I joined this yesterday after desperately searching for some support as my mum has been ill the last few weeks with COVID-19. Reading through your posts has given me some comfort & hope.
My mum was admitted to hospital in the UK on 11/04/2020, with what they initially thought was pneumonia in the right lung, confusion and low oxygen levels. She had a CT scan which was clear.
By 14/04/2020, she was transferred to ICU & attached to a ventilator, she tested positive for COVID-19 and had double pneumonia.
Week 2 she required the kidney dialysis machine which they have been unable to remove even after a couple of times of trying. She has also had some blood transfusions. Week 3 she developed a bacterial infection, VRE. She had a 7 day course of antibiotics and that has luckily cleared.
They have reduced sedation a few times and tried to wake her, she has not woken properly but they say she has started to interfere with the tubes etc, so they have re-sedated her a few times. They fitted a tracheostomy last week (Week 4) and things started to look like they were going in the right direction - she got down to 35% oxygen at one point and her Doctor seemed confident.
Luckily she has now tested negative for COVID-19, and Friday 8/5/2020 she was doing well and at 40% oxygen but on Saturday 9/5/2020 (start of Week 5), her oxygen shot back up to 100%, they started antibiotics/anti-fungals for an infection as they are unsure yet what the infection is, but they believe its VAP. I am so worried if it is an infection to the lungs as her lungs are already so damaged from the COVID-19.
She has been on the ventilator 28 days now (4 weeks today) her Doctor has stated that they are now ‘a bit’ worried about her situation as she isn’t showing any signs of improvement. She now at 80% oxygen. I’ve read here a lot of your relatives have already come off the ventilator but she isn’t even close to being taken off sedation or the ventilator after 4 weeks. The Doctor has said they will become more worried the longer it takes.
I am beyond scared. My mum is the closest person to me and my best friend. Someone here described it as a rollercoaster of emotions - I go from feeling somewhat positive at one point, to a wreck of panic and fear the next. I have a knot of sickness in my stomach most of the days that doesn’t go away. It also feels like one step forwards and two steps back, constantly. The waiting is agonising.
In Week 3, my grandmother (my mums mum) was also admitted to another hospital with sepsis (negative for COVID-19). Luckily although shes still in hospital, she seems to be doing okay.
I don’t know what to expect in writing this, I guess reading your messages made me feel less alone and wanting to also share whats happened to my family. Also wondering if anyone else has a loved one who’s been on the ventilator a long time.
I feel for you as am in pretty much the same boat.
My dad has been in for just over 5 weeks and we had exactly the same issue as you last week.
He was stable, reduced sedation on cpap mode and 50% oxygen and then shot up to 100% due to an infection. The doctor kept telling me they were very worried about him but then 3 days after antibiotics his oxygen requirement came down to 60%, they took him off sedation and put him back on cpap. That was last Tuesday and he was doing fab all week and awake but not very responsive but was due an MRI today however it got cancelled as his oxygen requirement went up from 45 to 60% and so they have had to put him on some sedation again and ventilate him fully which I was so sad about but they think he may have just got tired from cpap so I am hoping he just needs a little break and then we can try weaning again once he builds up strength. His lungs are very scarred and damaged so it's going to take time.
I have the knot in stomach, the switching between postive to then thinking the worst, it's absolute torture but our parents are fighting so we need to fight with them.
The Doctor mentioned to us yesterday that they would want to do an MRI but same as your dad mums oxygen requirement is too high. Do you know what infection your dad had? The Doctors were thinking mums got VAP but couldn’t grow enough bacterial cultures to identify what the infection was. Today is the 5th day mum has been on the antibiotics/anti-fungals so hoping that the oxygen requirement comes down. For some reason Monday it went down to 65% but went back up to 80% yesterday. The Doctor tells me not to hang on the numbers but I can’t help it.
Just hoping mum can stay strong enough to let her lungs recover, but you are right, need to keep trying to stay strong however hard it is. Xx
So some bugs grew on the blood culture so we know it was bacterial and they thought it was in his lines so they changed them all. They seem to change dad's antibiotics quite often from broad ones to more specific as they get more info around the infection.
How are her CRP markers, usually a good sense of whether her infection is coming down.
Also are they seeing any difference in her chest xrays?
I used to completely fixate on the oxygen requirement and still do to some extent but they always tell me its more about general trend rather than changes during the day.
Hmm, I will check, the Doctor hasn’t mentioned CRP markers to me but I will ask, I will also ask if they see much difference in the chest x-rays.
From what I have read is that they will start to try and wean her from the ventilator when shes at 40% of lower of oxygen. Although I suppose every case is different.
Shes been stable today and oxygen has gone down slightly to 75% but I guess that can change again. We video called to her today - I’m really hoping that just by chatting about the things she likes and mentioning key words will help. I know its a long shot.
Hi there. Is she being anticoagulated? With severe Covid patients, a lot of times if there is an initial recovery followed by a relapse (especially without clear signs of an infection) it can be because of propogation of thrombi -- small blood clots in the lungs that are worsening a person's respiratory condition. I can't say for sure if this is the case, but it is something to consider. Ask if they will do a CT of the lungs.
Also please ask if she is on a therapeutic dose of blood thinners -- this is the higher dose that severe Covid patients often require. As soon as my father got on anticoagulants, his condition began to improve.
Hmm I’m not sure, I haven’t answered the phone to the doctor today my brother has, so haven’t been able to ask these things. But I will. I think she has had CT scans but I will definitely ask about blood thinners & CRP markers tomorrow.
The doctor said that today she’s taken a few breaths by herself and thats been with the ventilator, not against it. So I guess thats good even though shes still on 70% oxygen.
My family endured me being intubated for 57 days - by the end I had a trachy which went on another couple of weeks after I woke from coma. I then went to CPAP & PEEP before being weaned - a rollercoaster is just how they described it - full of hope until a consultant would come along and suck all the optimism out of the room. I survived multiple issues ( it’s easier to read my profile) & despite being in lockdown - I lead a normal life now, I’m a father, husband & proud grandfather.
I have seen your profile and read a few of your replies on here. Your story provided me hope that if you can get through so many aspects of your illness then our families can do the same. Thankyou for replying.
Just wondering how long it took you to be weaned after the process started to get off ventilator?
My dad is day 43 on ventilator now and awake and no sedation . He started his weaning Sunday now he’s stable he requires little oxygen now and doing so much better after a plueral effusion . So many up and downs but since last Friday not required the kidney dialysis.
Last two days nurses says he aggravated and unsettled not sleeping much , almost wondering why he’s laying there hooked up to all these machines .
I am relying on my wife’s memory because I have no idea - but from the moment I was moved from intubation on to trachy then CPAP & PEEP took about a month
Thank you . Your story gives me so much hope , my dad is amazing me he’s obviously still not out the woods just yet but he’s superman to me getting this far xx
Hi there my wife (52) was admitted 18/3 and was intubated 23/3 so 51 days now. She has been on a rolacoaster ride too. She now has a tracheostomy and is beginning to recover SLOWLY. So there is HOPE.
Thankyou for your message. I was worried that 29 days (today) is too long and that there was little hope as I’d read that most people come off the intubation by three weeks, but it looks like with some COVID patients it can take a lot longer. I told my dad just about your wife and he said that it’s given him more hope.
Is she intubated on a ventilator? Or has been? My mum has the tracheostomy but is still on the ventilator. The hospital will call at 2pm today so we can FaceTime to her today, I’m hoping hearing our voices will help.
She spent 25 days on ventilator. They slowly weaned her off and she responded very well to that even though she wasn't fully awake by then. She's breathing on her own now but having a hard time with her muscles and stuff.
Hello, I’m so sorry to hear your story. My partner spent 32 days in an induced coma with COVID19 but miraculously he is improving every day and is conscious since Friday.
A few of your comments hit home and I remember his oxygen requirement shooting up on a number of occasions. Luckily the consultant called the radiologist and he performed an ultrasound and he had a pleural effusion. This is fluid between lung and chest wall. 3 litres were drained from his left lung and 1.5 l from the right. I don’t know how he was breathing at all.
I wonder is it worth checking with your doctor. Once the fluid was drained he improved over night. During another particularly bad week his O2 requirements kept jumping up and that was due to sepsis. That brought on a whole other week of ups and downs but could you request an ultrasound ? Hope this helps xx take care
Hi, it’s such good news to hear your partner is improving and thanks for your reply.
Actually the Doctor said they did an ultrasound yesterday and they can’t see any fluid or air around the lungs.
But I will ask about the sepsis. The Doctor said that theres no fluid around lungs, her blood pressure is okay (shes still on dialysis), her temperature is fine so really they can’t figure out why she shouldn’t be improving. I think they just need the oxygen requirement to go down.
But any ideas I can ask are very welcome. Yesterday I asked the Doctor that as her oxygen requirement has gone up, will they start to put her in the prone position again as that really helped last time her oxygen was so high. And the Doctor said that they are finding it doesn’t seem to make much difference after 14 days and it can be more difficult as she has a trachy, but she will consider it and talk to the medical team about it. So any ideas I can ask the Doctor to do can be really helpful!
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