Are you able to share your COVID-19 survival story to help others?

[ICUsteps-Peter]

As survivors of critical illness ourselves, ICUsteps understand what it means to survive critical illness. We know how long it takes to recover, and we know that despite very different reasons for our critical illness, the experience of critical care and the severity of that illness leaves us facing universally common issues in our journey back to being a normal person again.

We’d like to hear from ICU patients who’ve survived COVID-19 who would be willing to use their experience to help us raise the awareness of the need for support and rehabilitation after we leave hospital.

The pandemic has increased public awareness of intensive care and together with the Faculty of Intensive Care Medicine, ICUsteps are trying to use this focus to get rehabilitation and support services included as a standard part of the patient journey nationally instead of being a patchy collection of services which are treated like an optional extra.

With all the resources going just to try and help COVID-19 sufferers win the fight for their lives, rehabilitation is even more scarce at the moment, making surviving the virus even harder. We can share our knowledge of survival and rehabilitation to raise this profile, but we need to add the voice of recent patients to make it clear that leaving the ICU isn’t the end of the journey to recovery, it’s the beginning.

Talking about this, particularly to interviewers, can be difficult but our Trustees include two of the country’s leading ICU follow up nurses with over 40 years’ experience between them to help support and safeguard any patient and relative volunteers who can help us.

If you are a COVID-19 survivor willing to use your experience help us to help other patients following on the journey you’ve taken, please get in touch with us through our website and let us know.

icusteps.org/contactus

Thank you for your support.

Peter

[Rgsable]

Hi Peter

My husband is still in icu now on the ventilator. I will do when he goes on rehabilitation. I am not sure if he is on rehabilitation due to the fact that he still require the ventilator. They are trying to wean him off that ventilator and he has a tracheostomy.

[ICUsteps-Peter Partner ICUsteps in reply to Rgsable]

Thank you so much for thinking of this, but the first priority is your husband's treatment and discharge home. The rehabilitation we're trying to see standardised is in the post-critical phase once a patient is out of ICU. The journey back to full recovery can take a year or more and going through it without support or understanding from people who know what you've been through can make a difficult journey harder than it has to be. Our thoughts are with you and your husband and I hope he's able to wean successfully from the ventilator very soon.

[Rgsable in reply to ICUsteps-Peter]

Thank you

[joanne68]

Hi Peter

I was admitted to hospital on the 15th of February but was ill beginning of February with double pneumonia . I was ventilated and in icu for 17 days and had a trachiostomy the experience was to say the least a scary and unusual one. I didn't know until June that it was infact covid 19 after having the anti body test.. i know I'm very lucky to be here. . The critical care team were second to none. They were amazing from what my partner tells me. I had proerbly infected so many around me not knowing. Yet my partner who was with me holding my hand and kissing me good night did not even catch it but my daughter did. Could it possibly be bloody type related. Strange.. food for thought. Apparently I get told by my doctors and other health officials that I was the first to be hospitised .im doing well after 9 months but no near where I should be. My thoughts are with every body who has had it or going through it right now.

[ICUsteps-Peter Partner ICUsteps in reply to joanne68]

Hi Joanne,

Thank you for sharing your story. Critical illness is a strange enough experience in normal times, but these days just adds another dimension. Recovery does take a long time, often a year or more, but having the chance to get better thanks to the efforts of the ICU staff is a debt we can never repay.

Stay safe and I hope your recovery continues smoothly.

Best wishes,

Peter

[Marcita]

Check my profile. Just update on my mom.

[Marcita in reply to Marcita]

healthunlocked.com/icusteps...

[irenium1]

I had been dating my person for 2 months (not counting 3 weeks of illness). We would spend every day together and had a Florida trip planned for Christmas. We both got COVID and started showing symptoms on November 13. Even though he was healthy, non drinker and non smoker he landed in the ICU on November 19. He was intubated for 9 days and in critical condition. He had developed Pneumonia. He woke up but does not remember me or even recognize my name. He woke up thinking he was still married to his ex-wife to whom he has been divorced for the last 10 years. He is slowly remembering some things including not being married but nothing about me or the time spent together. He is still in the hospital but not in the ICU. I was fortunate to not get that sick and my symptoms were completely different to his.

I was very blessed to meet him and to spend my days with him, he has been the most wonderful person in my life. And I am happy that he is alive recovering but cant help but wonder if he will ever remember the wonderful 2 months that we spent together.

[QMbunch]

peter. pls feel free to message me

[ICUsteps-Peter Partner ICUsteps in reply to QMbunch]

Thanks for your post. If you can get in touch through the website icusteps.org/contactus we can get in touch by email to discuss the details.

[Darcy200]

Hi Peter my husband is more than than willing to help he spent 17 days on a ventilator , been home for 3 weeks but the link isn’t working, are you still looking for people to share their experience with you

[Rhyl1 Partner Moderator ICUsteps in reply to Darcy200]

Yes ICUsteps are still looking for people to tell their stories. You can email me at [e-mail]. Thanks Christina

[Waggy72]

I would

[Mikesanuk]

Hi Peter

I was hospitalised at the beginning of March 2020, initially they thought it was a chest infection but soon became apparent it was bilateral pneumonia due to Covid. 2 days after admission I was moved to ITU, I was critically ill and they thought I would die. I had a Tracheostomy 3 weeks later for a further three weeks. During the time in my coma it was fairly touch and go. Heart issues, Kidney failure, Hypoxia etc. After overcoming these obstacles, I was weaned of sedation and gradually woke up. After 6 weeks in a coma I had lost 20% body muscle and could not walk. I was stepped down on to a rehab ward where I received excellent care from all involved. I had input Two or three times a day from both OT’s and Physio’s. And SALT. After two weeks of hard work I was back on my feet. I was discharged home with an excellent care package and continued to receive OT and Physio support at home. However, I soon hit a major depression and slumped even attempting suicide due to the pain I was in. This week marks 1 year since my admission to hospital. I still have no feeling in my left arm & leg due to nerve damage. The Covid left me with Fibrosis and Emphysema which has left me struggling to get my breath and can only walk about 20 metres before I am struggling to breathe. This in turn makes me so tired all the time and I am struggling with fatigue. My whole body still aches. I have been unable to return to work as yet. I still remain very depressed and totally fed up. I still sometimes wish they had just let me die by turning the ventilator off. I still receive excellent support from the hospital, my GP and from Psychiatric services. It has been a hard year and I am far from right, however, I have made significant improvements and hopefully the Long Covid will be managed and I can enjoy my life again although never quite as it was. The most important thing was the love and support from my partner- they never stopped loving an supporting me. It made all the difference and bought me back from some difficult dark times. The support from community services, OT, Physio has been superb. So never give up hope.

[Waggy72]

I was in ICU a month with covid n pneumonia I've joined a year long study with a hospital in Liverpool about the effect of PTSD IN COVID AFTER ICU the dr I had on icu sent it to me

[ironmen]

hi ive a survivors story 4u im with ICU steps chester and southport and story to Aintree Hosp but eager to give my history 2 help others

[ProfCarnage]

Are you still looking for stories?

[Freeman0121]

Hi Peter,

Happy to help. I’ve sent a message through the contact us portal with some more details.

I was pointed towards the ICU Steps by the outreach staff at the Freeman as they thought I might be able to offer some help.

JW