3 month check after 2nd ablation . “ not happy and rubbish Xmas present “

[mjm1971]

hi All

So I’ve been PAF since my diagnosis 18 months ago

Discovered I had AF and a flutter after one 20 second dizzy spell 18 months ago .

Didn’t really have symptoms other than tired and very minor light headed ness from time to time .

18 months on and been on Bisop and Flec along with 2 ablations and had my 3 month check after 2nd ablation .

I had a 3 day holter 3 weeks ago and to my shock they told me yesterday I was in AF and Flutter for the hole 3 days .

I said I had readings from Apple Watch that showed one sign of sinus rhythm .

They now seem to have gone down route of me being in permanent AF , told me to stop flec and up my bisop and they will review my case and get back to me on next stage .

I’m at St Barts under Dr Earley team .

I’m gutted and although symptoms are not really any worse it just seems to me that all the treatment has made me progress quicker .

And if I’m left like this surely I’m just going to get worse and worse in time , I’m only 51 so by time I’m 60 what the hell will I be like .

Im sure it’s a coincidence but can’t help think my treatment has accelerated my AF and how can they say im Permanent if they have no evidence over been in AF constantly for 7 days or more ? I thought that was a marker they used etc .

now concerned im not at right hospital or with right consultant which seems mad as they have been great in regards to how they treated me at the hospital but I want results

I’ve stopped drinking I’ve lost 1.5stone ( not that I was that overweight anyway.

what else can I do ? Gutted

thanks

Matt

[Hidden]

G'day Matt,

I don't want to add to your misery but my experience has been the reverse of yours. But then again it was when we had a much loved NHS, not the crap shoot it is now and has been since CoVid.

Back in the day ( January 2010) I experienced flu like symptoms early one morning. As the day wore on I felt worse. Took BP readings and over 5 hours my BP dropped from 136/80 ish to 76/50. Rang my GP who said come and see him, which I did. He gave me a check over and sent me to A& E immediately. They were waiting for me, parked me on bed, wired me up, then the young Dr told me she would put me on a drip and try and get my HR down ( clocked at 156 bpm). Admitted to Coronary unit for another 5 days for tests. Pronounced paroxysmal AF ( deep joy).

The speed with which I was treated should be the GOLD STANDARD and was ( without doubt) instrumental in my AF getting controlled with medication .... and much later by diet.

Ablation was discussed as a way forward but I rejected it.

Since those Halcyon days ( and what a stunning looker the young A& E Dr. was) I can pretty much count my AF events on both hands. I am now 78, hold a PCV driving licence which ensures I must pass a DVLA inspired medical annually before they will renew my PCV licence and am allowed to continue bus driving.

If it weren't for the speed of diagnosis and treatment in the beginning I am sure I'd have gone down the gurgler. Latest Echo showed a well worn heart ( consistent with age) with many issues, but none needing any immediate attention, apart from lowering my BP.

John

[mjm1971 in reply to Hidden]

hi John

Really glad your treatment sorted you out etc 👍

Thanks

Matt

[DawnTX in reply to Hidden]

so good to see your story yes that is the standard that everyone should get. Even here in the states I went through a six month period of hell although the beginning of my a fib was treated like yours. Even before they knew it was a fib for sure they had me on a blood thinner and other medication and as soon as they have the true diagnosis I got my first ablation. I hope you continue as you are it sounds like you are a success story for us thank you for sharing.

[BobD Volunteer]

Hi Matt and there are a number of things you need to understand here.

Firstly that any and all treatment for AF is only ever for quality of life.(QOL) It is not a life shortening condition provided that anticoagulation is prescribed where appropriate and rate controlled. The holy grail of NSR is not actually that important other than for QOL and if that is not bad ie the patient is asymptomatic as you seem to be then all is good.

Secondly AF is almost always a progressive condition and treatment does not accelerate this so please do not even think that by having treatment you have made things worse.

Thirdly Matt Earley is one of Prof Richard Schilling's team at Barts and one of the best in the business so you rally can't get much better.

I know it can be dissapointing when we don't get what we want but a positive attitude and mind set usually gets us through.

[DawnTX in reply to BobD]

Bob I love your Toughlove approach today in with you 100%

[Keano99]

you have two great replies there. What were your Apple Watch readings?

[mjm1971 in reply to Keano99]

hi Keano

I’ve just done an ecg on my watch which was Sinus . So why they are classing me as full AF after 3 days when everyone knows it’s 7 days or more is beyond me 🤷‍♂️

[mjm1971]

hi all

Bob I appreciate the reply but when there are plenty on here who don’t have AF anymore after treatment, I fail to see how treatment is only for quality of life when clearly for some it gets rid of it .

I also fail to see how I’ve had any success after 18 months of drugs and 2 operations totalling 11 hours when I’m now worse off than 18 months agai .

My quality of life hasnt improved at all .and I. Won’t be accepting AF begets AF when there are success stories out there .

Thanks

Matt

[Buffafly in reply to mjm1971]

What Bob is saying is that if you weren’t aware of being in AF then your QOL isn’t being affected. Some people have ablations because they are very much aware of being in AF/Flutter and feel very debilitated by it so in that case getting rid of it and the meds is an improvement. It seems as though your doctors are saying they’ve done their best to restore sinus rhythm and also they feel they’ve done enough under the circumstances. You seem to want to be in sinus rhythm on principle rather than because your arrhythmia is ruining your life. I can understand your disappointment in that case but with care you could even be fitter at 6O than other people because you have looked after your heart well. Best wishes ❤️‍🩹

[mjm1971 in reply to Buffafly]

hi Buffafly

Maybe it’s just me and I apologise to all those all suffer more than me as I don’t mean to sound ungrateful but phgchologically I suffer being in AF . My mum had a stroke while in AF so I walk around like a stroke time bomb .

I also do get tired and I do have trouble concentrating and exercising due to shortness of breath etc . But no it doesn’t affect me physically on a day to day basis as bad as others .

But psychologically it does affect me quite bad it’s 24/7 and therefore I really can’t just accept some of comments that are made and I certainly can’t accept that AF begets AF and that’s that . There are lots of people who have been kept in sinus rhythm and I won’t stop until I’ve tried every Avenue possible to achieve that

Bob is a legend on here and my comments are certainly not meant and should not be read in anyway to be detrimental to Bob as he has helped me over the last 18 months for which I am grateful but accepting staying in AF is not an option for me .

[DawnTX in reply to mjm1971]

honey I understand your fear of a fib. First question are you on a blood thinner? Was your mom? My mom died of myocardial infarction. My paternal grandmother and grandfather Both died on the very same day one in the hospital of a heart attack she had already had one he died of a stroke at home neither even knew the other had died or so they say I believe different. There has been congestive heart failure on Moms side but fyi she actually died of cancer the heart attack was caused from a clot from the cancer. She never carried an ounce of extra weight but she smoked three packs a day. My father just died at the age of 97 and was healthy and fit and full of life. I was estranged I don’t know what he died from but he lived a good and healthy life. We cannot compare but we can be careful. Each generation has come in contact with stuff that contribute to health or bad health I should say. This is one of those times where I think we have to be careful of what we do and even then there’s no guarantee. I feel the best we can do is treat it as it shows up try to avoid it if we can such as alcohol and smoking. I know there are people who say they smoked every day but we have so many different chemicals around us now even in our food. Personally I would like the medical people to concentrate on finding a cure or a better way of giving us quality of life longer when we do have a fib. Whether that means different treatments or medication they need to work on it. I don’t care what may have caused it. Yes I carried weight that’s not gonna change it’s already been done. Fix me as what I say.

Again as I mentioned to someone else you don’t know everyone’s life or how it will end up. Someone tells you here how good they are doing. We have all been there we are doing good until we are not. Some people are blessed with years of no issues. Others are like me. Ablation one 6 months. Ablation two a year and a half. Vein of Marshall and other ablations same surgery Never really seem to take although told my flutter was gone until now. I have only had afib two and a half years now. So if I tell you during my six months how great I’m feeling that doesn’t mean I’m fixed. We just appreciate the quality of life we have while we have it. A fib is not causing a fib it is the electrical system of our heart that has weaknesses. I usually say electric lines in the house how about a garden hose. You have a leak and you tape it up and it doesn’t leak anymore. A month later there’s a leak on the other end. The tape did not cause it. There’s possibly a weakness in the hose that is causing the leaks. That is how I picture a fib this is my opinion. Everything I’ve had done is holding but I keep getting new stuff in a different spot. My vein of Marshall is only a couple of years old as a procedure I had it done by the pioneer doctor and even then there are issues.

I am not trying to be mean I’m just trying to say what I wish people had told me and as I have said before I shoot from the hip. This is a frustrating and horrible thing that we have. I just still don’t know do they consider this a heart disease?

Stick here with us don’t give up because every day they are working on new things and I notice many people here are so much younger you have a really good chance of getting much better outcomes in the future. No one likes to except having some thing like this I know I certainly do not it’s easier to deny I ignored and I’m lucky I am still here I was such an idiot

[DawnTX in reply to mjm1971]

Matt there is no cure for a fib. Think of your heart like your electric lines throughout your house. If you get a short and it’s repaired that doesn’t mean you won’t get a short again in a different place. That’s our heart system with a fib. When they do an ablatement they are blocking the short to prevent it from sending bad signals to the rest of the electric system. I was immediately put on a blood thinner to prevent stroke when I had my first episode so to speak. My first ablatement I had quality of life for six months. Now I don’t know what quality of life means to you but for me it means I can walk to my car without nausea and huffing and puffing and pain. It means standing and being able to wash a sink of dishes or a load of laundry without pain. Life may never be as you knew it again or it may be because of your age. I don’t know I was 67 when it hit. You don’t know how long people will stay without a fib coming back. Oh yes there may be people that never see it again but the odds are pretty good it will be back. I am not going to bs you any more than my new EP doctor does to me. If you take an aspirin for a headache and you get another headache is it because you took an aspirin before? Think about what you said. They were trying to prevent worse from happening to you. Our hearts get exhausted do you know what a fib is? Your heart not beating right means your blood is not pumping right and it pools up. That is how you end up having a stroke because it clots in one spot. You may just feel dizzy blame it on some thing else. I know that’s what I did. I got up too fast etc. always a reason because I lived a busy life even at 67. I worked law enforcement 5 to 7 days a week FYI

call this Toughlove for me but maybe you need to read more not the medical jargon but what you are dealing with. Make sure it’s a good site like a well-known hospital. I would keep away from most doctors because many do not agree with each other still about a fib. Check out the American heart association. Arrhythmia has many forms that something else you need to know. My afib is not truly back right now. I don’t quite understand the difference but I have atypical flutter. Previously I had a fib and I had flutter this is not the same flutter. This I am told is hard to map which means if they can’t be sure of the location how can they block it? Each ablatement is still successful fyi. This again is a new spot in my electrical system. For whatever reason my body is not only resistant but seems to have a weakness in that area. If records were better I would probably find it is inherited. I would’ve preferred lots of money not a fib. I realize you are young and you may not pay attention to anything I say. Fix it now while you are young and heal. They do need to find out more about what’s going on with you I don’t know the procedure there. I am very lucky here in the Houston Texas area as they move fast and don’t back off without an answer. My new EP already has other plans lined up just in case. Pilots do the same thing in case you did not know when they file a flight plan. A great pilot has more than plan a and B. I was married to one who had A through Z.

Just remember you are not following somebody through their entire life here you are reading current or perhaps a couple of years yes some might be 10 years. They don’t always tell you how many other things have happened during that time. Some doctors will do many cardioversions. I have a friend who has had 12. He is actually a doctor himself and doesn’t question it. My new EP and Cardiologist gave it a try and will try again because I’m going on a new medication to keep my rhythm. After that all deals are off about a cardioversion again. They said some people love them some doctors don’t believe in them. My doctor said he decided to try it. Sounds like he’s not a big believer in a cardioversion lasting very long. I had it done knowing this and for 3 1/2 weeks again I had quality of life. I was able to walk out to the car from the hospital that was not the case going in.

you really need to keep an open mind especially at your age when you have so much to gain. Sorry if I sound bitchy it’s who I am lol I shoot from the hip. I want everyone here to get well and live the best life they can including myself but you have to be real about it. At this time there is no cure for a fib get that into your head

[secondtry]

To add a couple of points:

Clearly you are not happy with actions so far but we all need to remind ourselves on this journey that we don't know whether the alternative would have been better or worse ie you could have been worse off without your treatment. I postponed an ablation but could have been better off without the Fleacinide imposition on my body for years.

I am totally with you in looking into your position more and maybe you should consult an 'experienced in AF' Alternative Practitioner in London. I did and happy to pass on more info if you message me.

[DawnTX]

Matt sometimes afib is sneaky. I look back and realize I had warning signs but I always wrote them off as something else whether it was anxiety or whatever. I lived a busy lifestyle. Be glad you only had what you had for warning signs. My wake up call was when I woke up facedown on my concrete floor. I had no idea why or how long I had been there. Later I discovered I pushed my top teeth to where they don’t belong as well as broke several. I had a couple go into the roof of my mouth. I must’ve landed on my knees first because they were black from above to below on both of them . Well somehow I managed to roll over and get up I was home by myself as usual. I crawled to my bed and got into it and went to sleep. Or so I thought. I woke to realize I was staring at the bathroom ceiling on my back with my head between the bathtub and toilet. I had no idea how I got there. Again I managed to somehow get up and get to my bed this time for real and I did go to sleep. Now I was a medic I know better however I did it anyway and realize I could’ve died. Next morning I could not move I hurt so bad I called my doctor and made an appointment for the next day I said I fell but didn’t make a big thing of it. Usually the secretary doesn’t care. When I went in the following day oh what a lecture I got. Doctor immediately did an EKG and called a cardiologist for me because I did not have one. EKG was not normal. The cardiologist put me on a blood thinner immediately also lecturing me. It took eight months to find out I had a fib because it’s sneaky and it doesn’t necessarily show up in an EKG The reason they found it was they had done an implanted loop recorder and within two weeks I had had over 300 episodes. Coulda would’ve Shoulda doesn’t matter thankfully once I got to the doctor I was in good hands. The fact I did not have a stroke I am so thankful for because it is the one thing that terrifies me and makes me think I would prefer to die is this what you would’ve preferred before your doctor acted? Yes you’re young which means you’ve got a good chance of having a great life full of meaning and quality. On top of everything else I had a Neurologist checking me out FYI the Holter monitor did not help me because Afib is sneaky just remember that

Here in the US there is a new commercial on TV they call it no time to wave and it’s about a fib. It is a simple list and they tell you to call your doctor because there is no time to wait. As you probably know by now stroke is the number one possibility with a fib more than a heart attack. A fib doesn’t usually kill but when your heart gets worn out some thing else can. Please appreciate what your doctors are doing and don’t blame everything on treatment. The meds they took you off of is probably one that keeps you in rhythm which is not going to help you if you’re not in rhythm. I have been on multaq and taken off of it several times for that reason A new year is coming fingers crossed you get the answers you want and you feel so much better. Have you read about the blanking period? I share it now because I never knew of it and it is the period when you are healing you can get all kinds of crazy symptoms it doesn’t mean you are not better it’s your body after trauma. Waiting is horrible I had a procedure in April I was told it could take up to a year to show results. You have to be patient I know that’s hard when you’re younger I was young once lol PS I still don’t like to wait but it is what it is. Get a second opinion if you’re that unhappy with everyone. I had to change doctors sometimes we have to do that but it was a personal situation medically I was in great hands

Try to be happy and look forward to good things Santa is watching you know and if you continue to be grumpy he might put coal in your stocking