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lrgh
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« on: January 17, 2016, 04:36:33 PM »

I have less than 15% kidney function and my doctor has told me to decide what kind of dialysis I want, so that everything will be ready when the time comes. From everything I have read, PD seems a better fit but I saw some items about it being a problem if one has a big stomach.  I weigh 234 lbs....I carry more of my weight on my hips/butt, but I do have a big stomach. At what weight/size does stomach fat become an issue for PD?
The other thing is, what about weight loss?  My appetite is very low and with all the restrictions about salt and sugar (I am also diabetic) I'm pretty much eating small amounts of fruit, vegetables, whole grains and fish.....I've lost a lot of weight, and wonder what effect losing weight has if you lose while on PD? Is it a problem?  Or is the lack of appetite something that will go away after awhile? 
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kickingandscreaming
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« Reply #1 on: January 17, 2016, 05:11:56 PM »

I've never heard that having a big stomach makes PD not a good fit.  And losing weight it perfectly fine as long as you are not sacrificing nutrition.  You will need to force feed protein with any form of dialysis, but PD demands the most.  I have read about people having very varied experience relative to PD and weight.  Some say that they feel so full all the time that it's hard to eat much.  Others, like me, are not losing weight because the dialysate used is made of dextrose (sugar) which, as we all know, is anathema to diabetics.  I have been diabetic for many years and have controlled it without medication with just a low-carb diet.  Now, without getting any pleasure from it, my body is swimming in sugar, thanks to the dialysis fluid.

I think we should be marching in the streets to protest using "sugar-water" as the PD dialysis fluid when at least half of ESRD have the disease because of diabetes.  Duh!  Does that not ring some sort of a bell?!  Does is make one whit of sense to pour sugar into diabetlics and think that you're doing them a service?  I ranted to my nephro about it the other day when I saw how much my blood sugar went up right after a PD exchange.  She told me, without skipping a beat, that most of her PD patients become diabetic from PD.  Am I missing something here"  Does this make sense to anyone else?  When I asked if there was anything in the pipeline about PD fluids that don't cause or worsen diabetes she said "no."  Where is the outrage?

I think PD is a decent strategy--except for this.  I'm needle phobic, so hemo is not at all appealing to me.  So if PD doesn't work, or makes be too sick with diabetes, my choices are few.
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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
cassandra
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« Reply #2 on: January 17, 2016, 10:36:06 PM »

I've never heard that having a big stomach makes PD not a good fit.  And losing weight it perfectly fine as long as you are not sacrificing nutrition.  You will need to force feed protein with any form of dialysis, but PD demands the most.  I have read about people having very varied experience relative to PD and weight.  Some say that they feel so full all the time that it's hard to eat much.  Others, like me, are not losing weight because the dialysate used is made of dextrose (sugar) which, as we all know, is anathema to diabetics.  I have been diabetic for many years and have controlled it without medication with just a low-carb diet.  Now, without getting any pleasure from it, my body is swimming in sugar, thanks to the dialysis fluid.

I think we should be marching in the streets to protest using "sugar-water" as the PD dialysis fluid when at least half of ESRD have the disease because of diabetes.  Duh!  Does that not ring some sort of a bell?!  Does is make one whit of sense to pour sugar into diabetlics and think that you're doing them a service?  I ranted to my nephro about it the other day when I saw how much my blood sugar went up right after a PD exchange.  She told me, without skipping a beat, that most of her PD patients become diabetic from PD.  Am I missing something here"  Does this make sense to anyone else?  When I asked if there was anything in the pipeline about PD fluids that don't cause or worsen diabetes she said "no."  Where is the outrage?


I thought that there's PD fluids containing icodextrin?
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Charlie B53
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« Reply #3 on: January 18, 2016, 07:27:13 AM »


I carry Ico during my 'long' dwell.  When I was doing manuals by day then I carried the Ico all night.  On the Cycler at night we've switched and I carry the Ico all day.

The different type of sugar in the Ico isn't seen by the body as adding to the blood sugar like 'normal' sugar.  It does not cause any calorie gain.

However, for those Diabetic patients, lilke me, some BS Meters CAN BE ensitive to ICO and will give a false BS reading which could lead to an insulin overdose.

Anyone using ICO should be made aware of this and make sure they are using the correct meter.  I am told my Ultra One Touch is one recommended meter.


I don't know that belly size is a factor wheter PD is a viable treatment or not.  I had 'ample' belly, and it works fine for me.

I would imagine a substantial 'belly' could be a concern in that there could be surgical issues in getting the cath placed initially.  However, once placed, and tunneled up to the mid-chest area as mine is, there shouldn't be any substantial problem.

I've managed to lose so far in 2 1/2 years 100 pounds due to the increased pressure of the constant fill of PD solution leaving sufficient pressure on my stomach that I no longer have near the appetite, cannot eat near the volume, that I did before.  I have been slowly losing the excess weight.  It may be a number of years yet before I even think that I am 'under-weight'.

Not to worry.

If anyone truly believes they may become 'Diabetic' simply because of PD solutions.  I recommend you start looking back through your med records, for years.

My sugars ran borderline high for years.  Dr's kept telling me I was 'borderline' diabetic.   Once my sugars really crossed that line I was sent to  a new set of Dr's where I learned that there is no borderline.   If your sugars are high then you ARE Diabetic.  No if's and's or but's.

Once taking insulin and settled well into a controlled balance I learned how the sugar from the solution would only raise my sugar 30 points throughout the night.  That is all.  That is measured at the end of 11 hours on the Cycler.  A couple units of insulin and I was back to 105.  Never a problem.

I would venture to say that there are far more Diabetics that become Dialysis patients due to the sugar damaging the kidneys, the there ever will be Dialysis patients becoming Diabetic.

It is more like the kidney failure has caused the patient to finally seek medical attention and then be also found to have high sugars.


Take Care,

Charlie B53


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kickingandscreaming
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« Reply #4 on: January 18, 2016, 02:34:45 PM »

Quote
I thought that there's PD fluids containing icodextrin?

I know about icodextrin and I asked my neph why I couldn't have that for my overnight dwell (I'm still on manual PD) and she said absolutely not.  It's too expensive and would never be acceptable to the powers that be.  Maybe i'll get it when I'm on the cycler, but it's no guarantee.  They seem to think it's nothing to go from diet-controlled (well controlled ) to out of control diabetes and that I should just shut up and accept it.
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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
cassandra
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« Reply #5 on: January 19, 2016, 01:17:14 PM »

Have you tried writing to your Medical Director about that? Please do try.

Luck and love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Charlie B53
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« Reply #6 on: January 19, 2016, 03:13:30 PM »


I had written a response, but somehow it failed to post, so I'll try again.

Unfortunately 'bean counters' have a  large influence in Insurance coverage.  With the Underwriters they limit coverage so as not to have to pay out for coverage of many things.

I'm told ICO is ridiculously expensive.  Anywhere from three to five times that of the other PD solutions we use.

Depending on what coverage you have for your treatment it very well could be that 'they' do not want the added expense of you using ICO.

An example.  Many many years ago my Wife's Dr prescribed those purple anti-acid pills.  Back then they were prescription only and costs stupid amounts as they were pretty new.  Dr order her to take FOUR times a day.  Insurance would only pay for THREE times a day.  Dr got an attitude and wrote a Nasty-Gram to the Ins Co.  The Company paid for FOUR times a day.

Then the Insurance Co lobbied the FDA and managed to get that whole class of meds re-classed as OTC.  Now they don't pay for any of them.

The point I am making is that your Dr can override the bean counters IF the Dr determines the med is 'medically necessary'.

This may not work with ICO as you can use the other solutions.  You do NOT always have to have an all-night or all-day dwell.  Unless your Dr can spell it out to justify your need.

I am very fortunate that I am a Service Connected Disabled Veteran.  The VA Hospital is my primary caregiver.  If it wasn't for the VA I would have lost my legs long ago.  They both still work fine.  Thankfully.  And I would have been dead and buried a couple of times over.  And now for the last 2 1/2 years they have backed my care at the Dialysis Clinic.  My VA Dr is also my Neph at the Clinic.  I Believe that I am Truly Blessed, and well enough cared for.

So I have no idea of any of the costs that may come to the rest of you.  All I know is if I had to pay any of these costs, I couldn't.  I would either lose my house, or die.  I  don't know, and can't know until it ever happens.
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Charlie B53
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« Reply #7 on: January 19, 2016, 05:35:42 PM »

Now I feel stupid.  I see now why my post never showed.  I didn't hit the 'Post' button.  I was here in the bedroom this morning, wrote my response here but was interrupted by the Propane Guy.  I wasn't quite finished writing so just shut the lid on the laptop thinking I be right back. A few hours later I was using my desktop machine in my 'office' and there I saw my response hadn't posted.

D'oh!    Just goes to show, I'm a Guy.  I can still do stupid things.  My memory has better times than some other times.  Oh Well.   I still like pleasant surprises.
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kickingandscreaming
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« Reply #8 on: January 20, 2016, 11:12:38 AM »

Quote
Unfortunately 'bean counters' have a  large influence in Insurance coverage.  With the Underwriters they limit coverage so as not to have to pay out for coverage of many things.

I'm told ICO is ridiculously expensive.  Anywhere from three to five times that of the other PD solutions we use.

Depending on what coverage you have for your treatment it very well could be that 'they' do not want the added expense of you using ICO.


I have Medicare Advantage plan so they will probably not pay for Ico.  They'd rather pay for the neuropathy and blindness and amputation my now uncontrolled diabetes will likely cause. :sarcasm;
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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 #9 on: January 20, 2016, 06:04:26 PM »


You have GOT TO get your sugars under control in order for PD to work well.

  The higher % of sugar in the PD solution 'draws' water out of your body.  Or at least that is how it is 'supposed' to work.  Diabetics with high blood sugars don't have that much difference between the %'s and that 'exchange' does not work well at all.

You and I need to have a serious sit down and talk about your sugars.  My Wife never listened well and her suager have always ran wild, even taking the oral and both slow and fast insulins.  Multiple eye problems and now there is some degeneration of her kidneys.  So she FINALLY started to listen to me.

I gained TOTAL control of my sugars the first month and a half.  By the end of the third month my A1C dropped from 10+ to 6.. Endo Dr told me to keep it up and don't bother to come back, I shouldn't need anything except to have my PCP re-write my prescriptions.  That was 2 years ago.


Where are you?   We can do this out in the open on the board, or PM's, email, telephone,  Whatever works the best for you.

And once you learn you are going to realize it wasn't' near as hard to do as you thought.  All you got to do is TEST, regularly, and WRITE IT DOWN.   Everytime.

We will talk more.  Right?
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kickingandscreaming
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« Reply #10 on: January 20, 2016, 07:28:22 PM »

I have been keeping my sugars in the low 6's (A1c) without any meds, for about 7 years,  just by controlling my carb intake.  It's too early to know where my A1c will go with this onslaught of sugar.  I am already eating in a very controlled way.  I know I would be unable to do insulin as I am totally needle phobic (when self inflicted) and I don't think there are many other drugs that are OK for dialysis patients.
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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
cassandra
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« Reply #11 on: January 21, 2016, 06:19:15 AM »

I have less than 15% kidney function and my doctor has told me to decide what kind of dialysis I want, so that everything will be ready when the time comes. From everything I have read, PD seems a better fit but I saw some items about it being a problem if one has a big stomach.  I weigh 234 lbs....I carry more of my weight on my hips/butt, but I do have a big stomach. At what weight/size does stomach fat become an issue for PD?
The other thing is, what about weight loss?  My appetite is very low and with all the restrictions about salt and sugar (I am also diabetic) I'm pretty much eating small amounts of fruit, vegetables, whole grains and fish.....I've lost a lot of weight, and wonder what effect losing weight has if you lose while on PD? Is it a problem?  Or is the lack of appetite something that will go away after awhile? 

Sorry for straying from your original question for a bit Irgh. I don't know about the 'losing weight' bit being a problem, but eating enough protein while being on PD is very important.

Love, Cas


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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Charlie B53
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« Reply #12 on: January 21, 2016, 08:10:19 AM »


Let's see if I got this right.   234, female, carrying it in your waist, butt, and hips.  Sounds like the classic 'pear' shape.  Right?  Or close enough?   NOT an issue, or at least not enough for you to stress about it.

As a 'Guy' I had sort of the very same 'largesse'.  Only larger.  I was up to 310 before I started PD.  Granted the last 40 pounds of that was pure water that my failing kidneys absolutely could not take off, even taking 6 times the lasix of a more 'normal' man.  PD took that water off, and over the next 2+ years the PD pressure on contantly carrying 2 liters has 'limited' my hunger, also when I do eat tends to cause me to feel 'fuller' sooner, and I eat less than all those years prior.  So I've have been losing weight just a little at a time, very slowly, I'm now 220.

I never cared for the Dr's Body Mass Index.  It always seems to tell most everyone that we are 'obese'.  Many ignore it and just continue living our lives.  220, is the same weight I was in High School, and when I ggraduated out of the Army Basic Training, and the next 30 plus years.  So I am quite tickled to be down to 220 again.  My Neph agree's.  My Primary, well, that's another story.  She wants to follow the BMI and have me at 180.    Maybe, someday.  Just not today.

My point is, don't waste your time worrying about your weight.  Yes, chances are you may lose some while on PD.  OK Fine.

Are attention is better spent doing PD, what your labs are, how those labs can be affected by some of your diet.  And I'm talking about the potassium and phosphorus NOT calories.

Pay attention to these important things, and somewhere along the way these not so important things may, or may not, take care of themselves.  If not, because you will have learned to deal with the important minerals in your diet by then starting to pay attention to those others will become eaier, as you will already have learned through experience how.
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kickingandscreaming
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« Reply #13 on: January 21, 2016, 09:35:23 AM »

The BMI (Body Mass Index) has been discredited by many, but still persists as most old and discredited information lingers long after it makes no sense.  The BMI cannot take into account how much of the body is muscle and how much is fat, the super athletic muscle-bound people have a high BMI, and they are certainly NOT fat.  And muscle weighs more than fat.  Some people have large bone structure, others have small bird-like bones.  The BMI has no way to deal with the body composition so it is a flawed measure at best.
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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
lrgh
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« Reply #14 on: January 21, 2016, 06:49:18 PM »

i've seen references to eating "enough" protein.....but what is enough?  I've never been a big meat eater, and I've pretty much cut out cheese because of the sodium.  I eat a lot of nuts, but
i know that might be a problem when I start dialysis. I don't find tofu objectionable.....is it OK, kidney diet wise?  I do eat meat/fish, but I suspect I might not be eating enough--less than once a day.  Maybe I should eat more eggs?
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cassandra
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« Reply #15 on: January 21, 2016, 07:11:35 PM »

I think Davita has a list about how much protein and Phosphate is in foods. So check the tofu cos I forgot about that one. As far as I remember with PD you need to eat 1.2 grams protein per kilo body weight. There's enough PDers with more and more recent experience who will be able to inform you surely. And so should your nephrologist and nurse.

Good luck and love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Charlie B53
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« Reply #16 on: January 21, 2016, 08:03:38 PM »


Fortunately there a many cheeses that are still acceptable for us, both dialyzers and diabetics.  There are low-fat cheeses, low-salt/sodium.  Quite a varity.

Protien isn't onloy found in meats, chicken, and fish.  Many vegans eat sufficient protien found in various foods.  I need to learn more about those myself.  Jello?  There's ALWAYS room for Jello!  You may have to check with your Nutritionist about the nuts.  Not only are many salted, but some contain ????? I don't remember if it's potassium or phosporus?

I happen to like hard boiled eggs.  Cook them up by the dozen, once or twice a week.  Always have some in the fridge for a healthy snak.  Far better for me than Little Debbie cakes!

Monthly labs are good as they remind me if or how well I am doing. 

This whole diet thing is an on-going learning process.  No way can we know everything about every possible food.  Learn a little every week/month.  Make small improvements.  By this same time next year hopefully we will each have make enough 'little' changes that our labs will stay in the middle of the 'acceptable' range.

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kickingandscreaming
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« Reply #17 on: January 22, 2016, 06:17:34 PM »

The whole protein business is a real dilemma.  In dialysis we are all told to eat LOTS of protein, but protein comes with a heavy phosphorus payload, and phosphorus is dangerous to us.  So we have to force feed high quality protein (meat, fish, poultry and eggs and whey protein isolate are some possiblities) but also need to take phosphorus binder (expensive pills) to "bind" the phosph while keeping the protein.  Some foods that are high in protein, e.g. cheese, nuts, beans are also high in phosph and potassium, so they are not ideal because there are "purer" ways to get your protein.  Eggs are the most perfect form of protein.  Almost all the protein is in the egg while and almost all the phosphorus is in the yolk  So for breakfast, I have an omelet made from 3 egg whites, one yolk and a dab of cream cheese (one of the OK cheeses) with some salt-free seasoning.  It's actually very good and quite a protein punch with a low phosphorus payload.

Certain whey protein isolate powders can also make good smoothies and are very high in protein with very little of the bad stuff.  it's a leaning process. Some nuts are better than others.  Macadamia nuts are the lowest in phosphorus and the highest in the best kind of fats (MUFAs), so I eat maybe 6-8 nuts/day).  I am working on a a recipe for a protein bomb made from whey protein and either peanut or almond butter (in modest amounts).
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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 #18 on: January 22, 2016, 07:11:49 PM »


Maybe I should print part of that so I can re-read it again and again until I remember.   That's exactly the type of information we all need to know.

Thanks!!!!

There is a section, don't remember the name without looking, you can post important diet and food tips exactly like these.  And then I'll know where to look.

Thanks Again!

Chalrie B53
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