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Asking for a handhold - DH in ICU

988 replies

peachgreen · 04/09/2020 10:56

DH was taken into hospital last night with breathing difficulties. It was pretty minor, the paramedics weren't even going to take him in but we insisted. He's now in an induced coma on a ventilator. He's had 2 negative Covid tests so they don't think it's that but they don't know what it is.

I'm falling apart. He's my whole life. We have a 2 year old who is a complete Daddy's girl. I need him so much. I can't even be with him now because of COVID.

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peachgreen · 14/09/2020 20:21

He's feeling really down tonight too and a bit unwell. This is so hard.

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Gladgreengrass · 14/09/2020 20:37

When my relative was in hospital, the lack of communication was the worst thing. I suspect Covid-19 etc won't have helped with this. I know it is hard to do op - especially with a two-year-old but try and rest while your DH is in hospital as you will need your energy when he comes home Flowers

AlternativePerspective · 14/09/2020 20:38

Sorry to hear you’re not getting any answers yet.

Can I ask whereabouts in the country you are? Does your hospital have a dedicated cardiology department? If so you should be able to speak to a member of the heart failure team at least.

WRT staying in for longer, while it doesn’t seem like it right now it might actually be a good thing, because it might give the chance to do all the things they want to without him having to go on to several waiting lists.

While my entrance to hospital last year was extremely traumatic, they acted to get all my procedures (mitraclip, ICD, all the scans) done while I was in there, and I didn’t get discharged until all that had been done. And while it meant I spent six weeks in hospital, it also meant that when I came out I didn’t have to then go on to waiting lists for all those procedures, and come out feeling as crap as when I went in and not knowing when that would change.

Temperatures can also be normal. The first time I was in hospital we used to joke about the fact the nurse would come round in the evening and say “paracetamol tonight?” Grin and last year they did the same and I’d say “yes, I have chest pain.... erm I mean pain in my chest from the compressions.”

They may not even tell you exactly when he will have the MRI if he’s going to have it while he’s still in there. I didn’t know until the morning that I was going to have one, but the consultant who did it was lovely, and actually took me back to the ward himself.

forgetthehousework · 14/09/2020 20:49

Sorry to hear you're down, although I understand why. I am continuing to remember you all in my prayers.

peachgreen · 14/09/2020 22:11

@alternativeperspective We're in Northern Ireland. They do have a cardiology department and I phoned tonight and asked them to arrange for us to see someone tomorrow though I think it will just be a junior doctor. But that's fine. I'm going to write down my most pressing questions. I totally see what you mean about him staying longer and I agree, it's better he has everything he needs done now especially if he needs an ICD. But I think I just need someone to say "we fully expect him to leave hospital and come home" because at the moment I'm so frightened that won't happen.

Thank you @forgetthehousework and @Gladgreengrass. I really appreciate your kindness. This is one of the hardest nights so far so thank you.

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akerman · 15/09/2020 01:31

Sending love peach. There will be ups and downs. Just keep on holding on. And there’s always someone here.

Marmunia1975 · 15/09/2020 09:38

Peach, I'm in Northern Ireland too. What hospital is he in?

spiderlight · 15/09/2020 09:42

I hope you get to talk to someone useful today

peachgreen · 15/09/2020 09:58

@Marmunia1975 He's in the Ulster. I'm really happy with the care and totally appreciate that the communication difficulties and delays have mostly been due to COVID so I'm definitely not complaining. Just want to have some idea of what they're hoping for in terms of his progress. We've only had 7 years together and I'm hoping for a lot more.

He slept well last night and showered this morning without feeling breathless which is really great. I'm trying so hard to focus on the positives. Much easier in the daytime!

Thank you @spiderlight.

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petalpower · 15/09/2020 10:17

Hope today is good for you both and that you are able to speak to a member of staff. How is your daughter? Did the antibiotics sort out her UTI?

peachgreen · 15/09/2020 10:25

They did thank you @petalpower although obviously she'll still be taking them for a few days. Her bum has healed well too so nappy changes are back to being a pain rather than almost impossible (she still hates them!) and she's back at nursery which gives me a break three days a week. She has started having night terrors but I think that's to be expected really and she's fine after an hour or so of cuddling on the sofa which is no hardship!

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Marmunia1975 · 15/09/2020 10:26

That's good Peach - If you'd said Antrim, I could have helped as my dad spent so much time there over the last 20 years - he died in Antrim one year ago, and one of our friends is a consultant there. I hope things begin to look up for you. Thinking of you xx

peachgreen · 15/09/2020 11:44

That's really kind of you @marmunia1975. I really appreciate all your kind thoughts and help

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peachgreen · 15/09/2020 13:40

His ejection fraction is only 20%. Fuck.

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AlternativePerspective · 15/09/2020 15:01

Ok, this sounds bad on the face of it. But bear in mind that he’s at the beginning stages of this diagnosis. Chances are this has been ongoing for a while and it’s only when things got bad that he found out. But now that his condition is known they can give him medication and treatment to bring things back to where they should be.

EF isn’t the be all and end all. There are some people with a low EF who live perfectly normal lives and people with a higher one who struggle. But with medication and treatment it’s perfectly possible to bring his EF back up to a normal or near normal level.

Please do consider joining the cardiomyopathy U.K. group on FB. There are a lot of people who have been where your DH currently is, some with even lower EF than that at one point, and who regularly come on to celebrate that at their last echo their EF has gone up to a more normal (if you can call it that) level.

petalpower · 15/09/2020 15:25

Did you manage to speak to the doctor today Peachgreen? Have they given you any idea of a treatment plan yet?I’m sorry this wasn’t better news. There are lots of people on here sending strength and positive thoughts your way. Flowers

peachgreen · 15/09/2020 18:27

Thank you both so much. I did get to speak to the doctor @petalpower and it was really helpful. She echoed what @alternativeperspective said - it's less about the number and more about how the person is coping. She says that DH's symptoms are very low on the scale they'd be expecting at this point - maybe even a class 1 on the scale - and that's a better indication of long term damage than the number. So I'm feeling more positive. She treated him in ICU and said they're all astounded by his progress so far which is positive!

Copying and pasting the update I sent to people via WhatsApp today...

Good and bad news today. The bad is that his heart function is very low - normal for his age is about 60% and his is 20%. That's obviously not good. However, they're happy with how he's responding to the medication and are fairly confident they can improve that over time. He's getting better every day and as they keep reminding us, the speed of his recovery is an amazing sign that he has loads of reserves and will continue to get better. They will decide tomorrow if he's going to get an ICD (internal defibrillator) and we (along with his cardio team) are really hoping he will as it improves his chances of long life expectancy hugely. So those of you who pray, please pray for that! Looks like he'll be in quite a bit longer as his cardiologist is reluctant to discharge him until he has that fitted, and that could take a couple of weeks to arrange. They're also still investigating the cause - they're now not so convinced that it's genetic and so are looking in to other things as well. The MRI (when it eventually happens!) should tell us more. He's in good spirits and coping well - he's befriended all the nurses and they all love him!

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petalpower · 15/09/2020 18:34

Thank you for sharing this with us peachgreen. Good that you spoke to the doctor and they were able to set some of your worries to rest. Your husband sounds like a strong and resilient person who has already amazed the medical team with his recovery so far. Fingers crossed for an ICD.

Gladgreengrass · 15/09/2020 18:39

Sorry for brief reply but praying for your DH here (and for you and your little girl).

whataballbag · 15/09/2020 18:46

@peachgreen try not to worry about reduced EF (not as simple as it sounds I know)

My Dad was born with CHD which has now (8-9) years ago progressed to heart failure. He also has COPD.

He has an ICD, and he's still going strong. Obviously he's not 'well' in the grand scheme of things, he will never work again, can't walk up stairs etc, but he's here and he's loved and happy.

peachgreen · 15/09/2020 20:11

he's here and he's loved and happy

That's truly all I want. Thank you so much everyone.

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ArabellaScott · 15/09/2020 20:31

I'm glad to hear your update, OP. It sounds positive.
Sending best wishes.

peachgreen · 15/09/2020 22:23

He has another temperature. It's just such a fucking rollercoaster. I feel sick.

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ArabellaScott · 15/09/2020 22:48

Someone said before that temperatures were common? And paracetamol sorted it last time okay? SO hopefully this is just that common and treatable temp, and away by the morning.

You poor thing, though, hope you get a good night's sleep in tonight. Take care.

peachgreen · 15/09/2020 22:56

This temperature is higher, 39, and they think it could be a chest infection.

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