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

[grobagsforever]

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.

What's your specialty, yellow?

General surgery. With an interest in breast cancer surgery. But with my emergency hat on I deal with a lot of patients with bowel problems, including bowel obstruction and bowel cancer. I understand when treatment and invasive tests would and wouldn't be appropriate and the issues around dnr decisions. So while not an expert in oncology treatment I do feel as though I know enough about what I'm talking about to know that there is nothing obviously suspect in what grobags dh is going through.

I can't advise on his treatment as I've not seen him or his results and that wouldn't be professional but in general terms there is nothing to suspect he's not getting the right care.

And she doesn't need me or any of us to do that because she has said she's happy with the care he is getting.

Grobags things sound better today. Hang in there xxx

Cross posted. No Maryz I don't think that sounds suspect but I do understand why it sounds it. And I don't know anymore than the rest of you.

But I'm not prepared to have detailed discussions about every decision on this thread because I don't think that is helpful to Grobags. And it wouldn't be professional to comment on a case in detail based on the information in this thread simply because I don't have the whole picture. But in extrapolating from things she's said and making a few presumptions from reading between the lines there is nothing suspect here.

Of course because I don't have the whole picture it is possible I'm wrong. But grobags does have the whole picture and she is happy with his treatment. That's good enough for me.

Cross posted again... I wouldn't attack you for asking questions. I am very happy at work to spend hours with patients and their relatives to ensure they understand what is going on and the rationale behind their treatments. I'm happy to discuss alternatives and to offer second opinions if necessary.

And you're right that grobags is still posting here asking for support, but she's not asking for advice regarding her dh's treatment. Which is why I don't think it's helpful for us to give it.

I've also explained in previous posts a bit about how you assess fitness for chemo and also why it is not always possible to have a definite diagnosis before knowing it's terminal.

It took me a good few weeks to be able to question medics and be an advocate for my DD.
Whilst I was incredibly grateful for the vast majority of her care there were many incidents when I had to push very hard.

I had to be alert at all times to prevent errors being made e.g. blood products being given without adequate massive cover, medications she was allergic to, I had to press for cross matching as lots of drs didn't understand that her blood didn't just come from the stock down the road etc etc and so on.

So much as I respect and pretty much revere doctors and nurses it is not right to tell people to NOT advise someone to question and push if they are the advocate for their loved one.

You're both right there is nothing wrong in advising people to be knowledgeable and vigilant with regards their own treatment and that of their relatives.

But how can any of us know if the treatment he's getting is substandard? We don't know details of grobags dh's case and neither should she feel she has to give these details if she doesn't want to. She has also said that she has support. Her friends and relatives who are there with her and know a lot more than we do are in the position to push or help her to push for more answers and treatments if that is the right thing to do.

Don't get me wrong I'm not trying to say doctors are god and they should never be questioned. I don't believe that for a minute. Just that we don't have enough information to question their decisions and constant undermining of care that she had said she's happy with feels wrong.

Can you at least acknowledge that many of us do have first hand experience of a cancer diagnosis, yellow?

As you have "an interest in breast cancer surgery", would you care to advise Zombie? She's just had her 2nd mastectomy in 2.5 years and is embarking on her second round of chemo and Herceptin. She's awaiting an MRI to find out whether she's Stage IV or not.

Oh, and during the same time period she's had a LLETZ which showed CIN1 & CIN2 as well as a colonoscopy where one of the polyps was an adenoma.

Sorry, but there's theory and there's reality.

Of course I can acknowledge that zombie. Having experience of a cancer diagnosis means you're much better placed to help and support grobags as to how on earth she comes to terms with this and finds her way through what is to come. My second hand experience with patients can never match your first hand experience of actually being there and this is what grobags has asked for help with.

But cancer isn't a uniform diagnosis so what happened to one person doesn't mean that is relevant even to someone with the same cancer but never mind a different type. And there is a lot we don't understand which is why we're frankly crap at being able to accurately predict who will do well and who won't. All the stories earlier on in the thread about people given grim diagnoses to beat the odds are testament to that.

If you would really like advice about yourself I'm very happy for you to pm me but I'm limited to what I could say without seeing you /knowing details of your case. I suspect that isn't what you really wanted anyway from your post but I'm happy to help if you want.

Gro - I am so sorry you are in this position, but very happy that you are confident with the scope of your DH's care.

For those who question that a patient can be deemed terminal without a diagnosis - my daughter is 8 years old. I am currently sitting at her bedside in hospital, she has had many tests in her short life, and while they have virtually all found something significant, she remains without a diagnosis. The name for what is affecting her is not what will take her life, it is the effect of it.

Gro, love your husband, your children and yourself with all you can, take care of yourself, too. When he is able to go home, accept the help you are offered, and try to speak up if you need something you are not getting, either for him or for your children/yourself. Take this time to make memories, and perhaps prove the doctors wrong.

It can happen - my DD was referred to Hospice 2 years ago. She is still with us - and we and glad for every day.

Beemom your dd is beautiful. Fantastic post too. Wishing you both all the very best for whatever the future brings xxx

Beautiful picture Beemom. What a gorgeous smile!

Grobags I'm not going to interrogate you for details of your husbands illness and will accept what you say. I have too sat bedside for hours on end with a family member with advanced bowel cancer. We too were lucky and ICU allowed me almost unhindered.

I get the impression that you and DH benefit from a holistic approach rather than purely scientific? I hope the alternative therapies are benefiting your DH. I hope that you are also getting some sort of support

So many sad stories on here...

Grobags I see you are open minded, so I will tell you my friends story.

Years ago, a friend/colleague of mine fell after taking an overdose of prescription drugs and knocked himself out. He vomited and inhaled it. He was found and was taken to hospital. As soon as I heard about him on the phone, I immediately said "You can't have him, he's too young".
I went to visit him and there he was, in an induced coma, a machine doing his breathing for him. The nurses told me that the vomit had burnt his lungs and they had adhered to his chest wall and that he would not survive. I sat by his bedside focussing on his chest and using every ounce of healing I had in me.
He's been very well for a very long time now. Nobody could explain it. I believe I was heard and I believe that my healing helped.

Don't give up.

BeeMom your Dd is gorgeous.

Gro, wish you the best.

My daughter was 8, too, when she was diagnosed with the cancer that is acute myeloid leukaemia.

Throughout her illness and death, MNers were an incredible support to us, in so many ways.

I have been on MN nearly 10 years and come to know so many, who are such a great support.

We were in Glasgow but still, several medics and spouses of medics were of great support. Many came in, to the waiting room in ICU or the patient lounge in the onco unit or outside our child's room, as due to her protocol she was much in strict isolation. Please take advantage of such support.

It is invaluable.

I think it is absolutely vital that we go on sharing stories of positivity related to every possible outcome.
Yellow your professional opinions are invaluable in case anyone feels the medics are not being proactive. Whatever else happens on this thread the focus must be on what grobags has asked us for and not on what we think she might or should be doing.
Personal experiences are also valuable as long as they are relevant. Bee your dd is beautiful and you are going through such a lot yourself.
Grobags I hope you had a peaceful night and can have a reasonable day.

You're absolutely right Coconutty to take professional opinions on this site with a pinch of salt and no offense taken whatsoever :)

Anyway I've taken my doctor hat off because grobags dh has his own doctors, and this is a support thread not a medical advice thread. If grobags has any questions I'll be happy to put it back on again...

Hope you had a good night's sleep last night grobags and lovely snuggly hugs with your little dd this morning. Sleep and hugs make everything easier to face... Here's to another good day

Grobags, so sorry for what you are going through and sorry to jump into the thread
But... I am currently doing a study on treatment options in ICU and we have a very strict system up here in the Midlands. If you've got the time/motivation/energy I would be really interested if you wouldn't mind PMing me the name of the hospital you are at (in complete confidence of course), or if not the hospital then the trust, as our trust could benefit from the thinking that would allow reiki etc. our ICU is a high tech, sterile, highly regulated place in a massive teaching hospital and I think it would benefit our consultants to see that it can be done a different way.

Again, sorry to hear the difficulties you have been through.

How are you and your DH today grobags?

I feel dreadful, hopeless, depressed and suicidal today. I'm not tolerating a life without him. I shouldn't have to. It's not fair. I'm not bloody doing it. My children would be better off without a suicidal mother.