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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think my husband is gravely ill at the wrong time?

952 replies

MyOtherCarIsAPorsche · 26/03/2022 13:12

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.

OP posts:
Thread gallery
13
MyOtherCarIsAPorsche · 05/05/2022 11:13

@olympicsrock
@Fraaahnces

He's definitely home tomorrow 🙄

The doctors have been and said they want him to stay another night because his last dose of IV antibiotics is due tomorrow but he can leave tomorrow evening.

On a happier (😬) note, my younger daughter has just had her 20 wk scan and everything is perfect. Twin 2 (head down) was kicking twin 1 (feet down) in the head. Twin 1 was picking their nose and twin 2 scratching their bottom.

The scan was done on a 'super scanner' with a consultant and they had a 3D peek - twin two has (luscious) lips identical to their older sister 🤔

They know what sex(es) the twins are and they told my husband on the eve of his operation as they wanted him to know (just in case).

I think at least one of them is a girl 🤔😬

OP posts:
Fraaahnces · 05/05/2022 12:11

Oh how utterly divine! So pleased all is going well with the pregnancy!Those 3D scanners are much better than when I had my twins! (They were in their infancy - pun intended - when I was pg.) I thought I was giving birth to aliens!!! They had to do lots of scans as they thought DD2 had renal cancer at the time. I think maybe my 3D scan was a bit early (in case I lost her). They became more and more “baby-like” as they grew. Obviously she’s fine and thriving, btw…. (She has a wonky-looking kidney that’s gone off-piste, but she’s perfectly healthy.)

Innocenta · 05/05/2022 15:18

That's such wonderful news about your daughter's pregnancy. Gosh, what a relief to know she's doing well and the twins look so healthy! I'm really happy for her (and you of course!).

olympicsrock · 05/05/2022 19:47

That is so wonderful to have seen the babies and Hera how well they are doing.

Go and see DH tomorrow. If you are really not happy and feel he is very short of breath , speak to the ward sister / manager abs say that you are very concerned as he will be at home alone.
They will either reassure you or agree to keep him another night so Win-win.

xxHurray for a god news day!

CustardySergeant · 07/05/2022 14:35

How are things MyOtherCarIsAPorsche?

Wishing you and your DH all the best 💐

MyOtherCarIsAPorsche · 07/05/2022 17:04

@CustardySergeant

He's home.

We got back from the hospital 8.30 yesterday evening.

He seems to be gasping more than I would like: has to stop and concentrate on deep breaths in/ deep breaths out.

He spent the night on the recliner sofa. He didn't sleep. I could hear him coughing all night.

I bought some extra plump pillows and a V pillow for the spare room, but he didn't want to go up there.

He's quite irritable and short tempered - I don't usually go to bed early (2-3am) but last night I couldn't wait to get away from him because he was upsetting me. I went to bed at 10pm and was wide awake at 2am. I'm extra tired today.

I know there's adjustments to make on both sides.

I've been child minding this morning and I haven't gone home yet because I know friends and relatives wanted to visit. I also know my son has been with him all day.

He shouted at me when I put the white compression socks on because I hurt his swollen leg (he has had a vein removed and has a scar from the top of the inside of his leg to his knee). I obviously didn't mean to hurt - the first one went on ok, but his other leg was bigger.

I'm putting off going home until I get the all clear from my son.

He's organised his visitors - I told him to wait while next week but he didn't listen.

His temperature was 38.6 degrees this morning. I hope we don't have to call the doctor.

His discharge letter says that it was type A dissection.

When I go home I'll have another look - and see exactly what procedure he had.

OP posts:
MyOtherCarIsAPorsche · 07/05/2022 17:04

@CustardySergeant

He's home.

We got back from the hospital 8.30 yesterday evening.

He seems to be gasping more than I would like: has to stop and concentrate on deep breaths in/ deep breaths out.

He spent the night on the recliner sofa. He didn't sleep. I could hear him coughing all night.

I bought some extra plump pillows and a V pillow for the spare room, but he didn't want to go up there.

He's quite irritable and short tempered - I don't usually go to bed early (2-3am) but last night I couldn't wait to get away from him because he was upsetting me. I went to bed at 10pm and was wide awake at 2am. I'm extra tired today.

I know there's adjustments to make on both sides.

I've been child minding this morning and I haven't gone home yet because I know friends and relatives wanted to visit. I also know my son has been with him all day.

He shouted at me when I put the white compression socks on because I hurt his swollen leg (he has had a vein removed and has a scar from the top of the inside of his leg to his knee). I obviously didn't mean to hurt - the first one went on ok, but his other leg was bigger.

I'm putting off going home until I get the all clear from my son.

He's organised his visitors - I told him to wait while next week but he didn't listen.

His temperature was 38.6 degrees this morning. I hope we don't have to call the doctor.

His discharge letter says that it was type A dissection.

When I go home I'll have another look - and see exactly what procedure he had.

OP posts:
CustardySergeant · 07/05/2022 17:58

Oh dear, I'm glad he's home, but that does sound difficult. Have you been given an idea of roughly how long his recovery period is likely to be - or is that "how long is a piece of string?" I wonder how he has got on with your son.
Neither of you are getting any rest at the moment, which doesn't help when it comes to mood. Also, no doubt you are still both quite worried, despite his having been discharged. Here's hoping things improve.

alexdgr8 · 07/05/2022 18:32

do you think it would be useful to pay for a careworker to come in for an hour in the morning, to help him, and take the pressure off you.
they often have tricks with getting the white stockings on, and could show you also.
just a thought. all the best.

olympicsrock · 07/05/2022 21:14

Hi @MyOtherCarIsAPorsche OP, if his temp has been 38.6 and he is gasping for breath he needs to be readmitted tonight I’m afraid. This is either further chest infection needing IV antibiotics or pulmonary embolus.
neither way he needs a review to determine the cause and treatment. Sorry ….
try putting a thin plastic bag ( loose veg bags from supermarket) on before you put the stocking on . It helps it slide on. You then remove the bad through the hole in the foot.

Lougle · 07/05/2022 21:41

I was going to suggest the plastic bag trick but @olympicsrock has it covered.

Please do seek medical attention tonight. He has a fever and sounds very unwell. The irritability is likely because of this (as well as post-hospital adjustment).

Mama1980 · 07/05/2022 22:19

I've just read the full thread and I'm so sorry to hear about all you and your family are going through.
I was going to mention the bag trick too but see it's already been covered. If your husband has a fever I would say he definitely needs to go back I'm afraid, it could be another infection.
I wanted to send you my good wishes and I really hope your husband is soon on his way towards a full recovery.

MyOtherCarIsAPorsche · 07/05/2022 23:30

@olympicsrock

Oh no - he won't like going back. I daren't tell him. His left side, foot to shoulder is swollen and giving him the most pain. Temperature is now 35.8 degrees and he was really sweating/clammy (after eating) when he went to bed at 9.30.

He asked a doctor if he needed more antibiotics before he came home - they said that he'd had large IV doses and finished his course and didn't need any more.

He was complaining that he hadn't had a cup of tea all day and asking me where I've been all day (he knows). When I asked my son why no one had made him a cup of tea, he said he refused all offers of food and drink and has just been sipping orange juice all day. He's so argumentative and I want to avoid retaliating. His father messaged me to say that he thought he was in an angry state, to which I replied with a rolling eyes emoji. I didn't know what to say - it just makes me feel bad (sort of responsible for his rude behaviour).

He's not had much to eat today - the little he ate this evening seemed to make him worse.

His blood pressure was high (which is weird because they were trying to control his low blood pressure - a few days ago) 158/95. It was 132/80 this morning, so that was much higher than in hospital - which was 90/50 at one point.

All he has worn today is a pair of shorts and his compression socks and he's sat within 'aim' of an open window.

He's gone upstairs to the spare room because he didn't sleep last night. I know he's not asleep because I can hear him coughing. He's not comfortable lying down so he's propped himself up.

I can't talk to him without him snapping back at me. He was calling me names earlier because I couldn't find a contraption that he has to blow into - a ball inside a tube that he has to get to a certain level. He must've not brought it home. It's definitely not inside the bags he brought home yesterday because I emptied them - he's had me looking in the car - not there.

I'll go up now and take his temperature (he's had paracetamol at 9.30) and ask him how he feels about getting checked out. I know he definitely will not go to A&E.

I'm drained. I've been so tired all day today, I feel really weak and feeble. It's a huge effort to lift my legs to make them go forward. I can hardly hold a drink without the sheer effort making my hand shake. My daughters noticed this today - they've been telling me to sit down constantly today. I'm 55 and genuinely feel 85.

I'm just drained - empty really.

Here we go .... onwards and upwards.

OP posts:
MintyCedricRidesAgain · 08/05/2022 00:25

I think as a PP suggested it might be a good idea to see if you can get some support with care for the next few weeks or even months. It will take some of the pressure off you and he's less likely to take out his frustrations on someone with a bit of distance.

Will you be doing less childcare now that he's home? As much as you must enjoy them it's so important for you to have a break.

I cared for my dad for 2.5 years...15 months of which was end of life care throughout the pandemic. I have no regrets that I was able to be there for him, but honestly it was the most soul destroying, exhausting, stressful thing I have ever done. It's nearly a year since he passed away and I'm still not quite back on my feet (although supporting my mum since certainly hasn't helped tbh).

Please don't underestimate how important it is that you look after yourself as well as everyone else at a time like this.

Fraaahnces · 08/05/2022 05:37

You need to set some boundaries with him right now. “I’m your wife, not your nurse. If you can’t speak to me respectfully or kindly, you’re not well enough to be home.”
Don't tolerate name-calling…. Ever.
Don’t allow him to wallow in these moods. (Although they are actually pretty common after such a long surgery and the recovery isn’t fun either.)
Get nurses in to help with socks, bring a spirometer (the thing with the tube & balls - he does need that to help expel the crap in his lungs which caused the infection.), help with bathing, dressing, etc.
Your health (physical and mental) is precious too.

olympicsrock · 08/05/2022 06:02

@MyOtherCarIsAPorsche
i don’t like the sound of his very high and low BP. The temp less that 36 can be a sign of severe sepsis.

he does not sound well enough to be at home.
please contact the surgical team who lives after him. At the very least they should assess him.

his BP sounds ok though.

I suggest you call the ward where he was a patient and ask them to get the registrar on call to call you. They should either say bring him back or offer an assessment TODAY.

I am so sorry that you are going through this.

olympicsrock · 08/05/2022 06:06

You also sound utterly exhausted. I’m glad your children are helping. You really need to quiet day just to sleep.
Can you make this happen somehow, maybe for tomorrow or the next day?
If DH goes back in , take a day for you and you only.
xxxxx

MaverickSnoopy · 08/05/2022 06:54

OP I'm quite concerned for you. You sound a bit like me, takes on everyone else to help them because you're the only one there to do it, but don't look after yourself because you feel it's impossible to find the time. You're in such an incredibly hard situation. If you don't feel better today I really think you need to get yourself checked out. I know you want to be there for your loved ones but you don't want to end up being admitted yourself.

As for your husband, I hope he is OK this morning. In light of Olympics comments I really think you need to contact the hospital if you haven't already. My Dad is stubborn - last year he had a bad infection in his knee that nearly turned to sepsis. He wouldn't listen to any of us but thankfully saw the dr who immediately called an ambulance. He needed surgery and in the end was OK. He never would have listened to us though and it was the dr who saved his life. My FIL died from sepsis as it wasn't picked up in time. Perhaps print out the signs for your husband so he can see them clearly.

olympicsrock · 08/05/2022 07:22

By the way, I saw this on a doctor’s forum. There are two national centres for EDS diagnosis London and Sheffield. Both see adults and children .

www.sheffieldchildrens.nhs.uk/services/clinical-genetics/ehlers-danlos-syndrome/

Lougle · 08/05/2022 08:25

I'd also be concerned by the swings in temperature (ex ICU nurse). He sounds pretty poorly and he needs evaluation by someone face to face, IMO.

Matchingcollarandcuffs · 08/05/2022 08:33

unlurking as Ice ben début detailing the thread as I go their EDS diagnosis process but this thread has explained all family deaths and things make a lot of (scary) sense.

@MyOtherCarIsAPorsche completely different scenario but DS was discharged from hospital at 6 weeks old with with RSV bronchiolitis. I had a feeling of utter, unshakeable des with him at home. Finally got him readmitted to hospital and his SATS were 83.

That fear you’re feeling is your intuition, but the clinical signs you’ve observed back you up.

There has been such lovely sentiment in this thread, even though the subject is so scary. Please do see if anyone can give you some respite, and maybe debrief. You have had to deal with a lot but also fight, and the fighting when no one seems to hear what you’re saying really really takes it’s toll.

Hope DH is either in hospital or feeling much better today

Matchingcollarandcuffs · 08/05/2022 08:35

^relurking due to typos

MyOtherCarIsAPorsche · 08/05/2022 10:15

Oh flaming Norah.

He's clattering about in the kitchen.

I've asked him countless times if he wants anything and the reply I get is 'Ffs! I have to do stuff for myself!'

He has diarrhoea, and generally looks ghastly. He has pain in his hip/flank. When I suggested getting checked out - there's no way he's going back to hospital.

He's swearing because the throw is sliding off the sofa and he's constantly standing up and rearranging it. He's breathless.

When I said he may need antibiotics - he replied 'GET ME SOME THEN YOU F*ING BAG!'

I can't watch this - I'm going out.

I don't feel like coming back.

OP posts:
MintyCedricRidesAgain · 08/05/2022 10:25

I don't feel like coming back.

I don't blame you...your DH is behaving appallingly. Of course he's frightened and frustrated but speaking to you like that is just unacceptable.

Assuming he doesn't end up being readmitted - how much support can you family offer you?

A rota of who is there for him so you get a break from him taking his ill health out on you seems essential.

Failing that, please, please investigate the possibility of respite carers.

MuchuseasaChocolateTeapot · 08/05/2022 10:26

Oh @MyOtherCarIsAPorsche how heartbreaking your last post is. Can you draft one of your daughters in for the day to help or at least support you, you do so much for them. Perhaps call your gp in the morning and ask if someone can come out? Explain the state your husband is in and maybe even get some help for you? God bless x

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