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.

Oh gosh what a mess. Keeping you in my thoughts

I've just rtft. This is horrific. I'm no doctor and I don't know what your health problems are but even without those you've been dealing with the shock and exhaustion from what's happening to your husband, the shock from your grandson, a huge battle with the doctors, general exhaustion and somehow continuing to look after your grandchildren.

I think you need to get yourself to the doctor today. Explain about your heart stopping, the dizziness, the nose bleed etc - it may all be connected. My parents were both in hospital last summer with the same thing - the chances were virtually impossible and it was very hard at the time but the last thing you all need is for you to be admitted to hospital. I know this feels like another thing to deal with and you're too exhausted to think about it, but you must.

I think your children need to find alternative childcare ASAP. The local authority usually has a database of nurseries and childminders. There's often a local Facebook page where you can find availability/recommendations. You're doing too much and you need rest. I'm an ex-childminder with connections across the country so if you need to know where these things are in your area I can find out.

Re your husband. I think you need to push harder. My daughter had surgery a couple of years back and honestly they just kept cancelling until I pushed. I was firm but polite. Unfortunately it often seems that others shout louder. My mum used to work for the NHS and agreed.

I'm wishing you all of the luck and well wishes in the world.

This thread should be sent to the PM, the Health Secretary and everyone in government who have approved cuts to health and social care spending in the last decade. It's an outrage.

I'm so desperately sorry for what you're going through OP. Wishing you and your husband well 💐

Whatever happens,

Dont let him discharge himself, because he will just end up at the back of the queue again.

Sending strength, OP ❤️

I'm so sorry that your still waiting for your husband to have his surgery OP, and for all your other worries. I'm not at all surprised that it's taking its toll on your health, too.

This is a shocking indictment of how the NHS has been pushed to breaking point by years of under-investment and bad management.

Please take care of yourself.

Its a shame, the NHS is no longer fit for purpose unfortunately. Can you imagine if you were alone, a single person with no kids or immediate family around to fight for you or your rights if you were sadly not in a position to do that for you?

Absolutely! I'm not keen on the newspapers picking up content from Mumsnet, but this story, and so many other NHS fob-ups reported on here, definitely needs to be shared. The NHS cannot be allowed to tick on in this state. People's lives are being jeopardised. We should all be outraged.

I’ve just read your heart breaking thread @MyOtherCarIsAPorsche . I’m so sorry and sad for you, your husband and your extended family. What an absolutely horrific situation to be in. Please try to get some support for yourself! I have no other words but wanted you to know I’m wishing you and your DH all the best. 💔💐

I've read this thread with absolute horror. I suspect it's pretty awful for the hospital staff too - not that that's a lot of help to you

Op similar to what your husband is going through happened to me. I’ve sent you a PM

Completely agree. It's a terrible and frightening situation. I am so sorry for you and your family OP. It's shocking. Our NHS is moribund by awful working practices and protocols and grossly underfunded by the government.

I can’t believe this is still going on. You poor, poor things. It’s cruel for all involved. No words. Sounds very much like classic EDS complications to me. I hope your poor husband has his surgery very soon. This will probably all be too much to absorb right now, but I think after this, you should demand that your DH, your kids and grandkids should all see a rheumatologist and have ECG’s and ultrasounds performed of your heart. (I was diagnosed at 48 when my thumb kept dislocating, and after reviewing my medical history, the hand surgeon organised the referrals. I have a bicuspid aortic valve - which is the most common cause of an aortic stenosis. My three kids have all had heart scans and been cleared, but each kid has different EDS symptoms and has been told that their aortic valves can still fuse at a later date.). (Bicuspid Valve Disease is now considered to be a connective tissue disease also.)
Not enough is understood about EDS and the Beighton Test is simply not enough to diagnose.

Oh, OP! What a horrific time you’ve been having. I’m so sorry. Please take care of yourself.

I'm so sorry I hope things are moving now. Sadly, and scarily, it is a definite postcode lottery, treatment varies depending on the trust you're dealing with. Don't worry about being a nuisance, keep calling, yes, they're overworked and under resourced and no, it's not the fault of the person you're speaking to, but at the same time, you have the absolute right to keep shoving them until you get answers and action. They know you're scared and desperate and they know you deserve better. The problems are further up the line, an operation means not just the surgery, but the aftercare - they can't do the surgery until they definitely have a high dependency bed available. Sending best wishes to you both.

@Fraaahnces The Brighton test alone isn't used to diagnose EDS. Let's not get the thread derailed again with another EDS discussion when OP and her family are going through so much.

*Beighton

Sorry, nailed by autocorrect yet again

Just realised how old this thread is, sorry. A lot of the advice stands though - don't stop bugging them, you deserve all the information available.

Yes I know and I was autocorrected again. GP’s often get stuck on the BEIGHTON scores and then spend the remainder of the allocated 12 mins lecturing their patient about the evils of Dr Google. (I have been that patient and I am also deeply suspicious of self-diagnosis. I have worked as a phlebotomist for years and am studying nursing.)

*wasn’t being a smartarse. I just used capitals to avoid the autocorrect monster

Have been following your thread since the beginning and when I saw it back in trending I sincerely hoped that you were reporting that your DH had finally had his op and was on the road to recovery.

I am so SO angry on your behalf - he's been shoved from pillar to post and you both must be utterly exhausted, I'm really not surprised you're having physical symptoms - the stress must be immense.

He must not leave the hospital though - if he suddenly becomes acute it will be an emergency and will need immediate treatment.

I understand that he’s frustrated/upset but what is he hoping to achieve by trying to leave?

I'm so sorry to read your updates OP.

My own DH has been waiting for cardiac surgery since last October, he was a "priority" apparently but he's still waiting. We've been given a provisional date for end of May but he's not holding out much hope. We can't even go private as it's a procedure that he has to go out of county for and it's not offered yet at private hospitals.

Covid has been the perfect cover up for the state of the NHS

He’s probably in a state extreme fear and is trying to retreat to a place of safety his home, it’s not logical but it is his reaction.

I've just done the same. I'm so sorry OP, I was expecting your DH to be well on the way to recovery now. Hoping that something happens for him soon.