Pros and Cons of APD.

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wing
Posts: 345
Joined: Tue Aug 03, 2004 10:56 am

Pros and Cons of APD.

Post by wing »

I have recently started on APD (within the last week) and am not sure if it is "for me".
I would appreciate hearing views from those of you who have been using an overnight system for some time - to see if you can convince me!
I am well aware that I am being completely irrational (a woman's perogative!), but I do sort of resent the 11 hours I have to be tied up to the machine at night. I know that I would only be sleeping anyway so what's the difference?, but I don't like having to plan my bed-time today around what I may want to do tomorrow - I feel somehow that I've lost some control (and I know - how much of that do you have anyway?).
I think what makes matters worse is that I work in a call centre so I'm tied up to a dialysis machine for 11 hours at night then I get up and go to work and I'm tied up to a telephone via a headset for 8 hours - only 5 hours freedom of movement each day!! (and I'm not even into bondage!).
Is this just novice's jitters?
Will it get better?
Has anyone else started on this method of dialysis and given it up and reverted back to 4 daily exchanges? - if so, why?
I would appreciate hearing of your experiences.
Thanks.
JMan
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Post by JMan »

I've never done modern APD, only CAPD but what I can say is that what suits one person may not suit another.

If you find CAPD or even one of the flavours of hemo (thrice weekly, daily, nocturnal, Hi-flux are all possibilities these days tho some trusts need kicking before they will offer them) suits you better then there is no shame in changing. I know plenty of people who HAVE. Ask the questions, get the info then decide what works for you..
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Hal
Posts: 617
Joined: Wed Apr 21, 2004 9:56 am
Location: Liverpool, UK

Post by Hal »

Hi Wing,

Personally if I had to do 11 hours a night, I would not do APD. 11 hours is a very long time, you are the first person I have heard doing this (a couple of people I know have to do 10 hours and a manual exchange during the day).

I do 9 hours a nite and this is enough - although I always like to read before I go to bed and need 8 hours sleep really anyway.

Have you had a PET test ? If not, how was the decision made that you needed 11 hours a night ?
Are you 'dry' during the day or do you have some fluid in you ? (if you are dry during the day, you would need to do more dialysis at night probably).

Also if I want/need to be flexible on my time to get up early / go to bed late, I can set the machine for OptiChoice, which means I will do one of my cycles in the early evening, then disconnect and come back and do less time (around 7 hours).

I know a good few people who have decided APD is not for them, but often due to sleep deprivation! (I have been sleeping much better recently, but at first I struggled).

Good luck,

Hal.
amanda in CA
Posts: 1806
Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

APD

Post by amanda in CA »

I too do APD over a 10 hour period. I must admit that I play around a lot with how I do it. Sometimes, if I am going out I do a shorter period of time through the night and do an exchange in the daytime to make up for it. I never connect up for the whole duration. Once I am on dwell during the evening, I disconnect and go and do what I want. When I first started, I would connect up at about 9.00 and then stay in bed for the rest of the night, but soon realised that would drive me mad. I am sure that some dialysis nurses would 'tutt-tutt' at disconnecting but then the infection risk is no greater than doing CAPD where you are connecting/disconnecting 4-5 times per day. Is there any reason why you couldn't do a day-time manual exchange so that you could reduce the time that you have to do at night - 11 hours is a long time? If you can get this system to work around you, then you can largely forget about dialysis the rest of the time, and from a psychological viewpoint I have found an improvement because of that. My machine chugs along at night and I have incorporated its noise into my relaxation thoughts, imagining it to be a motor boat in the distance while I am lying in the sun. Hope that you get to work it out, but at the end of the day you need to be comfortable with what you are doing and do what suits you best. Amanda
LadySycamore
Posts: 73
Joined: Tue May 18, 2004 9:48 pm
Location: Philadelphia, PA USA

Re: Pros and Cons of APD.

Post by LadySycamore »

wing wrote:I have recently started on APD (within the last week) and am not sure if it is "for me".
I would appreciate hearing views from those of you who have been using an overnight system for some time - to see if you can convince me!
I am well aware that I am being completely irrational (a woman's perogative!), but I do sort of resent the 11 hours I have to be tied up to the machine at night. I know that I would only be sleeping anyway so what's the difference?, but I don't like having to plan my bed-time today around what I may want to do tomorrow - I feel somehow that I've lost some control (and I know - how much of that do you have anyway?).
I think what makes matters worse is that I work in a call centre so I'm tied up to a dialysis machine for 11 hours at night then I get up and go to work and I'm tied up to a telephone via a headset for 8 hours - only 5 hours freedom of movement each day!! (and I'm not even into bondage!).
Is this just novice's jitters?
Will it get better?
Has anyone else started on this method of dialysis and given it up and reverted back to 4 daily exchanges? - if so, why?
I would appreciate hearing of your experiences.
Thanks.
I started out with the overnight exchanges. Didn't like it at first, and still don't like it (just the idea of being sick and having to do dialysis period), but after 2 years, I'm used to it. Glad that I didn't have to do 4 exchanges at first, or else I wouldn't have been able to work. I'm still trying to find work, but at least I can say that I have my days free in order to look, y'know? BUT, I do understand what you are saying by feeling "tied up" to a machine for hours on end (felt that way on hemo too), and the idea of having to plan things more now: vacations, bedtime, etc. I hate it with a passion, I'm not going to lie to you. To go from doing what you want, whenver you wanted, however you wanted to do it, to planning and schedules and boring routines day in and day out...ugh it sucks. However, gotta do what I gotta do.

I just recently got back from vacation in New England, and I resented the fact that I had to make sure that I didn't forget to bring all the essentials with me (which I did the last time we went out of town...luckily, we only did one night away that time). I went over everything a million times and as we were leaving, I was scared s**tless that I forgot something, but turns out I didn't, but I know that I'll be that way every dang time we go away (due to my slightly paranoid nature). *sighs* I also remember telling my boyfriend as we were leaving to go home that even if we wanted to stay an extra night or so, that we couldn't b/c we only brought enough to last us the time we had planned (oh sure we could have called Baxter, but I have a feeling to call them last minute like that would have been a problem), so spontaneity is pretty much dead and gone now. :evil: Nature of the beast I suppose.

But, we try to make the best of it. And you will to. You'll get accustomed to hooking up every night. It's gotten to be old hat with me now. I still don't like it...lol.

Good luck.
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pamom2
Posts: 23
Joined: Tue Aug 10, 2004 11:42 pm
Location: Pennsylvania

Post by pamom2 »

To each his own. I love doing night dialysis. I hook up, drain then fill and disconnct while I dwell and do want I want for 2 hours. My cycle is 9 hours. It's true that your nurse frowns on disconnecting but if you take the right precautions then nothing should happen. My tubing reaches to my computer so I have something to do besides sleep. I'd rather do it during the night and have my days completely free. Good Luck!
LW Adams
Posts: 16
Joined: Sun Apr 25, 2004 4:31 pm

Post by LW Adams »

Hey I also do 10 hours at night, I find it a kind of a pain but I've lived with it for over a year now. The real pain is getting my times together, like tonight, I have to be up in the moring by 0500 so I can be in the city by 0700 for my pre-op and final crossmatch. other wise when I start I just get set and log on the net and go to bed when I feel like it.
Hope this helps
amanda in CA
Posts: 1806
Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

APD and a bit of an aside about renal nurses

Post by amanda in CA »

Hey, Pamom2 who cares what renal nurses do and don't like? Sure they have the best intentions but they aren't the ones who are having to live this and on too few occasions do they seem to really empathise. Why is there a greater risk connecting and disconnecting during APD than the times that you have to do it for CAPD? Of course it can be argued that since the disconnection and re-connection isn't necessary then it is introducing an unecessary risk that doesn't need to be there. However, to me it is necessary, if by doing so, it enables you some more flexibility in how you run your life. I've been on dialysis this time around for 20 months and in that time haven't had peritonitis, despite dispensing with some of the more ludicrous precautions that I wasn't expected to take the the first time around with dialysis.

When I first started on dialysis again they had a strange scheme that you would see your nurse when you had your lab work done and then they would phone you with any results and any changes. Then they decided to change this - they introduced 3 walk-in lab draw clinics a week (so you could choose the best time and day for your schedule) and then the clinic appointment was when they got the results back. Well, everytime I am due for a lab draw, my nurse is checking to see when I am going to come in. If it doesn't work out, I then have her phoning me to chase up why I haven't been in, and when I will come in - doh, I'm a 41 year old woman, not a two year old who still needs their bum wiping for them. So not only have the number of occasions that I have to give to clinic time per month, there is not the flexibility that was promised as the plus side.

A while back they introduced a new requirement that patients are invited to attend the group meeting between the health professionals to raise any issues. Well, you can bet your life at my next one, this issue will be raised. Of course, I could discuss it with her on a one to one, but she seems to have a hide like a rhinoceras (humm, don't know how to spell that) and doesn't seem to listen to what people say.

What irks me more is that I don't think that it is particularly to do with my wellbeing that she chases it up, but more to do with targets, paperwork and auditing - can't she get it into her head that all of the dialysis related stuff is a necessary inconvenience and not my purpose for living. It never seems to occur to her that in between clinic visits I am actually living my life and that the whole idea of open flexible clinics is to be able to fit it in to their life in the best way possible?

Sorry about my pennyworth and venting on that subject but I get iincreasingly frustrated as every month goes on.

best wishes, Amanda
pamom2
Posts: 23
Joined: Tue Aug 10, 2004 11:42 pm
Location: Pennsylvania

Post by pamom2 »

Hey Amamda, I agree with most of what you say but I have a great PD nurse. I don't follow her strict rules and suggestions, I do what I think is right for me, like disconnecting when I feel like it and I have been doing this for a year and have not developed peritonitis either. Hopefully if everything works out for me I won't have to do it anymore after Nov. 9th.
Take Care!
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