The REAL reason you shouldn't eat while dialyzing

[MooseMom]

Well, we are all told that we are supposed to educate ourselves and find out as much as possible about our disease, our treatments and how to get the best results.  So, this is just one more bit of information that we all can take or leave as we wish.  If you want to have a full meal during dialysis and your clinic says that's just fine, then by all means do what you like, but at least now you will be armed with a bit more information to help you make good decisions, and that's what this forum is all about.

During the times that my I was visiting Texas to look after my mother, she would often ask me to bring her a Whataburger while she dialyzed, and I did.  No one at the clinic said anything, so I am as guilty as anyone who thought I was doing my mom a favor by feeding her fries and Whataburgers, never knowing about the physiological consequences as outlined by Dr. Agar.  It would have been nice if someone at the clinic had clued us in, but no one did, and that's a bit worrisome.  But even if someone had, it is entirely possible that my mother would not have cared and would still have wanted that Whataburger, but at least she could have made a more informed decision.

We all bang on about fighting to get good dialysis, and it seems that dialysis is more "adequate" if there is more blood available to be cleaned instead of that blood being diverted toward digesting Whataburgers.  I think we are all smart enough to know the difference between a small, easily digestible snack and a stonking great serving of bangers and mash, and I think we are all able to make good decisions for ourselves, but for those in particular who dialyze at home and think being out of a clinic environment enables them to have a main meal while dialyzing, then hopefully this information will be useful.

And boswife, no, it wasn't you I was remembering...it was definintely one of our male IHD members who dialyzes at home.

[lmunchkin]

MM, it may have been me that mentioned it!  Hubby and me do eat alot of snacks while he dialysis's and, with time restraints, have had a full course meal!  But most of the time, we eat big meal before, and then snack a little during!

It is nice to know the real effects of eating while D.  Thank you for that cause I personally, never got a truthful answer on the subject!  But that is the Beauty of doing it at home, you can if you want and if you dont want then you dont!  But what Dr. Agar states does make better sense than anything I have heard!

Mentioned to my husband, and he said probably no more full meals, unless absolutely necessary!  I never thought about the blood used to digest the food!  Dah!!!!!!!!     

lmunchkin     

P.S. Not going to stop the snacking though!  Boredom tends to make us want to eat alot!!!  lol

[okarol]

Two opposing opinions:

Should patients eat during hemodialysis treatments? (2005) http://findarticles.com/p/articles/mi_m0ICF/is_5_32/ai_n17211656/

Why Not Meals During Dialysis? (2009)
http://www.renalandurologynews.com/why-not-meals-during-dialysis/article/154891/

And more from IHD members:

Eating In Dialysis http://ihatedialysis.com/forum/index.php?topic=222.0

[RichardMEL]

I also talked with Dialysis-patients who appeared very suicidal to me;
they felt their dignity was being taken away from them in their Dialysis-centre,
and it was very very sad for me to come across that.

Adding to that, I don’t know if you have recently listened
to phone-ins & discussions on the radio:
it was mentioned that
every day three people on the kidney transplant list die in the UK
and I was wondering whether that was because of bad Dialysis-services,
but reading what you and billmoria say sounds rather encouraging.

Thanks from Kristina.

You have to remember that that stat is much like the "average life expectancy while on dialysis" being at 5 years or something. These figures are skewed because your average age of a D patient is much older, and they probably have other conditions that could lead to mortality. Same with the tx list, even if most on the list would be younger in general (because patients over a certain age.. 70?? in general won't be accepted to be on the list)... even still there will probably be other conditions going on.

Don't get me wrong, if there were more organs available and more signed up to donate (live or otherwise) that figure would go down, but I don't think those figures can be used as a reasonable guide.

In my D unit I was, most of the time anyway, the youngest patient by a mesure of decades. I think just prior to my transplant, we had me-just turned 40, then a guy who was in his early 50's, then the rest being 60+. The oldest patient was I think 89, or 92, or something like that - he had done D for 20 years and unfortunately passed away due to some other complications he had.

I don't know about the patients you talked to, about their ages, if they were even eligible for tx etc, but we all know that this situation can lead to a lot of depression. To be honest with you if I didn't have the goal of tx to "look forward to" I am not sure MY attitude would have been so positive - at times it was the only thing keeping me going - that hope, that desire, for a better form of treatment.

You hear horror stories and good ones. Case in point about my very own unit, which everyone knows I loved for many reasons. It was far from perfect of course, but I was very happy. We had another patient there who was actually a qualified doctor(not renal) who was from the UK. He *HATED* it!!! I am sure he would report horror stories about the same unit that I loved - and we were on the same shift. It's all up to perception and your own experiences.

I don't doubt some units are poorly run and some folks have poor staff either numbers, or skills, or attitude, or whatever.... but for every poor one I think you'll find there are great ones.

I think you should try to not let these "reports" or what some patients tell you scare you. Think about all the folks here who cope well with D. If you can go in and have a positive attitude that can often be all the difference in my view.

of course that's just one view.

[kristina]

Thanks Richard,
your reply is extremely well-balanced
and I think your analysis is probably right
and is very much appreciated.

Thanks very much for your time and thoughts,

kind regards from Kristina.

[Cricket]

IMHO, I think diabetic patients should take charge of their own needs, regardless of what the rules are at your center
Here's something interesting: while in the hospital, a nurse told me that patients are eatng HOAGIES during dialysis because the treatment gets rid of all the lunch meat junk at the same time!  Say what!!!? She's crazy.  That patients are eating tomtoes, bananas, etc. - anything and everything on the no-eat list!!!
This would last in my center about 1 minute, I tell you!!!  OMG
To be honest, I was  told a LOT of things by nurses and assistants that are simply not true....... e.g. Centers ae SOCIAL CLUBS - no way!  Our chairs are so far apart, you can't hold a conversation with anyone.

[boswife]

well welll well okarol.... thank you so very much for the info.  I tell ya, it's a tough road knowing what to do.  Bo's albumin finally is rising and i was thinking mabie it's because of his 'meals' on D then i read about the blood thing and geesh!!   Because he doesnt seem to have issues with dropping pressures, i wonder if then he's on the more OK side to eat.... except then less blood is available for process... oh brother...lol

[lmunchkin]

Just put hubby on D. and we ate:, chicken, green beans, squash w/onion, sliced tomatoes and cucumber w/onion in vinegar!  His BP starting is 160/74.  After we ate it was: 162/74,  Just took again and it is 139/70.

Oh well, kinda throw all Logic up in the air! By the way, clinic called and said to hold EPO!  He was on low dose for two weeks!  Im really feeling blessed to have it peaceful for awhile!

It still makes sense that blood being use for digestive system when someone eats, but today was one of those "time restrainst" evenings!

lmunchkin     

[Restorer]

When I transferred to my current center, a nurse went through all the rules with me. About food, he made it clear that "we discourage eating during dialysis" because of the blood flow issues mentioned here, and that choking could occur if your blood pressure changes suddenly while you're eating. That was the only "discouraging" they've ever done, though. Plenty of people eat snacks and meals while on dialysis, since my shift runs through lunch.

If I don't eat a large breakfast before dialysis or bring a substantial snack, I'm starving by the time I get off. Sometimes when I can afford it, I'll pick up an egg sandwich and coffee on my way to dialysis, and eat it there.

A year ago I was having problems with my blood pressure. It would routinely be up to 170/120 during dialysis (it turned out to be a problem with taking clonidine regularly), but sometimes it would be just fine, 120/80. Eventually I figured out that it went down to normal when I ate a meal as enough blood vessels in my digestive system opened up. For a while, I was eating full meals during dialysis just to keep my blood pressure down.

[mcclane]

when i was training for home hemo, the nurses didn't say anything about not being able to eat while dialyzing.  In fact, before starting the training session, i was told to bring my own lunch.

My training session would start about 7:30 am, after I finished setting up the machine and everything, it would be between 8:45 - 9 am, and I'd set it for a 4 hour run.  About 11:30 am, I would ask the nurses to get my lunch out of the fridge so I could eat it.

[boswife]

Well well, once again it all seems a 'personal' or better yet, 'individualized' situation.    How ya feel, and how you see your pressure etc #'s are going..  I would love to have a personal study done on Bo to see what HIS spacific needs are... ALL of them, eating, time on D, Speed of D etc..  Im on another listserv and we're discussing 'longer slower' dialysis situation and it's blowing me away as well.  Mostly how it equals out weather you go fast or slow, and turbulance vs is it really turblance  etc... lol  Anyway, it's all very interisting to me but i do wish there was ONE answer to it all...

[MooseMom]

I went back to that old IHD thread on this subject as Okarol suggested, and out of all of those posters, not one of them said anything about the physiological effects of eating a substantial meal while on dialysis.  There was, to be sure, a member named Hawkeye who apparently worked for Fresenius, and s/he outlined some reasons why eating was not allowed, one being something about food adding "stuff" to the blood, making treatments less effective.  Even that member didn't mention the idea of blood being diverted to digestion and made unavailable for cleaning.  And I personally think that is an important piece of information to have when you are deciding how much to eat while you are dialyzing.

I just want to remind you all that Dr. Agar's advice was mostly applicable to eating full meals, not judicious snacking.  If I let myself get too hungry, I feel awful, and I can't imagine feeling that bad AND dialyzing at the same time, so if it were me, I'd have something on hand to snack on if necessary, but I wouldn't be eating Whataburgers.  Clinics may have their weird reasons for not wanting you to eat that suit THEM, but if you want some guidance to figure out what will suit YOU, maybe stay away from the Whataburgers.  (I can't believe I let my mom talk me into doing that...)

[monrein]

This is excellent medical information and it is important for us to bolster ourselves with the best available info out there.  I used to eat on the machine, not a huge meal but not a light snack either,  and although it never made me feel ill or drop my pressure, if anything has the potential to make my hours on D less effective then I'd avoid it.  They used to serve us full meals at the hospital and so at that time they too may have been unaware of the blood diversion issue.   

[lmunchkin]

Thats just it Boswife, what may be good for my husband, may not be good for Bo! Wish that "One size" fits all could work with this junk, but unfortunately, it dont!  I like running his Blood Flow Rate low because I want his access to last!  I run it at 380 to 400.  To some, that is not slow enough, and to others its too fast!!  Go figure!! But if you run at a higher BFR like a 450 to 550 you are running alot more blood through the machine thus getting more blood cleaned! Less time too!  But if you run it slower, it is less harmful to him and his blood is still getting cleaned but it takes longer!
I personally run him lower so as to not give him the washed out feeling or cramping! 

He is very quick to let me know what he is feeling! But it is a fine balance. Just tweak here and there and you will find what works best for him! If I were to run it fast, then why not just put him back in center!  That is what they are known for, is wiping you out, right?  Yea, we have to do them more days a week, but at least they are not spending a day and a half getting over the day they dialysised.

As far as the eating while on D.  Yea, it is a personal choice!  I guess in the D world, we are like rebellious and just want to defy the rules!  lol  Just kidding, but we do just snack!  The only time we eat a full course meal is when we a pressed for time.  Even still, it is not huge portions, it just a moderate meal! Do you and Bo eat while he D?  Meals or Snacks?


 

Well well, once again it all seems a 'personal' or better yet, 'individualized' situation.    How ya feel, and how you see your pressure etc #'s are going..  I would love to have a personal study done on Bo to see what HIS spacific needs are... ALL of them, eating, time on D, Speed of D etc..  Im on another listserv and we're discussing 'longer slower' dialysis situation and it's blowing me away as well.  Mostly how it equals out weather you go fast or slow, and turbulance vs is it really turblance  etc... lol  Anyway, it's all very interisting to me but i do wish there was ONE answer to it all...

Im so excited, thanks to House of Dialysis, I can now pull the Quotes!!!      

lmunchkin

[RightSide]

Evidently, not every dialysis center agrees with this policy:

"The London Clinic dialysis unit is managed by a team of specialist renal nurses. It consists of four stations, using the latest haemodialysis machines from Gambro and Fresenius for both standard and high-flux bicarbonate haemodialysis....
"Patients have use of the electrically operated reclining chairs and flat screen LCD televisions with inbuilt Free view channels with headphones.  A selection of sandwiches, tea, coffee and biscuits is also available for patients on request."

http://www.thelondonclinic.co.uk/specialties/dialysis__renal_medicine.aspx

[Riki]

That's not a full meal.  A drink and a sandwich isn't going to do much

When I first started dialysis, because I was in the hospital, as opposed to coming in, I was usually taken in first thing, around 7:30am, so when breakfast showed up at 8am, it was normally sent over to dialysis.  I normally ate my breakfast in dialysis.  I never had a hot breakfast, though. It was normally a bowl of cereal and a muffin, glass of juice and tea.  No one ever told me that I needed to watch fluids, or anything like that.  I think at that point, though, they were happy if I ate anything.

[lmunchkin]

If I saw that my husbands health would suffer in any way by eating, then absolutely, I would stop it immediately!  But his labs are good, he is getting very good clearance (ktv) and if it aint broke, Im not gonna fix it!  I mean, he is restricted in soooooooo many ways, why put that on him too! If it hurts him to do it, then yes I would stop it!  Hopefully    things continue to look great for his treatments & his health.

lmunchkin

[Bill Peckham]

I've been to the London Clinic a couple times - that sandwich is served on proper china with the crust cut off, tea steeping in a proper tea pot, very civilized.

The first time I dialyzed at  Tassin in '96 - the unit that boasted the best mortality outcomes in the world since the '70s - they served me a full meal: perfectly cooked steak, roasted potatoes, a cheese course and salad with lots of fresh tomatoes. It was delicious. When they told me I could have beer or wine I laughed and then realized that no you can have beer or wine. I hear the chef changed a few years back and since then people have dialyzed less and seen their outcomes return to norm.

I've always eaten. No eating policies are another instance of blanket rules made to accommodate the lowest common denominator.