Septic Shock, 2.5 months in ICU...update - ICUsteps

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Septic Shock, 2.5 months in ICU...update

Crazydoglady87 profile image
10 Replies

Hello everyone.

I posted a few months ago about my father who went into septic shock in November. He was on a vent for several weeks before having a trach placed. For a while, he was having a hard time weaning off the vent/trach and the hospital staff started preparing me for the possibility of my dad not making it. Aside from not being able to come off the vent, he had developed pneumonia and some other infections. He was extremely weak and they didn't think he'd be able to survive a new infection which as we all know, are extremely common in the ICU. By a miracle, less than a week adter that conversation, my dad woke up. He couldn't speak b/c of the trach but they allowed him to FaceTime me and he recognized me and asked me how I was doing and if I had eaten yet lol. Such a dad.

My dad has now been home for a little over 6 months and has little to no lasting health issues as a result of his hospitalization...or so the doctors say. We, the people who know him, notice that he's a lot slower. His movements...his thinking. He's a lot more quiet and less active. He seems more tired and even he finally admitted that he doesn't feel like he has a lot of energy.

I know he went through a lot but I do get frustrated at times b/c I feel like he has just accepted this new "I am a victim" mentality. I am sure it's more than this but we have all asked him several times what he's feeling or what he needs or what is wrong and he says he is fine and doesn't know why he seems different. If anyone has any suggestions on who he should see or what he could do to maybe try and get the old him back, I would greatly appreciate it. I honestly am at a loss and I can't relate to anything he has been through. In my eyes, I feel like he should feel invincible and capable of anything after coming back from what he went through, but he seems to think the complete opposite.

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Crazydoglady87 profile image
Crazydoglady87
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10 Replies
cowen2019 profile image
cowen2019

Hi, crazydoglady, I myself am a survivor of Septic shock and spent 3 weeks in a coma and over a month on ITU. It is easy for others to see the person as fine and even the person themselves say they are fine when they know they are not. Part of this is we don't want to admit to ourselves we are not fine and need to adjust to out new lives. Also, PTSD is a lot higher in those who suffer from Sepsis as well as Post Sepsis Syndrome. The comment you made 'b/c I feel like he has just accepted this new "I am a victim" mentality', I understand you don't mean it as heartless as it sounds but that hit me really hard when I read it. Like you said you have no idea of what her went through, the nightmares, hallucination, no control over your own life and being in a place of pure torture not knowing what is real and what is not and this is just part of it.

I am 2.5 years out of my coma and it still effects me today both physically and mentally and the only thing keeping me going is my partner. He often gets frustrated with me mainly when I say I am fine but he can see I am not or I try to hard to do something. Your dad is not even a year on after his experience and please give him time and a lot of it. Talk to him asking him about what he experienced and keep asking him even if he says he is fine and try talking to him about how you felt why he was there.

Also, when you said ' In my eyes, I feel like he should feel invincible and capable of anything after coming back from what he went through, but he seems to think the complete opposite', has caused me to feel a little energy. Like you said you have no idea what he went through and you cannot even imagine it. The fact he was also on his own was even worse due to Covid and made everything worse. Yes, your dad like many other of us has survived, but he may not feel like that. He may feel guilty like I do about what I put my partner through, or guilty I survived and someone else didn't and then the sever fatiguing you suffer onto makes everything even getting up from bed or making a cup of tea so hard.

I don't blame people for thinking we are fine or should then take on the world as we can do anything as they haven't ben through it. Your dad may not be getting the help he needs and you may need to wait for something to click in him and for him to realise his new life will be different and he needs to adapt to it.

The first thing I would do is speak to your GP to get him some mental health help regarding possible PTSD and PSS help which with me has been Cognitive Processing Therapy and medication. I also talk all the time with my partner about what happened in length (but I still keep things from him) and each time it chips a little of the pain away. We have sat there on the sofa talking about what happened to me and him as he also went through a lot for 4 hours straight and it helps a lot. Try looking on Facebook for groups who match what your dad went through. I am part of the 'I survived a coma' group and they have helped me so much as everyone on there has been through very similar experiences, so you are talking to those who have been through it and not those who have read about it or seen a film for example. That has been very important for me.

Does your dad fully understand what he went through? I needed to know every little detail of what happened, why and the treatment I received hence why I ordered a complete copy of my medical notes.

Apologies , if I have spoken a little harsh and caused any upset. My own family other than my mum and partner has said your fine move on and I even had to explain to my therapist how it really is rather than what his book tells him and he took the advice willingly. However, please see that this is coming from someone who has been there and went through a lot and similar things to your dad. I wish him well and hope he gets the help he needs.

Sepsur profile image
Sepsur

It took me around 9 months to start feeling anything like my old self, I was in ICU for 3 months with septic shock and everything that goes with that. The fatigue, at first, was very demoralising as was the weakness & lack of stamina.

My hospital ran a weekly out patient rehab gym class which I found invaluable. It improved my strength & stamina which made me feel more energised. I was also part of a support group which was looking at ways to make the best possible recovery from our illnesses.

We started to run a weekly exercise & movement session.

When the pandemic hit, we switched to zoom instead of face 2 face - now we run about 7 weekly sessions - why not take a look

cc-sn.org

You may find the relatives drop-in helpful.

What you cannot underestimate is the long term effects of critical illness. We hear a lot about long Covid but there is Post Intensive Care Syndrome & Post Sepsis Syndrome too - all of these are real and energy sapping.

Muscle waste, fatigue, cognitive dysfunction, neuropathy & myopathy are unpleasant bed fellows and extremely common for us.

FamilyHistorian profile image
FamilyHistorian

I couldn’t agree with Cowan & Sepsur more. I was pre-covid and it’s now 17 months on.

Men of a certain age are the protectors and defenders, they don’t show emotion - I was told by some to just get over it and that wasn’t for me.

The acceptance is that I am different, but that doesn’t mean I have given up. It takes time to adjust. Because of covid I didn’t have any after care. My GP tried to be helpful but she had no resources and her career I was only her second post icu patient. I got a lot of support from cc-ns. My first challenge was to regain some physical strength, that is on going and for me a slow process. Mentally: I had a course of CBT which helped me no end the counsellor needs to be someone he can trust. I’m not saying that I am ok but it has helped a lot. I’m not so tearful but I still get emotional. My wife understands a lot more and is more understanding. 2 of my daughters are happy to talk about it but the other 2 and my son avoid any conversation like the plague. One of my grandchildren (9) has taken it upon himself when we are out to keep an eye on me 😇.

Most importantly you need to take care of yourself

Rach2Sym profile image
Rach2Sym

Hi, Crazydoglady87

Because of Covid, I was in a coma and intubated for two weeks…I got off lightly! Whatever the reason you end up in ITU, it’s a dodgems of life threatening conditions – the body knew it and remembers it only too well, but the mind can’t recall it. It’s a miracle anyone gets out alive. Also, powerful drugs, whether medical or ‘recreational’, mess with the mind. At 73, I was very fit, and, a year later, am mostly recovered. But I’m aware of emotional changes, not least the age-appropriate realisation that though I just missed a call to the departure lounge I’ve moved further up the queue. My reactions to everyday events are different – some stronger than before, some less so, some things I really can’t be arsed with, and I get tearful more easily.

Obviously, talk and support are the heart of the matter for both patient and family. For me, it’s been essential to allow feelings to emerge in their own time without being provoked by questioning. Questions can too easily ‘feel’ like a trap, especially if the person being questioned doesn’t really know the answer, very especially if there isn’t an answer anyway. Your last sentence implies that you think he thinks the complete opposite to you – I’d guess that he’s picking that up from you and so is wary of opening up and certainly won’t want to risk arguing with you.

I have kept a recovery diary, starting with all the medical stuff my wife noted while I was in hospital, then continuing, noting anything that’s ruffling my feathers. It’s a personal diary, definitely not a record for anyone else to see, in which I allow any feelings to arise and simply be seen – without any judgement – a meditation-like process. I’ve done this sort of journal work at various periods in my life, so it comes easily to me. If your dad isn’t inclined to this sort of thing, I’d suggest that Person-Centred talking therapy (counselling) could be helpful – that’s a form of therapy that allows feelings to emerge without being suggested or directed. I think that allowing feelings to run their course, owning up to them, let alone sharing them, are complicated and scary processes. I don’t expect this to change or ‘cure’ my feelings, but it seems to help me.

Hi. ICU is a very traumatic experience and it can take a long time to recover from a prolonged stay in ICU. There can be an element of PTSD. So you need to understand that on the outside he may appear well and should be getting on with it, but inside there are probably haunting memories, and fatigue.

CLM68 profile image
CLM68

I was tired for a long time and felt as if I had no energy to do anything and that lasted a long time. Don't forget his brain was basically switched off and his body pumped with a cocktail of drugs, most of which have side effects with machines keeping him alive. Do not underestimate the toll that this can take physically and mentally.

It took me 9 months before I could even talk about what happened to me without crying, I had no feeling in my finger tips or toes as the drugs had killed the nerve endings which meant I didn't feel safe going out on my own as I kept on tripping.

Have you actually asked your Dad what he remembers about what happened to him? Have you tried to fill in the gaps for him? Does he know how grateful you are that he is back home?

Have you got hold of a copy of the ICU brochure that explains what to expect? If you haven't then you definitely need to get a copy from the ICU your Dad, ideally they should have given you one.

Has your Dad seen an ICU Counsellor yet, or had any help like that?

If I am honest then I think that you at the stage when you need to do your homework. If you really want to help your Dad, start by making an appointment to go and see your own GP to get their advice.

I'm sure the trauma of what he went through will have long lasting effects.. There may have been lack of oxygen to his brain from fighting infection and being ventilated. I understand brain injuries only too well having had meningitis a few years ago. It took 2 years for me to have any quality of life and I know my memory is affected and my brain is wired different now so it takes me longer to get my head round things. Also my Brother was in ICU on ventilator for 7 weeks and had tracheotomy but sadly he never made it through as he had catastrophic brain injuries from the whole process and infections.. So treasure every moment with your Dad and just let him know you support him at his own pace as he may be just traumatised, exhausted and well just different to the way he was before.

Del20 profile image
Del20

Hi, I wholeheartedly agree with everyone here. I also went through a very traumatic experience while being in an induced coma. The thing is that I felt like if I was in hell, if being delirious, hallucinating or having nightmares can be call hell. It’s an experience that I don’t wish on anyone. Yes, when I came back I felt like a different person. Imagine not even remembering that my son had been admitted to the hospital four days before me. It’s been a year and a half.

The memories are scary. Why, you may ask? Because I relive what I experienced in icu over and over again. Any strange noise or even a noise that sounds familiar to me triggers my memory where I become anxious and scare, ptsd it’s the cause. I also have brain fog, think of something or someone but in my mind I can’t bring up the word or the person’s name. Yes, I am not a victim but I’m the victim of a vicious virus that took over my body and my brain for over 2 months and this is something that I still feel everyday. I tell family and friends that I’m physically 90% well but mentally about 75%. It’s not easy to come back from another world, only us the survivors know what we went through.

When I couldn’t really understand what damage had been done to my body, to my brain, when I kept questioning why my son died and not me, when the guilt of being a survivor hit me I decided to look for help. Help in Covid survivor groups, in bereavement groups and yes I had to reach out to a psychologist and a psychiatrist. Nothing wrong with this. I needed someone who I knew would not be judgmental, I needed to talk to someone, a professional to help me understand my fears, my triggers. Someone independent who would listen to each and every word I had to say.

Please talk to your father, help him to open up and perhaps he will tell you how he’s feeling health wise . Sometimes we are afraid to tell our children how we are feeling, we really don’t want to worry them but sometimes it’s necessary for our own well being as well as their.

Receive my blessings and a hug from me, take care.

Play him music of his best liking, and go get you some CBD. He will Love it.

Sleepalotmore profile image
Sleepalotmore

Firstly, great that your dad is home and doing so well.Aa for how he feels, I know exactly what he means. I've been home 18 months now after a 3 month stay in hospital. 23 days on ECMO, ventilator & trachiotomy. My family were also told several times ' it's not looking good. Prepare for the worst'.

Like your dad, I pulled through.

I even now, always feel tired, I don't feel like the old me anymore but don't know why. I feel I wish there was a reset button on my back! I'd guess your dad feels frustrated and alone although not alone, if that makes sense!

I've heard of a lot of people o this site say the feel tired one in particular, felt this way six yrs on!!

All I can say, is please be patient with him. It's a horrible feeling. And makes you feel guilty for feeling sorry for yourself because I for one feel I should be full of the Joys of spring and just happy to be alive (which i am) but you just want to be yourself again. Whether that eventually happens I don't know.... I do hope so!!

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