Still Suffering after my hospitalization

[ScabbleMe]

I was hospitalized almost 3 years ago with heart and liver failure. I was in a coma for 3 weeks and slowly became conscious with delirium. I had a very negative experience in the hospital because I was misdiagnosed following a false drug test that indicated positive for narcotics. I have never been an illegal drug user and later on it was determined that the false positive was because I had been on a blood sugar lowering medication that can return false methamphetamine test results. I was misdiagnosed with liver failure from a drug overdose based on the faulty test when what I was really suffering from was heart failure from a virus that subsequently caused liver failure. When I woke up delirious the medical staff wouldn’t listen to anything I said because of the drug test. I developed a terrible infection in my foot that caused me more pain than I have ever felt. I cried and screamed for hours and was told to shut up. Only after my husband helped me check out early was I able to find a doctor who diagnosed the infection and started treatment. I almost lost part of my foot because of the wrong diagnoses. Even though all of this happened 3 years ago I am still suffering, partly because I already suffered from chronic PTSD from childhood abuse and from Bipolar disorder. Many other indignities happened to me in the hospital and I can’t seem to shake the trauma from the experience. I am on medication and in therapy but I feel like no one really understands the ICU trauma I still suffer from. I’m looking for a support group where I can talk to others who have gone through this.

[FamilyHistorian]

Let me assure you, that whilst we are all different, many of us suffer in the same way. For some it takes lomger (much) than others to fully recover if ever that can be the case.

In the Uk there is a group, which has members from all round the world, which was set up to support patients (and their relatives) who have been in ICU. They also hve a private FB group.

Their website is cc-sn.org/ and meet regularly on zoom -UK times.

[ScabbleMe in reply to FamilyHistorian]

how do I get the Zoom address for this meeting. I’ve sent several inquiries and haven’t received a response.

[Sepsur]

funnily enough we were talking about stigmatised diagnoses in our drop-in last night. It really shouldn’t matter what has caused our illness, the medical staff shouldn’t judge. Liver disease is especially stigmatised because most believe it is either drug or alcohol related.

I’m am sorry to hear how you were treated which would have only made a really hard situation, harder.

I’ve included details of the British Liver Trust - these meetings are virtual so you’ll be able to join from anywhere. If you have no luck - you’d be welcome to join our virtual group too.

cc-sn.org

Liver trust details

[ScabbleMe in reply to Sepsur]

Thank you so much for the information. I have been having a really hard time finding a local support group and it's affecting my health.

[ScabbleMe in reply to Sepsur]

I sent a message to this group asking how to log in for a virtual drop in but I haven’t received a reply or info on how to join.

[Ta-thanx]

It must have been awful the delirium is bad enough on its own, so to have had treatment like this on top of that. I'm sure the staff would benefit from hearing from you in better circumstances and hopefully listen to people before making bad judgements.

I suppose that they have heard it many times from drug abusers that they have become hard towards them, but even so it's not the case with everyone and it can be traumatic enough without the extra tension.

I get asked regularly how much do you drink? Over and over, due to blood tests and liver function. To which I reply very little almost nothing, the last time I can remember having a drink was May 2020.

They found a tumour in my liver, and has been treated with (SABR) radiotherapy, things are looking good just need more time. They decided that I must have Non alcoholic fatty liver disease.

I sort of find it funny that they don't believe me when they ask how much do you drink, I still get asked.

Can't really help you I just hope things improve for you. It's been 12 years since I was in ICU and things are still going through my mind, but a lot less stressful now and I can just about make sense of the madness that went on in there.

[ScabbleMe in reply to Ta-thanx]

Thank you for your response. It helps to hear other people’s experiences. I am looking for a live support group on-line but I haven’t found anything yet.

[FamilyHistorian]

I will message you shortly

[ScabbleMe in reply to FamilyHistorian]

Than you I got theZoom meeting info but now I think I’m too late to join in. I’ll try Thursday next.

[FamilyHistorian]

ok that’s fine. We have just finished. You will be welcome next week