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Original poster

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.

OP posts:

Merriwicks · 17/09/2020 18:22

Sounds like he is on the right track. It will just be a slow process. It is so tough in your shoes though, as you just want answers and want them now .
My dad didnt have his ICD fitted until about 6 months later, that was a little bit due to him being frightened of the op. They wont let him go without if he is high risk or if they have any concerns. It is totally scary though. Im afraid that fear never quite leaves. It does lift a good bit and you learn to bury the rest. I drive my dad mental fretting over him. His life did change massively, so it took some adapting. I didn't care as he was still here and alive. He did care, so that was tough.

Original poster

peachgreen · 17/09/2020 19:28

Thank you @justasking111, you're so right. I'm trying to learn to just take things day by day and not pin too much on any one thing as it could change. I guess them now not thinking he needs one is a good thing.

@merriwicks Thank you. The fear is pretty horrendous. I'm hoping it eases once I have him home and can keep an eye on him. Can I ask how life changed for your dad?

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Merriwicks · 17/09/2020 19:47

@peachgreen he was a lorry driver and couldn't hold a hgv licence any longer because of his poor heart function. He also had to sell his motorbike as he did not have the strength to ride it anymore. He was always a very practical man, building things and a very very strong man. He was very frustrated that he lost that strength and was having to ask for help. In saying all that, he managed to build a shed about a month ago, it takes him a lot longer as he does need more breaks and will often need a nap in middle of the day (does have sleep apnea as well though). So most of his strength has come back, but it was highly frustrating for him at the time. It was also very hard to watch but it honestly does become much easier as they improve and your life becomes normal again.

Original poster

peachgreen · 17/09/2020 20:11

Thank you @merriwicks. That must have been so hard for you all. I think I'm very lucky as DH has a desk job (which he doesn't much like anyway so if he can't work or has to go part time he'll not mind!) and while he enjoys keeping fit he mostly does walking which he'll hopefully be able to build up again. So while of course his life will change, it hopefully won't be quite so dramatic.

Just hoping they can balance his meds. He came off his diuretic to improve his blood pressure but now he has more fluid on his lungs again so will have to go back on it. His HR hasn't really improved that much, it's still bouncing around 75-95 (crazy variance!) and his blood pressure is very low. Fingers crossed tomorrow sees an improvement. He also has a migraine tonight just to make matters worse!

OP posts:

forgetthehousework · 17/09/2020 20:13

I'm so glad you managed to sleep last night and also glad that your DH had a good night too.

Things always seem worse at night, but from your posts he is doing well and is in the right place while the medical staff decide the best course of action. Day by day is good (hard to do though).
Wishing you a peaceful night

forgetthehousework · 17/09/2020 20:20

Sorry, cross posted there.
Meds always seem a bit of a balancing act, but there are so many these days you can be sure they'll keep trying until they find the best combination.

Merriwicks · 17/09/2020 20:28

As previous poster said, meds are a balancing act amd everyone responds differently, it will take some time to get them right for him.

TrickyD · 17/09/2020 20:33

I am no expert, but that heart rate variation seems pretty normal. My pacemaker keeps mine between 70 and 120, and it actually varies a lot within that range.

Original poster

peachgreen · 17/09/2020 23:07

Thanks @TrickyD, that's really useful to know - I'll try thinking more about the average rather than the variance.

Thank you everyone. I know I'm being impatient and it will just take time. Think I'll feel better post MRI when we have more of an idea what might have caused this n

OP posts:

AlternativePerspective · 18/09/2020 07:48

No ICD can be seen as a good thing at this point. They can always change their minds on that if the need arises.

Mine is because I am considered to be “at risk of sudden death,” if he isn’t, then ICD won’t be needed and they will use medication wherever possible.

It can be hard to not think about what could happen, it’s one of the reasons why some of my extended family have opted not to be tested to see if they also have my heart condition, because when you know it’s all too easy to dwell on the fact.

Original poster

peachgreen · 18/09/2020 10:25

He had another VT this morning which is really gutting. Trying to stay positive but he's not responding to the meds in the way they'd like I don't think. Again, nobody is really telling us anything and when they do they're contradicting each other (he definitely needs an ICD as soon as possible / he doesn't need an ICD / he maybe needs an ICD but we'll see in 3 months etc). And still no date for his MRI.

OP posts:

petalpower · 18/09/2020 11:06

When is his cardiologist back?

Original poster

peachgreen · 18/09/2020 11:18

He was in yesterday, he's the one who said no ICD. Then the other doctor we saw yesterday seemed really surprised at that and was just like "huh, okay, that's interesting..."

OP posts:

AlternativePerspective · 18/09/2020 11:41

The medication is sometimes a long game sadly. At the moment they may be playing with the dose of what he’s on but if he doesn’t respond well to that they may change it to something else, but they need to give the body time to adapt to the changes before they know whether or not there will be a difference. It can take months to get the medication balance right but that doesn’t mean he’ll be spending months in hospital.

It likely does mean however that when he is discharged he won’t be a-symptomatic, and they will need to work with that in terms of tweaking his meds during appointments etc...

My meds were changed about five times during the first year after I fell ill. unfortunately after that there was a period where my AF was badly managed, but since I went into hospital last year and after my interventions my medication has stayed exactly the same apart from my warferin which is altered according to my INR, but that is usually only a temporary change....

Original poster

peachgreen · 18/09/2020 11:45

Thanks @alternativeperspective. I think if he had an ICD I wouldn't be so worried and would be comfortable waiting for his meds to be tweaked etc but I'm just very aware that every AF can lead to sudden death and that's utterly terrifying.

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Original poster

peachgreen · 18/09/2020 11:59

Feeling a bit better as I've decided to buy a defibrillator if he doesn't get fitted with an ICD. May sound ridiculous but I'd never forgive myself if something happened and I hadn't done everything I could. And you can get 0% finance on them.

OP posts:

MrsT777 · 18/09/2020 12:37

@peachgreen

Hi Peachgreen,

I would have a chat to the Doctors before you buy the defibrillator get their views on it.

Sending you best wishes 💐 💐

AlternativePerspective · 18/09/2020 12:50

I would definitely advise having a chat with the consultants before buying a defibrilator.

I would ask them why they think it is he doesn’t need an ICD for now and what the risks are if he doesn’t have one.

IIRC he hasn’t had an arrest, in fact his heart rate is higher rather than lower and they will first attempt to bring that down with medication. And sounds from what you’re saying that his heart rate is dropping, it’s just that they’re currently working with the meds to find a decent rate.

Original poster

peachgreen · 18/09/2020 14:42

Oh I definitely will talk to them first, I more meant if when he comes out he could still require one, if you see what I mean. It's just comforting to know it's an option.

His heart rate is definitely lowering but he is getting these tachycardias which is making me a bit concerned.

OP posts:

Original poster

peachgreen · 18/09/2020 18:09

Not a good day. His heart rate is back up again to 85-95, sometimes even 100. His blood pressure is still below 90. So they won't give him more beta blockers. They seemed baffled as to why they're not reducing his heart rate and why it's higher than yesterday. He was also getting bouts of breathlessness and blue lips despite his O2 sats being really good. I'm so scared that things are going in the wrong direction.

OP posts:

justasking111 · 18/09/2020 18:12

Could be white coat syndrome, he is anxious, in hospital nothing to distract him from his own health.

Original poster

peachgreen · 18/09/2020 18:48

Yes I think that definitely doesn't help @justasking111. He also had a migraine last night which didn't help either.

OP posts:

justasking111 · 18/09/2020 19:19

Can you get him some ear buds and some audio books, to listen to. It will help relax him whilst blocking out the noises around him. I use ear buds at night only one which helps me relax when insomnia kicks in. I always take ear plugs into hospital too.

Original poster

peachgreen · 18/09/2020 19:33

Yes he has all those things and he's usually very good at relaxing himself. I'm hoping the migraine yesterday has had a knock on effect and things will improve tomorrow.

OP posts:

petalpower · 19/09/2020 07:14

Hope today is a better day and your husband has a settled weekend peachgreen.

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