hi everyone. I have no been out of ICU/ hospital, having had Covid, for 8 weeks. I had virtually zero support from formal health care and GP's. ICU steps has been great for me and I have also sought out other information. One document I came across was from NHS lancashire.
If you are recovering from Covid, I hope you find it as useful as I did. If you have been in ICU and recovering from something else, I think you will find it just as useful! best wishes, Peter
the link is:
Hi Peter
Best of luck and wish you speedy recovery
I have pm you and please try sepsis trust web they been great to me
It certainly seems to cover everything doesn’t it. 😀
Hi PeterJu
I’m sorry to hear you have felt unsupported following discharge. ICU Steps is great, I agree, it’s a fantastic resource. I hear they are doing Support groups by Zoom while we can’t actually meet in a room.
Can I ask whether you were ventilated, and also had a tracheostomy? Did you receive any rehab or physio in hospital and afterwards? Have you have any medical or psychology follow up appointments?
I wish you all the best.
Hoping you have got some support
Thanks. Whilst I’ve had virtually no support from formal proactive NHS, I’ve actually had really good support from other people working in the NHS. This is been really appreciated!
After nearly 9 weeks of being out of hospital I’ve had my first chat today with the consultant. The good news is my lung x-ray is clear and they seemed really supportive too
Cheers, Pete
Hi, that's so encouraging that your x ray was clear, can I ask were you ventilated . Also the consultant was supportive to you .
Hi. Yes I was ventilated. I was on one for nine days. And speaking to the consultant was really good however as I said to her it would be nice not to have nine weeks wait before I speak to them! I felt like I’ve been left to flounder with no clear guidance as to what to expect up until this point.
This gap in my expectations was filled by very kind people at ICU STEPS and other places
I am hoping they have learnt from your discharge, my husband is in rehab, we have been told we will have a covid discharge team when he comes home. I have been on the phone to our GP on a regular basis regarding the clinical care he is not receiving where he is , I don't know if that has been a factor . I agree 9 weeks is far too long .
I felt the same when l left hospital in 2018 after being in a 9/10 day induced coma not expected to survive. Intubated on a ventilator no trachy. Absolutely appalling support from hospital after leaving. My gp hadn't been informed sh was furious and rang the hospital to give them a very strong piece of her mind. She knew absolutely nothing about me having been in hospital in a coma and was extremely shocked to hear that from me. Furious with the hospital for their complete lack of aftercare, losing my medical/ file notes before put on system and months later still having heard nothing about outpatients appointments at the hospital l saw my gp who was as mentioned about. She was also furious because l was still very poorly, had no support and her not knowing anything at all about what had happened to me as she told me meant she could have prescribed me something that could have killed me or made me extremely poorly again and put me back in icu. My gp wanted me to stay put in her office whilst she called the hospital and let them know exactly what she thought of them, she wanted me to hear all she had to say to them.Thank god for Pals which l didn't find out about until a long time afterwards, and here the very helpful icu steps and healthunlocked with kept me sane.
To be fair, our hospital have been nothing short of amazing, it was my GP that was and is still the issue . The place where the care was lacking was a rehab centre which our GP has an association with .We are still waiting for some information to be sent through from the hospital, but I have to say have really looked after all ITU patients and put a wrap around plan in place for them.
Hopefully your hospital have put things in place to avoid situations like yours occurring again, I hope you are okay now .
I think time here is a factor. I came out mid April when the focus was just on saving lives. From what I have seen, NHS thinking appears to have moved onto recovery.
Also NHS provision will always vary based on the commitment ( or not) of your local GP and others.
The fact that you even have a covid discharge team is brilliant!
All the best. If I can be of any help re the lived experience ( in my 9 weeks of recovery) please feel free to contact me via chat function on this forum. I will do my best to support you both.
Hi Peter
your a warrior like the rest of the guys and girls who survived covid.
I was in a coma for 18 days in Warrington Hospital. The clinical staff, nurses, doctors, consultants, health care team, therapists and physios were AMAZING. They put their bodies on the line to save my life which I am forever grateful for this. I was discharged on the 8th May.
Like you I was discharged with very limited ability to walk and conduct general tasks.
I heard nothing in the first 10 days then unfortunate I got an infection in my right lung which was agony. 3000mg antibiotics per day ( yes 3000mg) they prescribed from my GP via my consultant.
I have suffered with frozen shoulders which is agony and unfortunately i cannot have physical physio due to the current situation.
I walk up to 2 miles everyday but the downside is, I seize up after an hour or so after returning home.
My hair has started to fall out as well, not sure if anyone else if having the same effect?
Asking an open question, how is your mind accepting what you have gone through? I cannot seem to accept that I had 2 near death experiences whist in hospital, critically ill and disabled? I was fit as a fiddle when I was diagnosed and only 48 years old.
I have been desperate to talk to people who have been in a similar situation to myself but couldn't find any forums etc, I felt so alone.
On a plus point, I am very positive and confident I will make a physical recovery hopefully sooner rather than later and hope all you guys/girls do who read my post.
Stay safe everyone and stay positive, we can beat this together
Bren
Hi Bren
Have you found any support yet? I’m not a Covid patient but still experienced all the effects of being sedated / ventilated for 6 to 8 weeks. I came out of hospital mid March with little or no support. In June I discovered ICUstepschester and since then have been attending their zoom exercises (sitting on a chair). They also run as support group and one for patients only. I have found this tremendously helpful both for my mental & physical state.
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