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.

You too @olympicsrock have a fab weekend.

Look what arrived!

That robot will be very helpful to you. It sounds like your husband is asking for your company and attention (not doing it in a positive way, clearly.)

could you get someone in, to help with domestic and/or caring tasks.
might take the strain off both of you.
all the best.

It’s Twin Announcement Day!!! (I’m ridiculously excited to discover what colour cardis will be required!)
I hope you have a lovely day @MyOtherCarIsAPorsche . Please try and let people DO things for you.

@Fraaahnces

Well the knitting won't go to waste - boy/girl twins! 🥳

I dragged out some outfit from the depths of the wardrobe and we both scrubbed up well.

The party is still on going - we stayed 2 hrs because H became tired. He's having dizzy/feeling faint doos.

My feet hurt from wearing actual shoes.

Relaxing outside with a coffee - I'll have an hour to myself.

Wonderful to have a boy & a girl 🥰 so nice that you are feeling happy. Hope you savoured that hour!

Congratulations! What lovely news.

Hope you enjoyed your coffee!

Twins like mine! Congratulations @MyOtherCarIsAPorsche!!! They’re the luckiest babies in the world to have such a fabulous grandmother!!! Btw, from what I gather, B/G twins are the best way to be twins as less psychologically intrusive. They’re not expected to be the same person and rarely dressed the same. (You’ll still get idiots asking if they’re identical even if they are obviously different sex/sizes/colouring, and if they are “natural”. People have no manners.)

I thought boy/girl from the 12 wk scan 😬. I'm usually crap at nub theory but I looked at loads online.

My other daughter had two boys in 2020, 10 months apart - she gets asked if they're twins all the time. The youngest has just had epilepsy confirmed (over the phone). A specialist will ring her this week - why is everything still 'over the phone'? The next step is an MRI.

Husband has gone to see the GP this morning - his blood pressure didn't get higher than 74/54 yesterday - despite the excitement of the big reveal. He didn't take the bisoprolol this morning. He felt dizzy, faint and out of breath all yesterday. He said he felt like a party pooper as we had to leave after a couple of hours - he normally has to be dragged away from a party.

I'm a bit worried as he is going to London this weekend to watch a rugby match, in fact I think he said there are two matches (with his father who is 80). They are travelling by train. I don't think that he's well enough.

I thought he was doing really well when he first came out of hospital but he doesn't seem to have made progress? I'm thinking it must be a month now since surgery. His check up is 20th June - so a while away yet.

My cousin had boy/girl twins. My great grandmother had three sets of girl twins (non identical).

@legosnowqueen @MintyCedricRidesAgain

I had a short nana nap - woke myself up with a hideous and high decibel snore. A whole 5 mins had passed. 🤣

@MyOtherCarIsAPorsche In a lot of ways, over the phone can be a good thing! It's much safer in terms of avoiding exposure to pathogens. I actually 'saw' some of my consultants over the phone even before Covid, as going to hospital is exhausting and risky for me (unless I have to be there for specific treatment/tests). I hope the little one's MRI is sorted soon! And huge congratulations on your very successful knitting

That's lovely news. I do hope you won't be asked to look after these two as well!

Your H's plans sound ludicrous folly with BP so low!

Speaking of BP, have you made that GP appointment for yourself?

Thé robot cleaner looks fun, but one of the best things I ever did was employ a weekly cleaner, a human one. I wish I had done it years ago. I can hear her now, hoovering downstairs, then she will do a deep clean in the kitchen and a dust and polish in my study.

Is that something you would consider? I pay a retainer to the cleaning company so there are never any gaps for hols or sickness, then 10.50 an hour to the cleaner herself.

@Innocenta

Yes - they won't have all the information until the MRI results are ready I suppose. We now know he has epilepsy but are left hanging as we've had no direct information on how to react/cope with the episodes. Not seen a specialist with regards to this.

We are thinking that he's had this a long time - most of the episodes are very subtle and we think connected to tiredness and sleep. We've looked at detection equipment for cots/beds - but don't know what to get for the best.

But we think he has lots of other things going on. It's frustrating. Mum was very unwell with covid when she had him. He was born at 32 wks. We knew there was something amiss when he was 8 wks. There was a zoom check up at 12 wks which was Feb 2021 - hypotonia was mentioned at that stage. He has not met any milestones taking into account his adjusted age. The HV team were non existent after he was born. He had his 1 yr review recently (almost 6 months late). It took from Feb until late December 2021 to actually get him seen in person. We are now awaiting numerous appointments from that first 'in person' visit. It still doesn't feel right considering he was a premature baby. He seems to have been overlooked.

He still is not sitting reliably - he throws himself either forwards or backwards and hurts himself - he has a soft helmet which he wears during the day because he's usually covered in bruises as he is constantly bumping into things and falling as soon as he tries to pull himself up. He was commando crawling before he could sit up. He first began to get the hang of sitting at 12 months - but he never learned to steady himself with his hands/arms so he's unbalanced.

A physio (who got him the helmet) went to his home about four times and 'played' - that was it. No advice for strengthening exercises or any exercises done with him whilst she was with him.

He refuses to walk holding his hands - one leg seems weaker than the other.

It just seems hard to access help for him.

Poor little man… you must all be very worried. At least he has a proactive family.

It may be worth looking into SWAN UK. They're a Charity which support children and families with undiagnosed conditions. The Facebook group is particularly lovely. Lots of people who have children with various bits and pieces going on but no diagnosis to hang it on. Lots involve seizure disorders. Peer to Peer support mainly But that can be invaluable, particularly in the early days when it can feel quite isolating.

Yay for the girl boy twins! Perfect. Glad you had a lovely time at the reveal.

I am worried to hear that DH’s BP was so incredibly low. It’s really important to involve his specialist team with problems in these early days. The GP is not the right person to sort out problems eg the management of blood pressure after aortic surgery does not follow quite the usual rules - certain meds are more important in this situation . He is absolutely not well enough to be going to Rugby matches away from home - sounds utterly daft given how knocked for 6 he has been.

Sorry to be a wet blanket but he does need to listen to his own body .

How's it going OP? How's DH ,and you!

@peridito

I'm good thank you so much - I'm plodding on. I haven't been to the doctors yet but I have a medication review soon so they'll ask about my blood pressure -- it's not been too bad lately, just now it's 148/87. That's really good for me 😬

The latest parcel to arrive - a huge red cement mixer. 😳

Husband's blood pressure has gone up - 116/74. This seems better than very low blood pressure but his heart rate has gone up to 100 beats per min.

He says that he will ring the surgeon tomorrow.

Many thanks once more @olympicsrock

I've told him all about my fantastic support network. He thought he felt fine this morning, but he's quite worried about his heart rate. It's a bit of balancing act isn't it! The GP told him to stop the bisoprolol - he must've genuinely thought that this was good advice.

He's on amiodarone, carbocysteine, aspirin, (bisoprolol) lanzoprazole (spellings ?). He has some sort of contraption to blow into to exercise his lungs (one isn't right). He is wearing compression stockings. He is walking for about 30/40 minutes, (resting during the walk). He says he feels as though he's not made much progress - although I think he's not coughing as much.

My daughter is wearing a three lead ECG for a 24hr trace. She is working from home today and tomorrow. She has said that she's noticed the weight of the babies lately and she is frequently out of breath. She is seeing one of the team that dealt with her father at the same specialist hospital. She's messaging, having a moan about not being able to shower this evening 🙄

It's my mum's 91st birthday on Friday - she's bedridden and in the final stages of dementia. She still has a good amount of colour in her hair and is still beautiful. (I'm crying now.)

@peridito

I'm good thank you so much - I'm plodding on. I haven't been to the doctors yet but I have a medication review soon so they'll ask about my blood pressure -- it's not been too bad lately, just now it's 148/87. That's really good for me 😬

The latest parcel to arrive - a huge red cement mixer. 😳

Husband's blood pressure has gone up - 116/74. This seems better than very low blood pressure but his heart rate has gone up to 100 beats per min.

He says that he will ring the surgeon tomorrow.

Many thanks once more @olympicsrock

I've told him all about my fantastic support network. He thought he felt fine this morning, but he's quite worried about his heart rate. It's a bit of balancing act isn't it! The GP told him to stop the bisoprolol - he must've genuinely thought that this was good advice.

He's on amiodarone, carbocysteine, aspirin, (bisoprolol) lanzoprazole (spellings ?). He has some sort of contraption to blow into to exercise his lungs (one isn't right). He is wearing compression stockings. He is walking for about 30/40 minutes, (resting during the walk). He says he feels as though he's not made much progress - although I think he's not coughing as much.

My daughter is wearing a three lead ECG for a 24hr trace. She is working from home today and tomorrow. She has said that she's noticed the weight of the babies lately and she is frequently out of breath. She is seeing one of the team that dealt with her father at the same specialist hospital. She's messaging, having a moan about not being able to shower this evening 🙄

It's my mum's 91st birthday on Friday - she's bedridden and in the final stages of dementia. She still has a good amount of colour in her hair and is still beautiful. (I'm crying now.)

That's so much for you to deal with OP ,you must feel as though your head is spinning .
I'm so glad that he says he's going to ring the surgeon ,I hope contact is made .

Also glad that you have a med review coming up with the potential for your blood pressure issues to be addressed .

And your daughter ...life's not easy is it ? (My mum had 5 of us under 5 ,two sets of twins and a singleton .No fun for anyone .)

Hang on in there and please try and take any opportunity that presents to look after yourself .It's important .

I'm sorry about my comment about twins - I don't mean to dismiss your daughter's difficulties .Especially as she has health problems which must make a difficult pregnancy even harder .I'm glad she's being monitored and also that she has your support!

Wishing you all better health and strength for whatever lies ahead today .

What on earth does he want a cement mixer for???
Perfect spelling OP!
He’s only on a single med for blood pressure control OP. Bisoprolol will lower BP and heart rate. It reduces shear stress on the aorta too.
A Systolic BP ( top number) of less than 100 is too low. His team might reduce the dose or stop it as the GP did ( or change to something else) . If BP is too low it reduces coronary perfusion and puts someone at risk of heart attack and kidney problems so it is important that DH keeps an eye on this and tells the specialist team what is going on. I’m not worried about a heart rate of 100.
Hope you are having a chilled day today! Xx

What on earth does he want a cement mixer for???
Perfect spelling OP!
He’s only on a single med for blood pressure control OP. Bisoprolol will lower BP and heart rate. It reduces shear stress on the aorta too.
A Systolic BP ( top number) of less than 100 is too low. His team might reduce the dose or stop it as the GP did ( or change to something else) . If BP is too low it reduces coronary perfusion and puts someone at risk of heart attack and kidney problems so it is important that DH keeps an eye on this and tells the specialist team what is going on. I’m not worried about a heart rate of 100.
Hope you are having a chilled day today! Xx

Oh honey, I’m sorry about your mum… As for the cement mixer, I’d be telling him that if he keeps buying shit like this, you’ll be building a Mumsnet Patio.
(I have been suggesting a Mumsnet Landscaping and Patios Co. on a few other threads. It’s cheaper than a divorce.)

@olympicsrock

He couldn't get in touch with the hospital - no one answers the phones, even if you go through the switchboard. Exactly the same problem I had when trying to get in touch.

A cardiac care team rang him to invite him to an appointment and he mentioned about the blood pressure. They arranged for him to collect a lowered dose of bisoprolol. They said he shouldn't have stopped taking it.

The cement mixer - I've no idea @Fraaahnces He says he has a few jobs in mind.

He must be feeling better - because he's bloody irritating me now. It's no longer quiet in the house - he talks at me and demands to know if I'm listening whilst I'm trying to work. He must be bored all day. I'm really looking forwards to when he can be out all day. He really needs to be occupied.

On the other hand - it will be a shame when he's recovered as I absolutely love having a massive bed to myself. Even if I still sleep on the edge of my side. I've not slept so well in years. I wonder if I can convince him to keep separate bedrooms 🤔😉