Just don't know what to do,so sad for dp any docs around?

[wrinklytum]

dp was dx with a rare autoimmune condition in 2007.It presented atypically and it took a while to get a dx.

To cut a long story short he has a main consultant but is also seen by several other specialisms (Urology,nephrology,ENT) and because of the weirdy nature of his disease it affects a lot of his systems.Over ny he was hospitalised with breathing problems?CI,UTI and was found to be immunosuppressed due to his meds.He has come home today and is still to my mind poorly.He is still passing haematuria,they have upped his steroids (presumably because of his chest infection).He is on shedloads of painkillers and is a bit aggressive and rambly (steroid/painkiller combo I think).Other than citing infection they haven't come up with a cause for his breathlessness,but to me he looks really anaemic (Very pale,tired,cold) but of course it could be e verything else!!They have been taking bloods,surely this woukd have been recognised though?The problem is his lead consultant has been on hols (Of course I don't begrudge this)so he has been seen on a gen med ward.He is on warfarin and his INR is low.I am just worried.He has had pe and dvt in past.He had no chest pain so they haven't done a VQ scan but I am panicky the breathlessness could be anaemia or could be a PE.I guess his sats would be low though if it was or he would have pain????Well when I looked on his nursing chart his sats were 94% so not exactly fab?Oh I don't know.Apart from pain control better he seems no better than when he went in.Grrr I am just fed up and sad for him.Tonight he has been so low

I'm really sorry you are going through this and Dp too. Pain is very tiring. Watching someone you care for in pain is very stressful, so please make sure you take care of yourself. Sorry I can't help

So sorry to hear this. Could you speak to anyone at the hospital? What about the night sister (don't know what they call them now).

Is he more breathless than when he first came home?

What is his INR, and has his warfarin been increased?

Does he have any bleeding or bruising?

If you are really worried call NHS direct, or if you are able to, take him back to A&E.

Sorry - you mentioned haematuria. Is it getting worse.

TBH it isn't possible to tell much over the internet. If you are really worried trust your instincts.

Better to seek help than not, if just for peace of mind.

Hi Wrinkly. Not sure I can be much help, as i'm not a doctor, but my mum suffered from an auto-immune disorder for years, and it was very frustrating with all the different departments she came under, so I understand where you are coming from. On a general ward, you can't always expect them to have full knowledge of rare/ complex conditions, so IME always better to be a bit of a PITA, giving history and medical details unasked, and asking about possibilities. Sad to say, we probably saved my mum's life a few times along the way by being up to speed on her illness

PE is a tricky one- it seems very hard to diagnose definitively. I would be tempted to push for a VQ scan in your shoes. I take it he is on antibiotics too? I hope you have plenty support- I was lucky that dad and I were a good team when it came to mum's illness. we had to fight along with her much of the way.

Re breathlessness,no its more or less the same,breathless on slight exertion,(he has nebs at home) but has more or less finished ttmt for CI.I really DO think he could be anaemic (can be side effect of cond) but no better than when he went in

INR s 1.6 so slightly low.Has had warfarin for tonight.

No bruising.Haematuria.Steriods upped to 40mg from 10.

The thing is the ward he was on is not the "Usual" one and not to do with the specialism that treats him.Has been hospitalised 8 times in past year,big battle to get him in each time.He is losing faith in medics (Though I KNOW they have save dhis life and have his best interests at heart)It is so hard to get him in and when he goes he is in pain and grumbles about time it takes to get pain meds (Have tried to make him understand it takes 2 nurses to check out his pain meds so it takes longer as they can't be in 10 places at once)

I think he is only just beginning to realise that he will never "Get better" but that his condition will only ever be controllable

I can truly sympathise, as we had to battle with mum to get her into hospital on every occasion, and then when you have been there time after time and seen mistakes happen, you do kinda lose faith

It sounds like you will have to watch him, encourage him to drink, and be prepared to decamp back to hospital if he gets worse.

Would it help if you agreed between you a point where you would go back/call doctor?

It is so hard, and I do understand how he feels, if he has a lot of pain and has been in and out of hospital.

Do you have a contingency plan for if you need to go back?

Wish I could offer some more constructive advice.

Gut feeling is often the best in this situation.

I am really sorry, I have to go now. I hope things improve, and you both manage to get some sleep.

Thanks.He is sleeping now.Thanks I appreciate a friendly voice.xxWill keep an eye on him.

How are you both today?

As part of his PE prevention, he should have on TED stockings (white elasticated things that need to be prescribed by a Dr) and something like clexane - it's an injectable heparin which helps to prevent clots whilst hey are waiting for his INR to come up. Hope you are both feeling better soon.

Hi 3 little frogs,thanks for asking he wentto see his consultant today they took blood upped his steroids and px cipro,apparently his chest sounded tight on auscultation.He is still very soboe though.We are to give it 48 hres and go back if no improvement.

Hope he feels better over the next 48 hours. It must be so stressful and worrying for both of you. You must feel as if your lives have just been taken over by this.

Do you have any family support, or a patient group support?