Asking for a handhold - DH in ICU

[peachgreen]

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.

Glad to hear your husband is getting treatment. It is perfectly normal to feel like you are. When my DH had his heart attack and triple heart bypass surgery in May, we have never gone through anything this horrendous before. Luckily I have my 2 adult sons at home, otherwise I don’t know how I would have managed. One of them is very positive and wanted to know everything and the other was all doom and gloom and very upset. Speaking to friends and relatives on the phone is hard. When my DH came home it was still very anxious, he’s 63, very fit and not overweight. I went to bed shattered each night, but couldn’t sleep for worrying, but we got into a routine with exercise and tablets as he now has to take 6 per day. He wasn’t allowed out of house for a month, so rehab was confined to house and garden and after the month was up, we would go for a walk at 6 am when there were not many people around. We are fortunate to have private medical insurance, which helped whilst he was in hospital for tests and scans etc, but since he came out, follow up appointments have been on the phone and check up echocardiogram was 3 months later. We have had to make changes, he is a bathroom installer and we decided it wasn’t worth the risk of working in private houses at the moment, so he will be off work for a while.

My ds was 15 months old when his dad had his first heart attack, he didn't understand why his dad wasn't there to read him his bedtime story & I had problems with him not sleeping & having tantrums until he literally collapsed with tiredness. Ds has had bowel problems all his life which are linked to his autism, even now at 16 he still can get impacted very easily, keep up with the movical, I found Metanium was the best thing to use for his nappy rash when it was bad & to use gallons of sudocrem to protect his skin, has your dd been checked to see if the soreness has been caused by thrush? The warm wet environment of nappies can cause this & may also give her symptoms of a uti, she may need some antifungal cream to help get rid of it & as much time as possible without a nappy on. I hope your dh is starting to feel better, I remember the feeling terrified from when my then husband had his heart attack which came from nowhere, we were away for the weekend at our caravan, he had just got up & was going for a shower, he collapsed in the awning & was sweating, pale & didn't really know where he was, he was lucky in that his angiogram didn't show any major damage to his heart, he has had a couple of minor heart attacks since but still has no blocked arteries, other than needing a bucket load of pills every day he has recovered well. Both of you will be frightened when he comes home, it is only natural, but as you become used to the new normal it will gradually go away. The cardiac nurses are brilliant in supporting you both & he may be invited to gym sessions where he will meet other people in the same situation which helps a lot.

Hi @peachgreen sorry things are so tough but really glad your dh is improving and you are both staying as positive as possible. Use here to vent as much as you need!!
Ds is about the same age as your dd and we ended up taking him to the Dr a while ago about the nappy rash as it was so bad he was bleeding. It took a couple of gps later but then we got one who prescribed daktacort ointment and recommended we use it 3 times a day when really bad and then to cover it in vasaline and to be vasaline on at every single nappy change as it was the best barrier he thought. It did work though and cleared it up in a couple of weeks. Now we very rarely need to use it but if we see him getting a bit red down there we put a tiny bit on and it seems to stop it getting worse. Hope dd is feeling better soon

Thank you so much everyone. I want to and will reply to you all properly later. Am having a very tough morning - just want a good cry but obviously can't in front of DD. So reading these was so helpful, thank you. I'm just daunted by the future but I know you're all right - and I keep telling myself the same thing @alternativeperspective, tomorrow is promised to nobody and just because DH has a long term diagnosis doesn't mean that it will be what ends his life, or that I'll outlive him, because who knows what will happen? But the gnawing feeling of sadness and anxiety about the future keeps creeping in.

@peachgreen

Apologies for using this thread to vent. DH is approaching things very positively so I'm doing the same but anonymously it's sometimes good to express my fears and worries into the void. I'm starting to get a bit anxious about living with this shadow hanging over us - never knowing if he'll suddenly get worse, never knowing how long we have left, never knowing if things are silently declining without us realising. How do you cope with that? How do you cope with the slightest sniffle your toddler bringa home, paranoid it might be damaging for him? I don't mind changing our lives and long term plans to accommodate whatever DH's health may be - I can even come to terms with not having more children - but having faced losing him I now know how hopeless and desperate it would be to live without him and I'm so afraid of that always being present. I just wish someone could give us any kind of indication of his future. Right now all I have are regretted Google searches and the annoyingly vague "full life" platitude which all the charity websites resort to.

Sorry for venting.

It’s sadly one of those things you get used to.

We decided early on not to let a spectre hang over us, or to live each day like it was his last. We presume he will be here for decades yet, and will deal with the alternative if it happens.

My view, however, is that his condition is known and well medicated, so he is much less likely to be the DCM patient who declines. People who are unaware of it until it’s too late may hVe a worse outcome, but those under care are well looked after.

I would say it has aged my husband and changed his mindset more than mine.

And it has probably made my kids - who were teens and young teens at his diagnosis - much more pragmatic about health issues.

However, those early weeks and months were worrisome, I fussed a lot. Then mentally shook myself and decided not to live under its shadow, so largely ignored it.

We haven’t had a “what if” conversation for years now.

It being lockdown doesn't help as I know his recovery will be compromised - I keep reading about the importance of cardio recovery sessions and he won't get them.

I also really really just want to know how bad it is. I'm driving myself mad thinking about it. His recovery has been so good and he has no breathlessness at rest any more, even when lying flat - he gets puffed out after showering etc but that's improving each day. And they're still talking about him coming home early next week and his consultant keeps talking about him being back out on his kayak soon! But yet he's on Entresto which is meant to be used in severe HF only, and his breathing-related symptoms in his acute attack were so severe. I just wish I could sit down with his cardiologist and ask all these questions.

Bad news today. He had an irregular rhythm last night and they're now thinking he will need an ICD after all. They also want to keep him in for longer - maybe another 2 weeks. I'm absolutely gutted and just don't know how I'm going to cope. I'm so scared this is all bad signs and we're not going to have him back for longer.

Sorry to read the latest update Peachgreen. This must be so stressful for you. It's good they are being cautious and not pushing him out of hospital prematurely. I know it's very hard on you with a two year old but lots of pp have written about the benefits of an ICD ...it may not be the worst thing to happen if he has to have one. Hang in there . And try and get some sunshine with your little one and drink some tea, and eat something

Ah, I'm sorry, OP. Ask your family and friends for help. If ever you needed it, it's now.

You have been through so much in the last week Peachgreen - it will seem overwhelming at the moment I’m sure. Have you asked the ward staff if you will be able to talk to the cardiologist at some point? As others have said, an ICD may not be a bad thing and will give you and your husband a degree of reassurance. It’s good that the hospital are not pushing him out too speedily and are getting everything right before he comes home.

I’m sorry to read your latest update. You will cope, don’t be afraid to ask for help.

@peachgreen I am a cardiac registered nurse-the entresto could be temporary until his heart recovers-some people improve on medication and rehab. The AICD is an invasive procedure but it will help because his left ventricle is prone to cardiac dysrhythmia. I'm unsure why the AICD would mean additional two weeks unless they really need to monitor his kidneys,etcetera. I know it must be so very scary not being able to be with him due to Covid. Best of luck

@EKGEMS thank you so much. I think it's more because he has to wait until Wednesday to get his MRI and then the following Wednesday is the decision board for ICD fitting. I'm struggling a lot with the uncertainty but hoping I'll get to talk to his doctor tomorrow. His heart rate still seems high despite being on the max dose of beta blockers - between 80-100 - will that improve with time? Today it all just feels like a death sentence in a way it really didn't before. I'm so frightened.

Regarding cardio rehab sessions, we got a phone call from them after my husband was home about a week. They phoned me, which was great as she went through everything with me, was really kind and supportive and answered all my questions that I had. She sent through a pack with exercises. I had a blood pressure monitor which has pulse rate on it, so that was useful to record his blood pressure and pulse. She rang every week for 6 weeks and gave phone numbers to ring if we needed.

@peachgreen Ahh I understand now-I'm used to the American system of scans for inpatients being prioritized and the AICD placed when needed pending insurance. The heart rate can definitely be reduced with medication. It'll improve once the medication dosing is decided

[quote peachgreen]@EKGEMS thank you so much. I think it's more because he has to wait until Wednesday to get his MRI and then the following Wednesday is the decision board for ICD fitting. I'm struggling a lot with the uncertainty but hoping I'll get to talk to his doctor tomorrow. His heart rate still seems high despite being on the max dose of beta blockers - between 80-100 - will that improve with time? Today it all just feels like a death sentence in a way it really didn't before. I'm so frightened.[/quote]
Sorry to hear what you are going through.

If its any reassurance to you his heart rate of 80-100 is normal. (60-100 is the normal range). The betablockers can be titrated as needed, so the specialists are probably happy with how its working otherwise the dose or alternative meds would be added in.

Thank you so much everyone. Its been so hard not being able to actually talk to his cardiologist. I have so many questions and although I know he might not have the answers to all of them, it will at least stop me fruitlessly googling. I just don't know what we can expect in terms of his recovery, either in terms of quality or quantity of life.

So many people are rooting for you and your DH, Peach.

Just a thought, have you considered writing down all your questions in advance of your meeting with the doctor? It is so easy to forget something when you are actually conversing.

Yes I'm going to do that tonight @TrickyD - thank you for reminding me.

No news today as his cardiologist is off. But he's just told me he has a temperature and a headache so I'm absolutely freaking out. Fuck.

And I can't get through to the ward to speak to anyone.

Handholding, OP.

Thinking of you. Stay strong.

Okay, they say his temperature was just slightly up and it seems to have come down with paracetamol so that's good. But they also said his cardiologist is off all week so he's definitely going to be in for another week at least. And no date for his MRI yet. The lack of information is just horrendous, I'm so frightened and anxious all the time and I just have no idea if he's even going to come home.