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.

@LetitiaLeghorn

Yes that's it!

I was wondering whether the operation had affected his brain. He was really scary paranoid.

I asked to speak to the doctor but was told they were too busy.

Please don’t worry about what he’s saying. When my DH was in HDU the nurse rang me to say he wanted to speak to me, so presume he pestered them. When I spoke to him, he really wasn’t making sense. I just told him we were all ok and not to worry. Now he doesn’t remember what he said on those few days. He got his phone back when back to his own room 2 days later so could speak longer then.

Paranoia and delusions are very common after very long surgeries like this. I was yelling very loudly to all and sundry that I couldn’t breathe and I was being put to sleep like a dog. (Obviously logic dictates that you can’t yell if you can’t breathe. Am utterly mortified now.) My grandmother’s racism and rabid religious obsession came out to play… she told all the nurses that she had a man with a deep complexion under her pillow and he was very pleased to see her.

No, no. It's really normal. After just a few days my mum no longer considered the hospital were employing serial murderers. 😂 I knew she believed it but she was so extreme with her covers pulled right up to her nose and her beady little eyes darting here and there, that I had to try really hard not to laugh. When the nurse tried to reassure me that they really weren't trying to kill her, I actually did laugh. I did confirm whether this was common and she said yes. Very common. And like I say, don't worry if when you speak to him in the morning, he's his normal self and by the evening he's getting paranoid again. It just happens because they're tired abd they still have anaesthetic in their system. It must be awful for them because they really believe it, but you're not going to persuade them different and they might even tie you into their delusions. So just ride this out and he'll be back to normal really quickly. x

@MyOtherCarIsAPorsche My dad thought there was an ongoing terrorist attack on the hospital (there wasn't) and that the doctors were all MI5 or similar (highly doubtful) He insisted they were plotting at the foot of his bed (ward round) on how to overthrow the government...I think it's the anaesthetic.
He also didn't know we'd visited him the day after his surgery, or the next 4 days after that. He didn't even remember being in that hospital (he was transferred to a different one after 6 days) and asked why we'd not been to see him.

When I had back surgery and could see green and pink dancing penguins around my bed when I woke up...

I've had surgeries and nothing so exciting happened to me. 🙄

I've just found out that he's had the arch and half the length of his aorta replaced. So he must've been type A. It said type A/B on his discharge. The bottom has been left as it is for now but could require further surgery at some point. The doctor said that the top was worse than they thought.

That's such good news that surgery was a success. I hope you've got more chocolate cheesecake, this definitely calls for a slice
Hopefully you can visit before too long, but it must be awful not being able to.

IME morphine can also make you paranoid /hallucinate/loopy .So he may not quite be himself for a while if he's having that as a painkiller .

So glad he's through the op .

@comfortablyfrumpy

There may just be another slice for later 😬

I'm sure the delirium will wear off once he gets his bearing and they reduces the drugs.

I had a hilarious morphine induced convo with my dad once...he kept telling me he needed to get out and go home but he couldn't because the staff had confiscated his passport.

I tried steering the conversation elsewhere and he appeared to be quite lucid, so for fun I asked him what he'd do with a big lottery win...

"Bribe the British Consulate to sort my bloody passport out!"😆

After my mum had heart surgery she thought she was been experimented on in a animal hospital. She really believed it. I tried to convince her saying we were in a hospital well known to us and she said they have tricked me. She was so frightened she did not want me to go to the loo. I had to give her my handbag and coat before she would let me. The next day she was back to normal but it is very upsetting to see your normally sane strong mum like that

@MintyCedricRidesAgain

😂😂😂😂😂😂

OP, the paranoia can be really frightening, for the patient, (& unaware onlookers!,) the staff are completely used to it.
My Dd, called me at 6am & was terrified, said she was being spied on, that they were going through her things stealing.
She wanted me to come & check etc
She shouted at the nurses that she knew who they were & would have them sacked. & lots more
She was completely mortified the next day !
I took the nurses belgian chocolate biscuits to apologise

When my Mum was in ICU she saw rabbits around the beds. She said she knew they couldn't really be there, but she could see them nevertheless!

Regarding the Type A/ B thing ….. this is sometimes used to describe that the dissection started after the left subclavian ( far end of the arch) but then traveled backwards to the aortic root. So not a true type A but had the consequence of needing the whole arch replaced.
the elephant trunk bit means that a long end of the graft is left dangling inside the aorta so that the graft can be adult be extended at a later date if need be…

hope that is helpful OP….
have been thinking of you .

I really hope that tomorrow he's more coherent and less panicked. It must be such a shock to the system for both of you! I'm so glad the surgery went well

When my Dad had (non heart) surgery he was very paranoid afterwards for about a day. He also slurred and didn't sound right at all for about 5 or 6 days afterwards. I remember the nurse saying it was from the high dose of painkillers and my Dad saying he wasn't on any painkillers.

I'm so pleased for you all that he's finally had the surgery!! I have everything crossed for you that he's on the mend now.

That sounds positive. I hope all goes well from now on.

I have followed, but not posted. Nothing useful to say.
BUT, I did want to say how much I have enjoyed and appreciated your posts @olympicsrock
You are immense 😁

That is very kind of you Ratched. What is a surgeon supposed to do when on call and between cases if not a little mumsnetting! 🤣🤣

@olympicsrock - absolutely second @Ratched

The talent and genius of surgeons - truly phenomenal people!

Got to speak to one of the surgeons today. The operation was just over 10 hours. The first part of the aorta was (can't remember the term) huge and thinned out. There was damage between branch one and two. The third branch shouldn't have been there and the worst damage went from the fourth branch all the way down the aorta. The elephant trunk procedure is left so that it can be extended if required in future.

The operation was much more complex than first thought. And the most bloody annoying thing about it ....

If they'd have known about the diagnoses of Ehlers Danlos in the family, they would have operated as an emergency more than a month ago. He said they wouldn't have sent him home. The thing is, I mentioned this immediately on my arrival in resus on the 25th March. The consultant agreed that it was relevant and said to get the children tested. I told the first consultant about EDS and my husband's hernia operations.

Today, he had a collapsed lung and has an infection in his other lung. He can't stop vomiting. His hands and feet look like balloons. His pain is through the roof. There were 5 different drugs in syringe pumps at the side of his bed and several bags of fluids hung up behind him.

On the positive side his chest drain was being removed as I left and he now has a pulse in both feet.

He will definitely be in CICU tomorrow - so that means I can see him again.

Potential damage with regards to my children and grandchildren seems more real now. I don't know how to go about getting them checked - one of them is halfway through a pregnancy with twins.

I need cheesecake.

@MyOtherCarIsAPorsche If the family can afford it, the quickest way to get checked is to book in with a private cardiologist who will be able to advise on exactly which tests are needed (and arrange them privately at further cost if desired). I don't normally like to share doctors' names publicly but given the stress of your situation I'd be happy to do so if it would help? Of course I understand if you'd prefer to stick with the NHS!

Huge piece of cheesecake I think!
Ruddy unbelievable that this surgeon says they didn’t know that there is a family history of a connective tissue disorder. This is a fundamental part of the history in an acute aortic problem. The mind boggles.
When this is all over, they really need to examine what went wrong here.

In this cases , the communication and transfer pathways in this regional network broke down. In the knowledge that he was an aortic dissection patient with a family history of a connective tissue disorder there was a high chance that he would fail conservative management. He needed an ITU bed at a specialist centre from Day 1 . There was an unacceptable delay in that transfer.
Secondly , despite poorly controlled pain and blood pressure ( both risk factors for a dissection extending) they managed him remotely in a spoke hospital rather than at a specialist centre in a high dependency unit. They had a duty to exclude this, given his very high risk and missing this diagnosis in the setting of gastrointestinal symptoms COMBINED with symptoms of an ischaemic limb is really difficult to understand.
Throughout this process , the team have failed to communicate effectively with the patient or family. This is the reason why they missed a fundamental part of the history.

OP - you are welcome to cut and paste this into your letter of complaint. Flaming Nora!

OP - your GP should refer all your children to your regional genetics centre . In our region there is a form that GPs fill in specifying what the concern in . They should also have an echocardiogram to look at their aortic roots. You don’t need to worry about grandchildren as yet unless their parents are affected .

Re DH - The lung issues are worrying although almost expected in this situation, very good news that the chest drain is out.

Don’t worry at all about the swelling , this is a result of all the fight or flight hormones and is completed expected after an op like this. Around day 7 or when he starts to get better he will start peeing for England ( or like an elephant) and you will know that he is on the mend.

Your pregnant daughter should be investigated sooner rather than later. She needs to contact her obstetrician tomorrow or Friday to discuss it. They should organise an echo and should have her flagged as high risk with a first degree relative with probable connective tissue disorder / EDS and twin pregnancy.

sending love and strength xxx

@olympicsrock

How can I ever thank you?

You are an amazing person.

Thank you is not enough.

Now, how can I tell my daughter gently?

Honestly no need to thank me .

You tell her that it isn’t certain that dad has ehlers Danilo’s but that it would be sensible for her to get checked out as ‘it is better to be on the safe side” when she is carrying two precious babies . The more information the doctors have the better they can look after her. If DH does have it then the chance of DD being affected is 50% . It would be good for her team ( and you/ her to know this Information, if only to put her mind at rest. They sometimes choose an earlier c section eg at 37 weeks as pushing / very high BP can cause problems.

she could also go to the GP , talk to them and get her BP checked. They can contact the obstetrician if she doesn’t feel up to it.

I know that me telling you this information will be stressful for you at this time but I think knowing that you are being proactive and doing the right things might help. Xx

Pregancy is a high risk time for complications of connective tissue disorders to occur. I know your family has a huge amount to worry about this week but do get the ball rolling with this. At the very least , it will keep you busy and you will be able to sleep ( a little) knowing that you have flagged it up.