ICU recovery nightmare

[downthemoor]

Was in ICU for 6 days following a seizure due to low sodium (92) due they think to stomach virus though still having investigations for Addisons. 2 ambulances, helicopter , CPR , a stroke originally suspected.

No ICU diary kept by hospital , no discharge help, no rehab , no advice on how I would feel. The ward was a nightmare ...no follow up once I was dumped there ...became dehydrated there resulting in A&E admission the day after I returned home with tachycardia and blood pressure problems. Further A&E admission 2 weeks later with the same .

Referred to cardiology , found bicuspid aortic valve but thought other symptoms just due to 'profound and severe event ' of the original admission.

5 months on I still have heart pounding if do anything . Am constantly told by GP I've overdone it ..but only able to walk for 10 mins at a time ...and no inclines. Very frustrated . Also sleep some nights non existent . Melatonin prescribed now but not much help. Also have Dreadful pain in back and neck that has been ignored by GP.

Without ICU steps I would have had no idea that I could be unwell for a year or more . I was SO active before , physically and mentally . I cannot believe how tired I am nor how much my cognitive skills have been affected . I struggle to remember words and my head is a mush.

After a lot of chasing and phone calls I now have an appointment for a follow up ..it will be 6 months . I've had to move mountains to get this but am hoping I finally get some help.

[FamilyHistorian]

the problem is that when you are “unwell” the system just drains you. Really your gp should be acting as your advocate. The quality of aftercare does vary across the country. I’ve heard of amazing support and then absolute c**p.

You mention the icu diary. I didn’t have one however I did apply for and get my hospital notes. There were reams and reams of them. When I was ready I started to read them they explained a lot.

[Sepsur]

I know that feeling of having been abandoned onto the wards and then abandoned on discharge - we were offered a follow up after 6weeks, which was great but in retrospect possibly too early because my head was still in the clouds. It takes a little time to realise how affected you are by ICU - so in a weird way - the delay for you might be advantageous in the end 💙