Cross Roads: Once again I seem to be at... - Atrial Fibrillati...

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Cross Roads

Tricia239 profile image
20 Replies

Once again I seem to be at a cross roads on my AF journey. I have been on Sotalol for some while but recently I have been having fairly frequent episodes of AF which last for quite a while, sometimes days. Because of this I had a second ablation at the end of November but unfortunately, if anything, I have been worse since that and have needed 2 emergency admissions to hospital (normally I would sit it out at home but these have been particularly unpleasant). Following my most recent admission a few days ago my EP has told me that I have 3 options; another ablation, which neither he nor I are keen on, change to Amiodorone or have an AV node ablation (pace and ablate). Whilst I am tempted to go for that I have always been wary and seen it as the last resort, the fact that a few months ago I was told, by the same EP, that he didn't think I would be a good candidate for it, I think because of the symptoms I experience when in AF., I just wondered if there is anyone who has had an AV node ablation which was not successful and if so what was done to alleviate the problems after that. If anyone can offer any advice I would be really grateful. Tricia

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Tricia239
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BobD profile image
BobDVolunteer

An AV node ablation will always be succesful but that doesn't mean that you will not be aware of AF. Whilst the ventricle will be paced by the PM thus ensuring a steady heart beat which should alleviate any fatigue, the left atrium will still be able to do whatever it wants (without affecting the rest of the heart) and you may still be able to feel it. This should be explained to you.

Hylda2 profile image
Hylda2 in reply to BobD

I can’t feel it at all although have been told I am now in AF 100% of the time. Luckily rate is reducing.

Tricia239 profile image
Tricia239 in reply to Hylda2

That’s really good. I’m just worried in case I am still able to feel it and what could then be done. Pleased it has worked for you.

Tricia239 profile image
Tricia239 in reply to BobD

Thanks Bob, yes it has been explained but what I don’t know is whether the symptoms, if they are felt, can be alleviated. I guess that’s why they don’t think I would be a good candidate because when in AF I am very symptomatic. And, is that AF doing any damage?

DawnTX profile image
DawnTX in reply to Tricia239

The part that I was confused about is that I can still fill my heart, but then again with a fib I think we all become very aware of it. That being said, I found out by asking questions that my pacemaker is set in such a way that he can anticipate when we are more active just like a real heart lol we still have a real heart by the way. I knew right now I am set at 80 and when I saw my heart rate go up as high as 105 it scared the heck out of me. Ask anyone who works out with their heart rate goes up to and you’ll realize it’s normal to rise. The area not helped by. My pacemaker is my atypical flutter but flutter never really bothered me I did feel it the first week but not cents and yesterday was the most active. I have been in over a year and a half I was able to walk around our property with my dog. No breathlessness no pain nothing but feeling normal, and I was not fatigued. Normally a walk down the hallway to the bathroom would leave me breathless, and in pain. Slowly, my circulation is returning. Pins and needles or lack of filling is going away and I even discovered pink toes and nail beds again. It’s the little things sometimes that make you happy. As far as getting the pacemaker, it feels more odd than painful I think and you need to stay aware of not using your left arm very much especially reaching for anything for a short time. I only used Tylenol for pain. The AV node ablation is like any other ablation, I had forgotten what it felt like, but then realized that too was normal. I normally get an ache in my chest and a few other things nothing dreadful once you realize that too is normal. I was dead, set against a pacemaker in the beginning people like Bob made me rethink, and I am so glad I did. They are going to be resetting me to 70 for a heart rate early April and if all goes well, then put me down to 60. I can’t imagine how good those will feel but then I remember a cardioversion where I woke up to 82 for a heart rate and OMG I can’t tell you what a difference that heart rate makes. I felt like I could dance out of the hospital. I didn’t dance but I did walk. I had to come in in a wheelchair.

mav7 profile image
mav7

Do you take Sotalol regularly ? Seems like it should offer better results in control of your afib.

Also, have you had a recent echocardiogram to examine your heart's functions ?

With due respect, try to keep a positive mental approach in this challenge we all face. Best to you in managing your health.

Tricia239 profile image
Tricia239 in reply to mav7

Yes, I do take it regularly and I have had a recent echocardiogram. I do feel I am being well cared for but it is a big decision. Thanks for your good wishes.

Karendeena profile image
Karendeena in reply to Tricia239

Hi, what quantity of sotalol do you take? I am on 40mg three times daily but like you get breakthrough episodes and they are very unpleasant, mine last 30 hours but fortunately come about every 4 months. I am expecting my EP to increase this but I am not keen as my BP is usually low at an average of 100 over 65. I don't want to take amiodarone because I understand it has nasty side effects

Tricia239 profile image
Tricia239 in reply to Karendeena

Hi, I take 160mg twice daily. I’m not keen on amiodarone either, if regularly monitored all should be ok but nothing will prevent the hyper sensitivity to sunlight and trivial though it sounds I think I would find that difficult to cope with having been a sun worshipper all my life.

Karendeena profile image
Karendeena in reply to Tricia239

Me too Tricia, how does the sotalol affect you? I get nervous as I never had low BP before and I struggle with insomnia but not sure if it's the sotalol, apixaban or prednisolone I take for Polymyalgia

Ashburton51 profile image
Ashburton51

Hi Tricia, I saw that I had a message from you but when I tried to reply it had disappeared! Can you message me on my private email account?

It has now been a year since I had my pacemaker fitted and it will be a year at the end of May since having my AV node ablation. For me the pace and ablate procedure has been a miracle and now that I am fully recovered I am feeling better than I ever did since having AF diagnosed.

I had it done by a consultant in Derriford and was able to stay with my sister whilst I recovered. It is a big decision but for me it was the right one. Good luck with it.

Gloria

Tricia239 profile image
Tricia239 in reply to Ashburton51

Thank you for that. It was good that you were able to stay with your sister. I will try to email you. I’m so pleased that it’s worked so well for you. If anything I think you were more symptomatic than I am, so that’s encouraging. Tricia

Globe-J profile image
Globe-J

Hello Tricia,

Have you considered the Maze Procedure?

Nothing else worked for me, drugs did not seem a good answer. Now I have been free of the malaise for over five years.

Kind wishes

J

Tricia239 profile image
Tricia239 in reply to Globe-J

That hasn’t been mentioned to me, perhaps the extensive scarring on my heart precludes that. I’m not totally sure what it involves and so I will ask the question. Thank you.

Globe-J profile image
Globe-J in reply to Tricia239

Please, don't give up and thank you for your response.

Best wishes J (-:

Golfer60UK profile image
Golfer60UK

Good morning from south west uk, sunny but cold.

I had AF about 4 years ago after dislocating my hip, was put on Bisoprolol and a blood thinner, I felt pretty awful with very little energy. After two failed ablations I agreed to go the pace and ablate route in 2021. This was after I passed out on a golf course.

Must admit am now feeling so much better with energy levels back to pre AF levels. Now only on a blood thinner and dropped the dreaded Bisoprolol which must have helped re energy and feeling lively.

For me it has been a good choice,

Best of luck with your decision

Dave

Tricia239 profile image
Tricia239 in reply to Golfer60UK

Thanks. That is so encouraging - it would be wonderful to get my energy back.

Quilter43 profile image
Quilter43

What is pace and ablate.pacemaker plus ablation..a v node..what is av..?

ozziebob profile image
ozziebob in reply to Quilter43

Now there's a lot of questions. A simple Google search will help with most of your queries. As to reading the related experiences of others on the Forum, you can put relevant terms into the Search 🔍 option at the top of the page.

If you want help with particular concerns, then perhaps you could formulate a specific question and Post that.

Good luck.

DawnTX profile image
DawnTX

Unfortunately, I cannot give you a failure story. I don’t know if there are any to be honest with you. I never knew the pacemakers we’re not for everyone at least not the ones that have been available. That being said, only your EP would know. I was recently blessed with the fact that a new pacemaker became available late last year, and it was suited for me whereas previous ones were not. I was told it was special, but did not realize how true it was. Because of my particular heart issues I really did need different. The Azure pacemaker with HIS pace bundling was the fit for me. Previously, I would’ve continued in my heart failure and then you need a transplant. Easier said than done. From what I understand. It is the HIS part that really makes a difference. All I know is that it will be three weeks tomorrow that I have my life back. I am blessed with a Doctor Who believes in quality of life as soon as he can give it to you if he can. I have been sharing this with people in the event that even if you did not know, your doctor knows why your pacemaker might not work for you, and make sure he knows about this one. Not all doctors are created equal I know that from personal experience. There’s no cure for a fib, so what they are looking for, is relief and quality of life. I am thankful my doctor did not want to waste time with things that had not worked previously. Thanks to the people on here who supported me and showed me it was not as scary as I thought and also quite successful. I thought it out and realized I had no quality of life. What did I have to lose? I did a post earlier to share the fact that today was the best day I have had yet. We get no promises. The first thing is having faith in your doctor I think. Best of luck whatever you do. I had exhausted options for the most part and pretty much everything is like a Band-Aid sooner or later it falls off.

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