Dialysis treatment

[sketch]

My father has struggled with dialysis for about 14 months now. He just doesn't want to let it happen, he fights it. He has a port because his fistula operation went badly wrong. Twice now, he has refused dialysis for over a week, ending up in the hospital both times. Because of his intense dislike of the the whole procedure, I asked if it was possible to cut the sessions down from 3X/week to 2X/week. The answer was that that wasn't the recommended level of care. I understand that but the final outcome for him is not to recover. The treatment is for sustainability. Do any of you have any experience with less frequent sessions? My concern is that the dialysis center/doctor has a massive loss of income when my father isn't there and he just doesn't want to lose that. The doctor is rarely there, the PA is great and does all the work. Most of the nurses are surly. Just not a good experience at all.

[Dianejt]

If he goes down to 2x week he could have problems with fluid in the lungs & have a hard time breathing. We where going to go to 2x a week but Frank had a hard time with the fluid build up

[sketch]

Thanks. His main problems when he goes without for a week are fluid build-up in the legs and stomach. He doesn't seem to have breathing problems. He complains of an upset stomach and diarrhea, which keeps him away from dialysis. I'm sure that excess fluid compounds the problem but he is very stubborn. Has anyone had stomach problems etc.. while hooked up to the machine. How does the staff deal with it?

[pdpatty]

Thanks. His main problems when he goes without for a week are fluid build-up in the legs and stomach. He doesn't seem to have breathing problems. He complains of an upset stomach and diarrhea, which keeps him away from dialysis. I'm sure that excess fluid compounds the problem but he is very stubborn. Has anyone had stomach problems etc.. while hooked up to the machine. How does the staff deal with it?

In the center where I am treated,the tech will unhook the person,cap off the cath and allow them to go to bathroom.  Time off is added to machine so you get full treatment.

[KICKSTART]

Huh in ours (mixed unit) they wheel out a commode.

[Stoday]

I asked and they said they'd cap off the tubes to the fistula.

Kiscstart — Does the commode mean they won't cap off? What happens if there's a fire? (Imagines KS being wheeled out on her commode )

[RichardMEL]

I wouldn't at all be surprised if the upset stomach was due to the vast increase of toxins in his system by missing 2-3 sessions in a row - that cannot be underestimated - by not having them removed they are getting up to dangerous levels (eg: Potassium). Some patients can pass away without having dialysis for TWO weeks, so you do need to be aware how serious it is missing one week - and as you already know he's wound up in the hospital both times. Sorry I don't write that to scare you or to try and alarm you, but it is a fact. Is he following any kind of renal diet and/or limiting his fluid intake at all? That could also be a factor.

[KICKSTART]

I asked and they said they'd cap off the tubes to the fistula.

Kiscstart — Does the commode mean they won't cap off? What happens if there's a fire? (Imagines KS being wheeled out on her commode )

No dignity at our unit , luckily it doesnt happen very often , but out comes a commode or bed pan and around goes the screen . Im afraid if my stomach was upset i wouldnt go in that day, before you would get me on a commode in a room full of people ! In the case of fire , its wash back and off ! No rush eh ! Im a bit more stuck because i have a tunnel line in ! They would probably get me to walk out pushing my machine along 

[sketch]

Richard, Dad was having stomach problems prior to missing dialysis. I know that skipping treatment only exacerbated the problem. It turns out that an overabundance of Coumadin prescribed by the nephrologist was causing excessive bleeding, which is why he ended up in the hospital. He is now on low dose aspirin and is back to dialysis. He looks and feels better, of course. This cattle call way of providing dialysis is very disturbing to me. I'm not as involved as most of you and am appalled by the loss of dignity to that extent.

[RichardMEL]

In my unit patients are given as much dignity as possible. More often than not patients are taken off the machine if they need to go to the toilet. As you can appreciate sometimes it's not possible/practical to do that and then yes it's the curtain and bedpan type deal. I'd much rather that than the time I was put next to a poor old gentleman who had some real problems with his bowels and it was unfortunate for all involved. I mean what can you do in that kind of situation? They can't have private rooms for everyone unfortunately.

I can assure you though that in this respect everyone's treated with as much dignity as can be. I'm not quite sure what you mean by "cattle call" - yes, there's a room of six or so of us all around in chairs and machines. That's the way it is. I suppose I am lucky in that I have control of my facilities and don't need any of that type of thing, but if it happens.. it happens. Dialysis is life support. I think at this point we need to accept that some things (s$@t) happens and it's also a normal part of life. The focus for me *is* on Life.

It would be great when there can be a future when there is no need for such setups, but until then I'm glad we have it - for without the "cattle call" I wouldn't be alive anymore.. and I'm not finished chasing skirt yet for that to happen!!!! 

[VictoriaG]

I asked my huband what they do if someone has to pee. because i know i cant go 20 minutes without. he laughed at me and said, "none of us pee, that kinda what the dialysis does"

boy did i feel stupid. this was shortly after starting out on this whole adventure.

however he did say they will "unhook" people and take them to the bathroom. even the ones in wheelchairs. I think the commode would ruin the whole semi sterile environment that is best for hemodialysis. 

[RichardMEL]

Some do still pee - specially the newer patients. Heck after 4 years I still put out a few hundred mils a day (YAY!). In fact just yesterday a gentleman sitting next to me was unhooked so he could go do his business, then he came back for another 3 or so hours.

[Des]

If a female needs to go to the loo, they clamp off and you go to the bathroom. But if a guy want to pee they bring him a bottle (made of plastic) and you hear him go...... very BAD!!!! They don't even close him off or something.