Hi guys, I am new to this app so would appreciate any advice.
My partner came into hospital in October very fit with pain in his collarbone and chest. He has Polymyositis which is a rare auto immune disorder so has been on steroids to control this. They gave him antibiotics & everything worsened. A week later he was in Icu as he was struggling to breathe.
He was put into an Induced coma & worsened quickly. Proned three times on high oxygen.
Sepsis was mentioned as well as the infection they felt he had in his lungs. We were told we were likely to lose him as he was a mystery to them. This was for three weeks. They treated what they said was a fungal infection and took him off antibiotics completely for 5 days. He then got very poorly.
They suggested he may have acute luekemia but he would be too poorly to treat. Seven times they said he might die. They gave him 24hours on Tuesday but gave him a new antibiotic for the blood infection they found and he has been responding, mouthing well from his tracostomy, understanding us and initiating his own breaths with low sedation but they still say after two bone marrow tests they feel he may have leukemia and he will die after this treatment of antibiotic.
We had a small glimmer of hope back and I just don’t know what to think or feel.
I have been sleeping at the hospital and it’s so upsetting.
Please has anyone any advice?
Thank you.
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Tillystar
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I can’t offer advice but I can tell you that my family went on the same rollercoaster as you.
“No way will he survive, oh yes he’s responding well, oh no there is no chance.” I fought avine flu, double pneumonia, septic shock for 3 weeks ( in a coma) I then fought severe Ards for 3 weeks still in a coma. I was proned 3 times. On dialysis for 7 weeks, picked up CMV, EBV, VRE, MSSA & glandular fever along the way. They told my family that when it got bad enough they would send me to Wythenshawe for ECMO but when the time arrived, Wythenshawe wouldn’t take me because I wouldn’t have survived journey.
On numerous occasions my family were told to say their goodbyes.
The next episode was that I might survive but I would probably be brain damaged & that it was almost certain I had a type of leukaemia which would remain untreatable because my immune system would not survive treatment being so compromised. Ie the treatment would finish me off - again I was still in a coma. I woke up day 57, had my first drink on liquid day 70, my first meal day 75, left ICU day 90 and was discharged form hospital 30 days later.
I have ongoing treatment for leukaemia which is manageable at present, living a pretty normal family life interspersed with too many hospital appointments alas.
Thank you so much for your reply. I can’t believe this. I really feel for you going through all of that and your family but I am so pleased you are ok.
It seems so very similar to our story. They did say he may be brain damaged last week but we know he isn’t by the way he is responding to us.
Many thanks for taking the time to write this. It will really help us.
Critical illness is almost always ‘unplanned’ - if you are struggling with anything in your day to day life - Citizens advice is really helpful as are group’s like Carers association. We almost lost our house & everything - on a practical level, we needed financial assistance - apply for ESA (now) & PIP ( when you can). I remained on these for a few months & anyone who claims you get rich on benefits is deluded. It’s a hard grind but you come through it. Talking about finances at this time might feel glib but it’s another stress that my wife found challenging - not least because she could access my accounts etc etc - not intentional but I was the named account holder.
We had a similar rollercoaster experience when my previously fit younger brother became critically ill with sepsis and wee were told he would die. The best advice we were given by one kind consultant was remain hopeful. My brother suffered brain bleeds as a result of ECMO treatment and one consultant said there may be no recovery.he since went on to make a good recovery. Please remain hopeful and look after yourself. It’s a very difficult time for you. I hope you have family and friends that can help a bit. You are not on your own. Take care.
I’m so pleased your brother made a recovery. That’s wonderful news.
My partner also has this but now with a very high heart rate.
That’s nice that your consultant said that, one professional over all this time said that too but unfortunately a lot have been quite the opposite despite his improvements. It’s amazing how one beside manner can stay with you for days.
We are a positive, strong family but you are very easily brought down quickly.
We are by no means unaware of how very poorly he is but we hold onto our hope & faith and bring everything we have to him throughout the days.
I thank you for taking the time to write this. It means so much and it’s so nice to hear this positive story and from the user prior.
Take care of yourselves & thank you again.
(I’m sat reading this in the hospital as I sleep here and it’s made such a difference)
I understand and can empathise with how you feel. The Consultant who told us there may be no recovery brought us to our knees. He was wrong. You know your partner better than anyone. Please remain hopeful. We went through what you are going through now. Rollercoaster sums it up so well. We were advised to keep a daily timeline and it may help you to look back and see how far he has come when you have difficult days.
Thank you. Yes I have been on my knees and Tuesday was the worst by far when they gave us 24hrs but yes we know him more than they do and we have that hope that you mention. His strength is incredible. He is such a wonderful person in so many ways.
I’ve been playing him audios since day one I have made with my 3 year old. We talk around him and to him. He blew me a kiss last night and he knows we are here. I even have a small blanket with the perfume on he loves on me.
I thank you for the extra strength you have given with your words as there is no help for families on icu.
I’ve kept a private diary every day but this week I have struggled. I will update it now.
I am thinking of you. My brothers son was 6 when my brother became critically ill so I understand a bit what you are going through. There is an ICU Steps guide which might help you understand a bit what to expect. My brother was in an induced coma for a month and we did the same as you. Talking to him telling him what was happening. Playing his favourite music and football team matches. Don’t let those drs bring you down. If you have any questions you can private message me using the chat function.
Thank you so much. Yes such challenges to face. It’s the most uplifting thing I have done though downloading this app and writing a message to receive these responses. It’s really helped already so I thank you all for your help and hope.
I can't help or offer advice about what he is going through but one thing that I remember from my experience is : remember to look after yourself seek counselling if you need and remember your own needs. It's a hard time and it's completely understandable that you want to spend as much time as possible there but please try to look after yourself as well.
The hospital have provided us with a room after what they said Tuesday and I’m going home tomorrow for a short while for the first time. I will be seeking counselling afterwards too. I appreciate your advice
A little update today is that although Stephen’s heart rate is still high he is now sitting up telling us he is thirsty. Leaning across to try and kiss me. He has a tracheostomy in and oxygen is now much lower. He feels our hope and encouragement.
Hi, I'v just read all your posts and I am so glad that your partner is improving. I know exactly what you have been going through and it is like a nightmare. My husband is Sepsur and our stories are very similar.
I remember thinking I was in some kind of bad dream and couldn't actually believe what was going on, our reality had changed overnight. I really feel for you because the rollercoaster is unbelievable isn't it and you can't describe to anyone what it is like to be told your partner is going to die.( like you, not just once either) Our youngest daughter used to sing to him out of our bedroom window every night and it used to break my heart to think that he may not pull through.
I remember hanging onto every glimmer of hope and that's what you must do. Take every hour as it comes, make sure you look after yourself properly and take any help offered. Family and friends were so kind. Everyone kept telling me how strong I was being, but as you must know, you just have to be don't you, especially for the children.
I will be thinking of you all and hoping your partner keeps going from strength to strength.
Bless you for your reply. It gives me such hope. And it’s lovely to hear your positive yet agonising rollercoaster story. It’s wonderful how your husband pulled through against the odds. I didn’t expect any replies on here and I can’t begin to tell you how much it’s helped me. More than anything yet if I’m being honest.
There is no support so I came online at a very low point. So thank you both. xxx
I must admit, I got really close to the nursing staff and the physio's and they helped me if they could see I was struggling but there is no support really for families which is why this group was set up. It is the partner, or parent who has to keep everything going while our loved one is in a coma and/or recovering, which can take a long time. We were both self employed and our business had to close, so our financial situation was awful.
We were so lucky to have amazing support from family and friends and I hope it's the same for you. Even with all that though, you can still feel very alone, especially when they are unable to communicate.
If you'd like chat with me at anytime, you can get hold of me through ICUsteps Chester.
Yes he is really coming on now thank you. He has shocked everyone with his progress against the odds. I thank you all for your support. I hope to continue to support more families on icu too
I am so pleased your partner is making progress. Like Sepsur and his family we found the absence of advice and guidance very difficult. I am now working with the patients and relatives committee of the Intensive Care Society to try to improve access to information for other families in future. A link follows. Best wishes to your partner for his recovery.
Good morning guys, so Stephen’s heart rate is finally normal again. Apart from when he gets angry and confused!
He does not like the poor nurses at the moment. I won’t even say what he says about them.
Physio have been in and he has a terrible bed sore. It’s really bad so this also must be excruciating too.
It’s just a matter of as always, taking each day as it comes.
They are still saying the feel he may have leukemia and this could be the underlying problem. But the bone marrow was inconclusive. I’m still thinking the fungal infection, pneumonia along with the sepsis, septic shock floored him with his already weakened immune system. Well I am hoping so.
Again thank you all for the kind words and making me feel like there is some support. It took me to come online to find the lift I needed so badly. X
Your partner is making strong progress. I remember the physio was exhausting for my brother. Being lay flat in bed for weeks leads to muscle wastage one of the things that is discussed in the ICU steps guide. Also his body is trying to deal with the infections and nutritional support is needed to compliment all the other work by speech and language therapists. Glad things are improving.
The guide is fantastic. Yes he has a lot of strength considering he has been in icu for 6 weeks. Bless him he has previously worked so hard on his fitness and lifestyle so I think this may have helped.
They put a voice valve on his trac yesterday due to this even though the vent pressure wasn’t as low as they would have liked. It was wonderful for him. He managed to do 45 mins and hopefully twice a day but early days yet.
The nutritional support have been great to and have changed his diet to help with less sodium for his thirst.
So glad about his progress and hopefully he won't have leukemia. We now realise that Mile's leukemia probably contributed to him getting so poorly but we didn't know he had it at the time. Best wishes to you all. xx
Well it’s looking this way but I’m confused as the two bone marrow didn’t come back with a clear answer but this may have been in the background the same as Mile’s.
Haematology told us he needs to break the cycle in order to treat a few days back. They felt he was far too critical. I assured them I felt we could break the cycle so I hope he can xxx
I think because he kept getting infections and slipped back haematology couldn’t do any further tests/start any chemo as it’s too aggressive. They did two bone marrows on icu. Both with the same results. I’m not sure if more will come back from that in a few weeks.
They just said he is far too poorly & he feels it does look likes he has Leukemia.
ICU told us that if he improves from the fungal infection on his lungs (which they say is unlikely due to his auto immune disease)to a ward then he will need at least 3 months at home before they could start that and even a healthy person struggles.
We still have hope and we keep praying he shows the fight and determination he has already. x
Yes you do have hope and even though he's so poorly he sounds strong. That's what my husband was like and got through everything even though the odds were all stacked against him.
Hi guys, thank you for the inbox messages and replies. You are all a great support and I can’t thank you enough for lifting me when I felt so very low with nowhere to turn.
Stephen is really fighting hard. He was making jokes today and talking on the trac for an hour they are hoping to increase this each day with the cuff.
Slowly chipping away at the pressure. He is lifting his arms and legs too & sleeping in between. 7 weeks on ICU tomorrow.
No more lines in, stats are all finally his own! As you know this is major on icu as we can look forever be gazing at fake stats that the medication mimics.
We are all lip reading well when the cuff isn’t on and he is also writing now too.
We are taking each day as it comes as we are so aware of this rollercoaster but the strength he is showing after what was said to us 9 times is absolutely amazing in itself.
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First time experience of Loved one in ICU
Medically induced coma after cardiac arrest
Pancreatitis with Ventilator + Tracheostomy
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Update (Dad 10 weeks ventilated)
