ICU cognitive damage permanent?

[HorseMum]

HiIn August 2021 I suddenly developed septic shock. I was rushed straight to ICU. The next day I was heavily sedated and put on a ventilator.

I was in my coma for 3 weeks. In that time my family were called in twice as the doctor didn't expect me to make it. I suffered a type 2 heart attack (an MI not caused by cardiovascular disease) I had very scary dreams.

I was delirious when I was woken up. That lasted a couple of days. I was so weak I couldn't even pick up my phone for a few days.

I quickly developed a pulmonary abscess which has taken 18 months to resolve. Almost all of that time I have been on IV antibiotics (administered through a PICC line by the wonderful OPAT service)

18 months on from my brush with death, I still have cognitive impairment (can't work now due to poor concentration, limited attention) lung scarring (bronchiectasis), peripheral neuropathy, tremor, extreme fatigue and post ICU syndrome.

Has anyone else ended up with some of these symptoms, and improved after this length of time?

[Sepsur]

I’m sure everyone is different, so some will have confusion & forgetfulness which might fade in time and others will be significantly impaired for life, others may have permanent less obvious cognitive struggles.

I don’t know if all of my dysfunction has improved or have I just adapted and found ways around issues? I’m 7yrs after ICU & I do have some difficulties both physically, mentally & emotionally…….but then again…who doesn’t? 😊

[HorseMum in reply to Sepsur]

You think that everyone has cognitive impairment long term?

[Sepsur in reply to HorseMum]

not everyone and if they have it it is to varying degrees. You won’t know how you are affected long term until you are further down the line, all the affects of the disease, the drugs, the trauma experience takes months to overcome - only then will you see what you are left with. I now have to write to do lists - and I’m sure I’m not the first 😊 - my emotional equilibrium has returned and physically I’m in good shape.

[68mill in reply to Sepsur]

I am dealing with pain and stiffness and mood problems 13 years later still

[Sepsur in reply to 68mill]

there are some things we can do to improve neuropathy issues.

For restless legs I take magnesium

Vit d helps as does vitamin b

B vitamins are known for their ability to support healthy nervous system function. Vitamins B-1, B-6, and B-12 have been found to be especially beneficial for treating neuropathy. Vitamin B-1, also known as thiamine, helps to reduce pain and inflammation and vitamin B-6 preserves the covering on nerve endings. B-12 is also essential for proper neurological function and a B-12 deficiency can actually cause neuropathy. B vitamins can be supplemented or can be found in eggs, seafood, fortified cereals, vegetables, low-fat dairy products, and poultry.

[FamilyHistorian]

whilst we are all different what you describe is not uncommon. My coma lasted nearly 2 months and my family were also called in twice.

I had to learn to make adjustments often when talking to someone I make a note in case I forget what I was going to say. Emotionally I have no filter and my brain doesn’t control my mouth. My anxiety levels are much lower now. I know have pulmonary fibrosis, sleep apnoea and neuropathy in my legs. I found CBT helped me develop strategies for life.

[HorseMum in reply to FamilyHistorian]

Thanks for your reply. I'm maybe not working hard enough to develop coping strategies. I do now make task lists and write things down. I always use a satnav bc I get disorientated when I drive, (eg not recognising which exit to take at a roundabout on roads I've driven for years!)Perhaps I should accept that it might be permanent and channel my strength into finding more strategies...

[FamilyHistorian in reply to HorseMum]

because we are all different we have to work out what is best for us as an individual. Get over it is the worst advice.

My anxiety levels have substantially improved and now if I get into a state I breath and drop into my safe place. That doesn’t mean to say that I don’t get frustrated and angry.

I use my sat nav all the time even for places I know well. My sense of direction is no where like it was. When I first returned to driving I had to reverse my car off the drive. I have an automatic and couldn’t work out where reverse was - simples really

[Sepsur in reply to HorseMum]

adapting to the new ‘me’ takes compassion too - how would you talk to a friend in your position versus how do you speak to yourself 😊

[HorseMum in reply to Sepsur]

Ah yes. There's that 😂

[Tedsdad]

I am a little further down the path than you. I was expected not to survive or in a vegetative state of I did.I think what you need to ask yourself is whether you are ANY better than you were at your worst.I know as a composer that I really thought my imagination had just disappeared and certainly didn’t have the energy for work . I also knew that as a wind musician that the trashy scar was a permanent problem and the pain in the ribs when I breathed properly after the sternoctomy was simply unbearable. But I accepted it all and just changed direction. And in stopping worrying a out it very gradually things have improved. They have NOT gone back to normal but have reached a new normal. I can conduct again, which is as physically demanding as it is mentally demanding my imagination has returned and my ribs don’t ache as much as they did. The question is have you got ANY better. If you have I suppose you can get still better.

[Signingfun]

You have two things going on here. First the original coma with sedation and then the antibiotics for 18 months. That's sedation and iv antibiotics are major meds going through your body. I can relate. I was hospitalized with necrotizing pancreatitis (coma for 3 months and septic repeatedly). But my pancreas healed with complications. I ended up on iv antibiotics for a few months (not 18 months). I wasn't able to return to work either. For a while I was on antidepression meds to help stay positive and cope. I'm much better 11 years later. I can't say I'm back to normal. But I can say I am better. Over time I have adjusted my expectations. I found things I enjoy doing and try to enjoy life in the slow lane. I focus on what I can do. I've had times of mourning what I've lost, but I'm thankful to still be alive. It helps to stay positive. Any improvement is good, no matter how small.

There are no easy answers to serious health issues.

Anne

[HorseMum in reply to Signingfun]

Thanks for your reply. Pancreatitis sounds painful enough without necrotizing. I can't imagine the amount of pain you have suffered.I have been on an antidepressant for 20+ years for major depressive illness. I was depressed after ICU but gp increased dose and I feel OK now.

Guess I should be more grateful that I'm still alive. I have had *such* good care through our wonderful NHS (UK). The people who work there are just amazing. I've only really had one bad experience through all of this when admitted for septic shock again on New Year's Eve, when I spent 48 hours in a cupboard there before being transferred to a ward. It was like a war zone. No food or drink, even water, offered in this time.

The bronchiectasis will be progressive, shorten my life and continue to cause admissions for IV antibiotics.

But for now, I'm appreciating life more, meeting with my kids more and telling them and my husband more that I love them.

[SD1965]

My wife has several of those symptoms 15 months after her brush with death. She’s also stopped working, largely due to cognitive challenges and fatigue. She doesn’t have enough energy to work and have a reasonable quality of life. We are hoping that now she has stopped working (her last day was only last week) that she’ll be able to wean off pregabalin, as we know that can have negative implications on memory.

I feel for you. But rest assured that you are not alone.

[HorseMum in reply to SD1965]

Thank you for your reply. While I'm very sorry to hear about your wife's situation (and yours obviously) it is reassuring to hear that others still have these effects so long down the line. I guess 18 months isn't that long in the scheme of things and we may both still improve. Maybe to a new normal but better nonetheless

[Sturgeob57]

Yes. I had a colon bypass surgery that went very well. I remember that first day but after that I have a huge block of time I missed. I contracted C-Diff and became very septic. I was placed in 2 comas because of the pain, I'm told. I was intubated twice. I spent a month in the hospital, 3 weeks of that were in ICU. I suffered a loss of complete respiratory function and kidney function. I had very scary dreams, delusions, and what they called ICU Delirium. My wife was taken to the side by the Dr.s because they were sure I was going to pass. I suffered peripheral neuropathy, i now have stage 3 kidney failure and adhesions from all the tissue damage the infection caused. I had to have 3 subsequent surgeries to remove the adhesions. That was in 2016. I've suffered memory issues, memory loss, cognitive problems....... I still can visualize my delusions, hallucinations and horrible dreams like they were yesterday. That whole mess has impacted my life ever since and does to this day. Things can go wrong at any time. Be prepared every day because any day could be your last.

[HorseMum in reply to Sturgeob57]

Thanks for your reply. Indeed, carpe diem!

[Back_to_reality]

I think you have to remember that, like everyone, there are (at least) two aspects to your situation: the ICU experience and the underlying illness that put you there in the first place.

In my case it was encephilitis that put me there. They did fear brain damage and tried to reduce the sedation to see if I would respond. I did, fortunately but my experience of that partially sedated state was horrific. I got really bad flashbacks for months afterwards and still occasionally get them (one last night as it happens). I can manage them fine now though, but I do suffer greatly from insommnia nowadays.

From what you wrote it does seem that you have improved a lot over the last 18 months. You need to look at it as a positive. Gently pushing yourself is the way to go. Are you better than you were 6 months ago? If yes, then that's a good thing. It takes time to recover.

And yes, do appreciate life more. I have a tendancy to sink into the monotony of life sometimes, which is the worst thing to do.

[HorseMum in reply to Back_to_reality]

Thanks for your reply. I'm definitely better than I was 18 months ago, but seem to have reached a plateau in the last 6-9 months. I have mobility and pain problems which have not improved in the last year. If anything they are worse since 6 months post ICU, and my cognitive function seems at about the same level in the 6-9 months.But I still count myself lucky to have survived and if this is as good as it gets, I still have quality of life, and for that I'm grateful 😊

[downthemoor in reply to HorseMum]

Really interested to find this post . I've really hit the wall at 8 months and in the last few months every extra milestone has knocked me back .I crash quite dramatically and my psychologist has advised me about pacing and they say I need to follow an ME /CFS pacing programme. I recognise from this that the crash comes several days after overdoing things. And that building up gradually or pushing through doesn't work. I'm just finding it so hard as seem to be going backwards ...there's not a hope of me driving as my head is total mush and I can't manage the slightest incline when walking. Looking back at a few things I managed...a bit of gardening , some gentle walks, trip to the supermarket with my partner...I dont understand why I can't do them now. Would appreciate any positive comments!!

[Hummingbird44]

I am now 3 years + out from severe sepis and respiratory failure. I was put in a coma. DR. told my husband that my chances of making it were not very good. After 3 weeks in the coma I finally responded to commands enough to wake me. I was so weak that I couldn't even feed myself! I still have a cognitive deficit when compared to my "before" I like to explain it by saying that my brain just does not "fire" on all cylinders as quickly as it used to. I was a very organized person and somewhat of a "perfectionist", where as now I cannot seem to accomplish the same things I used to and definitely am a good bit slower at accomplishing things than I was before. I am no longer ger the organized person I was. I am more than thankful to still be here with my family but I do have "pity parties" and cry and feel sorry for myself at times. I just grieve the former me! I was told that doing word puzzles would help my cognitive skills to return. I will say that they did help a good bit more than I expected but not as much as I had hoped. Just keep trying to get better where you can but given yourself a lot of grace!

[HorseMum in reply to Hummingbird44]

Thanks for your reply. I also did/do word puzzles and sudoku to try to improve my cognitive function. I'm sure it made me sharper. As my doctor's baby was due I also restarted knitting and think that helped a lot to repair some synapses! Nevertheless, I find it hard to accept my new normal. Things haven't changed in the last 6-9 months and I'm acutely aware of my much slower mental processing, especially under pressure. I feel so stupid. And I was pretty sharp before. As you say, I think there is definitely an element of grief at the loss of one's former self.

But I'm still alive, with a loving family and good quality of life, even though it's not as good as it was.

[Misterpaulwood]

Eight weeks in a induced coma and same problems as you, including blood clots on both lungs and abseses.Five months on and my short term memory is pants!

I also had to learn to walk again due to nerve damage in my spine caused by the ketamin!

All I can say is I get that little bit better every day. Small wins in a long long battle...

I'm sure in time you will heal. We are all willing this and with God's grace we will both get there!

Have a great day.

Paul at the Steampacket Inn Knottingley......