep.

It is important to learn to cope with anxiety too by learning relaxation techniques. When we get anxious we release hormones which are not helpful to people with AF so 'stay calm' is a good maxim to have.

You mention ablation, I have decided it is not for me at this time for a number of reasons although I appreciate it is the right thing for some people.

Once your mom gets the right treatment she can expect her life to go on much as before but with the addition of some medication and a few modifications to lifestyle can help the heart to cope.

rosyG profile image
rosyG

Small point to add to excellent answers given- make sure your mum has enough potassium in her diet ( not supplements and not if she has any kidney disease) as this can be a factor in AF

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