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Rather concerned about DP,any docs around,specifically those knowledgable wrt urology,autoimmune stuff and anticoagulation ??(Hopeful emoticon)

(16 Posts)
wrinklytum Fri 01-Aug-08 23:19:26

DP has been ill for a year or so with rare autoimmune disease.Recently he was admitted with sepsis.He was trested with strong abs.After treatment for sepsis (Pseudomonas UTI) he had a TURP.Concurrently he developed bilateral DVTS and was anticoagulated initially with fragmin and has now been warfarinised and is having regular checks of his INR.Whist septic his dose of steroids was upped to 40mg daily.He had been on a reducing dose of steroids and had previously got down to 20MG daily.He has got the cushingoid moonface thing going on,and his legs and bottom half including man bits are still very swollen.Now I know after TURP some swelling should be expected,and also the DVTs won't help,but he really is oedematous and I am wondering if it is due solely to the surgery and DVT or if the steroids could be a potential cause too.His legs haven't got to the leaky stage yet but are pretty huge.I am worried cos

1) He is SOBOE
2) He cannot get upstairs unless on all fours
and is shuffling around like an old man.

He is PU about 1 -1.5 litres daily,urine concentrated.

Should I get the on call doc to see him??

Should they be beginning to reduce his steroids?

Can I suggest anything to reduce swelling other than elevating legs?

Does he require some diuretics?

He isn't on any.....

Oh also he is still on 100mg cyclophosphamide daily,has bilateral renal stents and an IVC filter in situ due to previous PE and DVT.



PS if you've read this you deserve a medal.

justjules Fri 01-Aug-08 23:23:36

takes medal for reading and bumps for wrinkly smile

<<jules looks very confused>>

Evenstar Fri 01-Aug-08 23:24:33

No experience of this Wrinklytum but bumping for you, I think I would be inclined to get him checked by the doctor as he sounds very poorly. Hope things improve for him soon.

rachaelsara Fri 01-Aug-08 23:26:32

bumping too

Sidge Fri 01-Aug-08 23:29:12

Has he had his kidney function checked lately?

It does sound like he needs some diuretics. Steroids can increase oedema - why is he on them, is it for his autoimmune disorder? 20mg daily is still a fair dose; is he due review any time soon?

Is he drinking? Has he got a temperature?

wrinklytum Fri 01-Aug-08 23:37:07

Last BCP AFAIK about 1/7 ago.

Yep,steroids for autommune thing.

Its the SOB I am worrying about.At rest he is OK but slight exertion has him huffing and puffing.His disease is multi system so under several consultants,across 2 hospitals which makes joined up care a bit tricky at times.Has seen,rheum/uro/renal/ENT/derme as part of condition.Rheum is lead cons and very good but he doesn't see her again for several days and the uro peeps were the ones who upped the steroids.I think I need to docs and push for them to do a BCP don't I?My gut instinct feels that he could do with diuretics,but am not a doc.

wrinklytum Fri 01-Aug-08 23:39:39

Sorry,mean 1/52 AGO!!Is having next INR in 2 days,maybe they could check his BCP when he goes there.No temp AFAIK,but hes necking regular paracetomol anyhow so it could be masked.

AvenaLife Fri 01-Aug-08 23:41:38

I would call the on call doctor, especially if he is short of breath. He sounds wet (IFKWIM), raising is legs will help, however if he's not excreating the excess fluid then this could be harmful so you really should check.

I can't help on anything else. I'm sorry. I would call the doctor and get his kidneys checked aswell.

Sidge Fri 01-Aug-08 23:44:44

Sorry what do you mean by BCP? (Not a doc I'm afraid just a practice nurse!)

If he had his kidney function checked yesterday (or do you mean last week) and is more SOB since then I would see the on-call doc tomorrow and see what they say. Or do you have open access at the hospital? It may be worth asking if you can go in to the unit tomorrow, they can assess him and do some bloods. If he is very SOBOE and oedematous then he may need some IV Frusemide or something.

I hope he is better soon, he (and you) have really been through the mill sad

wrinklytum Fri 01-Aug-08 23:57:32

Sorry,BIOCHEMICAL PROFILE or U+E call it what you will.(Am nusre too but its different when its your own loved one!).If I was at work I'd be telling myself to get him checked.Will ask tommorow for them to recheck.Thanks.I know it sounds so silly,that I should know,but his condition is so complex and its been 2 steps forward one back and so much has gone on.Aaargh.Slaps self.

AvenaLife Sat 02-Aug-08 00:11:25

It sounds really stressful for you all. One day at a time. smile

Sidge Sat 02-Aug-08 11:11:09

Ah gotcha! Haven't heard that for ages!

Hope he is seen soon and things get better.

misdee Sat 02-Aug-08 11:15:29

oh fluid retention is not nice, dh has been at the leaking fluid stage before and it was nasty.

i would send him to get checked and ask about diructics.

morocco Sat 02-Aug-08 11:19:32

is he leaking a lot of protein at the moment?

gosh, I'm no doctor and half those medical terms are a big blank to me, but I'd definitely be chasing this one up with the specialists. can you get thro to anyone at the hospital whose care he is under? on call do might or might not be good but a consultant opinion would set your mind at rest more

my son has had several of the conditions you mention so just speaking of how he was, the odema was causing the testicular etc swelling and he needed diuretics combined with albumin infusions to shift it. the steroids cause facial and stomach swelling and also lots of joint pains but have never caused the same type of swelling you get with odema, imo it looks quite different. it might take a while for the steroids to start to shift the odema, in which case we use diuretics as well, altho I understand there can be some small risks with doing this, perhaps this is why he doesn't have them? the cyclophos was a nightmare and ds was totally wiped out by it, so that could be some reason for the shuffling round as well

but really, I'd be calling up those consultants, there's always someone around if you ask often enough

hope he improves soon, sounds like he's been through the wars

emma1977 Sat 02-Aug-08 11:30:06

Any update today?

What condition does he have, wrinklytum? Is it nephrotic syndrome or something similar?

He deffo needs seeing by OOH GP ASAP. The degree of oedema you are desribing along with the SOBOE is suggestive of a significant degree of fluid retention and possible pleural/pericardial effusions.

He sounds as though he is ill enough to probably need to be in hospital to monitor vitals, U&E, proteinuria, UOP and the rest as if he needs a significant degree of diuresis.

Keep us posted.

emma1977 Mon 04-Aug-08 22:08:59

Any news?

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