An update...: Hello all, I hope you are... - AF Association

AF Association
19,944 members24,370 posts

An update...

Jfib
Jfib

Hello all,

I hope you are having a lovely Sunday :) I haven't posted in a while, as I have been quite down and left unsettled by my last cardiologist appointment.

I was having a follow up to get my loop recorder results. I had a different cardiologist this time, who, by all accounts, is highly qualified.

However, he was extremely patronizing. His first words to me were, "I think you are a nervous person". Well, yes, I am, because I am having problems with my heart!!

Then he goes on to say that yes, the loop recorder picked up many "runs of things" ( he refused to elaborate, or explain what they were), but it was all benign, so go home, go off all my drugs and do YOGA. I am not joking, I wish I were. I then asked about the Afib, his answer was, that I may have it, or I may not have it, but essentially it doesn't matter, as my heart is great.

Now he has shipped me back to my GP, and I am no longer a patient of this cardiology group.

I was gobsmacked. I mean, of course I want to hear that my heart is great, but I'm frustrated by not knowing if I do or do not have Afib, and of course, what these runs are!!

Also, for the past 5 months, I have had chest pain, that had been gradually worsening. I have tried like heck to get this addressed, but I keep getting told that I am "too young" (I'm 41, so NO) and have no risk factors, do it can't be anything. They refused to perform a stress test, or anything else. The pain is waking me at night, and this week I had a very scary day when it came on during exercise, and I nearly vomited. I am literally scared to death of this pain,but I can't get taken seriously!!

I'm at my wits end!

Thank you all for your time, and for letting me rant here. Any advice as to how to move forward would be GREATLY appreciated :)

Have a great day!

Jfib

34 Replies
oldestnewest
Hidden
Hidden

Hello Jfib, you're obviously feeling down and also I imagine frustrated, and who can blame you when you didn't get the answers you needed, but at least you know you haven't got A Fib and that's a bonus. I think when you see your GP he will explain things that the cardiologist couldn't be bothered with. When I first started with palpitations over 20 years ago, the heart specialist said there was nothing wrong with my heart it was electrical impulses that were at fault. He tried me on beta blockers that did nothing for me and I was left to live with it until I was diagnosed with A Fib in 2015. When you see your GP write down everything you want an answer for, and I hope you'll feel more settled after. Look after yourself.

Jfib
Jfib in reply to Hidden

Thanks for the reply Scottiesmom :)

Yes I will be seeing my GP again tomorrow (3rd time in three weeks!) and if nothing else I am going to try to get her to order a stress test. I'm so tired of having to fight to get things done. Chest gave me a fright again today, so I hope she will listen this time. I'm so worried I will have to wait weeks to get it done, and that I will have a heart attack before I ever have the test :(

Tramel
Tramel in reply to Jfib

I take isorbide. For esophageal spasms which really causes pain in the chest. This might be something to look at

Jfib
Jfib in reply to Tramel

Hi Tramel, thanks for the response :)

I have wondered about this. I have reflux, but this pain is different. Today it was particularly frightening , it felt as though it was very deep in the chest, behind the sternum, radiating upwards towards the clavicles, and very severe. It didn't last more than a minute or two, and almost spasmodic in quality. What does esophageal spasm feel like?

Thanks :)

Tramel
Tramel in reply to Jfib

Like a heart attack if you didn't no different I take nitro when I have one because they told me to treat it like a heart attack because the statins are so similar. Very painful😥

Tramel
Tramel in reply to Tramel

That should say symptoms not statins

Hello jfib - what a misery for you. Many runs of 'things' ... you may or may not have AF!!!! That is an appalling attitude for a professional clinician and it enough to make the strongest of us feel down.

There have been several posts from Canadian members who have also been brushed off without mercy and are unable to access private health care, otherwise my suggestion would have been to see an EP privately.

If this is not possible in your Province, can your GP access the results of your loop, advise you on your AF - which was diagnosed and it does not just go away - and help with your drugs? Yoga is a great idea but to suggest that it should take the place of a diagnosis and treatment for a possible heart rhythm disorder beggars belief. Could your GP also refer you for a second opinion?

Try to think positively - get your GP on side, perhaps take a relative or friend with you and have a list of vital points to discuss with your GP. Please let us know how you get on and do keep in touch. xx

Jfib
Jfib in reply to Finvola

Thanks Finvola;)

Yes I'm going to the GP again tomorrow to try and get her to order a stress test or something . I'm honestly more worried about a heart attack at this point than my arrhythmia. I'm afraid I'll be on my own though, as my hubby has to travel for work.

Sorry for hear of your experience with the consultant and also your disturbing symptoms. I would see my GP and ask for an explanation of what the consultant has said to you.

I would also ask for a second opinion from an EP preferably of your choice, this can be at any NHS hospital, under the "patient choice" system (I am assuming you are UK based).

You are clearly not happy with the current explanation and to be honest I would not be either in your position. Your symptoms are worrying for you so please take control of the situation and get further assistance. You could always present at a and e if you have another episode like the one you mentioned.

The good news is you have been told your heart is sound but that doesn't explain your chest pain which needs either properly explained reassurance or further investigation.

Please be proactive see you GP and be assertive, its your heart and belief me medics would be proactive if it was them. Good luck, you will get sorted just need to be persistent.

Jfib
Jfib in reply to meadfoot

Thanks Meadfoot:)

I actually did go to the ER when this occurred ( not the first time for this chest pain). They did an ecg and nothing else. The resident said I probably need a stress test , but the attending put a stop to that. Same old answer, a woman with no risk factors. Sad thing is I am certain that if I were a man complaining of this a stress test would have been done months ago :(

Sorry, see you are in Canada, but the same applies, see your GP equivalent and be insistent about a second opinion.

Don't ignore your chest pain- there must be a reason for it. If you can go to A and E while it's ongoing maybe they could check you out.

I would think about a Kardia (Alive Cor) recorder so you could check yourself when you get a "run" of something as it tells you if you have AF

Jfib
Jfib in reply to rosyG

Thanks Rosy :)

Definitely not ignoring it! I've been trying to get anyone to address it since December! The aarythmia was a secondary issue for me. The last cardiologist wouldn't even listen to my symptoms before using my favourite line of " young woman with no risk factors ". It's getting worse pretty quickly, I worry that I will have a heart attack before I ever get a proper test. :(

rosyG
rosyG in reply to Jfib

go to emergency care if you get pain like this- blood tests will show if you have had a heart attack- even if minor

Jfib
Jfib in reply to rosyG

Hi Rosy:)

I actually did. Unfortunately I went to the wrong hospital and got fairly sub-par care. Had to wait a LONG time for an ecg, after which they Refused to do a cardiac blood panel, as I had had one done before (weeks ago) and it was normal. The logic there was... something. I was so irritated at this point and feeling better that I didn't fight it. This encounter seems pretty representative of my situation.

The sad part is that the city I live in is considered at the forefront of cardiac care for the province!

Canadian Healthcare is really not what it's cracked up to be. The only good part is that it is 'free'.

I'm actually really jealous of your NHS.

cuore
cuore in reply to Jfib

"Free" is not entirely correct. We still pay monthly according to how much we earn, granted the premiums are not high.

RexH
RexH in reply to Jfib

I have been reading the posts on your dilemma, and I agree with others, don't let them Mick you around. What about getting a Garmin HR tracker, you could ware it doing your daily routines, walking, and it would track what your heart is doing whilst exercising.

Jfib
Jfib in reply to RexH

Hi Rex :)

Thanks, I actually have a fitbit. It really has been indispensable to track my heart rate (even though we aren't supposed to use it as medical device ;). Great advice, I would be lost without mine.

RexH
RexH in reply to Jfib

Great you have one. My specialist(I am in Australia), seemed pleased I have one, and noted my heart generally was tracking with my movement, and that was encouraging. He told me he was cautiously optimistic after my ablation on my visit to him. So I hope your vitbit can help to give you some confidence in what your heart is doing as my Garman has me. I never take it off except to charge it.

KathFrances
KathFrances in reply to Jfib

hi jfib, I've also been brushed off by my gp despite chest pains and ever increasing episodes of pain, arrhythmia, nausea, lightheadedness, fatigue. Last week I got an app called Preventicus on my mobile phone. Must be intuition because the next day I had my worst episode ever - 12 hours of arrhythmia that meant I could hardly leave the sofa. Luckily I recorded it with the Preventicus app, which gives you either 1 min or 5 min measurements - and of course it suggested it's Afib and to see a doctor asap! I've emailed the recordings to my laptop and will take them to my gp next week. Don't know how accurate this app is, it's very cheap, but it's giving me some evidence of what's going on. Perhaps this could help?

Jfib
Jfib in reply to KathFrances

Thanks for the response Kath :)

This app sounds very interesting! I'm going to look it up. I hope they figure out your situation. So frustrating not to be heard!!!!

Hello jfib - just wondering if your 'chest pain' is possibly reflux and or digestive problems symptoms of which can be increased with anxiety and reclining during sleep. Cathy

Jfib
Jfib in reply to Trilby8

Hi Trilby8, thanks for the the response:)

Good suggestion, yes I also have Gerd/Gord. I have had it for many years, these pains are definitely different.... they also don't respond to my regular meds, or even Gaviscon, which is my usual drug of last resort. My GP even gave me stronger drugs, in hopes that it was reflux, but it isn't working. She's also tested me for an ulcer, I haven't heard anything , so I assume it is negative.

I really wish it were digestive !!!

As always, thank you everyone for taking the time to respond to my rant. Your kindness and willingness to help is so exceptional. It warms my sore heart ❤️

Tricia239
Tricia239 in reply to Jfib

Hello jfib, A few years ago I experienced pain in my chest and underwent various cardiology tests. At the same time I was having physio/massage for a painful shoulder. The physio just happened to mention that one of his patients also had pains in the chest and was undergoing cardio investigations and the pains turned out to be referred pain from her back - and ultimately so did mine. Obviously I have no idea whether yours is or not, but it is worth investigating. Like you I was very worried but also reassured that there was nothing wrong with my heart. I mention it simply because it is just something you/one wouldn't automatically think of to cause chest pain. I was convinced mine was my heart. Irrespective of anything, do try yoga, it has so many benefits and if it is referred pain it will help with that too. Very best wishes for a swift and positive resolution. Tricia

Jfib
Jfib in reply to Tricia239

Thanks for the response Tricia :)

I'm glad they got things sorted for you, and that it wasn't your heart... A big relief!

That is very interesting, I would never have even considered my back as a source of pain, good to know that it is possible.

I sincerely hope it is not my heart.

Stay positive, be prepared to find the problem by a process of elimination which will take time and costly (private appointments may be necessary), find a cardiologist you can work with if you have to go back, turn this frustrating period into a positive long term move e.g. Yoga or Qigong can have long lasting benefits all round, so can reducing your stress levels. In 2 year time you could be free of symptoms and a lot better generally. Good luck!!

Jfib
Jfib in reply to orchardworker

Hi Orchardworker :). Thanks for the response. Yes, I didn't mean to give the impression that Yoga wasn't an excellent form of exercise and stress reduction, I completely agree with you:). I was only complaining that I didn't think it appropriate to go off medication that works. Together I think it is a very good idea!

It is hard to stay positive, so worried, but I will try :)

Hi

Wish u well 🌺

Funny thing i had the same problem ten years ago when i was also 41

I was going through a extremely stressful divorce and was staying at my frinds house for a few months

I had such a scary pain never had it before it before in my life

It felt very deep in my sterum area and upper back and a feeling of tightness

It was just come on for no reason and disappear the same

I am in uk so called amulance sent home nothing they could find ecg normal

Then i could a docter to the house again he said i was too young for heart problem

I had it on off for a few months then disappeared. Never to return again

Personally i think you should get a second opinion for peace of mind

🌺

Jfib
Jfib in reply to Jamila123

Hi Jamila, thanks for the response :)

That must have been very scary for you! I'm so glad that it resolved on its own, what a relief!

I hope I would be so lucky!!

I'm not surprised about what you say about our great Canadian Health Care system:

"The sad part is that the city I live in is considered at the forefront of cardiac care for the province!

Canadian Healthcare is really not what it's cracked up to be. The only good part is that it is 'free'."

It fails us in the atrial fibrillation department.

I live in near Vancouver and have been more than disappointed with the wait time of one year for an ablation, if I even qualify, costing me to be in long-standing AF by then. And nobody cares!

Like you, the one visit cardiologist was patronising. Unlike you, I had a GP that waited until I got to persistent AF before he referred me. Enough of the great Canadian Health system.

Can't the loop recorder pick up if you have AF? Or,if any runs of AF were too short to be a concern? The cardiologist would have to write a report to the GP, So I would ask the GP to read the report back. Also, you did say that you had an ECG done while at the hospital. You are entitled to get a copy if it which will show at the time that it was done whether you were in AF or not. A copy would have been sent to your GP.

You later say that Canadian healthcare is free. That is not entirely correct. You still pay monthly according to your income, although the premiums are low. There is also a threshold where you do not pay at all. For those, the term "free" can be used.

Jfib
Jfib in reply to cuore

Thanks Cuore :)

Yes, I remember the trouble you had even getting your GP to send you to a cardiologist. Absolutely horrible care there! I'm really sorry to hear it hasn't improved :(

Canadian Healthcare works for some, but you are right In That it hasn't worked for us very well!

And yes, not technically 'free', but I'm mentally comparing to the US. I feel so badly for Americans. I guess everything in perspective :)

Yes, my cardiologist did send a report to my doctor. I had her read it to me yesterday. Amazingly he doesn't even explain the contents of the loop recorder to her either, just that it is 'benign', and that I have complained of chest pain, but in his opinion it is not my heart. Funny because literally all I said to him was " I've been having this chest pain..." At which point he cut me off and said it wasn't my heart. Glad he has fluoroscopy vision and can see my coronary arteries through my skin ;)

As for the Afib, it was only seen once, and not on the loop recorder, so it is still up in th air. It could have been happening when I was asleep, but since I have to manually activate the recorder, I wouldn't know. Basically the cardiologists have given up on it and don't care :(

cuore
cuore in reply to Jfib

I enjoy your wit, Afib. Pray your condition doesn't develop into AF. Should that unfortunately ever happen, do hammer the "duration classification" also because, for me, all the medical system here concentrates on is the symptoms classification as my heart goes to hell in persistent AF. Definitely be on top of it, because as you know, Canadians are noted for being relaxed and AF is a classic medical example.

You may also like...