Thanks to everyone who has responded to my initial posts. I’ve been extremely stressed out and worried since my diagnosis of Afib.
I have been down a dark Google rabbit hole and have been terrified of not only afib but by the prospect of other structural heart issues. In saying that the bravery and positivity of many who have got structural heart issues and afib was reassuring and hopeful.
I’m not sure if my anxiety could of handled anymore bad news in that regard tbh. The EP noted my high anxiety and worry as a friend of mine was recently diagnosed with cardiomyopathy.
He also noted that I was equally terrified of a stroke as I was from a bleed from the anticoagulants. He suggested my CHADvasc was 0 and that i had low risks of stroke and higher risk of bleed and didn’t need to be on an anticoagulant.
Because of my high cholesterol at 6.16 he wants to do a CT angiogram. Conversely my GP has told me he’s not worried about my cholesterol ! As did an AnE consultant.
He was happy that my echocardiogram showed no structural issues and no signs of any cardiomyopathy. He felt that a recent operation may have been what caused me to now be in persistent AF.
Any of you know how long I might have to wait for my CT on the nhs ?
Lastly thanks so much for the support and giving me the information to be able to ask all the questions at my appointment. Very useful and kind of people to take the time.
greatly appreciated.
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Dadtoalad23
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Hi you seem in exactly the same situation as me. It's very stressful to be first diagnosed. I wasn't told anything by GP basically given biosoprosol and sent back to work. Now on third kind of med already in two month's. It's been very stressful for me as well with very little sleep which has fed the AF episodes more to the point of daily 6 hours. Google didn't help me either really but as you it brought me to this great forum with a group of people with first hand knowledge only this week which has really helped me. Take care you are not alone.
Yup exactly all of that ! The stress leading to lack of sleep which then leads to more afib. My afib is persistent so feel it off and on. This forum has been great though, although I’m probably annoying as I don’t stop talking . Good to hear from other people dealing with same stuff and gathering as much info as possible. Good luck.
Hello! Had been wondering if you had any results. Glad that its good news on the echo front and that its reassured you re the cardiomyopathy. Interesting what the EP said about an operation causing AF, my husband had a tumour removed a couple of years ago and we assume he was in NSR then otherwise we thought they would have flagged it. So we assumed he went into AF after that.
Although you have the cholesterol thing to deal with now seems like good news, hopefully you will feel less anxious and hopefully feel a bit better.
I'm not familiar with cholesterol, is that very high?
At this end husband has been put on edoxaban in preparation for cardioversion as they say he needs to be on it at least 3 weeks before so we are feeling its imminent. It appears they just want to crack on with that as a priority and do further tests as and when they are available. I guess this is because his heart is struggling and they can figure out if theres a reason why its happened after.
Don't know how long you will have to wait for ct. Husband having MRI first, been 3 weks no word yet on that and ct after cardioversion.
Yes the echo has certainly taken some anxiety out of the situation for me. I definitely had AF before my operation possible it used to come and go like most peoples, I started having symptoms years ago and even had an ecg in 2017 which was fine, obviously now I understand I just wasn’t in AF. But the EP has suggested maybe the general anaesthetic has triggered me into persistent AF. I actually emailed the hospital to get my record and they say I wasn’t in AF but my EP isn’t sure and I felt i was. Who knows.
It’s interesting the different ways they do things as my EP had suggested the mri was harder to do if your in Afib constantly ? He also suggested I had the CT before the cardioversion just in case as I wouldn’t be able to have the flecanicide ? With a blocked artery.
I was told when I was 40 my cholesterol was within the health range and I trusted my GP only to find out my score at 40 was 5.9 nearly 6 ! 7 years later I’m at 6.16 which is high. I’m annoyed he didn’t see if I could make life style changes 7 years ago ! The consultant at AnE wasn’t to worried about my levels and neither his my GP but the EP was annoyed it wasn’t considered.
I think when they see me I’m 6’3 12 1/2 stone sometimes 13 and fit and healthy looking they don’t consider me a problem. Although as many no on here you can look fine and have high blood pressure cholesterol afib etc etc.
Good to catch up and best wishes and luck for your husband. I’ve now spoken to people who have been persistent AF and converted to NSR with cardioversion for many years. I think we hear a lot about failures as as a group they remain on forums, the successes on these forums who come back and impart information are invaluable ! And the ones that don’t also have great experience to share about living with this stuff.
Hi. Interesting stuff. I guess that might explain why they aren't in a rush to do MRI before as would be easier to do if he is in NSR after the cardioversion. Husband doesn't have high cholesterol so assume thats why they aren't too concerned about doing the cardioversion without the ct, he is taking amiodaron, not flecanicide. I think in his case they are just keen to try to get him back in NSR to give his poor heart a break! The arrythmia nurse says its figuring out if theres a reason for him its happening and hopefully something can be done so that the strain long term on his heart can be improved. Got to think positive and hope it works even for a little while and ut would be lovely if he could feel a little better.
Ps just looked up flecanicide and it seems this can't be used also on people with structural heart changes as well as blocked arteries, so that would explain why he has been put on amiodarone I assume and why the CT can wait.
he’s also very lucky to have a wife researching and being pro active. My wife thinks I’m insane researching rather than just listening to the experts. I will add she’s not completely wrong either !
Ha ha! Probably some insanity here too. I am at home alot as we have a 19 year old with autism who needs lots of care, but also sleeps quite alot so time to kill which is not always a good thing! Husband thinks more like your wife! I just like to be well informed 🙄
He doesnt really notice his heart rate, we arent even sure if he had occasional af before as he hadnt noticed. We only knew because of the episodes he had before the bisproprol settled it, but mostly he feels really tired. He wears a smart watch and it certainly jumps around a bit!
Being better informed certainly comes at a cost. For me I’m now terrified of the anticoagulants and yet have been told by the specialist EP that I don’t need to take them. Yet I’m now more terrified of having a stroke after reading what everyone says on here … and I’m on some Reddit groups. Bloody nightmare for an anxious person. My focus is my ten year old son and being around for him and being useful etc. So it’s hard, I know others that would just take the docs advice and not double think anything. Gonna have to get a grip and learn how to enjoy life without thinning I’m just surviving .
Whilst I like to be informed, I also have trust in the professionals, because what else can you do?! Its their day in day out. Husband also had the scoring system that you did and he didnt need the anticoagulant until now as he is hopefully approaching cardioversion. It makes sense that he didnt need them but now he does. I guess no one knows for certain if its the right choice but thats life! Life with our daughter has taught us to make the most of the situation you are in, not always easy. I have heard alot over the last few weeks about things being gold standard and doing tests to be absolutely sure all is ok, our fantastic NHS despite being on its knees is still aiming for gold standard and I think thats amazing!
Back towards end of 2019 wife was referred for an angiogram. We were told it would be a 6 to 9 month wait on NHS. We went private to speed process up but due to communication failures between our GP and the hospital it still took 2 months. That was Feb 2020...just before everything shut down.
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