Last hope

[Nomis21]

Hi,14 months on from pace and ablate and I am still struggling with chest discomfort weakness, breathlessness, exhaustion on exertion which also causes that I can only describe as intense pumping of the heart, not fast but hard beats which causes me to feel week in the lower half and dizzy, lightheaded.

I get skipped beats and it feels like a blood rush when the next one kicks in. I wheeze, cough and even climbing stairs can take it out of me.

I get these feelings everyday which makes me exhausted and tired.

Had various tests, holster monitors, blood tests, angiogram, since my op back in June 2022 and nothing has been shown as a concern.

Previously been referred to the asthma/breathing clinic and anxiety therapy both have been ruled out as a factor.

I was told I was 5 times more at risk of having a blood clot or stroke before my op but I feel more at risk now after the ablations and pacemaker fitted and my life hasn't been the same since.

Some days I really struggle and have to resort to bed or sitting, always been an active person pre surgery but these symptoms can drain me and I'm only 52.

Anyhow I have a appointment with a DR at the cardiology department in the NE of the UK, now other than telling the EP of my symptoms I wanted to ask on here if anyone thinks I should be asking anything else, my knowledge of this type of surgery is limited so just thought I'd put it out there if any would know what I should be asking him?

Thanks

[Afibflipper]

Hello Nomis21 - I’m so very sorry to hear of your current issues. I almost needed P&A but not in the end. I’m not medical but just a thought, are you getting any fluid build up in your feet/legs, are you on diuretics. When this happened to me I couldn’t get out of the chair to do 10 paces without being unable to breathe. I was given diuretic & lost 10lbs of fluid and could breathe & walk again. It was thought to be right sided heart failure but they have no idea why it occurred. I am asthmatic and change of inhalers have seen me right. I would definitely get to see your EP again & maybe get a referral to a consultant in respiratory as they know far more than just visiting the GP (I had to request my own referral as GPS just keep trying different things none of which ended up being right). I really hope things improve quickly for you x

[Nomis21 in reply to Afibflipper]

Hi AFI flipper,Thank you for your reply.

I don't have any fluid build up in the lower half but I do get terribly bloated around the abdomen, not sure if this is a factor but it's uncomfortable, I don't carry much excess weight.

Not taking any medication.

[Astridnova in reply to Nomis21]

I am sorry to hear of your painful and worrying condition. I developed complications after an ablation, but these were missed by my cardiologist, who misinterpreted the symptoms (severe pain in back of neck, mostly, in my case, especially if I leaned forward.) A full blood examination was key to discovering the problem. My GP did full bloods and discovered I had really bad liver results. After my cardiologist heard this, he admitted me overnight. XRays showed that, as well as pericarditis, I had a huge amount of fluid on my liver and in the linings of both lungs. I was in hospital for 9 days on IV diuretics and ultimately had a fluid drained from my lung via thoracentisis. It took another month on oral diuretics before the fluid stopped building up, and I am well now.

[Nomis21 in reply to Astridnova]

Hi Astrid, Thanks for sharing this, do you know if the ablation was contributing factor?

Pleased you have recovered.

[Astridnova in reply to Nomis21]

It's all a big mystery. It could have been that, or it could have been an earlier angiogram, or it could have been the probable cause of the AF, which was likely too high a dose of thyroid medication. It might even have been affected by one of the vaccines. There was a failure to do the required Chest XRay before the ablation, so we don't know when the whole thing started, but, going by the pain I associated with it later, I think it started after a failed electro-cardioversion and before the ablation - which might put it in the region of the angiogram, which was quite uncomfortable. However the involvement of all those organs probably indicates something more systemic, as in the high dose of thyroid meds causing the AF and stressing a couple of leaky valves in my heart that are not normally a problem, ending with a cascade of extra fluid from heart, to lungs to liver. And yes, I am glad it was finally fixed. :-))

[Afibflipper]

in my non medic reply I’d definitely get that checked out - I had my fluid in legs up to my abdomen - if the fluid has nowhere else to go then it’s going to affect breathing heart etc - if you feel really bad either call 111 or A/E - only you know at the moment how bad you feel xx

[DawnTX]

I understand how you feel because once we get the p.m. you think you are almost home free because I was for several months. My EP has reminded me not everything is heart related. For me he believes my anxiety causes much of my problem. I thought he was wrong but last week I had not one but two attacks sitting with my primary doctor. We were only talking about my pacemaker. I thought I was fine, but suddenly my throat started closing up on me, and all the other things that go along with anxiety attacks including hyperventilating. The mind and body can be quite a pain in the neck. It seems. I had a third attack in the car when I was telling my cousin about what had happened. You sound like me I am laying down now and could go right back to sleep. I feel weak and everything hurts. I don’t have pain in my chest right now, but I have had a couple of events where it was like a horse kicked me in the chest. It actually hurt and made me yell out from it. Now that scared me. I never had that before. I have had it once since then not as hard. My vitals are fine I Cardiologist it add Metropolol at night for me half of the morning dose. He also cut my blood pressure med and half. Other than that I feel normal, but the lack of energy and body pain makes me just want to give up hopes of ever living normal again. I thought I had gone around that corner and was there and now this. Since July of this is the third time I have been hit like this it didn’t go away for a few weeks. I almost feel like I have a flu with just that overall awful feeling where are you? Just want to curl up on your bed that’s not how I want to live. My mind is ready to jump up and run.

I do possibly have a broken bone or two in my forearm or rest and have an appointment on 16 October. I had an earlier one but had to cancel. I am hoping it has something to do with this and when they do whatever they do for my arm, it will straighten everything else out. My dog stepped on my forearm when I was on the couch it sounds silly but he is 80 pounds and thinks he’s a Chihuahua. The doctor originally thought it was just a tendon issue. That’s why there’s been a delay.

[Snowyowl01]

Hi, I had P&A a 17 months ago and have been feeling great since, until 6 weeks ago started to have symptoms similar to you. I rang the pacing clinic and downloaded info from my monitor but they said everything seems fine with the pm. I saw Gp eho has ordered a number of blood tests and is referribg me back to pm clinic to get properly checked out, so will let you know the outcomes. x

[Nomis21 in reply to Snowyowl01]

Thanks for your reply snowy, hope you get sorted, let me know how you get on.

[Snowyowl01]

Will do