Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

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:
WiseUpJanetWeiss · 06/09/2020 20:05

Heart failure does not mean the heart is about to fail completely. People much older and less fit than your DH live with heart failure (treated) for years. Obviously every case is different and you’ll need to be led by the cardiologist, but this all does sound like good news.

CCU usually means HDU (high dependency unit) for hearts, so a step down, but with a high staff to patient ratio, and with heart specialist Drs and nurses to give your DH the very best care.

Hope you are remembering to eat.

Original poster
peachgreen · 06/09/2020 20:32

Thank you @CormoranStrike, that's so good to hear. DH gets very little satisfaction from work so I'm hoping we'll be able to work it so that he goes part time at the very least. I'm so glad your husband is doing so well.

@WiseUpJanetWeiss thank you, that's really helpful. Just praying he responds to medication. All the tests theyve done so far have been inconclusive - the only thing they can say is that he had a cold! But hopefully they'll be able to do more detailed testing once he's out of ICU.

OP posts:
Hairyfairy01 · 06/09/2020 21:34

CCU is definitely a step in the right direction for your dh. It shows he is recovering. I'm so pleased for you.

Brenna24 · 06/09/2020 22:08

That is all sounding a lot more positive. I hope that he is in the CCU very shortly. I hope that you get some sleep tonight too.

Original poster
peachgreen · 06/09/2020 22:16

Thank you all. He has his phone now and it's amazing to be able to exchange a few messages and even have a short call (he gets very tired obviously). I'm very anxious about going to bed as that's when the bleak thoughts creep in. I'm finding myself having panic attacks thinking I'm going to get another call saying he's had a heart attack or a stroke or something. Hoping speaking to the doctor tomorrow might get me access to some help.

OP posts:
WiseUpJanetWeiss · 06/09/2020 22:43

Do you ring the ward when you are worried in the night? I did this a few times, encouraged by DH’s named nurse. I felt like a nuisance but it really helped.

Later on, DH and I would send very brief text messages (message alert on silent) to each other when we were awake in the night, often just with kisses, just for reassurance. Somehow knowing he had sent xx at 3am made the 4am wakefulness less terrifying.

Original poster
peachgreen · 06/09/2020 22:48

I feel awful @WiseUpJanetWeiss but I've been phoning about 4 times a day. Once first thing (though that's partly to book a visiting slot), once after the doctors have done their rounds, once before bed and once in the middle of the night. I feel such a nuisance but they're always so nice.

I've told DH that if he hasn't the energy to message just looking at his phone and therefore updating his "last seen" status on WhatsApp will be an amazing boost for me! I will definitely message him when I wake up now as he has his phone (on silent).

OP posts:
H1978 · 07/09/2020 07:19

Im glad to hear you are now able to communicate with your dh, that must be a huge boost for you and a great comfort. Flowers

WiseUpJanetWeiss · 07/09/2020 07:54

@peachgreen

I feel awful *@WiseUpJanetWeiss* but I've been phoning about 4 times a day. Once first thing (though that's partly to book a visiting slot), once after the doctors have done their rounds, once before bed and once in the middle of the night. I feel such a nuisance but they're always so nice.

I've told DH that if he hasn't the energy to message just looking at his phone and therefore updating his "last seen" status on WhatsApp will be an amazing boost for me! I will definitely message him when I wake up now as he has his phone (on silent).

We did that with Messenger too. It felt incredibly reassuring. I don’t think you should worry about being a nuisance. In my experience this all becomes a three way partnership, and the staff gave me the impression they had all the time in the world for me.
Original poster
peachgreen · 07/09/2020 09:22

He's had some chest pain this morning but painkillers relieved it and he had an ECG which seemed to show it wasn't heart related so hopefully it's just indigestion! He's very very tired - I'm hoping that's because he's struggling to sleep, not any indication of further damage.

I just wanted to add a little note here to say that although his recovery seems (and is!) very miraculous, this thread is very very real. I've wondered in the past about the veracity of medical threads with these kind of live updates because you would think that nobody in this situation would be thinking about going on Mumsnet etc. The reality is that in these situations you're literally living from update to update and quite often you have hours with no information. You have no energy to do anything, no desire to talk about anything other than the current situation and eventually you run out of friends to call and cry on. Additionally I don't know anyone in real life who has had these issues so this thread has been an absolutely invaluable source of information and reassurance for me - where else would you get several heart failure survivors and three ICU nurses responding to your questions?! So while it may seem odd to some that I'm posting here, I now completely understand why people do and I hope this explanation makes it clearer to others.

I'd also like to add that I will never ask for, accept or need any practical or financial support from anyone on Mumsnet - this is not a begging thread. DH has great sick pay, critical illness cover and life insurance, plus we have family who would never see us struggle, so we will be absolutely fine in that regard.

OP posts:
giletrouge · 07/09/2020 10:11

Great post peachgreen.
It seems obvious to me why people would post for support in this kind of situation, and it really annoys me when people start saying - is this real, why are you posting on mumsnet? You've really articulated it - so much so I'm tempted to cut and paste and save your post to drag out when I see the trollhunters (but I'm an interfering old busybody who likes to defend people so maybe I should resist that temptation!).
I'm so glad he's doing well. Flowers

Murinae · 07/09/2020 10:22

I have cardiomyopathy and an implanted icd though I have a different kind to dilated cardiomyopathy. There is a great charity www.cardiomyopathy.org/ with a wealth of information and help. They also have specialist nurses available to ask any questions you want.

AlternativePerspective · 07/09/2020 10:43

@ Murinae I have just applied to be a telephone peer support volunteer for them as I have hypertrophic cardiomyopathy.

There’s also a fb group: cardiomyopathy Uk where there is a lot of support and people who are going through the same thing.

Original poster
peachgreen · 07/09/2020 10:50

Thank you @murinae and @alternativeperspective. Once we have an official diagnosis (which I appreciate may take many weeks) I'll definitely sign up to some of these support forums as I think it will be really helpful.

@giletrouge Honestly I don't want to be too critical because I've done it myself in the past - it really does seem kind of unbelievable that anyone would spend time on MN when facing that kind of adversity but actually when you're in it, it makes perfect sense. Having this thread to pour out my worst fears allowed me to keep them from my family and be strong for them and my DH, and it also gave me something to do other than googling. His recovery has been absolutely remarkable which must also seem unbelievable to many - it is to all of us! I'm sure there will be explanations in the future for why he was able to bounce back so quickly but for now I'm just immensely grateful that he was. Of course long term things may look different but we'll cross that bridge when and if we come to it.

OP posts:
Murinae · 07/09/2020 11:04

@AlternativePerspective I have HOCM as well and am also a member of the Facebook group. That’s great that you are volunteering it’s something I was considering when I retire in a few years.

@peachgreen I think the explanation of why he has bounced back so quickly may be that they have managed to clear a lot of fluid from him which means he can breathe more easily. I’m so glad he’s improving and hope you get answers soon.

Doliv63 · 07/09/2020 11:11

Peachgreen...I have been following your thread and just want to add to all the other good wishes .You sound like an amazing,strong lady and I sincerely hope your husband makes a good recovery. 💐Xx

Original poster
peachgreen · 07/09/2020 13:14

He's started treatment for enlarged heart so we just have to hope that the meds work and they don't have to chop and change too much, and that they get to the bottom of the cause soon.

OP posts:
petalpower · 07/09/2020 14:02

I would also recommend the cardiomyopathy charity that @Murinae mentioned. I also have dilated cardiomyopathy and am classed as having heart failure. I have a very full and active life and once the medication was sorted felt well and able to do most things. The words heart failure are very scary. I hope your husband continues to improve @peachgreen and that you get some more concrete information soon.

Original poster
peachgreen · 07/09/2020 14:24

Thank you so much @petalpower. Do you remember how long it took you to feel back to near normal? I suppose it's different for everyone but at this stage I've no idea if we're talking weeks, months or years!

OP posts:
justasking111 · 07/09/2020 14:36

My friend diagnosed at 34 firstly thought it was asthma is doing great. She does long walks, works full time. The changes are her meds and her diet. Consultant said it was probably a virus that had caused it when they finally diagnosed it her heart was working at 25% which was pretty terrifying at the time.

petalpower · 07/09/2020 15:03

My initial presentation wasn’t the same as your husband so I’m probably not much use with advice about that unfortunately. My mum also had DCM so when I started showing symptoms I was checked with an ECG and echocardiogram then referred to a cardiologist. I was diagnosed in July of last year. It took several months for my medication to be balanced.

Original poster
peachgreen · 07/09/2020 16:13

Thank you both, that's all really encouraging. He's doing really well and is on medication to slow his heart rate now - all his other vitals are normal (though he is still on oxygen of course). Long term still a mystery - we'll see what the tests bring!

Thank you all again for the support - it has been so invaluable.

OP posts:
petalpower · 07/09/2020 17:29

I was on a beta blocker to slow my heart rate initially which made me feel dreadful (Bisoprolol). It took a bit of a fight with the GP to get changed to Nebivolol. I’m on the medication for life now so it pays to get it right. Positive news that your husband’s vital signs are all good. Hope you’re bearing up too @peachgreen and have lots of RL support.

AlternativePerspective · 07/09/2020 18:04

@ petalpower bisoprolol is the work of the devil IMO.

It’s also worth bearing in mind that normal heart function is between 50/70% not 100%, so if you’re given a rate then remember anything below 50% is considered to be heart failure but it’s only to be taken off 50% not 100.

AlternativePerspective · 07/09/2020 18:04

And most people are closer to 50% than 70, it’s generally athletes etc who reach that upper level....