Firstly thank you to everyone who responded before. After a few days in AMU acute medical unit hubby finally is having his drain. It has been a complete nightmare but I can't believe we have to go through this everytime I feel so let down by the system consultant didn't even know he had been waiting for a drain she wasn't happy that he's been left so long.
I'm just waiting for clinic dates in Birmingham now. I would rather take him there then go through this again.
Sorry for the whine.I hope everyone is keeping well.
Glad he is finally getting the drain, that was ridiculous that he had to wait that long. Hopefully there will not be a next time and that the Birmingham appointment comes through quickly BUT if there is a next time, don't wait on the ward sorting out a bed etc. Phone the consultant's office, let them know of the situation and they should get him in urgently. If consultant doesn't know there is a delay then he/she can't get the ball rolling.
You still need a good rapport with your local consultant even after going to the transplant centre - we still see local guy every 6 months and transplant unit too. We keep the local guy in the loop because his hospital will be the first port of call for any emergency situation before transfer to Edinburgh might be organised.
Fingers crossed his symptoms ease a good bit after the fluid is out.
So glad has getting drained. Our son is in today for his... in 9.45 then 6 hours to drain then home.
We phone tbe gastro unit when he needs it and they book him in folloeing Tues or Third..only days they do it. Which hospital are you with. Our sons at our local Blackpool Victoria Hospital.
He was put on the liver transplant list at Queen Elizabeth Birmingham last Thursday
Our local is royal berkshire hospital and they only get you in if or when they get a bed. Frustrating. Congrats on him getting on the list hubby should be going to QE. Dr Mutimer does clinics at RBH in Jan and June so hopefully June but I think it needs to be sooner. I'd rather go to QE and get it sorted. X
Wow only now getting it? That's very stressful for you and your husband and really not good enough! How did you get it in the end? Did they say how much they drained off? Hopefully they won't let it get to that point again. Glad you got there in the end, it's such a relief when you finally get it. Try and build a rapport with an efficient member of staff, if you can find one! That might give you a bit of leverage if he needs another one. All the best keep us posted.
Thanks you. They drained 8 litres but they kept stoping it apparently cos the albumin took ages to arrive. He's uncomfortable but no where near as bad.
It was the same with me they drained for 1 hour then they stopped to wait for albumin which took 5 hrs to come by which time they have to take it out after 6 hrs. I seriously could have cried, soooo frustrating!!!!!!! He'll feel a little better but prob needs more draining. Poor thing.
I understand now why they stop it as it can be unsafe but yes it is so frustrating. I don't think they get how painful and uncomfortable having a drain is. We went via a and e in the end which I didn't want to do and then bank holiday weekend meant no drain. Consultant saw him on Monday and wasnt happy it hadn't been done within an hour of her visit he was being drained. Prob have to go back in a few weeks but he's home now and more comfy. Do you normally get pain/stomach cramps for a few days after? X
I've only had one thankfully but you're so uncomfortable before I think the pain is the organs feeling a bit bruised. Does take a while to settle, is he in water tablets, hopefully they will continue to help with the fluid. x
He is on amiloride but unfortunately he is allergic to spironolactone and furosemide. He's also on a 1.5 litre fluid restriction. So his legs are a lot less swollen but doesn't help with the ascetis. He's already feeling better but being at home helps. Hopefully next time will be easier. Thank you. X
I know the feeling 2 yrs ago i was having to take my hubby in every 2-3 weeks for draining i ring up to say he wanted draining they ring me back about 1-2 days after to say they got a bed an when we got there we be waiting 2-3 hours for bed an my husband would be so distressed sitting i his wheelchair for so long i could go on i know the nurses are so over work .But its been 2 year since he asnt had to be drained an carnt tell us why
Glad he got it done! Did you get the consultants direct line, should this happen again? Or his/her secretaries?
That's the best thing to do, I think. They often will push for a drain or other procedures.
But also, I thought I'd mention this also.
There have been several times that it was easier for me to. Go into hospitol for several days and get all my testing done and procedures done at one time.
No, you may not like it, but it will push you to top of list. It also allows your doctors to schedule other things they might not, because you in and they know they can get them done.
Damn right, this government has quietly and systematically starved the NHS of funds for the last 5 or so years.Why?Because they can/they are in the pockets of of private health firms/and ABOVE all,they know the majority of us are too THICK to notice,long live democracy........
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Failed Ascites Drain with Decomensated liver Cirrhosis - Now what?
Some advice re draining fluid?
Ascities drain
Ascites drain
