I wondered if there was anyone else who had or family member who has had severe pancreatitis. My partner went in 4 weeks ago today, and has been in ICU pretty much the whole time. He was put on a ventilator on the 23rd of December and had a it changed to the one in his neck a new days ago.
He’s very very poorly, we were told when he was put on the ventilator he could die from this. He’s been moved to a specialist hospital the other day whilst fully sedated. He’s on a dialysis machine too. We were told his lungs heart and kidneys were failing. He had a drain put in yesterday to get rid of some old blood. And they let him try to breath a little on his own too but put him back on the ventilators as it was very tiring for him. The drs seem to take it day by day and we have no idea really if he is/will get better yet. What the process is, as they just take everything day by day. I had our first baby together 2 weeks before I had to rush him into A&E and he’s not obviously not seen him since. It’s been a living nightmare.
Has anyone else been through this or has had a family member go through it? I feel lost and don’t know where to go for support.
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It’s important that he has gone to a specialist hospital to get the right support. There’s a pancreatitis charity with information leaflets you can download gutscharity.org.uk/advice-a.... Look after yourself and take all the support you can.
I was in the ICU here in Canada with severe, necrotizing, acute pancreatitis. I was in a coma for about five to seven weeks (I'd have to ask my husband who nursed me through everything and knows it from your side, more than I, of course). Then I took about a week to fully 'waken' from my coma (I was very 'out of it'). At one point during my coma, I was given an approximately 8% chance of ever waking up, let alone not need extensive physical rehabilitation. If you have any specific questions, please ask. Hugs to you all xox
Hi Thank you for the message. It’s good to hear from someone who has got through this as it sounds pretty similar as he has narcosis and we were told yesterday his recovery if he recovers, we are looking at months.
I’m not sure how to live a life through this time, how did your husband cope?
Did things take a long time before you started to make a turn in the hospital, as in made progress in the right direction? It feels like all we get is he’s the same but it feels like staying the same is the same as getting worse.
When you did eventually recover, did u feel like the same person, I’m so worried if hr does recover he might not be the same person . Seeing him before he was put the the coma was so distressing as he just didn’t seem the same person?
I know that’s a few questions and I really appreciate any words from your experience.
My husband was rushed into hospital in August 2020 with acute necrotising pancreatitis. He was in a coma for almost 3 weeks and then had a tracheostomy and was ventilated for almost 3 months. He had a lot of fluid to get rid of which took a long time and he also had specialist surgery at Kings. Unfortunately once on the ward, he caught covid which set his recovery back but he dealt with that well and went to a rehab centre and finally returned home after 5 and a half months.
It was an incredibly slow process and it must be so difficult for you with a small baby (I had a 3 year old and that was difficult enough!). Happy to try to answer any of your questions (feel free to message if you want). I am also part of a support group on Facebook which you might find helpful - Critical Care Support Network. They run lots of great sessions - I found (and still find) the relatives group meeting helpful on Tuesday evenings.
I hope your partner continues to move in the right direction. Make sure you are looking after yourself and the little one xx
He’s started the weaning process so has a trache mask on that they try to help him breath on his own. They don’t say too much else. They have changed the dialysis to not using it all the time he’s still on it but just not continuously. We hope this is the start to his recovery but he’s still not quite out of the woods.
They’ve stopped visits in the hospital a couple of weeks ago and as he is very delirious we haven’t been able to do FaceTime as the nurses have said it would be too distressing for him as he has been pulling at tubes and things so it’s awful not being able to see or hear from him. It’s been so long.
How did you mentally cope each day not knowing from one day to the next if he was going to come home?
How long was it before he started to turn a corner, we know my partners not quite at that stage yet. I just want to be able to talk to him or see him or him to be able to use his phone so we can have him back a little it’s just a living nightmare.
It's great news that he has started the weaning process. Sorry to hear about his delirium and lack of visiting and contact for you. Not being able to see or speak to them is horrible. Visiting stopped for me about 2 months in and then I had to rely on nurses to facilitate a video call with him before he was able to use his phone and also able to speak (once the tracheostomy had been removed).
My husband's journey was a rollercoaster ride. He kept managing to gather more fluid in his abdomen and they were constantly wondering whether he needed another drain or different antibiotics. I think this is why his weaning process took so long in the end. It always felt like 1 step forwards and 2 steps back.
For my husband, it felt like he turned a real corner just over 2 months in. He came off the ventilator and was able to move his arms (so could use a tablet or phone to keep occupied and contact me) and had also begun the process to walk again. Unfortunately he caught covid and that was a real scary set back which thankfully he overcame.
I had a 3 year old who kept me busy (I'm sure your little one is doing that job for you). I used to try to get out for a walk and some fresh air as much as possible. I used to contact the hospital in the morning and late afternoon and then try to switch off for the evening. I used to watch rubbish TV which didn't require any thinking but took my mind off things and took up some easy hobbies - making friendship bracelets, calligraphy etc which didn't require too much brain power. I also found that it helped to write a diary before bed to empty my head each day which helped me to sleep a bit better. Talking to other relatives of ICU patients was a huge help as well. There is a Critical Care Facebook group which is really supportive xx
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