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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think my husband is gravely ill at the wrong time?

952 replies

MyOtherCarIsAPorsche · 26/03/2022 13:12

Masses of confusion.

Husband spoke to GP yesterday morning and described his chest pain. He was advised to call an ambulance. My husband refused because he didn't think he needed one - thought he had chest infection or torn muscle.

He went to A&E - was sat in a corridor from 10.30am - he had ecg, x ray and blood test. He continued to sit on a chair in the corridor all day.

He was told he was waiting for blood test results. These came back at 6pm. Then he had to wait for a CT scan - then rushed to resus.

Dissected aorta from heart level to naval level.

I was called to be allowed to sit with him because I wasn't allowed to be in A&E. Was then told he was being blue lighted to another hospital an hour away for immediate surgery. I asked is this time critical? The answer was - yes life saving.

Paramedics arrived and told me to set off to this other hospital. There were three paramedics. One said 'I'm not taking him because I can't use that bit of kit, I'll lose my job if something goes wrong'. No advanced paramedics available and no doctor available to go in the transfer.

I was 15 min into the journey and then called back to the hospital.

No surgery.

Trying all day today to get him transferred. Nothing available.

He's critically ill.

I'm out of my mind with worry.

There's a saying about not being ill on the weekend. The standard of care is not the same. The 24hr cover appears to not exist.

I feel like we're being fobbed off with poor excuses big style.

OP posts:
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MyOtherCarIsAPorsche · 26/03/2022 22:33

I cannot face being fobbed off again today. The emotional rollercoaster has had me retching on an empty stomach. Also just had a lengthy nose bleed - which is unusual.

My daughter has said she will ring H1. I'm exhausted.

I honestly think that if this had happened on a Monday it would've been easier to reach the right people to talk to. Just hoping for no further deterioration.

OP posts:
Innocenta · 26/03/2022 22:37

Please sip water slowly. You need to have fluids and some nutrition ASAP. I know you don't want to think of yourself but it's the only way to be able to keep fighting for him.

Try either a little bit of juice or a milky drink, whichever is more to your taste since people like different things. Or nibble a plain cracker. Take it slow.

ScrollingLeaves · 26/03/2022 22:39

I am so sorry, this is dreadful. But please do try to eat something and drink something or you will collapse yourself and you need to stay well for your DH.

Glassesareneeded · 26/03/2022 22:40

Hoping your daughter manages to speak to someone senior and get some clarity and is able to push things along. Definitely mention you will be logging with PALS for a complaint, and be persistent.

Take care, try to juggle things between you, and try to eat and get a bit of rest.

MyOtherCarIsAPorsche · 26/03/2022 22:49

My husband has stopped messaging. I rang ICU - he has tachycardia now and they've done a blood draw and found low potassium levels which can cause change to heart rhythm.

His heart rate was 54 when I left.

This blood pressure regime is probably responsible for altering his potassium level.

He's been given an oral potassium solution.

I have a bad feeling.

OP posts:
Glassesareneeded · 26/03/2022 22:51

Oh dear. What do you feel you need to do?

Have you had something to eat or drink?

MyOtherCarIsAPorsche · 26/03/2022 22:52

I daren't threaten to complain in case it affects how he is treated/how they treat him.

Does that sound bonkers?

OP posts:
Glassesareneeded · 26/03/2022 22:53

In my experience you must complain in order to get him the treatment. I understand your feelings, not bonkers.

Focus on what you want them to do. Complaining can happen later, just ensure they know you will be speaking to PALs when your husbands care is sorted.

Glassesareneeded · 26/03/2022 22:57

Try to establish what your husbands immediate care plan is, and when the staff think he could respond to it.

Take care. Hoping for better news soon. Flowers

Winterlove · 26/03/2022 22:58

💐 this all sounds so awful and stressful. Sending you all well wishes

Gazelda · 26/03/2022 22:58

@MyOtherCarIsAPorsche

I daren't threaten to complain in case it affects how he is treated/how they treat him.

Does that sound bonkers?

It doesn't sound bonkers. But I think you'd feel a bit better if you were able to speak to someone responsible for his care. Find out the firm plan and timescales.

Thinking of you and your DH.

Innocenta · 26/03/2022 22:59

Eat and drink. That has to come first or you will end up admitted yourself and very limited in what you can do. Small sips if it's all you can manage.

They won't mistreat him in revenge for you pushing.

DrSophia · 26/03/2022 23:01

I'm so sorry for you, your DH and children.
Can you face drinking a cup of tea or coffee with sugar? Maybe a full sugar fizzy drink?

What can we all do to help you? We've all got access to Google, we can perhaps create a list of questions? I'm sorry but I feel so sad for you and can't imagine how desperately worried, exhausted and angry you must be feeling. I just want to do something to help x

Glassesareneeded · 26/03/2022 23:01

Sorry, one more thought. The staff on ICU are generally amazing, and I cannot see what you say effecting how they treat your husband.

They will understand why you are pushing for answers and assessment and treatment. Indeed, they may need you to do this to use the pathways they have available to them Flowers

StopStartStop · 26/03/2022 23:02

No, I understand. Complaining might make things worse.

pradavilla · 26/03/2022 23:02

I really feel for you and ur poor dh. His level of care for what he actually needs sounds awful.

Maybe I'm being a bit naive but honestly please fight for him by being a pain in the arse, taking no for answer etc. For most things in life the folk that scream the loudest are dealt with first.

Start taking some notes too. Even if on ur fone and try take names down, also about who is saying what. It's just not good enough and ur husband needs life saving treatment NOW! Really hope he gets the transfer asap and can start recovering and looking forward to mtg the twins 🤞🏻

MyOtherCarIsAPorsche · 26/03/2022 23:06

My daughter rang H1 - they will not discuss anything with her. They told her to tell me to ring.

OP posts:
SouperNoodle · 26/03/2022 23:11

You're in my prayers OP. I can't imagine the hell you're all going through right now and I desperately hope that he gets transferred and the surgery goes ahead successfully.

Glassesareneeded · 26/03/2022 23:13

Before you do, please make sure you have has something to eat and drink, and as another poster mentioned take notes.

Same thing happened to me, I was the only point of contact at first. Its exhausting. Hoping you can tell them to speak to your daughter too.

All the best.

Genegenieee · 26/03/2022 23:15

Could you and your daughter call H1 together (if you are in the same place)? If she's not with you, is anyone with you?

Thanks
ScrollingLeaves · 26/03/2022 23:17

“MyOtherCarIsAPorsche

My daughter rang H1 - they will not discuss anything with her. They told her to tell me to ring.“

Tell her to ring again but this time say she is you.

QuebecBagnet · 26/03/2022 23:20

Is PALS open at a weekend?

Glassesareneeded · 26/03/2022 23:25

Unfortunately not in my local hospital. Office hours here.

I found best bet was to speak to senior member of staff responsible for the floor/hospital. I didn't budge from nurses station. At that time visiting was possible and I waited there.

AgathaMystery · 26/03/2022 23:26

@MyOtherCarIsAPorsche

I daren't threaten to complain in case it affects how he is treated/how they treat him.

Does that sound bonkers?

No it doesn’t sound bonkers but I promise you being assertive will only improve his care.

Pad and paper by the phone. Phone on loudspeaker so you can take notes.

The questions to ask are:

  1. How long has my husband got left to live if he goes untreated?
  2. What is the plan for the next 2,6 & 12 hours?
  3. Who is taking overall responsibility for his care?

A useful tactic is to go in with a siege mentality and simply don’t leave. Bu this I mean take a phone charger, snacks, drinks etc. sit by his bed and just don’t leave. It is daunting and scary but I’ve been there and it worked.

I know a few years ago that my husband would have died on day 1 of I hadn’t advocated for him & he would definitely have been a gonner on day 5. The ward staff called the site practitioner and departmental Matron to ask me to leave and the site prac said ‘what do you really think will happen if you leave?’ I said you’ve no staff, he will bleed out and no one will notice. No one on the ward can even site a cannula (really) or is even transfusion trained (seriously) so no one can even resuscitate him effectively. I will stay to resuscitate him.’

The nodded and left me to it. There are nice people in the NHS but it is overwhelmed and care at the moment is, to me, generally poor.

The more you advocate the better care he will get.

Crispycremedelight · 26/03/2022 23:29

Please do not threaten to discharge him - he has a type 1 dissection it is life threatening, if there is mention of a rupture they need to make sure he is stable to survive what is one of the riskiest operations that is carried out-I have had a partially ruptured aorta but it was missed by A&E and it was repaired 6 weeks later when I was having my aneurysms fixed (also discovered I had a life threatening dissection as well) he is being monitored in a place where they can react quickly. I would however speak to PALS and get referrals to specialist hospitals for the condition (south of England - Southampton, Royal Brompton and Harefield. St Thomas, Papworth, North Liverpool heart & Lung don’t know north as week) there is also a fabulous support group on FB who are desperately trying to increase NHS awareness of this condition. Happy to chat. You are all in my thoughts and prayers ❤️