Rollercoaster : Hi guys, I am new to this app so... - ICUsteps

ICUsteps
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Rollercoaster

Tillystar
Tillystar
28 Replies

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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Sepsur

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.

I hope your partner turns the corner soon.

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Tillystar
Tillystar
in reply to Sepsur

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.

Take care of yourself and I hope so too.

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Sepsur
Sepsur
in reply to Tillystar

As the patient, it was an alien experience- so I didn’t have anything to measure against what was ‘normal’ recovery.

There are a few links on this webpage - to do with critical care, physio & diet which might help you to move forward

icustepschester.org/informa...

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.

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Tillystar
Tillystar
in reply to Sepsur

I appreciate this. Thank you.

Yes there is just so much to take in

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Copse77
Copse77
in reply to Tillystar

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.

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Tillystar
Tillystar
in reply to Copse77

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)

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Copse77
Copse77
in reply to Tillystar

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.

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Tillystar
Tillystar
in reply to Copse77

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.

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Copse77
Copse77
in reply to Tillystar

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.

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Copse77
Copse77
in reply to Copse77
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Tillystar

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.

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Dabofoppo

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.

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Tillystar
Tillystar
in reply to Dabofoppo

Thank you. I will do.

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

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Tillystar

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.

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Sepsur
Sepsur
in reply to Tillystar

That’s sounds very promising

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Tillystar
Tillystar
in reply to Sepsur

Thank you. He is very annoyed he can’t have a glass of water. So annoyed with us which is understandable.

We took some small ice but he wasn’t impressed. Physio to call by Icu tomorrow

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Sepsur
Sepsur
in reply to Tillystar

You may find he is emotionally very up & down - I found it very difficult to control my emotions. I was easygoing one second & raging the next.

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Sepsur

I was dying to drink - for 2 weeks I was awake in ICU without being able to drink & dying of thirst every second of every day

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Tillystar
Tillystar
in reply to Sepsur

Gosh it must have been so awful for you and with the medication too. I just can’t imagine.

Stephen is still on lots of meds with sedation. I really feel for him. We feel helpless

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holibob

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.

xxx

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Tillystar
Tillystar
in reply to holibob

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

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holibob
holibob
in reply to Tillystar

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.

xx

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Tillystar
Tillystar
in reply to holibob

Thank you very much. I am also self employed. My friends and family are wonderful so I’m very lucky xxx

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holibob
holibob
in reply to Tillystar

Ahh that's really good. Keep strong. xx

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Copse77

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.

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Tillystar
Tillystar
in reply to Copse77

This is something I also feel so passionately about so well done for doing that and giving so much back to others in need.

Thank you

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Copse77

ics.ac.uk/ICS/ICS/patients-...

There is information for relatives and patients other family stories and guidance and links to support groups.

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Tillystar

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

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