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.

thank you for taking the time to update us; we were getting a bit concerned.
hope you are able to get some rest.
all the best

I feel so uncertain and have a sense of foreboding - can't shake it off.

I think utter exhaustion can make one feel like that.
I hope you are able to have some peace and rest and just concentrate on your own needs - just for a while.

OP, thanks for the update. Just to say try not to obsess about the delay in diagnosis. You'll have a lot to deal with in the near future, better not to focus on the past.

It's admirable how you've kept going since March. I hope things get easier and the foreboding stops. Take care.

Rest up OP. I think you’re utterly exhausted; physically and emotionally, which is totally understandable. I think you need some time to process what’s happened over the last two months. I’m sure adrenaline has kept you going, but it’s now time to take your foot off the gas. I urge you to please step back from childminding your grandchildren for a few weeks, to focus solely on yourself. Charge up your batteries; no one can run on empty. There’s no shame in that.

So glad your husband is recovering as well as can be. You’ve been an incredible support to him.

Oh Sweetheart, I wallow in retrospective guilt about my kids too. I know it does nothing to change things, but it’s unavoidable. Had I known that I had EDS when I was young and just how high the inheritance risk is, would I have had kids? No. Do I regret having MY kids? Hell no! I’m so happy to have them. Their quality of life won’t be perfect, but whose is? In the scheme of things, there really are worse things - like not knowing and dealing with catastrophe. My eldest has autism and I think we all have traits and tendencies. But logic and emotion make uncomfortable bedfellows in the middle of the night, don’t they?
Now please tell me (your Aussie friend) What’s an Australian hat??? 🤣

So glad to hear things are relatively ok. You sound rather traumatised by it all though. I wish you could have a chill day like I did yesterday . I did some housework, laundry, shower, makeup, nice body lotion. Watched an hour of gentle tv at lunchtime.
I thought of you watching the sewing bee! some of the sportswear was incredible!

DH sounds like his is at least being less horrible to you even if he’s not great physically. I urge him to take things slowly. His body needs rest more than exercise for the next few weeks.

take care xxx

@Fraaahnces

Is the crocodile Dundee hat an Australian hat? Can't remember his name now. It's a brown leather wide brimmed hat. It's certainly not a fishing hat - they're sort of fabric floppier hats which anglers attach flies (?) to.

I'm quite shocked by the amount of weight he's lost. He was no where near large before the operation. He looks a sight - shorts, white stockings and his massive hat - on a skinny body.

And to answer your previous post - I would love to adopt you 💕

When my children were teenagers, I 'adopted' quite a few of their friends. Still close to some of them. There was also many children throughout my teaching career I wouldn't have minded adopting. I was fond of every single one of my students.

I think that's due to my father being brought up in the care system - his father died when he was a baby, electrocuted at sea on a fishing trawler - his mother had no means of support so placed him for adoption and she disappeared out of his life. Despite his up bringing, which was horrific, he was a fantastic bloke, husband, father. He rarely spoke of his past and how it must have really affected him, we'll never know.

My husband is buying more sports clothes online at the moment, he's never worn sportswear before. He's also bought an expensive pizza oven and two boxes of wood chippings - pizza oven fuel. He's gone off the rails. It's because he wouldn't normally sit still for a minute, he's forced to be at home and he's probably bored out of his box - my mind boggles at what else he's doing to fill time online when I'm not home.

The part of the house where he is spending most of his time (which is the grandchildren's playroom, complete with fully reclining leather sofa) is getting increasingly messy which is slightly rankling now I'm home for the day. Throws, cushions, pillows, cups, glasses, bags of drugs, newspapers, books and, most vomit inducing, a spittoon for the gallons of phlegm he's hoiking up. This noise is what's waking me up several times during the night.

Changing the subject - I've had frozen shoulders for the past three years. When one shoulder was improving, the other shoulder became frozen. I have a sinking feeling that my first frozen shoulder is going back into the freezing process again. I can't bear the thought of this on top of everything else, I can only sleep on that side as it is because my second frozen shoulder is still painful - I don't have 50% movement yet on the right side and my left side is feeling like it did before it froze back in August 2019. I can't reach high shelves, behind my back, dressing is painful and even driving makes my arms/shoulders ache. I've had hydrodilation with steroids 4 times - two each shoulder. The last one put me off ever having it done again - agonising. I'll have to wait and see ....

I'm moaning all the time - what a moaning thread!

On a fabulous note - my youngest grandson (awaiting results of his EEG) walked four steps yesterday 🥳. He is 18 months old on Monday.

I would love to keep in touch.

@olympicsrock

He's doing plenty more than I think is good for him. I'm at home today and he's driving me berserk. I've been working since 6am - and he's up and down, in and out just irritating me. I'm finding it hard enough to concentrate and string a coherent sentence together in response to my student's submissions as it is. I have to wrack my brain to find sensible, supportive academic feedback. And he keeps coming to tell me inconsequential stuff and nonsense.

I'm treading on eggshells - I don't think that I've ever spent long periods of time with him before , now I come to think of it. We usually sit side by side for a couple of hours on an evening in silence and then get talking about family stuff in bed for an hour or so before we go to sleep. He's always worked very hard, always occupied with one thing or another at home, generally doesn't sit still, always busy (despite never actually finishing jobs at home, also know as half a job H***, as our surname starts with an H).

This is alien to both of us.

He hasn't apologised in as many words but has said this morning that he's feeling like his brain is out of control and he thinks that it's because of pain which is 'full depth' in his chest.

He is intending to attend the gender/sex reveal doo (for our daughter expecting twins) which was cancelled a month ago, on the 22nd. The following weekend he has booked tickets for himself and his father who is 80, to go to London for some rugby match final.

He asked me to take him to a sports shop this morning (he's definitely not right) to which I said I was too busy and he already has enough new stuff strewn about his 'ailment zone'. I suppose it's his way of coping with 'not doing much'. He's mistakenly ordered a small T-shirt online instead of a medium and wants me to rectify it - I told him to leave it as it'll probably fit him and his tiny sunken chest. We then burst into hysterical laughter, which brought on another one of his bad coughing doos. So there's the old dark humour which is still with us.

He's doing really well. He can't help pottering about - most definitely not in his nature to be still, and I can understand how that must be frustrating. We're both having to quickly learn and adjust to what has been forced upon us whilst both inwardly rebelling and I suppose there will be more 'sparks' to come.

We are both eternally grateful to the talented people like yourself who have given us another chance - although at the moment I feel like we are making a mess of it.

I will be eternally grateful for your brilliant support and advice.

To everyone on this thread - I have read everything - thank you all so much for taking your time to respond. Platforms like this are so important for everyone to share their experiences. Humankind is purely good at heart - those people who behave differently have trodden different paths and are the products of their experiences. (Not trying to condone poor behaviour but perhaps justify it.)

I do try to remember that - I will try harder to apply that when I'm at the wrong end of my husband's mouth.

You both have been through so much. Can you have a nice, quiet day together tomorrow in the garden?

Introduce him to Mumsnet (classics) but don't tell him your username.

@MyOtherCarIsAPorsche you write so eloquently and paint a vivid picture of DH in the hat and stockings. Wonder if you are an english teacher? My mum is a little like you - my friends all loved her when I was a teenager.
God I can really imagine the pit of doom with strewn tissues and a grim spittoon! When I was at a med school, I enjoyed everything apart from respiratory medicine and all the revolting coughing and hacking up phlegm. Give me poo wee or blood any day.

I sympathasize massively with the shoulder problem - I also have one and have had my shoulder injected 12 months ago. I’m desperate for a repeat it worked a treat.
DH sounds like he is simmering down a little TFFT!! The shopping all sounds rather bonkers but perhaps he’s just glad to have another chance.

Really hoping you have a chilled restful weekend with some laughter.

xx

I’m with you @olympicsrock … I can handle all the poo, spew and pus… Sputum, however… 🤢🤢🤢. I even gagged when my babies were teething, and the slow-mo of the dog in Turner and Hooch with a string of saliva swinging as it ran, getting longer and longer with each step.
@MyOtherCarIsAPorsche , have you learned how to PM yet? I’d like to keep in touch too. I shall pm you. X

I’ve really enjoyed chatting too ladies xx

@olympicsrock

Aye - language and literature (BA) grad. Leeds University. Lifetime ago. Also Bretton Hall, also known as, Yorkshire Sculpture Park - where I did most of teaching part. I believe that campus is closed now.

I remember vividly being in the huge library and picking up a random journal and reading a published paper about a study on the link between hair growth and intelligence. It concluded that those with fine/no hair are more intelligent than those with thick heads of hair. There was an extensive scientific justification which sounded very plausible. I wish I'd have photocopied it as when I mention it - no one now believes me and I've never found any similar hypotheses. It was probably disproved along the way - but a few of us took pleasure in showing this article to our literature tutor who had the most hair follicles ever and was always running his fingers suggestively through his luscious mane. We language students were always correcting his grammar on the blackboard (no whiteboards then) and running rings around him in any debates. I bet he was glad when our cohort left and he could then pontificate to a different bunch of simpering school girls. He tried too hard - I get the ick thinking about him. He had self published a slim volume of poetry, which he would try to sell to all and sundry, and thought he was a deity. He once took us outside at Bretton to write poetry where we were overwhelmed by the pungent odour and volume of fly blown duck poop - he wasn't impressed by the amount of rude limericks produced. He was probably trying to generate ideas for his next massive tome. He met my then boyfriend (now husband) at an end of semester bash and asked me if he was a 'social experiment'.

Those were the days.

Rude git! DH has no hair so would like that paper!
Funny that I had you sussed as an English teacher!

Glorious day here today. I took the boys swimming ( two boys aged 10 and 6) and did something very exciting. I have bought….. a wetsuit for me! Brilliant lady in SUP shop helped me fine something comfortable that fitted my curves ( ahem) . Also bought the kids life jackets. We moved to the seaside last year.

Tomorrow I am doing a wellness beach morning with yoga , sea swimming and sauna. I am trying very hard this week to look after myself a bit better as looking and feeling a wreck.

Just for you guys…. I know you will share my pain. X

Rude git! DH has no hair so would like that paper!
Funny that I had you sussed as an English teacher!

Glorious day here today. I took the boys swimming ( two boys aged 10 and 6) and did something very exciting. I have bought….. a wetsuit for me! Brilliant lady in SUP shop helped me fine something comfortable that fitted my curves ( ahem) . Also bought the kids life jackets. We moved to the seaside last year.

Tomorrow I am doing a wellness beach morning with yoga , sea swimming and sauna. I am trying very hard this week to look after myself a bit better as looking and feeling a wreck.

Just for you guys…. I know you will share my pain. X

Whoops sorry!

@olympicsrock that's what I call 'Plural apostrophe-itis' to my students And you're right, it's endemic (and I'm sorry, but it's also really annoying - but I know we're not allowed to say that here )

OP - from one English teacher to another, you've been through so much with your DH, your DC and your DGC. I've been following your story for a while, but haven't contributed until now. But I just want to say I'm in awe of your strength. I know you'll 'keep going' because you have to, but please do try to take some 'time out' for yourself too.

"It concluded that those with fine/no hair are more intelligent than those with thick heads of hair."
That just made my day
Aaahhh believe, Aaahh believe....
Im going to dine out on this🤣

well low-brow means not very intellectual, and it relates to the hair growth line, being nearer to the eyebrows.
so high-brow is farther back, becoming thin, whispy, until the hair departs the crown, being reduced to a monkish border at the side/back.
old lore often is later proved to have more than a grain of truth.

@Mix56 Yes - it's utterly true! My uni friends and I refer to it frequently.

@olympicsrock - it takes all my strength not to be pedantic now. My older daughter is dyslexic - I roll my eyes at her WhatsApp messages all the time, but she's very resilient and we are often hysterical with laughter at the extent of her written words. She passed her driving test first time - the driving instructor reinforced the terms left and right by pointing in the direction of travel for her. Jokes go completely over the top of her head. It took us ages to work out why we'd had no correspondence from her college - the letters were going to number 19 and not 91 - she reverses everything, including initial sounds. So we have par cark, shield of feep, dicker of vibley (my fave) and many more. She also sees words as colours - you can't catch her out. She had deep red lenses in high school to keep text from moving about but when the other students started calling her Captain Sensible she refused to wear them again.

I hope you have a fab day tomorrow. I can't do saunas - they make me faint. Heat has always done that to me. It's a great excuse not to do the ironing - I have fallen and burned myself too many times. My daughter (twinny) lives close to the coast - just a 15 min drive. Husband and I used to canoe there before we had children. We bought a static caravan in Northumberland last year - it's on a remote site. I've only been twice. Other family members have used it more than us. We were about to get some decking sorted for it when my husband became ill. During the windy weather last year, the site had a few fallen trees, we escaped damage narrowly.

I'm not doing much tomorrow, I have some work to do, Sunday lunch - and apart from that I will be sat knitting and watching Columbo. I need to stay off my legs so that they get a little rest - my legs and feet are so painful. I mainly feel like I'm shuffling - I know I look so miserable out and about and have had plenty of 'cheer up it'll never happen' comments - but the pain is obviously reflected on my face. I caught sight of my reflection recently and I saw my father 🤔

I've just refilled husband's pill sorter thing from the drug list on his discharge letter. It says: admitted from home with known type A aortic dissection for repair of dissection. Underwent ascending aorta replacement, debranching of the left bracheocephalic, left common carotid artery, vertebral artery and left subclavian artery and frozen elephant trunk replacement of the arch of the aorta (zone 2).

From his first discharge it wasn't clear if he had type A or B as it said type A/B.

He's found out today that he's had C-diff. and has a card to show in case he needs further antibiotics.

Several parcels arrived today - sports clothes, clotted cream shortbread and some sort of shaped ring for him to sit on as he has developed callouses on his behind bits - he's very sore.

Below is my latest cardigan after completing two white hooded jackets.

That cardigan is beautiful!
I did wonder if it might be C diff given all the antibiotics he’s had for his gut and chest recently. He was a sitting duck for it. Can be really horrible and the smell as I’m sure you know is something else…. It’s highly contagious and isn’t killed with alcohol hand gel so make sure that DH uses a separate loo / bathroom to the rest of you, massive hand washing , wash all the towels at 60 degrees etc.
I like the sound of clotted cream shortbread! Xx

More pink! (Hint?) What will you do with the “wrong” coloured cardis? Give them to a shelter? Sell them? (You absolutely could!)

@Fraaahnces

The pink came from trying to decipher the 12 wk scan. We were looking at nub theory stuff online and we decided that one of the babies was clearly a girl 😬

Then my husband became ill. At 16 wks the gender/sex reveal was cancelled. Then the night before surgery my daughter went to the garden area of the hospital to see her father and told him the sex of the babies. She wanted him to know.

During his recovery my husband told me that she had told him. I asked him if I was wasting my time knitting pink and blue in equal measure - he said at least one of your colours is wrong. Then I switched to white yarn. Now I'm back on pink. Later I will return to blue as I have more pink than blue now. I'm hedging my bets or possibly wasting my time. Any spares we don't need will go to a charity which I knit for when I'm not knitting for family.

My grandson is not quite right today. At bedtime yesterday my daughter took his padded helmet off and he immediately launched himself into the corner of a piece of furniture. He had a nasty bump. He didn't settle - crying unless held. He finally sort of settled at 12.30am. He woke at 5am crying. He has had some liquid coming out of his ear - on the bed sheet, on a muslin square and dried bits (like a tear trace) around his ear. She's saying that he's pottering around as usual but frequently going to her and staring off into space for a while - she's sent photos/video, he has a blank expression. We've no idea what to make of it. No crying, no temperature. She rang 111 about 6am and is waiting for a doctor to call back in the next 12 hrs.

My husband doesn't want me to go round because I was there all day yesterday.

I would probably take him to A&E. My children have had many head injuries and we've always been told if there's fluid coming from ears or nose then it's A&E. I was told that at Paediatric First Aid training too. I hope he's OK. I'm so pleased to hear your DH is doing better.