Advice for Monday : Hi All, I'm just... - Atrial Fibrillati...

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Advice for Monday

SVTSophie profile image
31 Replies

Hi All, I'm just after some advice as I'm seeing a new Cardiologist on Monday after I collapsed at work in November to be told my SVT was back after my second failed ablation back in November 2014. Since then I have been put on; x4 Verapamil and x2 Ivabradine daily and they don't seem to help at all. After reading some articles posted on here, I have seen one that mentions AFIB can cause the heart to become enlarged, I've only had one ultrasound done before my diagnosis. Should I ask for another one to be done? Also, I'm wondering if the SVT could in fact be Angina as I suffer from a lot of symptoms/chest pains without having palpitations but have never been tested, should I inquire about this also? Sorry to ramble on, I'm just trying to think as much as possible to ask as this is a new Cardiologist and not entirely sure what the next suggested course of action would be. Thank you x

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31 Replies
BobD profile image
BobDVolunteer

Yes obviously you should make a list of all the things which worry you so that you can cover all of them during your consultation.

Regarding the "enlarged heart" thing I know that long term uncontrolled AF can cause the atrium to enlarge (cardiomyopathy) but that this is reversable if the AF is controlled. I cannot comment on the effect of svt which is a different arrhythmia.

SVTSophie profile image
SVTSophie in reply to BobD

Thanks Bob, I've never actually been told in detail the difference between SVT and AFIB. As my first ablation was for an irregular rhythm and apparently from my ECG's my heart still 'fires off' extra beats. So I'm still not entirely sure where I sit on the spectrum?

BobD profile image
BobDVolunteer in reply to SVTSophie

Well in simple terms SVT stands for supra ventricular tachycardia which means a ventricle tachycardia where the signals casing the ventricle to beat too fast are coming from above the ventricle (ie the atria).

Atrial fibrillation is uncontrolled pulsating of the muscle of the atrium which is the top left chamber of the heart.

The main AF Assocation website has load of fact sheets which may help.

Dee1989 profile image
Dee1989

Hi Sophie! Best of luck for Monday, def ask the cardiologist all of these questions as he will be able to answer them. I also get chest pains sometimes especially between episodes of SVT. Did I tell you that mine is is in the right and left chambers which makes it more similar to AF in terms of ablation but still comes under Atrial tachycardia as a diagnosis. My diagnosis has changed 3 times depending on what that found at the time. Mine didn't want give a lot away in the beginning. I was initially diagnosed with AVNRT then SVT now ATRIAL TACHYCARDIA (which is still a form of SVT just more complex.) Therfore I think it is always worth checking things again and again. Like you I have only have ever had the one ultrasound at the very beginning. So it may be worth asking?

How are u feeling now xx

SVTSophie profile image
SVTSophie in reply to Dee1989

Hi Hun, thank you :) See that's mad, I think this is why I keep getting myself confused between all the differences of tachycardia/arrhythmia's as no one has really explained the difference to me and no one has said anything since my diagnosis 6 years ago, so that's why I'm wondering if that diagnosis still stands?! I'm okay, just still get palps, chest pains, short of breath and dizziness! How are you feeling since your ablation?? :) xxx

Dee1989 profile image
Dee1989 in reply to SVTSophie

SVT basically means fast heart rate above the ventricles. So as I've been told can mean a wide umbrella of things but generally our Arrythmia is in the right side of the heart and it can happen to anyone of any age. (However mine is also in the left side which shocked everyone) it is a regular beat between 150-250 on average and is caused when electrical sigbals fire in the atria and cause the signals in the SA node (hearts natural pacemaker) to become confused with the interference this is when it looses Rythm. It generally affects children and young people and some adults.

AF I don't know as much about I bet there are far more people on here that can share, but I think the basics are from what I've been told by doctors it's the most common Arrythmia affecting the most people, it can affect all ages however is more likely to happen as you get older. It is caused by electrical signals firing in the atria and causes the muscles to contract faster. It is an irregular Rythm that you get.

I am feeling ok, just feel like I will never get back to not feeling tired I have really struggled with how tired I am, and also I've had some dizzy spells when standing up but they settle after a few minutes. It's been a life changer on the fact I spent most weeks attending A and E before my ablation. I will See my EP in February for follow up xx

SVTSophie profile image
SVTSophie in reply to Dee1989

I'm still confused by it all.. Hopefully this new Cardiologist will have a bit more time to be able to explain things to me and treat me like a human and not just some faulty machine like my last one!

So glad to hear you're doing so well, apart from the dizzy spells and at least your follow up should come round fairly quick :) When I had my last ablation (November) my cardiologist didn't see me until May :/ xx

Dee1989 profile image
Dee1989

That's a long time! Yes hopefully this new cardiologist will be able to give you some answers! I am struggling with weight loss at the moment Aswel I put on a stone with all the medication and having two ablations (I'm blaming it on this 😂) and I thought once I was off the meds the weight would drop but it hasn't. Have you found this? X

SVTSophie profile image
SVTSophie in reply to Dee1989

Ha! Don't even get me started with this.... Since being back on the meds in November my weight has rocketed!! I'm also struggling so much with getting rid of any of it :( and still too scared to exercise since November. Literally have no clue what to do. xx

Dee1989 profile image
Dee1989

I was always told anything that is good for a 'normal' person is good for me including excercise maybe just some light stuff walking etc. I think a lot of it is the medication apparently they can make you gain weight. like my boyfriend keeps saying to me wait till I'm completely better and all the odds have been against me weight wise lol.

How has work been? I only went back two days a week just till I felt well enough I'm due to go back full time in February but now my boss is saying to me she doesn't think I look well enough (when everyone has said how well I look) and she wants me to stick to two days!! Very convenient when she has been planning redundancies and making cuts. xx

SVTSophie profile image
SVTSophie in reply to Dee1989

You can only do what you feel is right for you in terms of light exercise :) Probably not a great idea if you're still getting dizzy spells!

Work haven't been great, it's that whole thing again of 'if they can't see it, they don't believe it'. I've even had to use my holiday for my Cardiology appointment on Monday, as was put on disciplinary after my last heart op for having a week off sick.. So yeah, not great at all. Hmmm, your situation doesn't sound great either. Like I said, it should just be entirely up to you, how you feel and what you're capable of doing. xx

Dee1989 profile image
Dee1989 in reply to SVTSophie

Yes mine are the same! I have always used my holiday for appointments and we don't get sick pay just SSP.

The first time I was off I went back full time as we didn't have as much stuff now there is too many it's convinient for me not to be allowed back. It's so upsetting. You know people don't really see what your going through anyway. Xx

SVTSophie profile image
SVTSophie in reply to Dee1989

It's so rubbish! If I could afford to go part time till I felt comfortable enough to work full time then I would, that would be a dream! (Not a dig or anything, would just generally love to do that) or even work from home on a full time basis as I have that option, they just wont allow it! I don't see the problem to be honest! I think we actually put more effort in than some colleagues who sometimes phone in sick because they're 'hungover' at least we're trying!!! xx

PeterWh profile image
PeterWh in reply to SVTSophie

Summed up above - as people don't see it they don't believe it!! Also people's conception of heart issues is people having a heart attack, being put on medications and back at work two or three months later.

Dee1989 profile image
Dee1989

I know, that's why I'm so upset as I can't afford to be off. That's what's upsetting me I've really struggle not having them obey and was looking forward to getting back to my full time routine. Never mind xx

SVTSophie profile image
SVTSophie in reply to Dee1989

Maybe we should form a union! :P xx

PeterWh profile image
PeterWh

Sophie

Just put a long response on your AA (Arrhythmia Alliance) post (which I saw first).

PeterWh profile image
PeterWh in reply to PeterWh

It's easy to copy text from a posted response when using a PC but can't find how to do so on iPad.

SVTSophie profile image
SVTSophie in reply to PeterWh

Think with ipad's you have to keep your finger on the text, then it should give you the option to 'select all' then 'copy' :)

PeterWh profile image
PeterWh in reply to SVTSophie

That works when typing in the reply box (or an email, etc) but when the post is already up (whether from someone else or me) doing that allows me to pick up a single word to copy but option to select all does not appear.

When typing in a post I have found quick tapping a few times also allows you to select all.

I know a lot of things and short cuts on computers but unfortunately most do not work on an iPad😞

SVTSophie profile image
SVTSophie in reply to PeterWh

Ah if it comes up only allowing you to select one word, it should appear in a blue highlighter box and then you should be able to move that box in the corners over the whole text (so manually select the text) and should allow you to copy ☺️

10gingercats profile image
10gingercats

I am not knowledgeable enough to advise you but to say....do ,if possible, take someone with you to your appointment.You will be concentrating so hard on what the consultant says it is possible points will be missed.I have found having someone with me.... and possibly to take notes, is a great asset.

SVTSophie profile image
SVTSophie in reply to 10gingercats

Definitely agree with you on that one, I've asked my dad to come along with me as he works from home on Mondays and he can be quite assertive with questioning as I don't like to question too much in case I come across as disrespectful to authoritative figures, if you know what I mean.

SVTSophie profile image
SVTSophie

Dee! (Sorry Peter I will reply, have been deep in research!). I have just been looking up the legalities of employment laws and discrimination. So, it actually turns out that we are covered under the Disabilities Act (gov.uk/definition-of-disabi... ) and therefore are protected by law for our employers to make reasonable adjustments for us to enable us to continue working. We also have the right to submit a 'Flexible Working' Request. From what I can tell! So maybe it's worth speaking to someone in HR or your boss as they are aware of your situation and are/will be breaking the law if they refuse your right to work your contractual hours.

I think I'm correct anyway, here are a few links I found all this from. Wonder if anyone on here would be able to share a legal incite??

nhs.uk/Planners/Yourhealth/...

iosh.co.uk/Books-and-resour...

legislation.gov.uk/ukpga/20...

citizensadvice.org.uk/work/...

Dee1989 profile image
Dee1989 in reply to SVTSophie

Sophie!! I have only just seen this! Wow every time I have spoken to ACAS they always tell me to find out if I am covered by the equality act!! Xxx

SVTSophie profile image
SVTSophie in reply to Dee1989

It does say AF is covered under the disabilities act! 😃 Xxx

Dee1989 profile image
Dee1989 in reply to SVTSophie

And SVT? Xx

SVTSophie profile image
SVTSophie in reply to Dee1989

Not 100% sure but it did say 'irregular heart rhythm' ?? Xxx

Dee1989 profile image
Dee1989 in reply to SVTSophie

Yes I saw Arrythmias on there xx

Dee1989 profile image
Dee1989

You have been a huge help. I really need to speak to my boss as I do not think she realises. She always talks about how she can't treat me any differently to everyone else. Xx

SVTSophie profile image
SVTSophie in reply to Dee1989

If I were you I'd just all citizens advise tomorrow, as they may know a little bit more around leagalities of it all. Hope this helps xx

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