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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:
Thread gallery
13
Genegenieee · 09/04/2022 08:25

Thinking of you OP Thanks

ItWillBeDone · 09/04/2022 23:03

Also thinking of you OP.

Lotsalotsagiggles · 09/04/2022 23:46

Hope you get the scan tesults and plan of treatment asapmsonthey can work out which hospital he needs

Newhousesad · 10/04/2022 03:25

I’m so sorry OP. The only thing you can do is keep hounding them as much as you can. Sadly I have similar experiences with the nhs recently

BritInUS1 · 11/04/2022 00:51

Thank you for updating

How are you coping?

Krabapple · 12/04/2022 01:03

I hope everything is ok. Have been following your thread and just checking in for an update.

SouperNoodle · 12/04/2022 20:50

Thinking of you op xx

Words · 13/04/2022 14:41

Hope you are Ok Thanks

CornishPasty101 · 13/04/2022 18:33

How are you doing OP? I hope your DH is ok.

ChiswickFlo · 13/04/2022 18:38

I'm sorry op x
I can empathise with the weekend awfulness!
Last weekend I spent 15 tortuous hours in a&e with mum. Diverticular sepsis. She was very, very ill.
The surgical registrar told me if her bowel perforated they wouldn't operate ☹️
She was also discharged on Friday afternoon - this seems standard sadly, no matter your condition 😡
She has to have further tests on an outpatient basis.
Look after yourself x

Fargoer · 13/04/2022 19:01

Hope all ok OP.

I wanted to hop on to say that if you are not having luck getting a genetic diagnosis, ask for a referral to clinical genetics for your husband. You don't need to go private for this.

Wishing you all the best

Istherehopeforme · 13/04/2022 20:51

Thinking of u!

Innocenta · 15/04/2022 07:27

Thinking of you and your whole family, OP.

StampOnTheGround · 19/04/2022 22:39

Hope all is okay OP x

MyOtherCarIsAPorsche · 20/04/2022 13:18

@StampOnTheGround
@olympicsrock

I'm a bit stunned today. I can't understand what's going on. I'm not sure that my husband has been treated properly from the start.

We have conflicting diagnoses. Incorrect diagnosis. I'm so confused.

He's been getting gradually worse since his first discharge. I'm starting to think he was incorrectly discharged.

On his second visit to hospital they sent him home saying he had gastroenteritis. His symptoms were V&D, clammy, feeling cold, breathlessness, pain radiating down his right leg. I was thinking the tear in the aorta lining was extending.

He went back to GP yesterday - sent straight back to the specialist hospital because there was no pulse detected in his feet and a delayed pulse in his groin.

He had a gated aortagram last night. They have now accepted that his stomach problems are due to compromised circulation which is what I was worried about two weeks ago. He's lost 2 stones in weight this last month and he is underweight now.

The doctors have arranged a team to replace a huge length of aorta for a synthetic one - open surgery tomorrow.

I'm uncomfortable with this - I feel it should have happened two weeks ago for a start and I just feel very uneasy about the way he's been treated.

The day he first went in I was told he needed emergency lifesaving surgery. Then I was led to believe that he wasn't that bad after all. Everyone breathed a huge sigh of relief and relaxed. Now they are replacing the whole aorta?

It's a waking nightmare.

OP posts:
MyOtherCarIsAPorsche · 20/04/2022 13:21

What will I do if he doesn't come through?

OP posts:
LegalEagle931 · 20/04/2022 13:37

I'm so, so sorry you're going through this and sending a virtual handhold and all best wishes for you and your family.

I don't know what to suggest in terms of feeling the left hand doesn't know what the right hand is doing, although I had a similar experience when my elderly dad broke his back in multiple places a few years ago so I understand how terrifying it is.

I know it's impossible not to worry but do try and take care of yourself as much as is physically possible, even if its just making sure you eat something decent once a day and keep hydrated.

LIZS · 20/04/2022 13:50

I'm so sorry, this must be incredibly upsetting Flowers Can you ask via PALS for a proper discussion with the specialist in charge of his case? There should be an internal review process to look at what has happened to date and whether any delay has caused his condition to deteriorate. Will you be able to visit?

olympicsrock · 20/04/2022 13:51

Hello OP thanks for tagging me. I was so worried for you two weeks ago when he started getting leg pain and wouldn’t go back in.

They really should have had him in the specialist hospital the whole time - really stupid to manage him in the non specialist centre and hope that this was gastroenteritis.
I can understand why they were trying to hold off surgery before now as the aortic wall is like blotting paper in the early period after a dissection and difficult to stitch to but if the blood supply to his gut is compromised they can’t wait any longer.

I won’t lie to you OP this op is a really big deal, however he is in good centre and they will do their absolute best for him. He will have 20 people all doing their absolute best for him.
Look after yourself OP, I will be thinking of you and crossing all my fingers and toes.

Things to do - ask the surgeon how long they expect the procedure to take and then ask DH to text you when he goes down to theatre. The op will start 90 mins after this as it takes a while for the theatre team to get him ready.

Tell DH to give his consultant your mobile number so that they can easily contact you when they have finished. I always phone the family/ partner as soon as I can after I have finished the op.

He is likely to be in hospital for a few weeks after the op so look after yourself.

Sending you love and good wishes.
Olympics

Crispycremedelight · 20/04/2022 13:58

Big hugs. He is having ‘elective surgery’ over emergency surgery so that is a good thing. The other question you may want to ask: if they can call you after they (the surgeons) are out of surgery and also how long they plan on keeping you husband under. My surgery was 12 hours but they kept me under for 24 so I woke up during daylight hours so I didn’t have the added issues of correcting my body clock. I sent you a DM. You are a strong women and you have this xx

YayitisfinallySpring · 20/04/2022 14:12

Thinking of you OP. Sometimes dealing with the NHS is like trying to herd cats. My BiL was about to die weekend before last. Friday was getting better, yesterday about to die. I wonder what the verdict will be today? So much confusion and misdiagnosis in his case too.

LakieLady · 20/04/2022 14:14

So sorry, OP, you must be in bits. I'm keeping everything crossed for you.

And as for your last question? You'll cope because you're strong and capable, and you have a loving supportive family to help. But cross that bridge only when you have to. Flowers

MyOtherCarIsAPorsche · 20/04/2022 14:57

Many thanks to all. I'm back to square one.

There's no visiting on the ward he's currently on. Only one named visitor if on intensive care wards.

We will FaceTime later on and tomorrow morning.

I collapsed yesterday - everyone rushed to help. My legs went to jelly. I was buying a birthday card for my daughter for tomorrow. I was with my granddaughter who was in her pushchair. I've no idea how I got back to their house - my legs felt like lead. I can't speak today - voice completely gone. Don't know whether or not it is 'hysterical' reaction.

I prefer to stay up all night as when I go to bed my heart misses beats and restarts with a thud. I can feel it more in bed - so I've stopped going in there. I've had episodes for years - but this is now constant, throughout the day and night. I have a medium sized VSD and wonder whether my time is up. I've been breathless and dizzy/unsteady for years now. Not had the heart checked since my last pregnancy.

But then again, hysteria ....

OP posts:
MrsMingech · 20/04/2022 16:06

Oh OP! Please get yourself checked. I hope you're ok. I expect someone's already mentioned it but I would call PAL's about the care or lack there of that your husband has received.

Innocenta · 20/04/2022 16:52

I'm really, really sorry you're going through all of this. Please seek some care for yourself, it sounds like you're struggling quite a bit physically too. Flowers

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