To think my husband is gravely ill at the wrong time? Thread 2

[MyOtherCarIsAPorsche]

Continuing from 1st thread.

Another vote (as a hcp) to call an ambulance.

The silence is a bit concerning ,makes me think that a hospital trip has been undertaken .

hello OP sorry I’ve had a hideously busy few days. Wtf from the Gp practice - given DH history chest pain cannot be passed off as an infection or muscle pain without investigation .
CT , ecg bloods are what are needed.
It’s a hospital job I’m afraid and phone call to his consultant secretary first as well to make sure they are involved.
Even just going to A and E runs the risk that someone doesn’t appreciate the risks in a post op EDS type A dissection.

Thinking of you OP xxx

Just come on to see if there was an update. Concerned to see that there is not. Cannot imagine what OP is now going through.

He's gone to watch a rugby match with his father this afternoon.

His pulse is 115 - and he's breathless putting on his shoes. I'm half expecting him to collapse.

The reason why he won't go to A&E is because each time he's been, he's had to wait up to eight hours in a corridor. He says he's too unwell to sit in a corridor all day. He will not let me ring an ambulance - this is the same as before, he doesn't believe he's unwell enough.

I'm just exasperated - if he doesn't want to help himself what can I do? I've just about had enough of telling him to ring the GP/go to hospital.

These antibiotics he had (prescribed) have not made any difference.

He's more stubborn than a mule. And bloody stupid ....

Okaaay .

I don't think you can do anything OP . Maybe tell him that the least he could do (for your sanity) is try to contact the consultant via the secretary .If that course of action is possible .Which IME it isn't .Just ansaphones and unreturned messages .

Yes - wrote to them last week. Didn't hear anything back. They probably think that he just has to wait for his check up on the 12th July. (Should have been June.)

I just hate hearing how difficult people find it to get in touch with their consultants. We have a nurse specialist who carries a mobile phone Mondayto Friday 8-6 and we give a card with the number to patients when they leave hospital.
Since hearing bad experiences form some of my patients we have started sending the cards out before surgery and I tell patients “I really do want to know if you are unwell”. I’m lucky to have an amazing secretary and the two colleagues who cross cover her are excellent too.
These guys need a bit of patient feedback.

@olympicsrock

He's taken stronger painkillers this evening - pain in chest, shoulder and back. He's not eating again.

These guys need a bit of patient feedback I'm not sure how this would work . Presumably it's down to admin /support staff ? And if you ring and get a recording that X is out of the office until ..5 days later what do you do ? I presume there is a shortage of staff .No cover for people off sick/on leave/at lunch .

And I'm not sure PALS could help ,it would seem like an isolated incident caused by overworked staff .It wouldn't be regarded as serious enough to warrant any action .

This type of pain really worries me in the context of his problem. I really think he needs investigating with a CT angiogram . My concern is further dissection.
I feel so sorry for you Op because I know that you feel like a stuck record and DH is not listening.
On Monday call the secretary again, call switch board and ask to be put through to the cardiothoracic registrar on call at the Castle , or ask the duty GP to refer to them . I think you need your follow this week and a scan.

This sounds really worrying. Surely worth calling am ambulance so they can at least check him over at home? Thinking of you.

Zonder ,the difficulty is that the OP's husband is very resistant to calling an ambulance .He is both (in his opinion ) to unwell to sit for hours in A&E (lot of sympathy here) and also not unwell enough to warrant one .

olympic has walked the OP through a good course of action so fingers crossed that it works and thatin the meantime the OP's husband declines no further .

Such a tough situation .Not uncommon though .I have a friend with chronic complex health conditions who has more or less given up and "just" suffers and sweats it out .In a v v rare moment of extremis a 111 call last weekend took 2 hours before calling back ,4 hours waiting for an ambulance and a paramedic in a car arriving in lieu .Trip to hospital with paramedic and admission to surgical ward .Discharged following day after investigations ,given a blue card ,told to phone specialist nurse asap .Specialist nurse 's phone advises away for 5 days .

So friend is further discouraged from any other action than suffering and trying to cope .

@peridito I know. I think I would call one anyway because it sounds really bad. At least if they came they could check him out even if he doesn't go in with them to hospital.

I should perhaps say that I recognise my anecdote is misplaced on this thread .Chronic health conditions ,long waiting times and a poor old NHS deliberately wrecked by this gov to make way for even more privatisation ,are not the same thing as after care for surgery .Without which the cost and effectiveness of surgery will all be undermined and possibly wasted .

I agree @Zonder .But I am quite bossy and don't find it hard to ignore someone's protests !

Maybe we should do it on Ops behalf!

@olympicsrock I struggle with the inability of departments to talk to each other or offer continuity of care.
So specialist hospital in London (head honcho surgeon) I can email team and speak to her if needed.
Heard from local cancer team once (by phone as they are still covid averse) and not seen or heard from a macmillian nurse.
Not seen stoma nurse for two years now. Had one phone call. Repeat phone call in November and no face to face.
And I am complex.
Am just told regularly I fall through the cracks as no one wants to take responsibility.
So I understand peoples reticence to go in to hospital/ phone/ go in/ contact anyone and start the bandwagon all over again.

Sorry for moaning. Hope your ok @MyOtherCarIsAPorsche

How is it going @MyOtherCarIsAPorsche ? Any improvement following antibiotics?

sorry to hear that@Stomacharmeleon . Honestly I dread having to access healthcare more than I dread being ill. How sad is that?

@MuchuseasaChocolateTeapot

his last tablet is tomorrow - no difference whatsoever.

he would happily go to A&E if he had an appointment and could be seen in a reasonable time frame. (As with our local out of hours cottage hospital after ringing 111.)

he's not prepared to spend a full day waiting on a rock hard, stained chair in a 'corridor full of corona' (his words).

not heard from anyone with regards to letter I sent to the consultant last week (10 days).

his pain is mainly when he breathes in a little stronger than when completely relaxed/coughing. Also, pain in shoulder, back and abdomen.

gp obviously though infection (over the phone).

I feel so bad, I'm bloody fed up of hearing it and at the same time, I can't even write down what I think is going to happen - in case it comes true.

just a constant bad atmosphere - living hell really. I'm possibly a little low now.

@MyOtherCarIsAPorsche I am sorry you feel so low and I don't blame you in the slightest.

Bless you, OP. I've not followed everything, just popped in at intervals to see where you have got to.

Each time I've been awed by the extraordinary circumstances you've been enduring. I'm so sorry for all that you have been through.

I worry that you're making yourself ill under the pressure of looking after everyone else.

And there's no obvious way to change your circumstances.

When things are a little less extreme, I'd suggest you allow yourself some recovery time. Try and book some space where everyone else has to manage without you. Get some counselling. Perhaps stay with a friend for a few days and just sleep and eat and sleep again, knowing you are off duty.

I'm sure that's an unrealistic pipe dream at the moment.

Hats off to you for your endurance- not that you've had much choice.

@MyOtherCarIsAPorsche sweetie, if he won't go to hospital (even if you took him by car rather than by ambulance) there is nothing you can do.
Remember when you packed a bag and said "I'm leaving you" as a joke when you went to your daughters - do you think that might work again? Pack up your knitting and an overnight bag and stay with your son and get him to talk some sense into his dad?
The final resort would be your DD asking if he wanted to meet his new GC that she is carrying - if that doesn't work I don't know what else to suggest.

Everyone has tried bribery. Everyone is aware he's going downhill. On Sunday my daughter was on her way to our house when she thought she saw a man having a stroke in the street - I was her father, walking lopsided. She stopped the car and brought him home. Nothing anyone can say is changing his mind. He just says he can't face the never ending wait at hospital and he won't get in an ambulance.

we've just had a few more words and he's stormed out - more like a bit of drizzle than a storm actually. Took him ages to get ready and out of the door. I don't know where he's gone.

he was droning on about pain and how it feels just like it did back in March when this all began. I've been hearing this more than enough times a day for the past couple of weeks. I quietly told him that he has two choices - go to hospital or don't and stop rubbing it in my face. I can't go on begging him to let me ring an ambulance.

I'm petrified on a morning when his bedroom door is still closed. I'd like to say that he's no idea of the turmoil that he's putting me through - but he knows exactly how I feel. It's obvious he doesn't care about us.