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Original poster

Stroke Experiences

199 replies

PurplePineapple1 · 12/01/2023 19:00

I'm blatantly posting this here for the traffic.

Husband had a triple heart bypass on Tuesday and suffered multiple strokes immediately after the operation. He has a Glasgow coma score of 12. I cannot seem to get any meaningful information from the hospital. He is mostly unresponsive. Has barely opened his eyes. Did have a good period yesterday of squeezing my hand on command and giving thumbs up. He is constantly holding his head and moaning. They suspect swelling in the brain.

What's going to happen? Why won't he wake up? I have to ring ITU 10 times a day just to get the most basic updates and I just want to know what is going to happen to him. Please help me :(

OP posts:
davegrohll · 12/01/2023 19:02

Oh op I'm sorry I can't give any advice but I just want to send you lots of positive thoughts. I'm sure someone knowledgable will be along shortly ❤️

Blondeissimo · 12/01/2023 19:07

Hi Op, I'm so sorry to hear about your husband. It must be terribly worrying for you.

I can't offer any advice other than to say ring the Stroke Association.

They are excellent and there to support family members as well as stroke survivors. They were amazing with me when I had a stroke and able to assist with finding out information for me, helping with chasing up medical appointments and helping my family. Please call them. www.stroke.org.uk

Duchess379 · 12/01/2023 19:13

Op, I'm sending big big hugs to you.
I went through a similarish experience back in 2017 with my mum. Difference in that she had her mini strokes first which culminated in her having a triple heart bypass. She was in ICU for a couple of weeks. Brain injuries differ, so Drs can't tell you any helpful updates because they're waiting to see if the swelling goes down & which cognitive functions are impaired. It's a horrible horrible waiting game but you need to sit tight & put your faith in the Drs. We were very lucky in that the hospital my mum went to is a teaching hospital & are a heart specialist in our area.
We're now 5 yrs down the line & my mum has mobility issues, we've had to install a stair lift, we've sold her car because she can no longer drive & I'm her full time carer. 💕

Original poster
PurplePineapple1 · 12/01/2023 19:35

Thank you.

I'll try the helpline number in the morning.

I just want to know are we waiting for him to die. That's how it feels and nobody will tell me. I don't know if he knows I'm there and if he does then I have to keep leaving him and I can't bear it!

OP posts:
SleepyRich · 12/01/2023 19:35

I don't need to tell you that he's suffered a massive medical event. His body will need time to adjust, for swelling to settle and some healing to occur. And on top of the stroke he's had a bypass to recover from as well. Full of lots of strong pain killers and medications to keep his blood pressure at the right level, his blood just thin enough to not cause another stroke but not too thing the surgical scars bleed.

The level of functionality he can regain likely just wont be possible to quantify or realise for some time and it's just a case for medical staff to support his body as best they can whilst this occurs.

With strokes and brain injuries often there is uncertainty about the level of recovery a patient will make, it's not that the staff are withholding, it's likely a case of wait and see. That he does wake up and is able to do things like thumbs up are good signs.

Original poster
PurplePineapple1 · 12/01/2023 19:39

Thank you SleepyRich that's really really helpful.

OP posts:
PoppyEyebright · 12/01/2023 19:43

I'm so sorry for you,OP, sending thoughts to you.

Do you know the name of the Consultant looking after your DH? If so, you can look them up and find the name of their PA/secretary and leave a message to call you to discuss his care.

I hope you have some answers soon 💐

strongallowed · 12/01/2023 19:55

ICU are generally good at having family contact / meetings - I would ask them to arrange one / at least a meeting with the consultant when you are visiting.

Nongatron · 12/01/2023 20:06

Hi OP I think @SleepyRich has given you some excellent advice. I was a nurse in a neurosurgery unit for many years and I would echo that people who have been through a lot of medical and or surgical trauma can have a lot of swelling affecting the brain and this affects levels of consciousness as well as many other functions of brain and body. It’s likely that the medics are waiting and watching as only time will tell. Plus your husband will be on a lot of medications to support his blood pressure, keep him sedated ,probably anti clotting drugs. Probably more medications. That’s a lot for him to cope with plus having had a triple bypass and subsequent strokes. The fact that he has responded eg giving thumbs up is a very good sign. It’s very hard for relatives but we often encouraged people to talk to their loved ones. A lot of patients were able to remember things that were said to them once they were more awake
sorry this is long hope it helps a bit
take care of yourself

Original poster
PurplePineapple1 · 12/01/2023 20:23

Thanks Nongatron that's also very very helpful. I've talked to him non stop. He tried to smile yesterday when he was half awake at something I'd said. Barely a lift of the corner of his mouth, but it was there.

Will he be aware that I've left him? I can't stand thinking about it! I could have stayed a bit longer on CITU tonight but they gave him morphine for the pain in his head and it zonked him out and I haven't slept in 2 days so I left 😢

OP posts:
Vallmo47 · 12/01/2023 20:36

I’m sorry you’re going through this OP. I can’t give you any answers so I’m so pleased a few poster have been able to reassure you a bit. My mum went through something similar - an aneurysm burst in her brain and she suffered many strokes on her way to receiving the correct care. The surgery itself took over 9 hours. You can imagine the shock and pain. When I was finally allowed to see her (I lived abroad), the only part of her body I could recognise as her was her hands. Everything was so swollen and … yeah. It was a long, rocky 10 weeks of hell, to be frank. I wanted to say that I understand your anguish in full, that dreadful feeling of guilt no matter what you do, and that tight feeling in your chest when you have to leave. You need to know that if he was capable of speaking to you he’d say he knows you love him and that you are doing as much as you can. Truly, while being in such a severe position, he will be in and out. You can’t live there, so you have to come and go. He would understand. He would want you to look after yourself.

I’m so sorry and I hope wholeheartedly that he makes as full of a recovery as he possibly can. It will take time and probably a huge amount of it. I wish you both the very very best, please keep us posted.

Original poster
PurplePineapple1 · 12/01/2023 20:49

Oh my goodness I'm in floods thank you honestly thank you

OP posts:
Nongatron · 12/01/2023 21:14

@PurplePineapple1 dear OP have you ever heard the phrase you can’t pour from an empty cup? You my dear must look after yourself as well as supporting and caring for your DH. Try and rest and trust that the staff caring for your husband will be doing so meticulously. I always felt it was an enormous privilege to look after seriously ill patients and to see people slowly but steadily recover was truly wonderful . I will say prayers for your husbands recovery and for you. I hope that’s ok. A very experienced neurosurgeon once said to me that he was constantly amazed by the ability of the brain to recover from trauma. Sending you the best vibes x

ShirleyValentin3 · 12/01/2023 22:33

So sorry to hear what you're going through. The anguish is so clear in your posts.

My dad had a huge stroke a few years ago. Th first few days were a blur to us all. He was barely conscious and it took a lot for his body to start to recover.

As pp have said, the doctors won't know the extent of the brain injury till his brain has had a chance to recover. Recovery involves rest. My dad slept for 23.5 hours a day, waking only to smile or occasionally nod. This lasted for almost a week.

He then started to come around and was conscious for more hours and began to stabilise. It was very stressful, but honestly, he will be being so closely looked after. I doubt he will know you're gone, as he will be mostly asleep.

Look after yourself op xx

Original poster
PurplePineapple1 · 13/01/2023 10:22

Thanks everyone.

There is no change today. I'm not allowed to even see him until visiting hours start at 2pm so I'm just sat in a hotel room.

OP posts:
Nongatron · 13/01/2023 10:41

@PurplePineapple1 that is very hard for you. I’m so sorry you’re going through this. Recovering from such trauma takes a long time and it can be so so tough waiting to see even just the tiniest hint of improvement. Please rest if you can eat something and look after yourself. You will need your strength to be able to continue to support your husband. Do you have a friend or family member who could be with you? Keep talking here we are here supporting you x

Someo · 13/01/2023 10:54

Sorry to hear about your DH OP.

Regarding stroke recovery it varies so much from person to person and depends on lots of factors.

My dad had a big stroke. Unfortunately it was in his sleep so we had no way of knowing when it occurred so this meant he was not able to have the clot busting drug that can reverse the effects.

He started off similar to your DH. Unresponsive and brain swelling was the cause. Over the next few days this went down and he did regain consciousness though was unable to walk or talk.

Fast forward a couple of years he lives in his own house with carers coming in. He has limited speech and mobility but can do some things. He often goes to football matches etc.

I hope there's some improvement for your DH soon. Please don't feel guilty. As a PP said you can't pour from an empty cup! it is an incredibly difficult time. 💐

Timeforabiscuit · 13/01/2023 11:07

Slightly different as dh had brain surgery for removal of a tumour, but you describing the waiting and hoping has brought it all back.

In our case, DH had no real recollection of the first couple of days out of surgery, but he also found visitors extremely tiring, so please don't worry about taking time for yourself, eat properly (avoid the Costa cakes), drink water, get fresh air and open space if possible. You'll need your reserves for when he is out of hospital.

It sounds cavalier, but you worrying about the what ifs won't change things, so try and put your energies and mental effort into things that will - it is so hard. I found talking to other relatives in the queue by the door hugely helpful, as they are walking similar paths.

Also asking reception during a lull (generally halfway through visiting hours on surgical unit), what are the best numbers to call and who to ask for, particularly in the early days is really helpful, I had a list of about 10 to start with, most of them only staffed at certain hours for specific reasons.

Original poster
PurplePineapple1 · 13/01/2023 11:12

Thanks Nongatron. I have my daughter with me but she needs to go home today for work tomorrow. I am better on my own really, I'm feeling pushed and pulled by other people wanting updates every 10 minutes.

OP posts:
Nongatron · 13/01/2023 14:01

@PurplePineapple1 I used to suggest to relatives that they choose one other family member who they would update.

That designated person can then let all the other people know. That way you will be less exhausted and pulled in multiple directions.

Plus you are able to give out information you feel ok to give to others. Sending you continued strength.

Please keep talking if it helps we are here to listen and support you x

Sending you strength x

faw2009 · 13/01/2023 14:46

Sorry that you're going through this.
My dad had 2 major strokes and a range of mini ones.

It's a very long road to recovery and I agree with other pp, a lot of rest is needed - including for yourself.

Timeforabiscuit · 13/01/2023 17:05

The messaging is hugely draining, do you have a close relative who can take this on for you? Or failing that a group WhatsApp where you can update all at once?

Family can be very demanding when they are worried too, hopefully they have enough self restraint to not put upon you.

Original poster
PurplePineapple1 · 13/01/2023 20:52

As per suggestions I've asked one person to take over messaging and updating everyone else.

There was very little change today. I've been told to "mentally prepare". That he needs to get through this weekend. I just want to be with him. It's the only time my stomach isn't churning.

OP posts:
EmmaEmerald · 13/01/2023 20:57

Oh Purple

Will they allow you more time with him this weekend?

Original poster
PurplePineapple1 · 13/01/2023 21:04

No. They're so strict with visiting. I understand it but I hate it. Everytime I leave I think of him trapped there wondering why I'm leaving him and it's torturous.

OP posts: