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

[MyOtherCarIsAPorsche]

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.

Hi OP, I am relieved that things are moving, and horrified at what you have been through.
I hope that everything goes well and send you both my best wishes.

As for laughter, it's never inappropriate when needed. Especially dark humour at stressful times, it is like a pressure valve and helps us to cope. I would strongly recommend it! There are various traumas in my life that have been made bearable by being able to laugh at the unreality or insanity of it all, my dad was great like that and helped me through some heavy times with his dark humour.

I hope you can afford some decent rest, take care x

So sorry to hear about your husband. As a former NHS rota manager I was horrified to discover that we had virtually no doctors on weekends or after 5pm. I spent years thinking how hard doctors work and all the crazy long hours they do, and then I joined the NHS. The reality (at least in my trust) was they work 1 weekend in 4 (some in 8) and generally 8am - 4pm. I always tell people to pray that they never get taken ill at a weekend.

Wow - this makes awful reading . I am an aortic surgeon. There is a big campaign called Think Aorta to remind A and E teams to remember to consider Aortic dissection as a possible diagnosis.
It does sound like genetic testing for connective tissue disorders such as EDS is really important for your family.
Your case is extreme but it can be a nightmare to get patients transferred to an appropriate hospital for surgery with appropriate expertise AND capacity. I have been the consultant at the first hospital jumping up and down making numerous phone calls.

Your story is completely unacceptable and once he is out of the woods you should make a massive fuss.
OP - have they called this a type A or type B dissection?
If it helps do PM me.

Just wanted to add to the well wishes and hope all goes well for him and you.

The reality (at least in my trust) was they work 1 weekend in 4 (some in 8) and generally 8am - 4pm.

This is utterly disingenuous. Yes, a normal day is rota'd for 8 hours, just as it is in every role. Yes, 1 in 4 weekends is common. You don't mention though that the weekend shifts are 3 12.5 hour shifts, after 4 normal days, followed by 1 rest day and another 4 normal days. You also don't mention that doctors get no say in what weekends they work. Sister's wedding? Bad luck. Do a swap. Except the rota is usually so tight that a swap means working 2 weekends in a row (unless you are the rota coordinator who told me, when I went to them to say I was getting married in 9 months time and needed to arrange time off, "I advise you not to get married during this rotation"). Nor, as a rota coordinator, are you likely to be in any way aware of the unpaid overtime that doctors do both on the ward and at home.

I'm sorry to derail your thread OP and I'm glad your husband is making progress but my days this comment made me see red. How dare Fitat50 suggest this is anything other than a massive government fuck up in managing NHS staff numbers, by insinuating that an exhausted and overworked workforce are somehow lazy.

I'm so sorry to hear this. I have been the nurse trying to get a patient a bed at a specialist hospital. Being told that I've phoned too early and the beds aren't sorted yet, then told that I've phoned at 10.05 and should have phoned at 10.00 because all the beds are gone. I had to say 'tell me what I need to do to secure this patient a bed.' I eventually got him one but only because another patient died

Can I just say .... please make different arrangements for child care this week. I KNOW you want to carry on as normal, but I have been there, and honestly, you can't.
If you can have visits, and cuddles, and play and simply BE with your grandchildren.. that's what you need. You do NoT need to be fully responsible for them when your mind is racing.
Truly, give yourself a break and think of you!
I am shocked that your children are still expecting child care tbh.

Please think of yourself and your husband first. You need to be first and ready to care for him. Everyone else can wait xx

You've been in my thoughts and prayers today OP. I'm hoping all is going/has gone well with the surgery and that you're getting plenty of support irl. Xx

Hoping all is well and thinking of you all x

I hope everything's OK OP x

Thinking of you and your husband OP xx

Lots of love to you and your husband tonight OP x

Hope all went well with the surgery and he is back on the ward now.
Not going to tag you because I'm sure you don't need the hassle - but just to let you know that I and others are thinking of you both and keeping everything crossed.

The a&e staff who were the first to see this patient are increasingly being subjected to abuse from patients. www.theguardian.com/uk-news/2021/oct/10/nhs-staff-face-rising-tide-of-abuse-from-patients-provoked-by-long-waits

They often pay for their training courses and exam fees and are expected to move several times during training. In addition to their time on the wards and unpaid overtime they also have to study for the next set of exams. There are just not enough of them www.theguardian.com/society/2019/dec/23/uk-has-second-lowest-number-of-doctors-per-capita-in-europe

Yes it's terrible that the OP was in this position - but if you vote for keeping taxes low and for letting a pandemic rage with total disregard for its impact on services this is what you get.

Hoping for some good news for you after the op.

Hi OP

How are you doing? How did surgery go?

Also just checking in again to say I hope you’ve had some good news overnight OP x

I hope things have been okay overnight, OP. I've been thinking of you and your DH.

I have only just came across your post, I am hoping you and your husband are ok

@olympicsrock

Thank you so very much

I don't know how to pm/dm

Yes - in resus I saw a poster saying something about considering aortic dissection. I now know how dangerous this condition is - especially as he thought it was either a torn chest muscle or a chest infection (didn't think heart attack as the pain was sharp).

Coincidentally/unfortunately there are hypermobile histories on my side of the family and my husband's family going back three generations with early deaths on both sides. Aneurisms and strokes mainly as far as we know.

Only my two daughters are diagnosed - and this was a 25 year battle as I've known something was very wrong since birth with my older daughter. I even think all her three children are affected. But it's almost impossible to get a diagnosis.

There are things in school that could be done to ease my granddaughter's day in school. Sitting all day is agony for her. Even her pen grip is affected. The steps into the school playground hurt her knees. She's absolutely exhausted when she gets home and goes to sleep, is woken for her meal, then straight to bed. She wakes some nights screaming with pain in legs and arms. She has bowel and bladder problems and possibly autistic, dyslexic, dyspraxic. But an EHCP can't be put in place without a definite diagnosis.

We need genetic testing because the exact type my daughters have and whether we all have it needs to be ascertained. My younger daughter is having twins and I'm so worried about EDS complications. Previous pregnancy was affected (singleton). My older daughter has crushing chest pain after a large meal - she goes grey, clammy, racing pulse, faint. She was told it's autonomic dysfunction related to EDS. But I'm not convinced its hypermobile version she has - she has very short, broad feet and bracydactyly. Her toes weren't visible at birth - they were/are so short. After my own research, this would indicate classic/classical type EDS not the hypermobile type, although she is comically hypermobile as are we all. We've had expert dancers and gymnasts in the family who have excelled to some extent because of hypermobility.

Surely if you have a condition which makes it more likely to develop life threatening conditions you need to have this knowledge in order to inform the medical staff which you come into contact with as the information informs their choice of treatment and aids diagnosis. A proper diagnosis will also inform your life choices. The gymnasts and dancers in the family have ended up with crippling joint injuries and thus chronic life long implications. If they'd have known they had a condition they could have taken this into account in order to support joints and ligaments.

EDS symptoms affect people on a wide spectrum - I would generally say we are at the lower end of the spectrum as we can get about independently. But we still need to know for definite if we have it because it can affect major organs and any surgeries potentially required, especially from an anaesthetic point of view.

I feel like the only professional who took us seriously was the consult we saw who diagnosed my daughters. Even then we had to do our own research to fully understand all the implications.

Your information could be potentially life saving for us as we now feel we should be pushing for genetic testing and regular check ups.

But an EHCP can't be put in place without a definite diagnosis.

This is not true in any way shape or form. Ask your daughter to submit a parental request for an EHC needs assessment.

My husband has had stents/sleeving threaded into aorta through groin to reinforce damage.

Surgeons will have a meeting tomorrow (Tuesday) with regards to getting a team together for further open surgery - no timescale known yet.

His blood pressure is causing concern as it isn't 'behaving itself'. This morning the top figure was 165 which is the highest it's been since he started the drugs and intravenous infusion on Friday. They are trying to keep it under 120.

He had a good sleep last night and this morning he is worrying about constipation - we had a little bit of a giggle about not bursting a blood vessel when straining. We're joking about it but we've no idea how true this could be. We've had no information about how to live with this condition yet. (Hopefully he will get the chance to live with this condition - still haven't been told type A or B even though he asked the doctor directly.)

I'm looking after three grandchildren today - my older daughter is a single parent and I don't want her to 'be a nuisance' at work as it's a very small team and it will cause disruption. She is looking around today for nurseries/day care for the future. My other daughter (expecting twins) is going to work from home as is her other half and they will sort child care between them. My son (who works locally) is shopping for me, he's washed my car and filled it up, he's coming to have the children this afternoon so I can pick my granddaughter up from school without having to take the two grandsons (2 and half, 1 and half).

I'm genuinely touched by every ones support, comments and opinions on here - all of them. I fully understand pressures within our NHS - it's certainly worked out for us this weekend. I've been on the phone to the GP's this morning thanking them for their advice and help on Friday morning. I've been keeping further family up to date as much as I can. (I am typing this as my grandsons are sleeping - they haven't woken for lunch yet because I was later settling them today.)

What a platform this is! I feel like the support and advice I have had has literally been lifesaving - for me and my family.

We have a bit of an uncertain future now - we have to make quite big changes to how we live. But I feel a lot safer for now. I think I got four hours sleep last night - was cat napping in case the hospital was trying to ring me.

Many thanks everyone - this weekend was one frightening roller coaster and you held my hand 🙏🏻🥰

@Woffle

Ohhhhhh - naughty school. They said they need a definite diagnosis.

Just a thought @MyOtherCarIsAPorsche - would it be worth “outsourcing” the job of keeping wider family etc updated to one of your children. IME that can be quite draining & time consuming. Glad to hear the updates and hopefully all continues to go well. (I’ve had post op obsession with going to the loo so fully empathise with your Dh! I was glugging back the lactulose! Glad you’re having a giggle too)

@Woffle

But an EHCP can't be put in place without a definite diagnosis.

This is not true in any way shape or form. Ask your daughter to submit a parental request for an EHC needs assessment.

This.

My son got his ehcp at 2.5 before he was formally diagnosed with anything. We applied ourselves through the council website. The schools / council try and put everyone off.

@HaggisBurger

Yes - you are right!

Need to cascade the updates better.

But everyone is messaging and ringing me. Had to charge phone quite a bit yesterday.

There's always a bit of 'toilet humour' round here - our infantile brains 😬