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.

God that's awful!

CRY actually offer a screening programme so hopefully that might help to some extent.

I'm gobsmacked that doctors say they 'don't want to label'.. that's madness!

He's gone straight from scan to surgery.

I didn't know - I rang up to see if there's a signal problem with WiFi. Messages had stopped.

That is interesting, @MyOtherCarIsAPorsche. I know a fair few people with EDS, and not one of them has had an easy journey in getting it diagnosed - and some of them are convinced they have it and still don't have a diagnosis, but have appropriate symptoms.
I wonder why docs are so reluctant to diagnose it? It can have serious implications, as you've realised with your DDs!

I hope that, off the back of this episode, your DH and DC can be tested to see if they do have it - at least it will give everyone a heads up for the future!

Oops - xpost there - everything crossed for him that his surgery goes well!

Take care op, sending you and your dh best wishes

@MyOtherCarIsAPorsche Children and young people are often benignly hypermobile, so diagnosing them with EDS can lead to over diagnosis and overmedicalising (which has very negative impacts sometimes).

However, certainly good idea for your adult children to get their hearts scanned. This is normal for adults diagnosed with EDS as issues with the aorta and heart valves are more likely than in the normal population.

Everything crossed for you and DH.

@VeryMuchFlaggingMinty @ThumbWitchesAbroad Because overmedicalising and over-diagnosis are also negative impacts that can (and do) adversely affect people. This isn't the place to discuss it in detail, but if you want more info feel free to PM me.

if you have, or can get, some epsom salts soak in a warm bath, absorbing the magnesium will ease your anxiety a little. It's also important for regulating blood pressure. If no epsom salts it's the perfect excuse for dark chocolate- or eat avocados, nuts, legumes.

Phew, all my prayers for a good op and swift recovery xxx

I had to wait at home with a dangerously narrowed main artery in my heart. I was sent home with strict orders to DH about what to look for. My operation required 2 cardiologists and there were only 2 available at the same time once a week - booked solid. I ended up blue lighted in with unstable angina (a step away from a heart attack) and jumped the queue that way. It is so scary, it feels like we’ve wrecked our health service so much. The irony is, even those clamouring for it to go private - in situations where it is an emergency, and critical care required, the rich are in the same pot.

Well done op xxx

@Innocenta

I completely agree. People can Google a condition and convince themselves they have it or that other people are more ill than they appear. I wouldn't like my granddaughter's teacher to Google suspected EDS as there are very serious sub types. My granddaughter has physio, shoe inserts and pain relief for now. But she has many other signs which are related to EDS - she's being assessed for other concerns commonly co-occurring along with EDS. Her younger brothers are also with the same paediatrician and under investigation.

An endocrinologist originally suggested that my daughters should see a rheumatologist - they were diagnosed in their mid twenties after years and years of symptoms and tests.

I was so relieved when they were diagnosed - we're forewarned now. I just wish the doctors would listen and test us all now. For instance, I have dislocating knees, shoulders and a locking jaw. Also a hole in the heart which is also common in people with EDS. So there are 'signs' on both sides of the family. No wonder my daughters have had quite serious problems as a result of EDS.

I'm derailing my own thread.

@alreadytaken

I had painkillers and two squares of dark chocolate (salty one) when he messaged that he'd arrived at the other hospital.

@MyOtherCarIsAPorsche Not to derail further, but I'm very glad for your daughters that they've been able to have children as so many people with EDS struggle greatly with that. I'm sorry to hear it's still causing problems for most of the family.

@Bunnyfuller

It's a shame that we have to wait until problems become an emergency.

I'm so glad that you got sorted.

I still feel like my husband's emergency happened on Friday and he got bumped off a list and had to hang on (thank god) until today to be in the right hospital.

They originally said his surgery was taking place Friday. Everyone was rushing round and reassuring us that a professor had looked at his scan and was waiting for him at the second hospital with a team - then nothing.

A doctor was telling him yesterday that they would continue to treat him with drugs until he could have surgery at a later date - we were starting to relax as we though next year/5 years and now it's as urgent as it was originally.

It's a lottery if an emergency is going to happen (god forbid). I hope I never need a life or death decision making on a Friday/Saturday/Sunday.

This has been a waking nightmare. This is a waking nightmare. I need more painkillers.

[quote Innocenta]@MyOtherCarIsAPorsche Not to derail further, but I'm very glad for your daughters that they've been able to have children as so many people with EDS struggle greatly with that. I'm sorry to hear it's still causing problems for most of the family. [/quote]
Yes - they both had premature rupture of membranes among other stuff. Their babies had long stays in NICU.

My younger daughter is now expecting twins.

You poor woman, and your poor husband.
I’m so pleased (in a way) that he’s in surgery now and not being fobbed off at least. And it screams EDS at me, for what it’s worth (ex medic).

I think you need to make other plans for your grandchildren this week. I know you want to stay “normal”- that’s always my drive too- but something’s gotta give and it mustn’t be you.

Can you nibble something, anything- tea and toast? Make sure you keep hydrated to help your own BP. This is, as the saying goes, a marathon not a sprint, so please try and nourish yourself even a tiny bit.

@MyOtherCarIsAPorsche seriously you would likely have had the exact same scenario on a Monday / Tuesday/Wednesday that’s what the NHS is like and it’s not due to covid , that has just made it worse , the NHS has been bad for many years IME .

MyOtherCarIsAPorsche stress depletes magnesium levels so when you can eat keep topping up your levels with food high in magnesium. Also seems to be important for EDS according to the Ehlers-Danlos Society

"While magnesium deficiency is serious for anybody, persons with EDS should take note that magnesium plays a particularly important part in connective tissue and collagen metabolism and tissue maintenance in general. Magnesium deficiency may even accelerate aging."

With blood pressure that needs monitoring and this stress you need to be sure you are getting enough. He isnt going to be out of hospital quickly.

Have you joined the EDS society? They have a web page about genetic testing www.ehlers-danlos.org/information/genetic-testing-and-eds/

Hoping you get some good news soon.

@alreadytaken The Ehlers Danlos society isn't a particularly valid source of reliable info; it's a bit of a vanity project. Not saying all their specific advice is wrong, but best to be wary of recommending that people associate with them.

For all the criticism of the NHS - his condition was recognised and is being treated. The service is understaffed and we are in another covid wave. The government expanded medical training but nearly 800 junior doctors had no jobs to go to when they graduated this year. The staff are treated like dirt, they have massive debts from their long training and they could get better paid jobs elsewhere. We get a lot more than we pay for but if you pay for a mini you dont get a rolls royce.

Arent there different types of EDS, so hypermobility, then more of a cardiac one? I think some can be genetically tested for but not the hyper mobility. Dd has eds but was diagnosed in lock down with no follow up. Given a leaflet and discharged! From what inread nothing can be done but this thread has worried me.

Anyway, I’m glad @MyOtherCarIsAPorsche dh is in surgery. I hope he has a speedy recovery.

Innocenta it's the only support group for EDS isnt it? I've been around long enough to see information considered dubious become mainstream medicine sometimes. Not saying that will happen here as I know nothing about EDS but they provide emotional support if nothing else.

@alreadytaken EDS UK or HMSA are both preferable because they don't have the major leadership issues that the Ehlers Danlos society has. Can I ask anyone else who has queries about this to PM me, please? Don't want to go into it here as it's a derail, I only mentioned it to avoid people potentially becoming involved with something a bit dodgy.

Hope things are okay, OP, I've been thinking of you all afternoon.

@QuebecBagnet You're thinking of the vascular subtype. If that was the type OP's children had been diagnosed with, then there would likely have been some effort to establish which side of the family they'd inherited it from.

All types can be tested for genetically except for hypermobility subtype.

Just came on to say we're all still thinking of you and your dh and hope his op has gone well.

Hoping you get good news soon OP.

Thinking of you