Looking for advice??

[Doris2010]

Hi I'm new to this forum, I was diagnosed with SVT in 2011, prescribed every beta blocker going but felt worse on them so referred to a specialist who assured me ablation would be ideal & cure me! I reluctantly agreed ☹️

6months post op (apparently successful) I do not feel "right" weak/tired/fatigued unsteady on legs short of breath at times and just a general sense "something isn't right" back & forth to cardiologist who have preformed 24hr trace & echo in May.

Told at the time everything "normal" & that I'm suffering from anxiety! Have tried to move on & tackle this best I can but symptoms have remained & I feel like I'm going crazy!

A visit to cardiologist yesterday as I've now noticed at times my HR dropping to 41bpm! He casually informed me I have a hole in my heart that was overlooked??? But nothing to worry about apparently??

How do I get my head around this? How can I not attribute it to my symptoms? & how the hell after Cardiac MRI 2 echos & EP study was it missed?

Don't know who to trust anymore😢

[Sina-6491]

I know what you mean. I am 10 months post opp & simptons very similar to yours. Missed consultant appointment Mon just gone. New appointment November.

I have also been told it could be anxiety. Mind you I originally put that idea in their heads, as I think it could be a possibility.

I don't have too much confidence in what I am being told.

I don't think I would have known I had a heart attack if I hadn't taken myself to hospital that day. I had been going to see the GP for 6/ or months before hand.

Then if I hadn't have persisted, they wouldn't have known I needed a bypass two years later.

I really do feel you have to push the system constantly to get answers. I guess it's because they are so stretched most of the time.

Most of it is a lucky break when they finally get on to the problem I recon.

So keep notes and be a pain if you have to. I think sometimes they focus on one area, then become complacent. I do think they have our best interests at heart. I think us heart patients just become a bit too much for them. Especially if we have other health issues.

Be persistent to get your awnsers love.

You're not alone honestly. Best of luck now, Jo 😊

[Doris2010 in reply to Sina-6491]

Thank you for your reply, I'm so sorry to hear what you've been through & still having to endure I do hope you have a good support network around you, we trust our instincts & know our own bodies & I just know mine isn't functioning properly so yes I will keep persevering until I get answers but I think I will also be seeking a 2nd opinion. Sending best wishes for your recovery xx

[Sina-6491 in reply to Doris2010]

Bless you, I'm ok though. We have to be don't we.

Good idea on 2nd opinion.

Have a good Sunday now 😊

[laura_dropstitch Heart Star]

That's really tough. Heart issues are stressful enough when you do have confidence in your medical team, much worse if you don't. I think the only way for you to regain confidence is to take control of the situation and ask every single question you have and make sure you are 100% satisfied by the answer. Have you asked them to explain how the hole in your heart could have been missed? Maybe there is a good reason,but if not, tell them how concerned it makes you and get them to explain exactly what they are doing now/why nothing else will be missed from now on. You also need to ask for specific reasons why this hole is apparently nothing to worry about. Could be that it is nothing to worry about, but you need a clearer explanation to convince you. I think most cardiologists are happy to give you detailed information if they think it helps (ie if you ask for it) but are sometimes a bit vague when they attempt not to bombard us with confusing info. Hope you come to trust your team again, you really need to feel confident in your treatment plan. Good luck.

[Doris2010 in reply to laura_dropstitch]

Thank you for your reply it's exactly what my husband & I have been discussing today, I was so shocked when the cardiologist mentioned it that everything becomes a blur & you don't know what to ask! He was so casual in his approach, like it didn't matter, I had the echo 3months ago and at the time the docs who performed it said it was clear! So you can imagine my shock, and then to say oh well it's tiny probably been there since birth so don't worry! Mr sensitive eh! Especially as he knows I've been struggling psychologically since the ablation. Think I'm gonna request copies of my echo & holter reports be sent to my GP.

Thanks again for your advice, it really helps & keep up the good work yourself your doing great!😀

[laura_dropstitch Heart Star in reply to Doris2010]

Aw, thanks Glad I could help in some way. I know that feeling of shocking information delivered so casually, nobody can ever work out what they need to ask before the appointment is over. The medical staff I see are always really happy to answer questions after the fact if you contact them once you've digested everything, hopefully yours are the same. X

[Saggybagpuss in reply to Doris2010]

Hi..I can totally understand your anxiety.. I'm 67 and they have just mentioned in passing that I have a hole in my heart and also said nothing to worry about as I could have been born with it. I agree with other comments that if you ask they are happy to explain but only if you ask. I suppose the problem is, when you hear the news for the first time it's a shock and any questions go out of your head! I have found on my heart journey, to ask to know everything good and bad and ask them to explain in laymen's terms.. You have to push them as they will only give you information they think you can handle.. Don't be afraid.. It's your heart after all.xx

[Doris2010 in reply to Saggybagpuss]

Thank you for your reply (love the name!) yes your totally right I think consultants forget that we are humans with feelings & not just a number they are seeing for 10mins, I also think they are being sketchy with their replies because there is a possibility that my ablation could have caused "the hole"

Can I ask, do you have any symptoms or was it found by chance?

Thx

[Saggybagpuss in reply to Doris2010]

Hi Doris2010...I have had both of my legs angioplasty and my heart disease was diagnosed about 18months ago, when I couldn't walk without getting puffed out and subsequent angina pain. To answer your question, after being given 7 drugs to take, this reduced my angina however, the breathlessness remains. I had a profusion stress test about 6 months ago which showed added problems but I have to say, the consultant did not think that the hole in the heart was a problem at all, not connected to the breathlessness, so therefore insignificant. So I have accepted that and feel quite confident in his opinion. Have to say, the breathlessness is still there when I walk, and I have another appointment with him in November, so I may ask him again about it, but on the whole (no pun intended) I accept his opinion.

Hope this helps, although I think you must do whatever you have to, to ensure you feel comfortable about it.

Keep asking questions..good luck X

[Doris2010 in reply to Saggybagpuss]

Thank you Saggybagpuss! I am in receipt now of a letter my cardiologist sent GP re hole (pfo/asd) still can't believe that was sent 9/6 and I only find out now by chance appt I had to schedule with cardio as I still don't feel right! There is also evidence to suggest it could have been caused during ablation but everyone staying tight lipped at the mo!

It leaves us at much higher risk of stroke & im not even on medication so I've started taking aspirin anyway!

I'm on a mission now to find out what's happened because we only get 1 ❤️ don't we!

Good luck on your journey I wish you all the best xx