ICD inappropriate shocks! Can someone tell me how I post what’s happened to me just out of a week of being in hospital an awful experience!

[Lizob]

not sure where or how I write about my experience is it in this space? Grateful for any help as been through a nightmare and not ended yet!!!!

[Callista]

I have had various shocks. The last one was deemed « inappropriate » by my cardiologist but the DVLA ignored this and still imposed a 6 month ban. I am still struggling to get my licence reinstated.

The shocks are not so bad once you get used to them. It depends on their severity. I had one really bad one when I momentarily lost consciousness but others have been bearable. Once I was answering the phone and managed to go on talking, another time I was driving and continued until I could park up safely.

Readjusting your medication can help prevent them. Seek help with this. Also ask if your defibrillator has an internal alarm. They did not give me this information and I went round the house checking fridge, fire alarms, microwave before I realised it was coming from inside me!

[Lizob in reply to Callista]

thanks Callista for replying to me re my inappropriate ICD shocks! I’ve had a pretty miserable end to 22 and start of 23! All started 3,weeks ago my daughter and two young grandchildren came over for a few days before Christmas always testing for you know what and all clear as because of heart condition clinically extremely vulnerable and been hermits for nearly 3, years and if we venture out decent masks and tons of sanitizer and keep distance where possible! The day after they arrived they had awful coughs and temps alas too late to stop us catching it! I became quite poorly gp via phone put me on strong antibiotics and steroids but 9 days later terrible wheeze he actually saw me face to face !!!! Listened to my chest straight up to a&e and 7 hours in corridor had X-ray found I had pneumonia!? Had two rounds of a nebuliser sent home with more antibiotics and steroids and inhaler! On the way out of a&e my ICD shocked me 5 times in a row and rushed to resus and hooked up to beeping monitors! I’d had 14 inappropriate shocks 4,years ago just a year after getting the ICD due to a faulty wire!!!!! Had PTSD a long while after terrified any loud noise or flash of light was my ICD exploding in my chest again the pains were so excruciating ! Was tested for you knw what came back I had influenza A !!! Should have been isolated straight away but no rooms available until next day and up to an isolation room on cardiac ward! Hooked up to madly beeping monitor as heart gone into very irregular rhythm . Should have been sent to Belfast hospital that deals with ICDs but no beds or ambulances do kept in isolation pumped full of iv antibiotics and quadrupled my bisiprolol and had iv amiodorone for 48 hours! Hubby brought up my magic bedside box to send the ICD transmission up and yes they were inappropriate my heart was going fast probably because if the nebulisers but was not dangerous ventricular rhythm was in the atrial chambers and should not have fired!! Sent home Thursday after a week feeling terribly weak from pneumonia and erratic heart. I phoned the Belfast ICD clinic the day after got home and they were looking to see what to do with me!! Phone call this afternoon could I possibly come up to ICD clinic tomorrow but phone in morning to see if appointment there otherwise be a month until I can be seen!!!! Will definitely be going up with my hubby( the best ever!) but very anxious about hour and half journey especially as am so very weak can hardly walk but have a wheelchair thank goodness ! Spent the evening repacking my hospital bag just in case I’m kept in but need to know they can fix the ICD or take the blooming thing out and replace it with one that works!!! Fingers crossed it gets sorted and I can concentrate on recovering from pneumonia! Sorry for the long post just neede to vent a bit!

[HeartyJames in reply to Lizob]

Poor you. HUGS..

[jeanjeannie50]

Yes, it's in the space where you have typed on your post here.

You'll see a box saying More at the base of your post click on it and go down to Edit and add what you want to say. Or type it in answer to Callista's post.

[Lizob in reply to jeanjeannie50]

thanks jesnjesnie50 have just written a rather lengthy post to callista hope you can read it too if you want to read an essay, I’m afraid I was in need of getting a lot off my chest after having such a rubbish 3 weeks ending with a week in hospital . Staff were wonderful and did all they could for me but sooo short staffed and busy unbelievable 12 hour shifts they are exhausted and so hope they get their well deserved pay rise. They apologised that they couldn’t sit with me when I was having ptsd flashbacks but at least they could give me diazepam that took the edge off a bit! Hope I get some answers tomorrow if I make it to the ICD clinic!