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.

@MyOtherCarIsAPorsche You're absolutely right to wonder if it might not be hEDS, based on what you've shared here. Under these circumstances you have every reason to want genetic testing in case it is a different subtype. I hope that can be arranged ASAP. I will say though that autonomic dysfunction can cause very severe symptoms like you describe for DD1 (I'm not at all implying this shouldn't be extensively checked out; it should be). Has DD1 had autonomic testing? (No need to answer or engage with this at all if it's too much, only asking because you've chosen to talk about the family. No pressure at all )

Very glad to hear DH has had the first procedure, though I appreciate it's by no means over. Thinking of you all.

@MyOtherCarIsAPorsche - glad to hear your DH is through the first part ok!

Re. messages - set an answerphone message on your mobile that asks everyone to ring for updates. You can send out group texts as well as and when you feel able. Maybe your son could be your designated responder?
It would also be a good plan to send out a group text along the lines of "Thank you so much for caring about us, and asking how DH and I are doing - we really appreciate it but I am under such a lot of pressure at the moment, that I won't be taking any more calls - please wait for our text messages, as they will contain all relevant updates"

That way hopefully the phone will stop ringing and you'll be able to settle down a little more. Would your DS be your designated responder for you?

OP I'm glad that one surgery has been done.

Now, joke all you want, but please tell him, a random MNer said not to strain on the loo!

A family member had some complex heart procedures. It's amazing what they can do. No change of lifestyle after recovery. Your DH could be dancing at a party in a few months.

Best wishes to you both 🕺

I hope your own BP is ok today OP?

Totally agree about not getting ill at the weekend. It was exactly the same when I had pre eclampsia. Nothing happened at the weekend even with maternity care. Very worrying

@Innocenta

She's had tilt table test scheduled twice and it was cancelled last min both times by hospital (2 hrs away by car).

Then covid.

Not heard anything since.

This was requested by a heart consultant she saw shortly after having fainted because of these attacks for three consecutive days.

@EmmaH2022

Will do! 😳

That's so frustrating, MyOtherCar! I really feel for her. I would definitely recommend going private for this if she'd be comfortable with that (obviously only when things feel more stable). I'd be very happy for you to PM me any time, no matter if it's in a few months or something.

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.

Dd who has eds gets the fainting, racing pulse and sometimes chest pain. She was also diagnosed with POTs. They did rule out any heart issues as they gave her a 48hr ecg and said she was fine. POTS is a common thing which goes hand in hand with eds I think. There’s a good fb group, parents of children with eds and pots which might be worth joining for more info especially if you suspect it with the grandkids.

@QuebecBagnet With Facebook as with the Ehlers Danlos society, I'd urge caution. There's a lot of overmedicalisation and catastrophising. Social media groups focussing on chronic illness are widely mistrusted by medical professionals for various reasons, and while they may have a place for a short part of someone's "journey", they can have a massively deleterious effect if one becomes over involved.

I'm not trying to say that anyone shouldn't take a look, etc, but do be wary and consider the motivations of everyone involved. Ultimately, it isn't helpful to most people to make illness a foremost part of their identity.

@Innocenta
Don't know how to pm 🙄

Hope he gets a lot better soon

@MyOtherCarIsAPorsche I sent you one, it will probably notify you by email. But don't worry about it; not a big deal at all compared to focussing on your DH and the support you need from people on your thread.

@Innocenta

No dm/pm 🤔🙄

Both boys still asleep for now.

Youngest is fast on - on top of me.

I'll need to de-tank soon or I'll wet the sofa.

@MyOtherCarIsAPorsche It's okay, it was just to have a little chat about private doctors, which isn't something you'd want to be setting up this week anyway. Sorry for bringing it up and making you worry about something else! I will still be here on MN when things are feeling less stressful and we can sort it out then. You're naturally worried about your adult children as well as DH at the moment, and as someone with a number of these conditions, I (unfortunately) have experience of many of the doctors involved. But I didn't mean to add to your pressure, and I do apologise! Of course DH is at the front of your mind right now

Just an idea for you is to have one person that you relay info to and that person lets everyone else know. You ask people to text or question that person which gives you a complete break from constantly updating people.

@Innocenta

I'm very interested - we saw an eminent rheumatologist privately in London to get daughters diagnosed.

We are North Yorkshire - husband's current hospital East Yorkshire.

OP I hope all is going as well as possible for your husband today. I just wanted to pop in to reiterate that you don't need a diagnosis to get an EHCP. All you legally need to do is request an assessment of needs from the local authority - their webpage here explains it: www.northyorks.gov.uk/all-about-education-health-and-care-plans-and-requesting-assessment
They give a link to a request form that they ask you to fill out, but you don't have to - you can simply email them at the address provided and say 'I want an assessment of need'. However, a nice little description of the main areas of need like you gave us in your earlier post would be a very handy thing to include if you or your daughter feel like you have time to copy and past it.
Best wishes to you all, and to the expectant mum of twins too

Treatment for dysautonomia (whether it's POTS or one of the related conditions... you can actually be diagnosed with more than one at a time, and they can co-exist with an anatomical problem) can potentially make an immense difference, so if it's possible in financial terms, I think it would be well worth DD seeing a nationally recognised specialist to be evaluated. Of course only when it's realistically possible to focus on anything other than your DH.

(For me personally, subspecialist input from cardiology, gastroenterology and neurology have all been game changers in terms of quality of life with severe EDS & other conditions. I take twelve daily meds, leaving aside PRNs, but I can eat again (!) and am happily married with many interests, vs 100% bedbound. That's what specialist treatment has done for me, hence always happy to share recommendations for doctors.)

[quote MyOtherCarIsAPorsche]@Innocenta
Don't know how to pm 🙄[/quote]
dear Porsche, if i may presume such familiarity, it's quite easy to send a private message to a particular poster.
find a post from the person whom you wish to message.
look at the blue line heading each of the posts. it has the poster's name. further to the right there is written, message poster.
click on that, and hey presto !
you can practice on me if you want. i don't matter.
all the best to you and your dear husband. how lucky he is to have you.

A lot of people are extremely naive about the state of the NHS as it is now. The OP’s situation is unfortunately an all too common example of the current problems faced. With previous A/E experience I’d often call for a ‘blue light’ ambulance for a time critical transfer from our department to the local specialist hospital only to told that an ‘untrained crew’ ie not paramedics are the only ones available. We’d jump through hoops to try to get a trained crew to no avail, simply because they weren’t enough available. In a busy a/e department they’d be no nurses or doctors to go on the transfer due to staff shortages with us. The consultants would shrug their shoulders as what else can be done. They’d never offer to go on the transfer. I’ve known ‘blue light transfers’ waiting at least 4-6hrs for a trained crew to arrive.
Nothing is going to change to a noticeable extent for a long, long time.

@VirtueClapper83 yes I agree most of the public are either naive or head in the sand. But when you say the Consultants wouldn’t offer to go with the patient, surely if there aren’t enough nurses then there are even less Consultants? You don’t want them gone for hours out of the department.

‘The consultants’ would be a completely different thread from my experience if I could be arsed to start one

Well - you couldn't make this up.

To conclude my 'long weekend' my grandson has just been blue lighted to hospital. He started to fit and the fit was still happening when the ambulance arrived.

Paramedics were here about 15 min in which time my daughter was contacted and got here in time to go with him in the ambulance to hospital.

I'm shattered.

Oh good lord you poor thing. I hope you get news soon and he's OK.

Glad DH is getting some treatment at last.