My old blog: Hi All, As it is kind of... - Heart Rhythm Diso...

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My old blog

SVTSophie profile image
9 Replies

Hi All,

As it is kind of a forum for sharing experiences, I completely forgot I had written this blog. It basically everything I've been put through from day 1.

So if you're interested have a read :) (It's back to front though, the bottom page is where it starts)!

sophiesstory-livingwithtach...

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SVTSophie profile image
SVTSophie
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9 Replies
Devine75 profile image
Devine75

Very interesting!! IST? That's a new one on me? Is it not just the same as svt? It's not good that yours was so close to sinus node and the fact they mentioned pace maker! I'm fortunate (so far) that mine was lower down. Atrial it the top end isn't it? Like with af? I am still trying to learn and understand!

Before my first op I was told that after I'd be symptom and drug free but two ablation a later I have regular ectopics which are still symptomatic and bad anxiety! I wish the docs would just be straight up with us it seems everyone is told different things. And I know we all have different experiences but the fact it can come back should be mentioned xx

SVTSophie profile image
SVTSophie in reply to Devine75

To be honest with you, I have no idea. Nothings ever been explained in much detail to me I've always had to do my own research or just been handed a leaflet. Until I joined this forum I had no idea how complex it all was or how to differentiate between all the diagnosis! xx

Devine75 profile image
Devine75 in reply to SVTSophie

Yeah I know what you mean and sometimes I think it's best not knowing sometimes I worry about things I don't need to worry about after reading posts. I think our svt is possible to get rid of I think af is more difficult but that's just from reading stuff on here xx

PeterWh profile image
PeterWh in reply to SVTSophie

I think that the first thing is that people should say to the consultant is that they want and are interested in things being fully explained and want details. Otherwise the default scenario is often a minimalistic explanation because there are a significant number of people who just don't want to know and also there are consultants around who think that they know best and don't need to explain (the old school approach, even by some people the younger ones). At the opposite end of the spectrum are consultants who are very keen to tell people and their approach is to work alongside the patient (the modern and enlightened way and can't nsultants of all ages use these methods).

When I saw my EP for the first time I said that I wanted to know and wanted explanations. He even drew a diagram which e gave me and he ask said I HAD to look at the AFA website, not just one but regularly. When my cardioversion had failed and EP talked about the pros and cons and in generalities about chances of success. I then asked him what he thought that the chances of success were in MY case and I asked him to be absolutely open. He then said that he felt that in MY case there was no chance that an ablation would work first time and that it would take two or quite possibly three attempts. I know many people wouldn't want an EP to be so blunt but I wanted to go in ith my eyes open so to speak.

PeterWh profile image
PeterWh

Sophie

Just had time to read your old blog whilst relaxing and recovering in a hot bath.

Wow you have been through the mill over the last few years. I always have felt sorry for both you and Dee having these problems when you are only in your 20s when you should be burning the candle at both ends. I know that I did. It was bad enough for me when I had to give up hockey and squash at 32 due to a car smash. For you both it is even worse.

Your blog was very interesting and enlightening and I learnt more about the vagaries of the heart and the body's electrical systems.

Let us know how you got on yesterday (Monday).

SVTSophie profile image
SVTSophie in reply to PeterWh

Morning Peter!

Thank you for your kind words :) I just sat down and poured my heart out one evening over it all and as a result came the blog! I'm thinking about updating it again soon....

So yesterday! Well, Basingstoke hospital has basically now said it's a lot more complex than what they thought and not sure if they are 100% on the diagnosis so I'm now being referred to Southampton hospital under Dr Andrew Yue. I've looked him up already and sounds like the perfect man to go and see! So now it's just a waiting game for another appointment, he also said I'm on the best medication possible so not to change anything until I've seen Dr Yue because he can apparently undertake more invasive tests to find the true underlying problem but he did warn me another ablation may end up in the pipeline....!

PeterWh profile image
PeterWh in reply to SVTSophie

No problems and thanks. Wery well worthwhile reading and it would be great to see your update.

Well a step forward even if no specific solution yet in sight!!! I also think teh decision to leave medications was the best so that a further set of variables and possible effects don't muddy the picture.

Janco profile image
Janco

Hi Sophie

I just read your blog, Wonderful!!

I have had AF since I was 23, but I'm still learning new stuff about arrhythmias, and I also just had to write about it, and started myafibheart.com/ check it out, and if you can give some feedback.

So I'm lucky to see 2 cardiologists each year, and I go to them with a list of questions that I have written down (and even then I don't get all the answers - or don't understand).

My EP and one cardiologist have drawn pictures to try and show me what's going on and it helped.

Janco

SVTSophie profile image
SVTSophie in reply to Janco

Hey Janco,

Thanks for taking your time to read! I've just read through your blog and it definitely puts mine to shame! You're very insightful and positive about the situation, which is great :)

Sounds like the health care in South Africa is better than over here! Have you really been Afib free for 2 years?! Amazing.

Make sure you keep us up to date :)

Sophie x

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