My previously fit, active, healthy 59 year old husband was admitted to ICU on 4th of April with covid. After 17 weeks in hospital we welcomed him home yesterday. He was in ICU for 9 weeks (6 weeks on a ventilator), had a tracheostomy, took a month to wake up after sedation was stopped, had a major trachey bleed, was on dialysis for 7 weeks, had a feeding tube for 12 weeks. He’s had to learn to do everything again from swallowing to speaking to sitting, standing and walking. Yet he walked into our house with a frame - as he was determined not to be carried in by ambulance staff! He said the best thing yesterday was sitting on the sofa and tucking into his favourite meal. He has lost 22 kg, now weighs just 9 stone, so he was very grateful for the memory foam cushion I bought, as he’s all skin and bone! He’s lost so much muscle yet still can’t eat very much as he has not much appetite - but I’m hoping to build him up again! He’s now on Fortijuce diet supplements which provide an extra 900 calories per day. He’ll be followed up closely over coming weeks by the district nurse for blood-thinning injections, by community physio team and the community dieticians. We now have a hospital bed at home, on the ground floor, as he can’t manage all the stairs yet, and also because he needs an air mattress to avoid pressure sores. He unfortunately will end up losing his toes as a result of the meds used to support his blood pressure in ITU, but he seems not to care. He’s alive and he has a future. He’s so happy to be home, especially after not having been allowed visitors for the whole 4 months in hospital, due to covid restrictions.
Miracles do happen and people do beat Covid. Thank you to our amazing NHS for saving his life several times over and giving him back to us. 💙💙💙
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Malletus
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What good news and aren’t you lucky having all that community support.
I didn’t have Covid and had visitors but like your husband had to learn to swallow, talk walk etc. I also lost a tremendous amount of weight including muscle. Once home I continued to lose weight and it took about a month for it to return to what I was when I came out and now is climbing up again. So since mid March and now I have put on about a stone. It was explained to me that when you are fed by tube your stomach becomes smaller so part of recovery is regaining its size. It was strange that initially I was concerned about my weight loss but now I worry about my weight gain!
Other side effects from icu, for me, and apart from nightmares and hallucinations are a change in personality, my sense of humour is evil, I have lost my sense of appropriateness and what may be considered worse is I don’t care. I speak before I think and even if I think about it before hand I still continue with what I was going to say. My wife has to put with me picking up on something she says even if only a few words and creating a joke or song about it. She puts up with it because she is glad I am home.
I had no community support apart from OT. I am still battling to get an appointment with SaLT after 5 months. At the beginning of June, I found ICUstepschester, and although I don’t live in their geographic area and have joined their zoom support which gives 2 days of chair exercises, 2 days of chair yoga, a support meeting and a support meeting especially for relatives. I can now pour a kettle, safely, to make tea and I can get out of my chair without using my hands to lift me up.
I bruise terribly and in places I can’t explain.
I still haven’t regained my memory from before going into hospital let alone my stay in hospital.
What I would say to you is that it is really important that you look after yourself because you too have been through trauma whether you know it or not. Make sure you set aside time just for you. My wife has always been an early bird and so goes out for a walk for an hour before I get up.
Sounds like you are making great progress despite continuing challenges. I agree that ICU Steps are brilliant and reading this forum has helped me through many a dark night.
By the way, I think being outspoken is a wonderful character trait, so I hope you can embrace your newfound forthright approach!
Great news! I was covid too, but didn’t have quite the marathon your husband has had. Recovery is a long , slow process. Both myself anc my family have found it emotionally difficult. People on this forum will have been through what you are all going through, so please use it for any advice. Also there are support groups out there made up by people and their families who have been in ICU. For me personally this has been the most helpful engagement I’ve had in my recovery. I don’t know if you are in the UK?If you are and are interested in support groups feel free to direct message me and I can tell you more. if you are and are interested in support groups feel free to direct message me and I can tell you more. Very best wishes to you all, Pete x
That’s amazing news. Best wishes for his & your ongoing journey of recovery.
Once you have discharged from hospital - a new challenge appears. It becomes much more obvious the extent of one’s muscle loss, weakness, fatigue & (temporary) incapacity.
It took an enormous amount of time to regain anything like my strength & in fact 4yrs on I still have weaknesses.
The ICU team that pulled me through were amazing, I had fantastic physio support too. This carried on about 6 wks after discharge for a considerable time.
I met some other patients & relatives and we all felt ‘lost at sea’ - we started to met every 6wks, then every 4 and slowly we had a stable group. Eventually we joined ICUsteps as a meeting and became a charity in our own right ICUsteps Chester.
If you are interested ( or anyone else reading this post) we run 2 x weekly chair based exercise groups with a trainer on Mon, Fri, 2 x gentle yoga sessions with an instructor on Wed & Sat, a drop-in meeting on Thursday evening for anyone effected by ICU & Tuesday evening, a relatives only meeting.
Please message me for details - zoom enables us to gatecrash geographical barriers - surprisingly it all translates very effectively across a virtual platform too. There are a few people on this forum who have enjoyed & benefitted from our FREE services, myself included, free doesn’t necessarily mean second rate either - we are keenly aware of the unplanned nature of an ICU admission, finances are often stretched - we hope that if you benefit from what we provide, in the long run, you will help us fundraise in good time 😊
Thank you Sepsur. I am sure we will avail ourselves of quite a few offerings in terms of exercise and support groups. I don’t think Mal is even ready for chair based exercise atm as he needs all his energy for his prescribed physio exercises and is then wiped for the day. I have really benefited from the partners’ group and found it hugely comforting and informative in recent weeks.
I completely agree & understand - when Mal is ready & interested - it is there for both of you. For anyone who hasn’t experienced critical care, the level of fatigue you have is difficult to explain - it is all encompassing. Wishing you both well.
I'm absolutely delighted that you now have him home, I have been thinking about you both lots. You have him home and you can now take one day at a time, before you know it he will re regaining the kg's and be back in a normal bed .
It's fantastic he is getting lots of community support, we are finding it invaluable .
If you haven't yet applied for a blue badge , do so as hospital appointments are a bit of a challenge when they are so immobile .
Please try to get a bit of you time , the first 2 weeks until you get into a routine are tricky, but delightful .
wtg! I am so pleased for you and have read your story and posts many times . As of today my husband has been home 8 weeks , he had nearly 6 weeks in icu and 3and a half in a ward to teach him to stand , speak , swallow etc . Today is a milestone for us as he has just started to put on weight !!!
Wishing you both all the best for future and the recovery journey you will now do together ❤️
Oh wonderful to hear! I read your posts too especially in ICU. It’s been quite a journey has t it! So good to hear your hubby is doing well and starting to gain weight! That is indeed a milestone! Much to celebrate. 😘
My wife has been my rock since I was diagnosed 12 weeks ago. She has encouraged me to get out of bed on a morning and beat post covid. I appreciate its very hard to motivate yourself and not being able to conduct the simplest of tasks which is very frustrating at the beginning.
From not being able to walk, talk, muscle depletion and basic tasks- I can do all these tasks now, walk 2 mile a day, ride my bike, jogging around the garden and doing work remotely which 12 weeks ago I wouldn't have dreamed I would be in this position. I put it down to family love and support from my friends.
But please take it one day at a time as post covid DOES flatten you.
Wishing your husband a full recovery and dont forget Malletus, you have been through just as much trauma as your husband -stay strong together. x
Aw thank you 0608. Yes you just gotta hang in there, keep fighting, and as another member of this group said to me, remember that where there’s life, there’s hope.
Sounds like you are going through a tough time, and I certainly found lots of comfort on this forum and through ICU Steps. Big hugs xx
Congratulations on getting your husband back home. Your story encourages me. My husband has been in the hospital for 80 days , 70 days on Ventilator. He had a heart attack, and is finally after almost losing him considered stable. The problem now is that they stopped sedation and he hasn't woken? It's been two weeks and 3 times he has done small steps to show he is in there, but now it's been 3 days without a sign after doing a command with doctor? Can you tell me the details of what happened during your month of not waking up? I really need some encouragement!
I can understand what a terrible time you must be having and how troubling it is to be told your husband isn’t waking up but they don’t know why. I told that the drugs used to keep them asleep take a long time to clear from the patient’s body after being sedated for such a long time on a ventilator. The doctor also told us that because my husband’s kidneys had failed and he was on a filter (like dialysis), it was taking longer for the drugs to clear from his system. When he did begin to wake it was terribly slow. At first he started to have his eyes open didn’t seem to actually see anything or make eye contact with nurses. After a week he did manage to follow them with his eyes but wasn’t responding to commands. Eventually after a few weeks, one of the nurses thought he squeezed her hand. On FaceTimes with him (the nurses held up an iPad so he could see me) I saw his eyes were open but at first they didn’t focus on me. Then one day I was chatting to him and I was sure I saw a little movement of his mouth, not quite a smile, but something. The next time he did smile at me though! He was so weak but each day after that he seemed more alert when I chatted to him although he could only manage a few minutes of FaceTime.
It was a very long process of 2 steps forward 1 step back. Rollercoaster ride for us and very frightening each time the doctors thought he had an infection, or his temperature spiked, or he needed a blood transfusion. So much happened in ICU. But he got there.
So just hang in there and go day by day. I didn’t believe my hub would ever wake, as it did not look hopeful. But where there is life, there is hope.
Have you been able to talk to your husband on the phone? My hub said he remembers hearing my voice. You can also make a playlist of his favourite tracks and have the nurses play it to him on his phone through headphones? We did this. Just to remind him and keep him with us.
Actually on Tuesday I was FaceTiming with him and noticed he was blinking and moving his eyes! He followed doctors commands to stick out his tongue too! For the last two days he seems tired and is having a hard time with the ventilator now that he is waking. Did you ever feel that he wasn't responding to you? I talk, read and play music for him.
That is good news. It shows he is definitely “in there”. It’s great to hear that he is following commands. The staff will be testing him all the time to see what he can do, but it’s slow slow slow progress.
Yes my hub was very up and down when he started to come round. Extremely tired. Some days he just didn’t respond to me - I found it upsetting of course but the nurses explained that everything was a monumental effort for him. Even opening his eyes and initiating breaths on the ventilator. Many many days they said he was tired and told me he was just sleeping all day.
If his eyes are moving and he is blinking it sounds like progress.They find it hard to focus on anything in the beginning. Reading and talking to him is great!
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