I have a few question for all of you that have experienced ascetic draining.
What procedure do the nurses follow once you are back on the ward and having the bags emptied?
Do they know the different types of drains and how to remove them? (We have had a few occasions now where they can't remove the drain because no one on the ward knows how to and he is rolling around in agony for hours)
Did it get more painful over time and/or harder to remove fluid?
Drains are such a nightmare every time and its always so stressful. The way they do it here seems backwards. For example they drain the fluid into urine bottles and/or toilet liners and walk a cross the ward to the sluice. Every time now we end up in tears due to pain for him and pure frustration for me. Plus seeing him in pain breaks my heart.
How long can they keep doing it before its just not safe for him anymore?
i just want to here how other people have experienced it so I can see if ours is the norm or not?
I am sorry to hear how much sufferring he has with this. I drastically limit fluid, food, sodium intake. I have removed the fluid twice or thrice over the last 5 or 6 years. I just had a drain but I got off 8 lbs. of fluid before the drain, I ate and drank almost nothing, only fresh orange juice and organic yogurt and a little broth. They only had to removed 2 liters. It was easy. I am in the states in Hawaii. There was nothing to it, I was so relieved. I had a lot of fear letting them do that but once there I gave in and relaxed. I did not have to wait for them to empty any bag of fluid. They did take me in afterwards and give me Albumin injections. That did not hurt either. Its heart breaking what you are describing. There is so much fear we have to buck up to with this disease. Your story makes me want to weep, I am teary from reading it. Best wishes.
Tonight it got worse. Was admitted today for a drain via GP surgery to the Medical Assessment Unit (MAU). Drain went in by pros nice and early and done well. Then the problems started. They didn't order the Albumin and after me insisting that it was important they got that sorted 2 hours go by. We start to ask the questions who's going to take it out. Don't worry it is all in hand they say. 11.30pm drains due out in 30 mins I ask who's taking it out. The response I got was 'oh thanks for reminding me!!' 12am comes and someone comes in and starts in the dark!! I turn the lights on and she shouts at me.
Then she starts to remove the dressings and I have my eyes on her like a hawk!! I ask twice have you done this before. She says yes she has. She then starts to try to yank it out. I grab it at that stage and tell her to stop. Hubby's in tears by this point. She then tells me 'don't talk to me like that I know what I'm doing' I just said I've seen 31 of these be removed and you are doing it wrong. She argued with me and I just told her to leave.
Should explain the drains at this point. There are at least 2types I am aware of.
1. 'Rocket' this is used on the wards and goes straight into the abdomen and the removal is simple 'breathe in breathe out and it is pulled out gently on the exhale'.
2. 'Pig tail or Cork screw'. This one is usually used in ultra sound or as a permanent drain in palliative care etc. This is inserted and a wire is tightened so that it curls up 'like a Pig tail' in the abdomen and hooks in place. This is then removed by untwisting the wire therefore straightening the cord inside so that it can be pulled out like the rocket.
Both simplified and are a lot more complicated then this but it's the gist.
Hubby had the 2nd one in. If you try to pull it out without untwisting the wire it hooks into the abdomen and we'll obviously causes a great deal of damage and is incredibly painful.
The nurse who tried to remove the drain told everyone that I refused to let her do it. I lost my rag at that point and demanded to speak to the gastro consultant. They called the pros from the Gastro ward and it was removed properly. The lovely nurse from gastro then when back up to her ward (The gastro ward is a second home for us so we know them all, they just didn't have any beds). There was blood all over his sheets so I took him to the bathroom to change and clean up. I asked if they would change the sheets. When we got back the sheets weren't changed I asked again and they said in a minute they were sitting there chatting. I was like no now. 10 mins they left him Standing cold and shakey. I just put his shoes on him and grabbed a wheel chair and he discharged himself.
I couldn't leave him there likethat. The whole situation was just really traumatic.
Please write to the hosital administration what you've written here. I have some horror stories too from past procedures. It happens. I am sorry it happened to you. Did he get his Albumen put in?
I have only been drained once when I first went to the hospital with ascites and high enzyme counts. They gave me medication with an intravenous drip so I wouldn't feel it when the tube hole was made in my abdomen. They explained everything they were going to do and why. I asked lots of questions, too. It was my first time ever going to a hospital for myself; I'm 63. I watched the whole procedure. They drained 7 and 1/2 liters. It was fascinating, disturbing and somewhat uncomfortable all at the same time. Two weeks later when I was out of the hospital, I returned to ER (emergency room) because I felt like my abdomen was retaining too much fluid again and might need to be drained. After blood tests, etc..., the doctor on duty consulted with my doctor and decided to wait on another drain unless I felt like the pressure was too unbearable. They told me that they try to limit the drains to a minimum because every time it is done can expose the patient to possible infection, which is a risk they try to avoid in liver conditions. This made sense so I decided to wait. They said as my enzyme levels continued to decrease, the fluid in my abdomen would gradually be able to be processed through by my liver. They also suggested that if I did need to be drained that the ER room in the hospital would have more germs and possibilities of causing infection than at my primary care doctor's clinic. Fortunately, I have not had any more drains. I am so sorry to hear of both of your experiences and even more grateful than ever that my first hospital experience was not a traumatic one.
Hi Hidden m y hubby used to manage his own draining - the second by ultra sound was bad when taken out and now i know why! otherwise he was ok but i think they gave him some form of pain numbing.
What a terrible experience for your hubby and you, well done for looking after him so well. X
Yes draining can be a long drawn out day getting a desent bed even though prebooked then a blood test two hour wait ,then finding the lesser spotted doctor who has to cover many wards ,use to have a drain every 10days ,hospital staff were very good if your a patient patient you get there in the end ,and the relief of getting rid of the fluid is worth it used to drain 10/ 12 ltrs , ihad a tips procedure took a year to kick in not been drained for a year still waiting a liver though
Always sad to hear when someone receives care which is not just unkind but potentially harmful.
Does your hospital have a Patient Advice and Liaison Service ( PALS). Check the hospital website if you're not sure. They should be able to help you and make sure nothing like that should happen again.
If nobody complains they won't know there is a problem. As a guide for everyone, make sure you know the name and job title of everybody who cares for you. So if you have to complain, or indeed praise, they can identify who you are talking about.
I hope your next hospital contact goes as it should.
Jim
Hi Poppy, I have no experience of drains but I have witnessed poor care and you should absolutely complain , what you have described is unacceptable , I hope things improve for you both xx
identical story to me chris ,,,,i pre booked and waited till it was no use and i went home ,,,next day boom on bed ultrasound cut tube in pig tale tidied up ,,back to room ,,drained approx 6hrs ,,albunmin put in like clockwork ,,,on my last ocasion i had to show the dr how to remove the tube lmao .....Dr Matt to the rescue ,,,didnt know what the lock was with string attached ,,so i got out a coin said unlock that ,,pigtail straightened and tube out bobs your uncle ,,,,,,why oh why is such an easy procedure not known by the nurses etc ,,,,hope the poster above popy86 who i must say is switched on regs tube types and albumin ,,,should have to go through that what so ever ,,,good luck to her and her husband poor chap .....signing off matt
Firstly, I have had many done..prior to my transplant they were draining me every 10 days..sometimes up to 19 or 21 liters.
Mine were ALWAYS done on the ward.
I am lucky..at Addenbrookes Hospital they have two full time drain specialists who are ward sisters also, and the nurses are always trained. So someone was around always to remove the drain.
I always get oramorph prescribed for just after the drain is over. They can be a bit of cramping as the organs move back into place..remember they are pushed out of whack due to all the fluid..especially if it is in all 4 quadrants.
Unless then put a shunt in, you will have to deal with this. Is he on the transplant list yet?
I would go home and go straight to sleep, and still sometimes have pain/cramping the next day.
My ascites was debilitating, at best. People thought I was about to give birth..to triplets I would get so big.
You MUST keep sodium OUT of his diet..That is so important for those with ascites.
Another thing..after a while, once the drain was in, the minute I started feeling pain or cramping, I would ask them to turn it off..this was normally within 2 or 3 liters of what the specialist was ordering anyway..but after a couple of years of this, I know my body well enough. Speak to your doctors about the pain. Some pain and cramping is normal..but if he is in tears..something is wrong..and they need to prescribe something stronger, like oramorph to help him afterwards.
Also, when one side gets drained a lot, the skin gets tougher, which can hurt. Ask them to switch sides..if you need too, every drain.
I also keep a record of how much they drain. I tend to drain very fast. Make sure the albumin is ready to go at 3 liters. That protein replacement can help with the pain also..at least in my mind, but its needed every time there is a drain. I always get one bottle for every 3 liters drained.
But keeping track of how much fluid they empty every time is important also. My partner also watches the bag, and if it gets too full, he runs to tell them.
I also choose glue to stop the leaking of blood and fluids. But that's my choice, because I tend to drain sometimes after, so that stops it.
Ive heard so many people on here in pain, or just unable to get drains because they don't have the staff..I think that is crazy!
Actually, my drain specialist is giving a training day soon to teach nurses how to drain properly.
She trains the doctors and nurses at Addenbrookes..and does more drains in the UK than anyone else..up to 15 weekly on the average.
good luck. Speak to your specialists right away about all of this.
hi kimberly,,nice info as usual ,,i had no idea about the glue option as i leaked like a sieve first few drains ,,that part of it they also dont realise not all the fluid is drained and it comes out of the incision,,i used to slap on a very sticky waterproof plastic plaster,,to contain ,,it ,,but now its ok ive not had one in a long time and the last one i didnt leak atall,,,,,all the best matt
Thank you to everyone who responded. I am complaining this time to PALS as it's just horrible. It's the lack of care that hurts me the most. The more people I talk to the more i learn how common place it is in our local hospital the lack of care. Breaks my heart.
I can be quite obsessive I went on medical websites to see the procedure for how to insert drains, remove them etc. I always check how much is being drained and try to be as on it as possible. It's stressful though sometimes I just want to take over and do it myself. Hubby's stubborn about pain killers though sometimes I think he just gets so scared, confused and overwhelmed he can't think straight.
Unfortunately he isn't on the list yet as we were let down massively due to the GP not referring him to cardiology. (The only reason he has one now I believe is that I went to see my GP in tears and she did it for me) i just spend so much time being pushed from department to department.
I just want people to do their jobs. Not too much to ask!!
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What happens to ascites post TIPSS procedure?
Drain cycles
has anyone had a permanent drain fitted for ascetics ! 
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