Hi. My dad has been in ICU for a few weeks due to covid. He has made progress in that his sedation was lowered to nothing and fentynal pain relief dropped to nothing too. He is at the stage where they were talking about trachey sprints to take him off the ventilator as he is spontaneously breathing ok on minimal support.
He is however on dialysis most days with the odd day off. But seems to be working. The issue is that he developed a stress ulcer about 2 weeks ago and has needed red blood cell transfusion of one unit per day on average. This has been needed since. They have checked using an endoscope and can not see localised bleeding but more spread bleeding in the stomach. As he is on anticoagulant medication, they don't want to lower this as clots form in his body elsewhere and dialysis machine. So he is bleeding/oozing at the stomach and they feel they have tried all they can. He's made so much progress with his lungs but this is something that's letting him down. I've asked if they can operate and bypass the bleeding section but they say it's not localised enough. I am at a loss what to do. There has to be something they can do. Please can someone help or suggest something? I am based in South Wales, UK
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My family fought for me & they were in a dire situation, none of my organs were working, I kept picking up infection after infection, proning wasn’t working, ntibiotics & antivirals weren’t hitting the mark, they feared hypoxia & severe brain damage & an impossible complication of untreatable leukaemia- & yet I pulled through. The consultant said when I asked him what were the mortality rates for someone like me, his reply was that there weren’t figures for people like me, I was an impossibility
I got an update just a moment ago. He's been stable and down to minimal ventilator support. He's spontaneously breathing with a little bit of pressure support. He's on 30% oxygen. They said that he's still on dialysis but looking to take off two bags of fluid. Does this maybe mean that the support the dialysis filter is giving is being reduced slightly? I understand that the machine uses several bags of fluid in order to draw out toxins from the blood via osmosis. So I assume less bags means the amount of toxin in the blood has reduced? I will clarify though
Glad it’s more positive, it certainly sounds it. I don’t know the ins and outs of dialysis ( so to speak) because my 7wks of dialysis were whilst I was unconscious
Thank you. No problem at all. I don't think he's woken up much though, since the Dexdor was reduced to zero around a week ago. I understand it sometimes takes take to get out of the body, especially when the kidneys aren't functioning
Today his oxygen percentage has remained at 40% and peep of 5 which they are happy with. His pressure support has been increased by a lot as CO2 is building up they have said.
I read and understand that as he has developed a temperature, it is most likely due to an infection. Samples have been sent and we are hopeful for a targeted antibiotic. Oxygen levels have been constant, it's just the CO2 that he has struggled to expel, so there's been an increase in vent pressure support to aid the exchange of gases per breath
What a difference time can do. He's making a lot of progress now. Sedation has been wearing off and he's done 2 full days straight on trachey mask with 28-35% oxygen. His GCS has reached 11 and he's able to sip water as well as follow commands etcHe's still on dialysis every other day and requires 1 unit of red blood cells as his haemoglobin levels are dropping. They thought it may be from the stomach ulcer he had a few weeks ago, but an endoscopy today shows the ulcers healing nicely. Not sure of their next step with this, but they seem happy to keep going as they are at the moment.
My thinking is that they may just keep going as they are. Hopefully the kidneys will start working and this will reduce the frequency of haemodialysis and the anticoagulant that goes with it... Which might start to clot up the bleed wherever it is
We are at 55 days in ICU and around 62 days in hospital for him
There is hope for everyone. Keep up the good thoughts, prayers and encouragement for your loved ones
sounds like your Dad and your family have been having an awful rollercoaster ride, one step forward, two back. A familiar story in ICU, but terrible when you are going through it.
If it helps, my husband spent 7 weeks in ICU with covid (ventilated) - we are also in South Wales - and he had to have regular blood transfusions, although they couldn’t find a definite bleed. They had to find a balance between the anticoagulant dose and the blood loss. My husband was also on dialysis and his blood frequently clotted in the machine. We were told that it’s not unusual for critically ill patients to need transfusions in ICU. They suspected a brain bleed but head CT was clear. They also suspected a bleeding stomach ulcer so they treated him with antacids throughout. In the end they thought that the anticoagulants could be causing a general seepage of blood. Have you spoken to the ICU consultant and/or gastroenterologist to find out next steps?
Thank you. Unfortunately we've spoken to all the consultants and doctors and they have a negative vision for him. It's so tough. They have spoken with another hospital and have been given a suggestion to try a few things but they don't think much will work. We're hanging on in there and pray for a miracle to help him
I know how desperate you feel right now. I hope very much that the doctors will understand that and that they will reassure you that they will do everything they can.
I understand they are doing all they can. I want them to persevere on. I know they are the experts but I feel that time could show some improvements. I am at a loss though, I just want to tell them to keep going and fight so they will
I'm so sorry you are going through this .Can you not meet with the doctors ? My husband was in hospital the same time as Malletus with covid. It's quite common to have bleeds and blood transfusions , my husband have to have several whilst he was in ITU, we never did get to the bottom of why he was bleeding . Which hospital is he in ? Many of the larger hospitals have a lot of knowledge due to the first wave, hopefully they have spoken to one of the hospitals that have a greater experience is treating the god dam awful virus .
Hi there. We have met with them and they are in all in agreement that they don't think he will recover. I don't want them to withdraw treatment. He's made progress in some areas and gone back in others. He is in the GUH Grange University Hospital as he transferred from the Royal Gwent
He was fully ventilated, given muscle paralyzing drugs and sedated and stuck in the prone position requiring a very high amount of ventilator support
After 6 weeks he is breathing spontaneously with peep floating around the 6 mark, with 40% oxygen. However he is on dialysis as his kidneys have stopped working, but they have given him dialysis holidays (a few hours to a day break). He has a bleed in the digestive tract which was originally a stress ulcer and was treated with adrenaline and he was on a coating drug to try to stop it being irritated
His red blood cell count was dropping day to day so requires 1 unit of blood a day to keep this up. They say the bleed is not a lot, but is an ooze
He is on anticoagulant drugs as his blood is prone to clotting. So they don't want to reduce this too much as it might make things worse elsewhere in the body (but it could help reduce the stomach bleed..)
They were at the stage where they wanted to try trachey sprint (where they take off the ventilator and provide suplimental oxygen at the trachey tube) for periods. They didn't bother as his blood pressure has dropped. But maybe given time he'll be stronger again to try it
He's currently on no sedation (Dexdor reduced to zero) and no (or occasionally little fentanyl/alfentanol) for pain relief. It's been 5 days and he is reacting to pain which is good. His eyes are slightly open and when we've spoke and played music, he's looked towards us, smiled a little etc. All signs of life
I was also told several times that my husband was “not going in the right direction”. Have the doctors clarified why they think your dad doesn’t have a chance of recovery? Are there underlying health issues to contend with? Your dad does sound like a fighter. What are they proposing?
Often I did feel that the doctors looking after my husband gave a very negative view while the ITU nurses seemed more upbeat.
They say he's been static for some time. But I have noted from the nurses of the little improvements here and there with his vent support. The fact he's spontaneously breathing is such a big step in my eyes
It's the fact they are saying, that he's needing blood pressure meds, dialysis, blood transfusions day in day out
He is a fighter and has rarely taken antibiotics through his life so far, so I am hopeful that it will better his body's chance of working with the meds they are giving
They have just said that they are keeping him alive and postponing the inevitable that he will not make it out alive
The fact that he is still with us, and has not made real deterioration is a bonus for me in my eyes. I know things go up and down, but he's no longer covid positive. So I'm feeling if they build his lungs up, it's just the bleed and the kidneys to look at. I do think they are covering themselves a bit by given the possible worst case scenario
Oh and they said he's been off sedation for 6 days and not awake. He is reacting to pain and moves his eyes and mouth a little. He reacted to be more alert when I played him his favourite music
It took my husband 3 weeks to wake up after all sedation was stopped. They kept telling me it didn’t look good. But his pupils were reacting and he responded to pain. It was a horribly long wait for him to regain conciousnesss and start reacting to stimuli and nobody could reassure me that he would make it. They just said they were keeping him alive and hoping he could fight through it.
My husband’s oxygen requirements went up and down, he was on BP meds for several weeks in ITU. Also dialysis on and off. He had multi organ failure. It’s a horrible horrible wait for the loved ones.
Keep talking to him, playing him music, get friends to record messages which you can play to him. Tell him he’s safe and you’re all there for him. My husband says he remembers hearing my voice.
It's such a horrible testing time for us all. I did notice my dad's pupils and eyes would kind of fill with more colour and the pupil darkened, kind of like he was more alert, each time we spoke with him. He would then sort of daze back out and look more tired and sleepy. We kept reassuring him he's being well looked after and safe, and that we are all with him. I think they need to give more time. I have dropped a pack of batteries for his music player just a little earlier and kindly asked if they could get it playing soon as possible
I got an update just a moment ago. He's been stable and down to minimal ventilator support. He's spontaneously breathing with a little bit of pressure support. He's on 30% oxygen. They said that he's still on dialysis but looking to take off two bags of fluid. Does this maybe mean that the support the dialysis filter is giving is being reduced slightly? I understand that the machine uses several bags of fluid in order to draw out toxins from the blood via osmosis. So I assume less bags means the amount of toxin in the blood has reduced? I will clarify though
What a difference time can do. He's making a lot of progress now. Sedation has been wearing off and he's done 2 full days straight on trachey mask with 28-35% oxygen. His GCS has reached 11 and he's able to sip water as well as follow commands etcHe's still on dialysis every other day and requires 1 unit of red blood cells as his haemoglobin levels are dropping. They thought it may be from the stomach ulcer he had a few weeks ago, but an endoscopy today shows the ulcers healing nicely. Not sure of their next step with this, but they seem happy to keep going as they are at the moment.
My thinking is that they may just keep going as they are. Hopefully the kidneys will start working and this will reduce the frequency of haemodialysis and the anticoagulant that goes with it... Which might start to clot up the bleed wherever it is
There is hope for everyone. Keep up the good thoughts, prayers and encouragement for your loved ones
My husband was on dialysis and had lots of blood transfusions too, as I said before. But they can turn a corner and it is so encouraging. I know it’s hard to be watching from the sidelines too.
It is difficult not being there. Thank you for sharing your experience and providing some insight to me as well.
My dad is still requiring a unit of red blood cells per day on average. They were hoping to find a source of bleeding so ran a CT scan of pelvis and abdomen, but no signs.
They then had an idea where they could reduce anticoagulation as long as there were no clots in the chest, in a hope that the blood loss would clot, wherever it is. Unfortunately there were some clots seen on the CT of the chest, so this idea has drawn a blank so to speak
He's awake and in high spirits though which is good
Ah the brand new Grange. They should have a good team there. I would just keep the conversation going and keep asking questions. Ferham is right that both our husbands had a lot of units of blood throughout their time in ITU.
That is of a reashurance to me that others have needed a lot of blood units. Just hope that if and when he becomes more alert, that they keep continuing his weaning from ventilation, and that the body can start to clot the blood oozing. They just can't give up
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