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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

To please, please ask for your positive stories of people getting well having been on HDU/ intensive care

985 replies

grobagsforever · 18/05/2014 12:30

DP was admitted last week and moved to HDU last night. They don't know what's wrong. He has fluid on belly, some kind of infection and impiared liver function. There is talk of moving him ti ICU. We seem to be waiting on endless tests. He is 35 we have a three year old and I am 7 months pregnant. I need him . Please tell me your positive stories of recovery from these situations.

OP posts:
daisydotandgertie · 01/06/2014 21:16

I know I couldn't have coped with this thread when my DH was diagnosed with terminal cancer.

The diagnosis is enough to face up to, without having to read all of this. Talk of the press, poor treatment, hospitals and doctors not doing what they're meant to is overwhelmingly frightening when someone is newly diagnosed and so very ill.

We don't know exactly what is happening, and his treatment sounds very similar to that which my DH received initially. My DH presented with pulmonary emboli and it took over a month for him to be well enough to receive any treatment for the cancer.

I don't think Gro is doing the nursing care - she is simply supporting her very poorly DH the best way she can. I did the same - almost exactly. We needed to be together to cope with his diagnosis.

The tone of the thread is almost hectoring and I am not sure how much support it is providing Gro and I know, from very recent experience that she really, really needs it.

InSpaceNooneCanHearYouScream · 01/06/2014 21:19

Hear hear Daisy. And Thanks

Deverethemuzzler · 01/06/2014 21:20

A lot of us have the same unfortunate experience Daisy.
I suppose we all find different things helpful/supportive

I think I would have valued the insight personally.

But everyone is different.

Original poster
grobagsforever · 01/06/2014 21:32

Please god no talk of newspapers etc. By nursing I mean pouring drinks, teeth brushing etc. but yes I am also having yo constantly hassle staff for the things he needs. They are doing their best but they are over stretched. The anti sickness drugs have been tinkered with endlessly and I wasn't happy with that as no one seemed in control of it. Now he has an infusion and things are better. I don't know how anyone without a 24/7 advocate manages.

He is not well enough for surgery or chemo. He is trying to be.

Yes his parents could take over but he wants me. I could get cover and spend more time with dd but her asking about daddy breaks me. It will break me forever. I will never be happy again, it's like dying myself.

I'm taking the advice of doing 5 minutes at a time.

OP posts:
londonrach · 01/06/2014 21:34

Thought about you all weekend gro. You do need to look after yourself as you need to be strong for dh and dd. x

Coconutty · 01/06/2014 21:39

This reply has been deleted

Message withdrawn at poster's request.

FrontForward · 01/06/2014 21:42

I agree totally with Daisy. There are hectoring tones to the thread and the 'concerns' have been presented forcefully based on limited facts provided by OP.

I too would not return to the thread if it were me because the balance of support vs pressure for evidence of care/diagnosis is wrong. It is I imagine well intentioned for the majority however it's not coming across that way.

I have a reasonable insight into this situation myself and nothing OP is saying surprises me. I think the gaps are explained by the fact that she is in shock and dealing with so many things at once.

wherehavealltheflowersgone · 01/06/2014 21:52

Yes 5 minutes at a time gro

And I second what daisy said - The experience gro describes is exactly what my dh and I experienced at a top London teaching hospital 5 years ago. Sadly those patients who did not have someone to constantly badger the staff for tweaks to the meds / treatment / a plan were sent to the bottom of the "to do" list.

It's no one's fault; the nhs is clearly at breaking point. But I can understand exactly why Gro feels she can't hand over care to her dh's parents - I felt like I couldn't trust anyone else with being dh's advocate as I felt no one else would kick ass or have acquired as much medical knowledge as much as I had.

Please don't add to gro's stress by talk of the newspapers. They'll circle like vultures at some point anyway - I had to fend off many calls from journos after my dh died. The whole newborn baby / cute toddler / dead husband scenario was like fucking catnip to them.

clemetteattlee · 01/06/2014 21:52

I hope I didn't come across as hectoring - my request for info was a genuine request. I mentioned it in my most recent study meeting on Friday and it has inspired the team to survey alternative medicine provision in ICU in all hospitals. Emails went out on Friday, so just to say OP please don't feel any pressure to reply to my earlier request.
Hope you get the antiemetics sorted - if the doctors are not on the ward ask the nursing staff to bleep them because there will be both a junior doctor and a registrar in the hospital who need to respond to those bleeps. If he is aspirating and nauseous they may suggest TPN tomorrow.

yellowdinosauragain · 01/06/2014 21:53

What daisydotandgertie said. Exactly that. Hopefully coming from someone who has been in the same situation rather than a doctor and it will be taken seriously.

Grobags it is fine for you to push for what you believe your dh needs. Absolutely fine. Most doctors and nurses are caring compassionate people who only want to do the very best for our patients but are hampered by time and resources. This doesn't mean that you have to settle for anything less than the best and sometimes that means pushing for it.

It will keep going like this too, 2 steps forward and just as your hope builds up, one step back. Hopefully your time with your dh is able to be quality time despite the horrendous circumstances. Could your dd come into hospital and be with you both? Even for a short time?

Sending you much love x

lotsofcheese · 01/06/2014 22:14

Big hugs, Gro. I've been thinking about you over the weekend.

I've often been perturbed by some of the posts on this thread. OP is so vulnerable just now; she has always asked for support & positivity but there unfortunately seems to be lots of "demands" that she answers questions about her DH, his medical treatment , etc. It's simply not what she needs & has asked for.

Perhaps AIBU isn't the best place for this thread & has influenced some of the responses.

Anyway, I hope we can support OP through this incredibly difficult time, in a way which she finds helpful.

ButchCassidy · 01/06/2014 22:20

Just checking in to send more love and best wishes. Stay strong Gro thinking of you.

wheresthelight · 01/06/2014 22:24

Have only just seen this thread and god grow I am so sorry for what you are going through

My mil had a very similar experience last year, admitted with a host of bizarre symptoms that resulted in a bowel cancer diagnosis and like you we were given 24/7 access. Her story did not end well but she was 80 andvery frail. My dsc's best friend's mum survived for 6 years after her terminal diagnosis so there is hope!

As to how you will carry on if the worst happens, day by day and remember your kids need you more so if the worst happens!!

Have everything crossed for a positive outcome for you all

giraffescantboogie · 01/06/2014 22:26

How scary he was aspirating vomit today despite new iv meds. hope they start to work soon.

So he hasn't been able to have any surgery then, I was wondering if that was what the drain was. Where is the drain, what is it draining? Hope it has helped, sounds good it is able to come out tomorrow then.

Make sure you rest

giraffescantboogie · 01/06/2014 22:26

How scary he was aspirating vomit today despite new iv meds. hope they start to work soon.

So he hasn't been able to have any surgery then, I was wondering if that was what the drain was. Where is the drain, what is it draining? Hope it has helped, sounds good it is able to come out tomorrow then.

Make sure you rest

giraffescantboogie · 01/06/2014 22:26

How scary he was aspirating vomit today despite new iv meds. hope they start to work soon.

So he hasn't been able to have any surgery then, I was wondering if that was what the drain was. Where is the drain, what is it draining? Hope it has helped, sounds good it is able to come out tomorrow then.

Make sure you rest

giraffescantboogie · 01/06/2014 22:26

How scary he was aspirating vomit today despite new iv meds. hope they start to work soon.

So he hasn't been able to have any surgery then, I was wondering if that was what the drain was. Where is the drain, what is it draining? Hope it has helped, sounds good it is able to come out tomorrow then.

Make sure you rest

giraffescantboogie · 01/06/2014 22:26

How scary he was aspirating vomit today despite new iv meds. hope they start to work soon.

So he hasn't been able to have any surgery then, I was wondering if that was what the drain was. Where is the drain, what is it draining? Hope it has helped, sounds good it is able to come out tomorrow then.

Make sure you rest

giraffescantboogie · 01/06/2014 22:27

aargh sorry going to throw this thing out the window

InSpaceNooneCanHearYouScream · 01/06/2014 22:32

Imagine the drain is in the abdomen. Could be wrong

OhYouBadBadKitten · 01/06/2014 22:38

I really hope that your dh gets the help he needs.

WandaDoff · 01/06/2014 22:44

You DD will need you twice as much as usual, right now.

I know its hard, but for her sake please make time for her Thanks

I hope you are doing ok, this thread is bringing back awful memories for me & my heart breaks to think of somebody else going through such pain Sad

LIZS · 02/06/2014 08:03

I'm still confused as to how he has had a biopsy but apparently no further investigations. I'm not sure how useful a colonoscopy, for example, would be at this stage but CT scans etc can show what they are dealing with and where. You don't have to be well for those. Are they just treating him symptomatically ?

VSeth · 02/06/2014 08:32

Lizs when the OP's DH was admitted he had a lot of tests.

DrankSangriaInThePark · 02/06/2014 08:36

De-lurking again to send more Flowers to the OP and hope that things are finally going to start moving this week.

I am quite shocked at some of the comments here on the thread though....I think it is all too easy to be defensive of one's own profession when it seems that that profession is being criticised on such threads as this (I know I can rather kneejerky about "bad teacher" threads, although people's lives don't tend to depend on whether I do my job properly or not) but I think the doctors posting should perhaps (as I know dinosaurs has done Smile) take off their doctors' hats and ask themselves how they would feel if this were their husband lying there after a fortnight still none the wiser and seemingly relatively untreated.

Although perhaps grobags doesn't have the time or energy to keep us updated minute by minute and maybe he is actually receiving some kind of treatment. (I hadn't realised about the drain for example)

Grobags, another week begins, sending strength to you and your family and hope that this is the week that everyone gets some real answers. I am sure when the full truth is known, everyone will feel much better, no matter how hard that may seem right now. Flowers Echoing others, hope you are getting some rest, and proper food and that your dd isn't too traumatised by all of this.