Please don't give up hope : After 63 days from... - ICUsteps

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Please don't give up hope

Ferham
Ferham

After 63 days from admission, from HDU to 33 days on a ventilator in ITU, 7 days in recovery in ITU, then critical care, I am delighted to say my husband has been medically discharged from hospital. We like many of you have had the emotional roller coaster and on many occasions didn't think he would pull through . We have had oxygen levels ramped up, then levelled off, then back up again, temperature spikes galore, kidneys, liver, heart issues , sedation holds failing time after time, blood pressure rising, then dipping , blood clots.....

Once he left ITU on to the recovery ward, wow ICU delirium , nothing ever prepares you for this, I was naive enough to think, once he is off the ventilator he will be okay. It's so cruel,the nurses kept telling me it will pass, it was nearly 3 weeks. To see him in a trance like state , was horrific , we smiled for him, then sobbed when the video ended . It passed eventually and we now laugh at some of his ramblings, the nurses were so supportive an told me to write them down as we will look back and laugh at them. He is still confused and can't distinguish if the trip under the sea to New York was real or a dream :)

It really does feel like a miracle, he has had a heart attack , his mobility is extremely weak, cognitive skills also need lots of support , goodness knows what damage this virus has done to his lungs . We are now going to focus on the next phase of his recovery.

Last night he was transferred to a local rehab centre where they will focus on the horrendous muscle wastage he has suffered. It's heartbreaking to see 5 physio's helping your husband try to stand, my husband was a fit healthy man, his legs were solid muscle, they are just jelly . He is determined to regain his mobility, so that's half the battle . Please feel free to ask me questions, I will also update you of his progress. What a journey, but please don't give up hope. Finally we can't thank the NHS enough, I will be banging my saucepans tonight .x

54 Replies
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That is fantastic!!!!!!!!! It’s still a long haul - if you are interested - we are starting a zoom exercise group for early dischargees 😀 - please private message me an email address if interested & I will forward details.

In the interim - here is a link to some recorded ones

icustepschester.org/exercis...

So pleased that your husband made it home. Oddly enough I just came on to post an update to a thread I wrote 3m ago about my Dad. He ended up being in ICU for 7.5 weeks and we were told he would die. But now he's home and has made a full recovery. There is hope.

Ferham
Ferham in reply to zsmith76

He is a long way from home, he is in rehab as he can't walk, and his mobility is very weak.

Sepsur
Sepsur in reply to zsmith76

Brilliant

Congratulations! Very happy for you and your family! ⚘

That’s wonderful! My Dad spent 30 days in the hospital and has been in a rehab hospital for more than 2 weeks now. Progress has been slow because of fatigue (that’s getting better), and confusion / cognitive issues that come and go. Yesterday he was able to shave mostly by himself and could transfer from bed to chair with less help. But even small things are a big victory right now. Best wishes to your husband for a speedy recovery!

That's fantastic for you all! Here's to a good recovery.

He will remember those dreams, they are so real!

So wonderful!!!! 🙏 it’s now day 45 since my dad has been admitted to the ICU 30 days on the ventilator. He got a tracheotomy 2 days ago. We are able to FaceTime him at least once a day, however he is still very delirious not responding much but he opens he’s eyes a bit wider when he hears something or someone familiar (like his name being called or his children speaking to him) he’s still on dialysis as he can’t pass urine in his own. Can you please let me know if this all sounds familiar? How long did it take for your husband to start responding? Did he need a trach? Did he have a feeding tube in his stomach? Is he still on dialysis or does he pass urine? I’m so very sorry for the questions but I’m so desperate for answers and your husbands story sounds very much similar to my dads. 🙏

Hi Please don't apologise for asking questions , it took approximately 2 .5 weeks for the delirium to pass, he was like a scared rabbit in the headlights, it was so difficult for us. The nurses kept reassuring me it would pass , and it did.My husband wasn't on dialysis so your dad may take a bit longer . Yes he had a trach fitted and a feeding tube which he kept ripping out , so they fitted mittens to him, he ripped those off too ! The catheter was removed about 10 days ago he is learning again and retraining his bladder . Please let me know if I can help anymore x

Sarhj
Sarhj in reply to Ferham

Thank you so much for your respond it’s definitely very helpful. Its so good to know that there is hope 🙏

Ferham
Ferham in reply to Sarhj

Yes, stay positive, my husband came off the ventilator about a week after the trachy was fitted, The trachy is a good sign , please try not to worry about the delirium , my husband was dazed for weeks , then one day when we zoomed him , he called me by my nickname . Hold on in there x

Sarhj
Sarhj in reply to Ferham

🙏

I hope your husband is back home with you soon.

It’s pretty unbelievable how a virus can have some a devastating effect on the body , so hard physically and also mentally for them .

My dad is nowhere near your husbands progress , my am still proud of him for getting this far it’s pure determination.

Wishing you and your family all the luck in the world for the future x

How is dad doing? Xx

He’s getting there . He was struggling a little yesterday but he’d been out in the gardens and had done alot of physio. Nurse said she thinks it was more the weather being so warm and he was just exhausted. He’s now having time off ventilator during the day , so doing well and had the speaking valve this week it was just so lovely to hear his voice .

It’s definitely a long journey for them all , just grateful I still have my dad .

How’s your dad doing now ? Xx

So nice to hear this especially as you, me and a few others have had loved ones in around the same timeframes...

I hope he is energised again today x

Dad is ok, slow and steady but hasn't slept a wink for the last 4 nights and then falls asleep forna few hours in the morning which isn't ideal.

He had a fever spike and started antibiotics yday am so hoping any infection will clear and he can build strength up! Xx

Ferham
Ferham in reply to Mccarthy0702

Thank you, he will get there , all our families are reaching different goals at different times .xx

Fantastic news , and so pleased for you . I understand what you say about it being a long haul ! My husband spent 40 days in hospital , 38 days in icu . He left nearly 2 weeks ago in that time he’s just started teaspoons of yoghurt , custard , so obviously still has feeding tube . Is able to sip fluids so still has fluids , tries to get himself into chair , and back into bed , and still on a little oxygen as he gets out of breath trying to talk . But in his time in icu he had kidneys filtered a few times , liver problem , low blood pressure , clots , blown lung , 2 chest drains , heart infection , then a stroke . I’m so thankful everyday to the NHS staff that got him through icu and those that continue to work towards his recovery . I was allowed a social distance visit in the hospital garden this week and it was the first time I’d seen him since the ambulance took him over 7 weeks ago ! I pray for everyone that they get relatives on the next part of the journey however long it takes xx

Your husband has done amazing , just the list of problems he’s had makes you realise how hard he’s fought this horrid virus .

It is the long haul but so much easier ringing the hospital the further down the line you go knowing it’s likely more positive updates rather than the dreaded calls at the beginning.

Hope he’s home with you soon. X

Malletus
Malletus in reply to Pandysgirls

This is so good to hear. My husband had followed much the same path as yours and is about to be moved from icu to ward after 55 days.

Is your husband now home or on a ward or rehab centre? I’m wondering what will happen with mine as he is still too way to weak to come home.

Thanks so much and I’m thrilled to hear your positive news after all you’ve written here over recent weeks. Xx

Ferham
Ferham in reply to Pandysgirls

He has done amazing, he is over the worst of it, and the fact he can move into a chair and bed it wonderful, that visit is priceless isn't? I also pray we get all our relatives home, however long it takes xx

amazing news !!! wishing him a full recovery & sending love to you 💛

Ferham
Ferham in reply to mylko

Thank you x

What amazing news. Fantastic! so happy to read your post, I know what a long haul it is, my husband is desperately weak, now going to the ward after 55 days in Covid ICU, off ventilator and filter. I thank the NHS every day that he is still here.

The muscle weakness is frightening to see though and so frustrating for them. Although I want my husband home,

I’ve been freaking out about how we can possibly manage with his weakness and lack of mobility.

Nobody at our hospital in Wales has mentioned the possibility of rehab centre to me.

Could you tell me more? Is your husband in an NHS rehab place? What part of the country are you in? Who would I ask about this?

Thanks for your time, and my best wishes to you and your husband and although slow, may his recovery be steady and bring him closer to home every day. Xx

Ferham
Ferham in reply to Malletus

Hello, yes of course , It is a " NHS" rehab centre, it has been set up in the West Midlands . They are acutely aware our families need support that possibly isn't out there at the moment . The OT department at our hospital arranged it all . I have sent you a private message .

Thank you xx

Hey Ferham

Quick question, you mentioned damage to the lungs.

My dad is still being weaned from the ventilator as his lungs have apparently been very badly damaged and scarred.

Does your husband require anything fir the lungs since coming off the ventilator?

Is he still on oxygen?

Thank you xxx

Ferham
Ferham in reply to HopefulA

Hi, when he came off the ventilator, he moved onto a face mask, then the nasal oxygen. They slowly weaned the oxygen down from 4 litres to 1 very quickly once he became more alert. He is now not on anything, but due to the damage he has he is struggling and now has breathing exercises to do . xx

HopefulA
HopefulA in reply to Ferham

Thank you, it's helpful to know this to get an idea of what to expect.

The doctors at the beginning just kept telling me that dad's lungs are very damaged with a lot of scarring that's irreversible and so it'll be difficult but he is slowly slowly weaning off the ventilator. I do hope he will then be able to have enough capacity in his lungs to not require oxygen support🤞🏼

Ferham
Ferham in reply to HopefulA

Has your dad had any lung conditions prior to covid ? They haven't mentioned anything to me about his scarring - yet ! xx

HopefulA
HopefulA in reply to Ferham

No lung issues prior to this, that we knew about anyway!

Yep around 2 weeks after he was admitted they did a CT scan and said he had a lot of damage and high levels of scarring to the lungs but at that point they kept telling me to hold on to hope but also prepare for the worse and he has come such a long way from that.

I also keep remembering @sepsur saying that his lungs were really badly damaged but have improved and so hoping this happens for dad too xx

Ferham
Ferham in reply to HopefulA

My Liaison doctor, was an infectious specialist, he told me he had previously seen lungs that were horrifically damaged, years later they have ran marathons .He kept telling me they weren't giving up on my husband. Your dad is amazing and has come such a long way xx

HopefulA
HopefulA in reply to Ferham

Oh thank you, you sharing your experiences definitely gives me hope and yes dad has given it a great fight so far and I am sure he will continue to stay determined to get through this and come home to us xxx

Sepsur
Sepsur in reply to Ferham

I remember them well - yuk - all of it - suctions was the worst

I am honestly and truthfully so happy to read your story, and so happy your husband is recovering. It gives me hope. My boyfriend was put on a ventilator 45 days ago due to covid19, within 24hrs he was put on ecmo as he was going to die. He is only 30! He came off ecmo after being on it for 33 days, he had a tracheostomy done on Monday but it got blocked and had to be removed and replaced with an et tube again on Wednesday. The doctors will try and do a surgical one next week, he’s been on filtration for nearly 3 weeks now, he is on nitric oxide that he’s been weaned off slowly, and sedation is being slowly slowly reduced. He had infection after infection the known icu bugs and today they realised his wound in the neck for where the ecmo cannula was has been infected as it’s not healing. He is generally getting there and recovering well the doctors said which is so weird to hear (and amazing at the same time) after spending weeks and weeks hearing that he won’t make it, he’s not responding, the damage is too big. I can’t wait for us to be at the point you are at now. Being alive is the main thing, appreciate the second chance in life, everything else I believe can get better or they can learn to manage!

Can I just ask, is he receiving any psychological treatment ? And can you please describe how he was with the tracheostomy at first please?

Ferham
Ferham in reply to MarthaKos

Hello, my oh my what a journey you have been on , yes he is very young, but it shows you how brutal this disease is and how it doesn't discriminate . Are you in the UK ? He didn't really know much about the trachy as he suffered dreadfully with ICU delirium so had no idea he had one . By the time he was out of ITU the Trachy was out and the mask was on . Currently no psychological treatment has been offered, but it has been mentioned they are aware it needs to be included . I hope this helps, - please keep us updated with your partners condition. xxx

MarthaKos
MarthaKos in reply to Ferham

Yes we live in Manchester and he is at Wythenshawe hospital. This virus is nasty, he is young, fit, healthy no underlying conditions, has never smoked in his life, it goes to show.. he is certainly a fighter, he is a bit slow in his recovery (maybe because he used to be a bit lazy in real life 😊) , but he is getting there. I am a clinical psychologist myself and I have seen the massive impact of the virus in people who haven’t even needed treatment. I was hoping they would receive intense psychological treatment, especially due to the fact that families are not allowed to visit man be there for them. I haven’t asked yet as I like to take every day as it comes, and not planning ahead!

Ferham
Ferham in reply to MarthaKos

Ha I would also say my husband is lazy too, he was also slow in recovery, at one stage he was the longest patient in ITU. He is getting there, it doesn't mater how long it takes. He is also in a great hospital.

I agree the impact for him and us is massive, when I was meeting his consultant he told me they were looking at an holistic package for covid sufferers , he also confirmed they hadn't even thought about the families , we will see what's offered .

MarthaKos
MarthaKos in reply to Ferham

That’s great to hear. I would definitely push for it when we get there. I think it’s important to have it available since day one when they start waking up.

You make sure you take care of yourself as well. It took me at least 5 weeks being in a trance of only thinking about him, asking everyone and calling the hospital 5-6 times a day! I think I have read and researched any and every medical paper around ecmo, ventilation, icu etc. I think I will definitely ask him to pay for my medical degree when he wakes up, I feel like I’m half way there 😅 but I decided at some point that me losing my mind would definitely harm me long term and it will definitely not help him when he wakes up, I have been doing psychotherapy anyway for years due to my profession as well, and I try to just focus at work and spending time with friends and family. I still feel guilty when I laugh, and I still can’t go out as I feel guilty and that it’s unfair on him me enjoying the nice weather when he’s literally fighting for his life. It remains unknown the impact on them and the families, as we all had to go through it on our own, isolated from any available help.

HopefulA
HopefulA in reply to MarthaKos

Gosh he has really been through so much!

That said what a fighter he clearly is!

Slow and steady is good and I keep my fingers cross that he continues to take steps in the right direction x

MarthaKos
MarthaKos in reply to HopefulA

Thank you so much! Wish all the best for your dad as well, I have been reading your comments around here x

HopefulA
HopefulA in reply to MarthaKos

Thank you! Here if you ever want a chat x

MarthaKos
MarthaKos in reply to HopefulA

Likewise x

I’m soooooooo pleased for you all ❤️💪 it really helps seeing this type of post!!!!

Honestly chuffed for you and it really brings such a smile to my face!

Lots of love ❤️❤️

How’s your husband doing in rehab now ? Xx

Ferham
Ferham in reply to Mccarthy0702

He has had a better couple of days now we managed to get some pain medication for him , he has managed more sleep , eating better and actually walked with a frame, yesterday they tried stairs which he struggled with , particularly coming down them, as he said his balance was out . The physio's are amazing and delighted he is participating .

HopefulA
HopefulA in reply to Ferham

So so so pleased to hear this, he is such a superstar isn't he?

Love his determination xx

Ferham
Ferham in reply to HopefulA

He really is, his whole mood has changed too now he is improving his mobility . He went for a walk with his frame tonight unaided for 30 metres, last week he couldn't even stand . He is now back in bed exhausted . xx

HopefulA
HopefulA in reply to Ferham

Absolutely wonderful xx

Sepsur
Sepsur in reply to Ferham

Brilliant

Sepsur
Sepsur in reply to Ferham

Downhill is more difficult - not only do our muscles ‘dissolve’ in ICU, they also shorten, stepping down stretches the muscles

Ferham
Ferham in reply to Sepsur

Ahh that would explain why they have been massaging his muscles to stretch them . Thank you Sepsur

I found this article today, I found it really interesting.

healthunlocked.com/hughes-s...

Sepsur
Sepsur in reply to Ferham

It’s very scary - a virus that can jump onto proteins in the lung tissue & endocrine tissue are rare - and probably explains why it tears through the bodies of those worst affected from head to toe.

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