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ShaenaShepherd
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Do not go gentle into that good night...

« on: June 19, 2017, 03:04:55 PM »

Hi. I am very new to home PD. Just started doing it this weekend. My only issue so far is scheduling when to eat and how much. I'm supposed to do the treatments 3 times a day with 4-hour dwell times. Now, doing math, that's a total of 12 hours dwell time. Half the day. Accounting for sleep being 7-8 hours, that only leaves about 4-ish hours of "freedom".
If I eat just before I fill, I have a hard time putting more than 1500ml in (I'm supposed to do 2000). If I don't eat, I get hungry while I'm dwelling and then feel REALLY full if I eat then. I've tried eating smaller portions between treatments, but I'm afraid I won't get the proper nutrition if I just "snack". I'm really having a difficult time with this. Any suggestions?
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Charlie B53
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« Reply #1 on: June 20, 2017, 04:55:14 AM »


Physical injuries and the lack of mobility had caused me to gain substantial weight.  PD and feeling 'full' all the time has helped me lose a bunch of that weight.  Not all, but enough I feel, and look, much better.

I used Ico for a 12 hour dwell all night when doing manuals, then all day while using the Cycler at night.

I couldn't eat near as much as I was used to eating.  But I was used to eating as I did while actively working.  Once disabled this was far too much food and I was gaining weight.

Deciding to eat more 'responsibly' and cutting fat and 'white' made the difference.  Fat is a no brainer, reducing consumption just makes sense.  'White' makes sense if you understand how processed flour products effect the blood sugar, concentrating what turns into blood sugar and speeding the absorption.

Animals do not eat flour, or sugar, in processed form.  Their bodies have to digest the grains individual.  Slowly dissolving each kernel takes far more time than it does for the human body to dissolve and absorb the grain we use ground finely into powder and baked into breads or noodles.

So in my case, loosing weight I simply cut the white carbs from my diet.

Each person needs to find the right 'balance' for their level of activity.  Add or remove the amount of white from your diet as necessary to stay at the weight you determine for yourself.

Large meals are never a good idea.  Animals 'graze'.  They eat a few bits and move on, spreading their consumption throughout the whole day.  Unless you are a predator that kills something and pigs out on it, then go for many many days without eating at all.  We might have a problem with that.

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smartcookie
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« Reply #2 on: June 20, 2017, 06:44:28 AM »

I would ask your dietician about this.  It may be that you can snack throughout the day and get adequate nutrition if you do it the right way and eat the right foods.  I would also ask about a cycler at night so you can dialyze during the night to help with free time (and more stomach room!) during the day. 
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
ShaenaShepherd
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Do not go gentle into that good night...

« Reply #3 on: June 20, 2017, 08:44:43 AM »

I do not want to do the cycler. I don't want to be tied to a machine. That's the reason I chose PD in the first place because I just don't want to be tied to something for hours at a time. I'm too active and get bored easily. I want the freedom of movement and to get up and do what I want when I want. I'm planning on staying on CAPD until I get a transplant. I suppose I'll talk to the clinic dietician about getting enough nutrients and calories by eating smaller more frequent things.
I know this is all new to me and I'll figure out things as I go along, but I just have issues right now figuring out when to do things and how and all that. It's a little overwhelming. They want me to do 2000 ml fills, but sometimes I can tolerate 1500, or sometimes a bit more. I've not gotten all the way to 2000 yet. I suppose that will come in time as my body adjusts to the volume.
Anyway...I'm rambling and I know it. I just have a lot of what ifs and questions and issues. I hope I'm not sounding like a nutjob.
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Rerun
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« Reply #4 on: June 20, 2017, 09:34:15 AM »

Think of it this way.... you will be multitasking at night and your days are FREE.  You have to sleep anyway.  I have a C-Pap machine to sleep with also.  I'm not on CAPD but just saying.  At dialysis I'm hooked to a machine to clean my blood and a machine to help me breath during simple SLEEP.  Just Shoot ME!
 :waving;
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kickingandscreaming
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« Reply #5 on: June 20, 2017, 01:30:03 PM »

In my experience on PD, the cycler is infinititely more freeing than manual exchanges that interrupt the hell out of your day.  And tie you to a schedule of FILL/DWELL/DRAIN ad nauseum.  But it's your choice.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #6 on: June 20, 2017, 07:52:43 PM »


I try to stay active outside.  I did manual PD for over a year.  It was a serious PITA stopping whatever I was doing out in the Barn, yard, garden, whatever, cleaning my hands at least to the elbows. I get dirty, often oily greasy blackness, so I keep a box of Tide powder to scrub off with.  It works.  Then go inside by my computer to do an exchange.  Since I'msitting reading I very often totally lose all track of time.  Let's just say I drain very well, I forget to look.  When I do and start to fill I again lose track and end up spending at least twice as long as it actually takes to drain and fill.  Then I head back to whatever I was doing, until my next alarm goes off, then repeat it all.  Clean up, etc., etc.

I lost a LOT of time.  I didn't get much accomplished.  But I read a LOT!

Once I switched to the cycler I had ALL DAY FREE!!!!!  Whoo Hoo!! I could get things done again!  I just had to spend some of my evening time in front of the TV in my bedroom. Then go to bed at a half decent hour.

I just depends on how you look at it.  Either way you will be spending time doing dialysis.  The Cycler allows you to spend most of that time asleep.

No Brainer for many people.  But still not for every one.
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ShaenaShepherd
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Do not go gentle into that good night...

« Reply #7 on: June 21, 2017, 08:47:44 AM »

I dunno...I think it's all about control for me. I don't like the thought of a machine doing things to me that I don't have any control over. It kinda just freaks me out. Doing manual, I can adjust my fill volume if I'm not feeling well, or some other reason. I can adjust the dwell time if I need to. I just don't like the thought of something taking over that for me. But that's just my issue. Maybe if I educate myself a little more about the cycler, I might try it. If it doesn't go well, I can always go back to manual, I suppose.
You have to understand, this is all very new to me and I'm still adjusting to having to do this stupid thing every single day and I'm still in the "oh god, why do I have to do this" stage. Anything different than what I'm doing at the moment is going to sound foreign and difficult.
Give me time to adjust and ask questions and educate myself more about things and I might try it.
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kickingandscreaming
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« Reply #8 on: June 21, 2017, 09:03:40 AM »

Good. At least you are keeping an open mind.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
smartcookie
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« Reply #9 on: June 22, 2017, 11:35:49 AM »

Dialysis is hard enough as it is, so if you are not ready for a cycler, then just try smaller changes to your diet.  It never hurts to talk about a new form of dialysis, like the cycler, but you need to be comfortable with what you are doing.  Give it some time.  You are young and this is a huge change for you.  I would freak out if I had to go on dialysis and I can understand wanting to be in control of something.  Please feel free to vent your frustrations here and ask for advice from seasoned vets, but always do what is right for you.   :grouphug;
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
ShaenaShepherd
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Do not go gentle into that good night...

« Reply #10 on: July 09, 2017, 05:49:33 PM »

Dialysis is hard enough as it is, so if you are not ready for a cycler, then just try smaller changes to your diet.  It never hurts to talk about a new form of dialysis, like the cycler, but you need to be comfortable with what you are doing.  Give it some time.  You are young and this is a huge change for you.  I would freak out if I had to go on dialysis and I can understand wanting to be in control of something.  Please feel free to vent your frustrations here and ask for advice from seasoned vets, but always do what is right for you.   :grouphug;

Ummm....I'm not young at all. I'm 56 years old. I'm not sure how you got the impression I was young, but I'm actually a mother and grandmother. As far as getting used to it, I am getting used to it. My eating problems are not issues anymore. I'm getting used to the full feeling and have been able to eat full meals while dwelling.
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PrimeTimer
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« Reply #11 on: July 09, 2017, 09:48:18 PM »

Dialysis is hard enough as it is, so if you are not ready for a cycler, then just try smaller changes to your diet.  It never hurts to talk about a new form of dialysis, like the cycler, but you need to be comfortable with what you are doing.  Give it some time.  You are young and this is a huge change for you.  I would freak out if I had to go on dialysis and I can understand wanting to be in control of something.  Please feel free to vent your frustrations here and ask for advice from seasoned vets, but always do what is right for you.   :grouphug;

Ummm....I'm not young at all. I'm 56 years old. I'm not sure how you got the impression I was young, but I'm actually a mother and grandmother. As far as getting used to it, I am getting used to it. My eating problems are not issues anymore. I'm getting used to the full feeling and have been able to eat full meals while dwelling.

Good for you! Since it is YOUR life, the fact that you want control over this has probably won you half the battle. Continue with that attitude and your success with PD will probably continue. I like "go getters" and people who know what they want and what they don't want. That's a sign of strength! Kudos for you!  :thumbup;
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
smartcookie
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« Reply #12 on: July 11, 2017, 11:18:13 AM »

56 is young!  It may not feel like it, but in the medical world, I consider 50s and 60s as young.  ;)
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
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