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.

Without wishing to pry, can you as a family afford his extra spending? I mean, there are two levels of potential worry here. If you cannot bear the cost as the hit to your finances, that's one thing. If you're concerned about his chance in habits, maybe it is as others have said: he's just had a near-death experience and thinks, what the hell, I've worked hard for my business for X number of years and now I'm going to pay it forward to those I love.

I know things have been tricky as he's been so vile to you, but could you ask him whether he's making up for lost time, or rather for time he's not sure he's still got left?

@friskybivalves

Good points - we are completely unaware of his prognosis. Perhaps @olympicsrock is too polite to speculate and I wouldn't expect her to. The operation was referred to as 3 procedures in 1 - so we know that it was a huge amount of surgery at once. I suppose he had age and fitness on his side. So I don't know if he intends to carry on spending in an extreme manner. The children must be rubbing their hands together in anticipation 🤣

I don't know if the type of surgery has a 'time limit' - he has spoken of 'spending before dying as you can't take it with you' before.

I planted a small seed in his mind about a robot vacuum cleaner this morning - let's see if that one grows.

We've had a wheelbarrow (nothing wrong with the old one), a stubble trimmer and a pool table delivered today. He's expecting another parcel this evening but can't remember what that will be.

I've had a day at home today - he went, with his father, to pick up the car he bought at auction and it's now garaged - it's mint condition! I tidied his paraphernalia which includes tons of instructions and receipts for all his recent purchases. He came home and complained that he doesn't know where anything is now. I've spent the rest of my time in the garden, mowing and weeding and sweeping webs from the outbuildings. There's a lot of spider webs about this year.

I'll probably be in the garden until dark there's so much to do.

I have another day almost to myself tomorrow, just two school runs - my oldest granddaughter is no bother at all and will happily play independently until mum picks her up. She won't allow anyone to join in - she gets frustrated if you say something she doesn't agree with and she won't play games in which there's a winner because she can't stand to not win.

Then the next day to myself is a week on Friday.

It's the gender/sex reveal on Sunday.

It sounds like a couple of days at home is exactly what you need to regroup. Good work in the garden.

I agree entirely with @Reallybadidea that a big part of this behavioural/ personality change ,and slightly odd thinking is as a result of a really long GA and being on a bypass pump ( pump head) . Some of it may be sheer relief to be still here and wanting to live life to the fullest.

DH is an individual so you can’t really generalise regarding his prognosis. There is a big risk of complications over the first 30 days ( you’ve already had the collapsed lung, pneumonia and C Diff) so maybe he doesn’t feel he is out if the woods yet. I would hope that as he has time to breathe and take stock things will improve.

He could really do with some counselling.
Love and strength . Xx

@olympicsrock

He's had a bad day today - he can't open his mouth to speak without coughing which is really frustrating him. He's possibly done too much this week. I'm concerned that he's so out of breath/gasping when he's walking around. He's hardly eating - no appetite. His chest looks sunken, arms and legs look wasted. A neighbour was shocked by his appearance today. On Friday - it's 8 weeks since this happened. The more I think about the delay in his surgery, the more angry I feel - I certainly did tell the first consultant about EDS in the family (I am well aware of the vascular type and complications of connective tissue disorders), the professor at the hospital where he had surgery said if they'd have known about it he would have had immediate surgery. The more I think about the ambulance crew refusing to take him on the transfer - the angrier I get. It was literally a life and death situation complicated by an inherited condition and .... 🤯. My head can't handle it. I know we have a great outcome. I do know that. I'm dwelling on negative stuff and the lengthy recovery and it's just sinking in that - things are different and I have to make huge adjustments. He's just different ...

I remember thinking this about my mum after she had an anaesthetic to manipulate a badly broken arm - then she gradually slipped into the long decline which was dementia. I don't think I like his 'different' - I'm unnerved. He says 'Good night, I love you', to which I reply 'aye go on then', when he goes to bed, it makes him laugh. We've never been a demonstrative family, our parents weren't 'demonstrative', so we've never professed 'love' with hugs and kisses and declarations. I don't like it. He's never said it before. We just know it without having to 'illustrate' it. It's like there's a different person inside my husband's body. But I do like that he's in a spare bedroom - it's a revelation! Is it posh people who sleep in separate rooms? I've had longer, deeper sleeps and I'm dreaming again. It's ages since I've had dreams. I'm not disturbed by his snoring and night wanderings anymore. Separate beds/rooms is the way forward! Some mornings I wake up and it doesn't look like I've been in bed - I must've slept so deeply, I've not moved. The bed looks hardly disturbed. I don't spend anywhere near eight hours in bed because the shoulder pain sets in, but I'm much more refreshed waking up alone.

Rambling .... I apologise. I know. I understand. It's helping just to write things down. I really feel for him being so restricted at the moment. I didn't think I would ever walk upright again after having a hysterectomy - it took ages and ages for the scar to heal and it leaked and got infected. These things take time and hopefully we both have time ....

On a more positive note.

He's not bought anything today (hooray) (so he says) - doesn't look like my robot hoover will be materialising.

I've just watched sewing bee. I'm now ready for a solero lolly. I'm rewatching Happy Valley - so I'll watch a few more and get off to my single occupancy bed.

@MyOtherCarIsAPorsche Please don't focus too much on vEDS! Remember it has not been diagnosed in your family, and the doctor who diagnosed your daughters with hEDS is a specialist (and would have been looking for signs of vEDS). I'm not saying it's impossible to miss it, but vascular problems can certainly arise with other types, and it won't help to fixate on a worst case scenario that, in fact, has some strong evidence against it.

I wonder if your BP will go down now you’re finally getting some decent sleep! I understand the snoring thing. I nearly left my DH because of his snoring. Took 17 years and marriage counselling to accept that his desire to “not feel sexy” while using a cpap machine was selfish on so many levels. (We don’t have a spare room. I slept on the couch.)

I was diagnosed with hEDS yesterday, had an a
Echo and all clear and despite mum and grandpa both having aortic bleeds and several aunties cerebral ones there's nothing to suspect vEDS, purely that any connective tissue can be affected.

Really hope there spending stops soon although trying to guess what it may be next, a boat???

Sleep deprivation is awful! I often head into the spare room when I wake and can’t sleep. I love audio books.

i recommend “Where the Crawdads sing” for a beautiful bit of escapism. Great stories and characters. A little girl grows up in the Marshland of the Deep South and is accused of murder.

definitely get a eufe - tell DH that you really need one now that you have so much on your plate with family Illnes and new grandchildren on the way as well as your bad shoulder. 🤣 we call ours Bob the bot.

Re The shortness of breath - I wonder if DH has a pleural effusion ( fluid in a lung space) reduces the ability of the lung to expand. Very common in this situation. Diagnosed with a plain X-ray and can with treated by putting in a needle to draw off the fluid.

If his appetite is rubbish it might be helpful to give him a small aperitif before dinner (won’t hurt) and make sure what he does eat is high calorie and contains some protein. cheese and biscuits is a good one. Maybe a multivitamin tablet too. Rest and fresh air will do him good too. Perhaps tuck him up under a blanket in a recliner in the garden.
When the dust has settled I will help you write a letter of complaint to PALS - my rant on your behalf about two weeks ago could form the basis of it. You could also get the ball rolling by asking the GP to refer DH and the family to the EDS diagnosis team in Sheffield. I posted the link about a week ago . It will take months to be seen I would Imagine. I referred a patient to general ‘clinical genetics’ and it took about 3 months - so a single national centre will be a longer wait.

I completely understand that you might just be exhausted at the moment. There is no need to do anything at the moment that you don’t feel up to.

much love xxx

Many, many thanks @olympicsrock

In fact, I can't thank you enough.

There's a robot hoover in transit as I speak - Eufy. Can't think of a name yet. He's also ordered a new Honda lawnmower today.

A book was delivered yesterday - husband had watched a Billy Connelly documentary and he recommended this title. It's unusually small print and my husband says he can't get past the first page. I'll have a look for that book Crawdads - I bet I have few that I haven't read. Whenever we went on holiday, I used to take a book for every day we were away. We once went away for the whole of the six weeks holidays - got through a couple of dozen books. I'm not concentrating at the moment - need to watch tv programs two/three times and then I forget what's happened. Even knitting - I can't concentrate enough to knit to my usual standard and the simple stuff I'm doing - I'll sew it up incorrectly and end up unpicking and getting cross with myself. I sewed a sleeve to a neck shaping the other night.

I walked into town (market town) with him this morning - normally a 10 min trot but it took us half an hour at a slow saunter. We didn't need to stop but he was coughing when he tried to talk and walk. We picked up his drugs, had a coffee and sauntered home again.

He's saying he's not so much breathless as it's a feeling of needing to breathe more deeply to clear the pain in his chest - does that make sense?

Hmm - well not surprising that he’s still got pain / inflammation after such a big chest op. Keep an eye on the shortness of breath/ gasping that you mentioned.

really excited about your eufe!
we also have a lawn robot, known as Dave. DH and I are both pretty busy. We used to row that he was too lazy ti cut the grass ( just preferred doing other things and my shoulder cannot cope with lugging a lawn mower around) . How have a lovely lawn robot pottering round, self charges in his kennel, decides looking at the temperature how often it needs cutting and no emptying as he sprays a fine shower of cuttings over the grass as fertiliser. Love it!

I’m also having a down / chill day ( working from home doing a few jobs) . Sadly friend coming for dinner has cancelled. Pink prosecco with kettle chips and special humous and no one to share with….

PS to make you smile. DS aged 6 shared my bed last last. Wriggled quite a bit but as we were snuggling down he said “Mummy you smell more beautiful than the most beautiful rose in the garden”. 🥰🥰🥰

@olympicsrock .
You certainly do.

@olympicsrock .
You certainly do.

Awwwww 🥰

So adorable 🥰

What fragrance were you using ?

@olympicsrock

That took me back - made me think of my parents getting dressed up to go out (rarely happened). My mother's coat smelled delicious. Her perfume was in a small black bottle.

Hmmmm - could've been dark blue bottle now I come to think about it.

Evening In Paris Perfume? my mum's favourite in the sixties.

Or Worth? It was in a dark blue bottle that I think was often circular.

@carbay

Oh wow! I think you're right!

Her wardrobe smelled beautiful - I remember just sitting in the bottom of it amongst her stuff.

Was just my face cream and mummy smell - he’s a little darling

@olympicsrock - that’s the nicest thing I’ve ever heard. I remember wriggling away from my mother because of the smell of cigarettes! (She was a chain-smoker.)
My DD1 asked what perfume I was wearing so she could look up the notes and find something similar but different. (She is very sophisticated nearly 16y/o) and then asked for one of the most mind-blowingly expensive perfumes you could ever imagine for her bday. Wondered why I LOL’d. (She said “That’s a no then?” - Correct.)

@Fraaahnces thanks!
DH comes back from work trip tonight having been away 2 nights. It’s his birthday so I better tidy up , slum sweller that I am!

Dweller!

@olympicsrock

Many Happy Returns to Mr Rock!

@Fraaahnces

I received some mind blowingly expensive perfume once. (Possibly cheap by others' standards.) But like my mother I put it away for best and it's not seen the light of day again. (Probably gone off.) Like the majority of my clothes - including most of my coats. I walk around like a bag lady - trainers without tread, jeans, 20 yr old top. I've just done the school run - vast majority of ladies done up to the nines. Makes me feel extra inferior. I will leave behind a wardrobe crammed with never worn clothes which will end up in a charity shop. I never go anywhere where I can justify wearing anything nice. The gender/sex reveal is filling me with dread - having to think about smiling at wider family and making conversation, wondering what level of bag lady I can get away with without embarrassing my daughters, hoping I can get away with it, without having to shave my legs (Christmas and birthdays).

Robot vac should arrive today - hopefully it will be set up before I get home.

He's not eating - he had two yoghurts yesterday.

Husband told me to make his bed this morning as it was tangled. I haven't been able to shake a quilt for 3 years due to frozen shoulders. I told him to straighten it himself and to sleep 'more straight'. (Like wot I do.) It takes me ages to strip a bed and remake, usually have to ask my daughter to help, but since husband has been home she's stopped visiting because her children (6, 2, 1,) will want to have donkey rides on top of him and possibly knock his spittoon over. 🤢 All beds were fresh when he arrived home, but as I usually wash them every week, I'll have to get used to 'sporadic' until my children are visiting again. He also asked for a cup of tea as I was flying out the door - it was in the teapot. So he's reclined and feeling neglected at the moment. I'm sure he'll be feeling much better when my new vac arrives, along with whatever else he ordered yesterday. The parcels keep arriving.

I’m please you’re reminding him that you are a person and not simply “staff”.

@MyOtherCarIsAPorsche i think you deserve a little pampering even if it is a new bottle of perfume that you love.

I suspect that your family all think you are beautiful inside and out and won’t give a jot what you wear for the gender reveal. They say that we should try to see ourselves how our friends do. I think you are hugely loved even by Mr grumpy pants Porsche

DH needs to eat a bit more whether he is hungry or not!
That grim spittoon needs to bite the dust. No need for spitting at all. In a tissue and down the toilet. No discussion! Revolting habit!

Enjoy the weekend!