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heart failure after av node ablation

cali111 profile image
20 Replies

In November last year I had a pacemaker fitted and after 5 weeks had a AV node ablation. I am in persistent AF but intolerant of drugs. Last week I was diagnosed with left sided heart failure. I wrote to my EP at Stoke as I was concerned he is going to see me in clinic at the end of February to discuss options. My pace and ablate was supposed to make my life better - it has not due to this heart failure. Has anyone out there had this reaction to an ablation as heart failure was not mentioned previously. I now take 20mg of Furosemide to cope with the breathlessness but have great difficulty with drugs. I do not know if the ablation caused the heart failure or it was already there and was not picked up. I suspect the latter. I am 74 years old.

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CDreamer profile image
CDreamer

My understanding is that long term, persistent or permanent AF is a cause of heart failure, however, a 2 lead pacemaker if you have had a AV node ablation will also lead to de synchronization of the ventricles which will lead to a 40% chance of heart failure. It’s not the AV node ablation itself.

I was strongly advised to have a bi-ventricular PM prior to AV node ablation to prevent the problem you now face. I wonder if that may be a possibility now for you? The good news is that my understanding is with this procedure HF could be reversible? Maybe something to discuss with your cardiologist?

Best wishes and let us know how you get on.

cali111 profile image
cali111 in reply toCDreamer

Thank you it is what I suspected re the heart failure. My EP did say that if it failed with the 2 lead PM he could put another one which would help. I think it was false economy in the first place, but what do I know, maybe it was borderline and he was hoping it would resolve as I understand that a three lead CRT-P is more risky to implant.

CDreamer profile image
CDreamer in reply tocali111

Well it’s another lead which goes on to the outside of the heart. Mine has unfortunately come free so I need to go back in for a replant which I’m not looking forward to. But I have to say my AF is not nearly as symptomatic since the PM implant anyway so I’m not rushing into having a AV node implant.

Best wishes

cali111 profile image
cali111 in reply toCDreamer

I think he can help me further. I do not regret my AV node ablation as my heart rate is a steady 70bpm and goes up on exertion to 90-99 and I don't feel my AF . I will post again later on after I see him. When I had my pacemaker fitted it was really good as I didn`t think I would make Christmas .

Sorry to hear this cali111 as you had so much pinned your hopes on this working.

I'm sure you've found CDs reply very helpful.

I actually went into heart failure after being left in Fast AF too long whilst on the list for a cardio version. Fortunately it was resolved with diuretics and no lasting damage but a very traumatic event for me and my family.

Hope everything gets resolved very soon

Sandra

heartbeat4 profile image
heartbeat4 in reply to

Hi Sandra can I ask how long you were in AF before it caused the heart failure.

in reply toheartbeat4

Heartbeat...i was 3 weeks. Probably not helped as they had previously stopped a diuretic bendrofluazide as unnecessary. However cardiologist said this was a direct result of my AF.

Hi cali111. Your history is so similar to mine. I am also 74, diagnosed with AF in 2011, was converted and remained AF-free until 2013. When it returned I had many problems trying to find the correct meds with many sjde effects. And I'm also in persistent A Fib.

Over the next 2 years I had several hospital admissions for congestive heart failure. I would be admitted for a couple of days, given IV Lasix, got better and sent home until the next time.

During this time I was told my heart was slightly enlarged and took Lasix by mouth daily. I tried to watch my sodium intake and thought I did a very good job but still would get fluid overloaded from time to time.

Finally in November 2016 my Electrophysiologist suggested a pacemaker and an AV node ablation for a diagnosis of Sick Sinus Syndrome (tachy-brady syndrome).

As I am in the US both procedures were done at the same time. Everything went well and continues to do so. I still have the enlarged heart and a diagnosis of heart failure. The diagnosis does not necessarily mean that you have to have symptoms (breathlessness, tiredness, etc) unless you have excess fluid that causes breathing problems.

After the surgery I needed no meds except to continue on my daily Lasix (40mg with permission to take an extra 1/2 pill (20mg) later in the day if I started feeling short of breath). I usually needed to take the extra 1/2 pill once, maybe twice a week, continuing to do well and stay out of the hospital.

A few months after this I was hospitalized overnight to have my gallbladder removed. At that time a dietition came to my room to help me understand a post-gallbladder diet. I said to her that I didn't need the consult as I am a retired nurse and well-understood what I should and shouldn't eat. Fortunately she stayed.

Before leaving my room she asked if I had any other questions and out of the blue I mentioned my problems with heart failure. I thought I was following a good low sodium diet and had all the knowledge I needed.

She was a wealth of information. She explained that most of the time we are given numbers to guide us about our sodium intake but said these are not 'one size fits all'. Some of us do much better on much less sodium. Here in the US our guidelines are around 1000mg-2000mg/day. I learned this was probably too much for me.

I also learned where a lot of hidden salt can be found in foods we don't suspect. I decided to find as much info about how to accurately measure my daily salt intake. I wrote amounts down in the beginning even if it was just a small amount of sodium, and what products can act like sodium in our bodies-(MSG (monosodium glutamate, for instance). And I kept a daily record of how my breathing was. You get the picture.

It didn't take me long to find that my optimal sodium intake per day to keep me free from excess fluid and breathlessness is between 600 and 800 mg/day. At this level I breathed comfortably, only needed 1 Lasix/day and stayed out of the hospital. This is low, I know, but it has worked for me. Your limits may be higher.

Bottom line here: I saw my EP last month and he told me my EKG was the same as they have been the last 2 years. There is no further heart enlargement, and reminded me I had had no further episodes of shortness of breath or hospitalizations in over 2 years for heart failure symptoms.

I am not your doctor and you may have other issues but I would recommend you really get on top of how much sodium YOU can eat without becoming symptomatic.

In the beginning it's a pain to do the research, keep records, and learn what you can or cannot eat. I discovered that often when reading labels in the grocery store just choosing a brand of something I liked meant buying a brand that is made with less salt. And finding where sodium is. This can be tricky as I learned when even buying fresh chicken some companies inject sodium into the raw meat to give it a plumper appearance.

Sorry to be so lengthy but I believe enlarged hearts and heart failure diagnoses are present long before we get to the pacemaker/ablation stage of treatment.

Give it some thought. Living without episodes of breathlessness and not causing further deterioration to our hearts is worth it. Doctors and cardiac nurses don't really tell us all the specifics we need to know to prevent fluid overload related to heart failure and caused by the wrong foods. It is up to us to educate ourselves.

I feel well, still take nothing but my daily Lasix and feel comfortable that my AF and heart failure are well controlled.

Worth a try.

Take care. irina

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Buffafly profile image
Buffafly in reply to

Hi Irina, may I ask you some questions as I think I am getting fluid retention sometimes. Do you get other symptoms such as headache, bloating, and do you find you suddenly put on weight - up to 3 kg? I had a virus affecting my chest over Christmas and despite antibiotics and steroids am still coughing, also getting swollen ankles and tummy so I am working myself up to seeing my GP. My body seems to sort the problem out after a few days but it would be much easier to use a diuretic.

in reply to

A caveat about labels: A few years ago I picked up a jar of Indian sauce from the area of my grocery store that sells imported foods.

When I looked at the sodium content it said "1 g.". I was in a hurry and the print was so small it was hard to read. I bought it as I thought it was basically no sodium.

When I got home and looked closer I realized the sodium was measured in grams. So basically the product contained 1000mg of salt in a 2 tablespoon serving. And I certainly planned to use more than 2 tablespoons.

Just something to be aware of. I was so used to seeing milligrams I completely missed the 'g' for grams.

cali111 profile image
cali111 in reply to

Thanks for all the information. I too take furesamide 40mg each day also 2.5mg Indapamide each day together with an anticogulant . Both of the drugs leave me short on potassium but if I eat a banana each day it helps. As I am in heart failure I cannot reduce my drugs at the moment. They do help the breathlessness and they reduce the fluids of my chest,ankles and stomach. I dropped 4lb over 2 days. When I see my EP he will present me with my options, and I will have to choose. I am 100% better than last November. I too do not use salt and mostly cook from scratch without salt and am getting expert on using herbs and spices. I use juniper berries,thyme,parsley and tarragon mostly which I cook with meat & veg in my slow cooker I add lentils and mixed beans. You do have to like stew like food. A bit dull but does the job. I hope you get on it sounds like your docs are looking after you well as mine are in the UK

Hi Buffafly. Sit down and get comfortable for one of my long-winded responses. lol.

The first thing to say is you are right to talk to your GP/cardiologist about the fact that you feel you are retaining fluid. Make this a priority. There is always a reason our bodies are not handling fluid well and it is important to get to the underlying cause and rule out something serious.

That being said'whatever the reason' controlling our food intake of sodium can go a long way towards keeping us from developing symptoms like breathlessness that often put us in the hospital. Sodium has to be in balance with our potassium, magnesium and other electrolytes but the one that is usually out of balance and that we get too much of is sodium (salt) so I will talk about the excess we get from our food.

Often when we develop cardiac problems our doctors tell us to limit our sodium and give us a range (as I mentioned in my other post). But these instructions lack specifics we need to be successful.

Many people, especially women, tend to hold fluid at times even when we're basically healthy. There is a hormonal component. (Remember when we were young and would feel bloated when we had our periods? That was fluid retention- albeit minor.) Even when I was young and healthy and at an ideal weight I still gained 1-2 pounds every month. Into my 30's my doctor allowed me a mild diuretic each month .This fluid didn't cause breathing problems; it was more wanting to fit in my clothes and not look 'fat'.

But when you feel short of breath and can't get rid of the excess fluid easily it becomes a problem. Your doctor will know know what to do when you mention the problem and most likely will start you on a diuretic. You can help the situation by watching your salt intake.

You mentioned you gained up to 3 kg. (at 2.2 pounds/kg this is almost 7 pounds.) This is too much 'water weight' to gain within a few days and please mention these numbers to your doc. When we suddenly gain 3 or more pounds within a few days this is usually considered water weight as even if we binged on lots of good food our bodies don't process regular weight gain this quickly.

Cardiologists usually give you a guideline about how much water weight you can gain before they want to talk to you or advise you to go to the ER (A&E?) as you might be going into heart failure.

Once you begin to hold fluid most doctors want you to weigh yourself every morning with the same weight clothes and before you eat or drink anything. This way you know if you are starting to hold water and you can nip it in the bud so to speak. Maybe you ate chinese food or extra salt the day before and you will know to cut back today.

I weigh myself every morning in this manner as none of us are 100% compliant-especially me- and we can stay ahead of problems.

I say 'in this manner' because as we all know weight scales we usually have at home can vary by a few pounds (kgs) and we want to get an accurate weight. What I do is keep a (not very expensive) home weight scale in an out-of -the way place so it doesn't get moved and others don't mess with it. I call this my water weight scale and everyone knows to leave it alone. Mine is in a large storage closet and the lady that sometimes cleans for me knows not to move it when she does the floors. This scale is not for me to see if I've gained regular body weight but to know every morning what my water weight is.

My doctor's office wants to hear from me if I am up 3 pounds or more (slightly over 1 kg) especially if I am having shortness of breath. Holding fluid does not have to turn into a major emergency if we catch it early.

The other thing is to learn, as I said, where the sodium is in our food-especially hidden salt-processed food, chinese foods, many restaurant foods etc.

One good thing we can do is eat less processed foods as many preservatives, additives cause our bodies to hold fluid. The big corporations don't tell you that.

Also read labels to see what the amount of sodium is in packaged foods-always remembering the amount listed on the label is 'per serving' not what's in the whole can, jar, box, etc. So if it says (like soup or tuna for instance) there is 200mg of sodium and the container says there are 3 servings of the food there is 600 mg total. Here in the states food manufacturers are sneaky and often list a ridiculously small amount of the food as one serving so the sodium number on the label won't look so bad. Marketing!!

This sounds like a lot of work but you will find yourself an expert pretty quickly.

For me, as time passed I started eating out less, buying hardly any prepackaged food, and I use no added salt when I cook. If I'm cooking for others I have a little tray on the table of 2-3 types of salt (pink Himalayan, kosher, sea salt) like condiments and let people add their own.

One more thing: You mentioned coughing. This could be residual from your virus but coughing is also a sign of fluid in your lungs. Especially if it is a dry cough. Your doctor might want an xray.

So please share all you can with your doctor. Most of us with cardiac issues, esp. Atrial Fib have the potential to have heart failure but it is fairly easy to keep it in control and not develop symptoms. No need to be scared.

The key is self-education about what we can do daily to keep the symptoms at bay.

Hope this helps.

Take care. irina

Buffafly profile image
Buffafly in reply to

Thank you very much Irina for taking the time to reply so helpfully. I have been reluctant to make a fuss before especially since I phoned a doc about my swollen ankles and he just told me to put my feet up lol I am 74 today and think I know about that 🙄 To be fair he did say give it a couple of days and then review it. I am very guilty about the sodium (brought up in a family where salty food was the norm, that's my excuse) but I shall try harder!

I've learned a lot from your reply, thank you again.

in reply toBuffafly

I understand about the salt. I don't really miss it but I miss my sister's cooking. She is the cook in the family and even wrote a cookbook several years ago. But she uses a lot of salt and loves to make comfort food dishes like mac and cheese, pot pies, casseroles, etc with Campbell's soups.

Her food is so good it's hard to eat just a little. She's in Orlando Florida so fortunately I'm not tempted very often. lol

And you're welcome. I do get lengthy with replies but I taught a lot when I was a nurse and just don't want to leave anything out.

Take care. irina

in reply toBuffafly

Happy 74th birthday, Buffafly.

We are getting better-not older and as a birthday card said that I once received and still have: "The men may prefer the young chicks but it's us old hens that really know how to lay." The picture on the front was a barnyard with little chickens scratching in the dirt.

If any are offended I apologize!

irina

C66t profile image
C66t in reply to

Brilliant love it.😄

You're very welcome. I'll add one more thing about the relationship and ratios between magnesium, potassium, and sodium.

I wouldn't worry too much about exact amounts of potassium and magnesium. The one that we should worry about is sodium because it is added in large quantities to so many foods today and it is easy to get way too much. Most of us with A Fib know about the importance of magnesium for heart health and many take supplements. I do.

Potassium is a different kettle of fish. It is very abundant in many foods (fruit, vegetables, greens, white potatoes with skin, tomatos etc) and it is rare anyone is potassium deficient.

And having too high a potassium level can be very bad cardiac-wise.

Fortunately this will not happen if you get your potassium naturally in foods-even if you eat a lot of potassium-rich foods. Your body will regulate this on its own .

The problem comes with supplementing potassium. There may be times a doctor will prescribe potassium supplements but this is rare and if we do it on our own it can be very dangerous. We should always be closely monitored if we are prescribed potassium.

In the states there is a 'low-salt' salt sold in the spice aisle of the grocery store. It is marketed to people that want to limit their salt intake. But what they don't tell you is it is salt mixed with potassium. Don't ever use a product that has added potassium-very dangerous. And don't buy potassium supplements or be taken in by a salesperson who advises you to take them because "your diuretic causes you to lose potassium".

It's true diuretics will also pull some potassium out along with sodium but only use food to supply your potassium needs.

If you watch your sodium intake you will be fine.

Fortunately the fact that fluid collects so quickly is the body's way of letting us know we have too much sodium before it becomes a big problem.

Take care. irina

irene75359 profile image
irene75359 in reply to

Irina, you really are a mine of useful information - thank you. Just checked my 'Lo Salt' and yes, two thirds potassium! However, I only ever use salt in two foods - potatoes and eggs and even then very sparingly. Everything else I use herbs and spices or lots of pepper.

in reply toirene75359

Thank you. I eat a lot of high potassium foods too bananas, kiwis are even higher than bananas. And avocados are wonderful forpotassium but not really in season now.

They are very available here-fromMexico- but expensive in winter.

in reply toirene75359

Thank you, irene. I rarely use salt but when I do I found that adding it just before eating makes it easier to use less as the flavor is stronger.

When I used to cook with it I often had to use too much salt to get the same effect. Now a little sprinkle goes a long way.

My personal favorite is coarse ground celtic sea salt. The coarse ground gives more salt flavor than fine.

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