2 weeks post icd op - new symptoms?! - British Heart Fou...

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2 weeks post icd op - new symptoms?!

Efka profile image
Efka
14 Replies

Husband had an ICD implanted 6/2. As far as told uneventful and successful.

New breathlessness to the point of limiting walking. Never had breathlessness, came on after ICD operation.

Causing strange breathing patterns daytime when awake, and has significantly worsened nighttime central sleep apnoea (only had CSA for a few months and intermittently).

Have had some afib previously (shown by ecg) but without any symptoms.

Could this be afib post operation?

Lung(s) impacted?

Any help and ideas …and reassurances gratefully received. Many thanks!

Ps. Needless to say he’s an amazing albeit stubborn stoic man who doesn’t want fuss so not keen on going back to the doctors, hence here I am…

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Efka profile image
Efka
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14 Replies
Lowerfield_no_more profile image
Lowerfield_no_more

I suggest you talk it through with the BHF Heart Helpline nurse who will be able to give you a professional opinion and guidance as required.

bhf.org.uk/informationsuppo...

Efka profile image
Efka in reply toLowerfield_no_more

Thank you yes that is a great suggestion and a bit easier than getting hold of gp or hospital.

DWizza profile image
DWizza

Hi Efka, sorry to hear about your husbands plight . One thing I’ve learned from my Nstemi heart attack and quadruple bypass surgery in July last year is that you have to be pushy /make a fuss/on top of it /responsible for yourself call it what you want . If you sit back and wait you will not get timely attention for anything. NHS admin can be chaotic , waiting lists long. Can’t fault the treatment I’ve had but experiencing the lack of coordination , need to keep almost battling my GP surgery reception/online contact forms to get follow up appointments is disappointing. You really have to push in some circumstances. Please take up the challenge 👍🏻🤣.

Efka profile image
Efka in reply toDWizza

😂🙏 I do enjoy a challenge! And thank you so much for your encouragement, you are absolutely right!

As you I agree the people and treatment can’t be faulted …the policies and processes, well.

If there is no change in symptoms by Monday I will call the team at the hospital.

I hope your recovery is going well!

DWizza profile image
DWizza in reply toEfka

🤣🤣, love it “ challenge accepted” attitude 👍🏻❤️.

I’m doing fantastic thanks Efka , feel a bit of a fraud 🤦🏼.

Keep us posted on your husbands journey 👍🏻

get in touch with the team that implanted icd. It’s possible that the settings may need tweaking a bit but they are the ones you need to speak to. He should get a post check up after 6 weeks as well to check all is ok. I had icd then upgraded to crtd. X

Efka profile image
Efka in reply to

Ahh yes I did wonder, thank you.

It was all a bit “murky” on the day and of course I was not with him for most of it but for example believe it’s been set to pace if bpm drops under 50 - which historically it does regularly.

We were told a follow up would happen, no date just yet, but I’m sure it will.

I will give the hospital a call Monday to see.

I hope your upgrade was smooth and is working well for you 😊🙏

in reply toEfka

All ok for me tho I do have blips now snd then 🤣. I had icd in 2010 then crtd in 2018. I’ve had tweaks done to mine over the years as things change and sometimes the tweaks don’t like me snd they have to go back to how they were but I’m glad I have one. Hopefully your husband can get sorted whatever the reason for the breathlessness is xx

Efka profile image
Efka in reply to

Golly you’re a long-standing member of the “club”!

And thank you for sharing I must admit my ignorance and the fact I hadn’t even thought about the fact they, as the settings and software, might need tweaking along the way as if were.

Lots to read up on. Keep well 😊

in reply toEfka

At least speaking to the icd physiologists will put you both in the right direction. If it’s not the settings then I’m sure they will suggest alternative ideas. Wishing your husband the best x

The BHF helpline is good I believe and the cardio respiratory where he got his ICD fitted I've had a few queries with mine since I got it the main one being it alarms at 08:06 every morning which the first day scared the crap out me.Ps my wife says I'm very similar and you should kick his ass til he goes to the doctor

Efka profile image
Efka in reply to

Ha ha brilliant!! Well we do love our strong leading males …but yes I can feel my matron voice being needed …very Carry On.

And wow I can’t believe it alarms every day, If that happened I think I’d be the one with the cardiac arrest.

Thanks for the giggle and I really appreciate you for your support!

Gazania27 profile image
Gazania27

Hi Efka , I also have a husband with an ICD since 23rd December , he hasn't had any breathing problems or been breathless, he hasn't been over doing it has he , not lifting heavy objects or raising his arm above his head ? Like my husband I'm sure he is having many follow up appointments, inwould definitely mention this, there are risks attached to any procedure, I think problems with the lungs were mentioned , but that was a collapsed lung , he wouldn't be able to breath at all if it was that. Ask about it on your check ups . Sorry can't help more

Efka profile image
Efka in reply toGazania27

It’s lovely to hear thank you for sharing. We have actually been joking that the silver lining of his breathlessness is that he has done nothing! Normally he is definitely a “do” person and I did worry he would be climbing the walls.

The hospital has been great in the last couple of days with daily calls, alas not much further forward so another call today.

Their current theory is that he is pacing a lot (set to trigger at 50 bpm) and seems to be in constant afib since the procedure. Thinking is one or both of these might be the culprit.

They are now rushing a referral for a cardio version and we’ll have to see what else they can come up with today.

Really glad your husband had a successful implantation! Thanks again

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