Question about Ascites build up and drainage.

[Natsmb]

I had an Asepts drain placed Jan 11, (2021)-So it's been a few weeks.

First, who's had experience with regular ascites draining -(my particular ascites is due to ovarian cancer progression in the abdomen)? Mine started out 1x weekly. Each week successively I drained approx 950mL. Is that typical?

After each drain, I lose all energy to move out even get out of bed to use the restroom. I need a lot of help to get up and down. By the next afternoon if the drain, I and super duper fatigued- just unbelievably exhausted-stay in bed all day-barely shift in bed because it's too fatiguing and I'm too weak- TIRED.My stomach is tender to the touch and also when I cough or move or stretch.

My lungs seen to gather a little phlegm and I cough up clear phlegm more that usual.

THIS week, I felt I needed to drain it two days early. So much pressure. It drained the same as before! Not less. Surprising, since I had drained it as but earlier, I would have expected it to be a couple hundred millimeter less. The nurse decided it would be good to drain it three days later-Friday-and not wait a full week. Three days later, I drained even more that I had on Tuesday! It jumped from 940mL to 960mL in just three days!. At that rate it seems to build up from an original average of 140mL/day to 184 mL/day to now, 315mL/day.

It's it possible I just never had it completely drained the first time? Nurses are the ones doing the draining. Unfortunately, it maybe a case of no one keeping track because I've had four different nurses draining it five different times. Is this the norm?

My stomach stays pretty firm and solid instead of soft. I'm fairly bloated most the time. Most of this is probably cancer related but I'm not sure what to do with the ascites issue. Are there more things I should be questioning about? I don't think nurses are going to do it for me I've learned my lesson hospice simply does what you tell them to do and makes you comfortable and that is all. Anything I want looked into further or addressed in greater detail I have to push myself.

At the moment, in spite of already having diagnosis and treatment of plural effusion, less than four days of reentering hospice, I'm getting the runaround about getting my plural effusions drained. apparently they do not want to standing order because perhaps it's too expensive? So they must go with a plurex drainage catheter as the other option. the doctor agreed that would be done but they're fussing about who to pay for it and I'll be darned if I let them make me wait six to eight weeks like they did with this society strainage thing to look into it and make up their mind who, what, how etc is going to pay for this sucker while they kick it back and forth between administrative offices as I suffer it out getting the runaround.

I'm on medicaid. I suppose I can probably make a formal complaint or request somebody to advocate for me if I would like to speed things up a bit? Any suggestions in that area also could help. I'm in New Mexico, America.

[Lyndy]

Hello.... very interesting! I also got the run around on pleurex drains last year... I think they were struggling to find someone who knew how to do them effectively. On transfer to another hospital it was much faster. My experience of draining is that it does wipe you out and it may be beneficial to do little and often under your own control. When I had large amounts (over 500 ml) drained it crashed my blood pressure. Good luck with it all xx

[Natsmb in reply to Lyndy]

Oh thank you! That sounds much better. I'll have to argue that I need more of the drainage kids but less more often sounds like it may keep me from crashing like it has been.

[delia2]

Hi. I have no experience of drainage but with regard to the delay in getting pleural drainage would you get better treatment if you went off hospice and back to the oncologist? I’m just asking because you seemed to think funding might be the problem. I’m sorry the draining takes so much out of you! Xx

[Natsmb in reply to delia2]

It's the plurix catheter drain that I need. I had to do that exact process to get the parasitesis drain. I hope I don't have to but you were right. I may need to. 😟