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Charlie B53
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« on: February 18, 2019, 06:39:40 PM »


Mondays have become my worst treatment day.  I didn't used to have any problem with Mondays.  Mondays used to be one of my Best Days.  Often weighing in at or under weight.  Outside, in the yard, doing things, I would sweat, drink, actually chugging water from the hose and worry that I was drinking too much.  But that all changed when I had to put my Wife Patsy in the Nursing Home.

Now I spend the weekends there with her.  That's only the beginning.  Meals.  Of course I help her eat.  Blilnd and tremors she cannot handle eating herself  so of course I help.

That isn't the problem either.  It's the coffee and the ice water.  I blame a lot of that on the bacon.  Breakfast. $3 for a 'Guest' meal.  So I end up eating. Bacon and Eggs, Oatmeal, Coffee.  Saturday and Sunday.  Too often also Lunch.  I rarely eat Dinner.  I know I have already ate and drank far too much by then.

Come Monday mornings?   Qwap!!!!   Started to cramp just the slightest the last 20 minutes of treatment.  This sucks as I know later on I'm really gonna pay for this.  The cramps that come during sleep.  I can almost set an alarm clock every two  hours and they return waking me up near screaming.

Today already during my nap(s). Twice.  Not just my calves.  This time they extend up into my thighs as well.

I am so screwed.  The night is still young.  Not even 9 p.m. here.

Such is our life.  We know better, yet we do it anyway.

Much like a spoiled kid.

Next weekend I'm skipping the Bacon.
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kitkatz
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« Reply #1 on: February 18, 2019, 08:48:10 PM »

Oh man all of the stress cannot be helping either.  I hope you can begin to adjust to new things in your life.
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Aaisha.Dar
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« Reply #2 on: February 18, 2019, 10:43:23 PM »

Just pack stuff, i know we get tempted and lazy. Put things in a cooler and a treat for yourself to look foward to
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lulu836
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« Reply #3 on: February 19, 2019, 06:31:56 AM »

@A.D  Please read the first post in this thread before completing yours.
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Of all the things I've lost, I miss my kidneys the most.
kristina
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« Reply #4 on: February 19, 2019, 08:44:06 AM »

Hello Charlie,
I am so sorry what you are going through and I am afraid there won't be a "quick fix" either.
It surely must have shocked and traumatized you very much when you had to bring your wife Patsy into the Nursing Home and it surely must have turned your life's upside down at an instance for both of you.
Could you ask your doctors about this? Not only about your cramping but also to hopefully find some assistance in trying to get back (as well as is possible) to your former "no-problem-Mondays" again ? Hopefully your doctors can also assist you to try and find a way to get back to yourself again, as best as is possible under the circumstances ? Please give it a try ....
I wish you all the best from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
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Riki
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« Reply #5 on: February 19, 2019, 08:49:41 AM »

Sounds more like they are taking too much fluid.  Maybe instead of coffee with the bacon, have water or apple juice instead.  Coffee can dehydrate you, so add some fluid with the bacon to give the sodium something to soak kup

if that makes sense.. *G*
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GA_DAWG
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« Reply #6 on: February 19, 2019, 09:38:15 AM »

Maintaining a diet and the fluid restrictions is hard enough to begin with. To add to it the stress of having to put a wife into the nursing home makes it doubly hard. It has been proven over and over that stress ofeten adds to one eating more, and presumably that would also increase the fluids. I know it is hard and I know the cramps are the worst part of dialysis, well tied with a lot of other things for the worst part anyway. Being that it is a nursing home, do they have an option of renal friendly diets for their patients? The again, passing up bacon is  like passing up breathing.
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #7 on: February 19, 2019, 01:08:59 PM »

You have my sympathies. Temptation is hard to deal with at the best of times, and harder in times of stress. It must be considerable when dealing with your sick wife. I wish I could suggest something, but I cannot, except can you replace the water/tea/coffee you drink with tonic water? It contains quinine, which may help with the cramps.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Aaisha.Dar
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« Reply #8 on: February 19, 2019, 10:15:51 PM »

@A.D  Please read the first post in this thread before completing yours.
Ive noticed youre always on my case.... if charlie has a problem with what I said he can bring it up with me.
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Riki
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« Reply #9 on: February 20, 2019, 08:19:58 AM »

@A.D  Please read the first post in this thread before completing yours.
Ive noticed youre always on my case.... if charlie has a problem with what I said he can bring it up with me.

I didn't get that either.  I thought what you suggested was fairly logical.  Some people should leave the moderating to the moderators...
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Aaisha.Dar
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« Reply #10 on: February 20, 2019, 12:29:18 PM »

@A.D  Please read the first post in this thread before completing yours.
Ive noticed youre always on my case.... if charlie has a problem with what I said he can bring it up with me.

I didn't get that either.  I thought what you suggested was fairly logical.  Some people should leave the moderating to the moderators...

Thank you, shes always on my case and has also rudely commented on my other posts as well. I used to ignore it but she isnt stopping.
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kristina
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« Reply #11 on: February 21, 2019, 02:12:21 AM »

@A.D  Please read the first post in this thread before completing yours.
Ive noticed youre always on my case.... if charlie has a problem with what I said he can bring it up with me.

Hello,
I really don't want to get involved, but my opinion is, that Charlie has much bigger "things" on his mind right now and Lulu certainly understands the whole picture of it ...
I also wish Charlie well and do hope everything turns out alright ...
Best wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
lulu836
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« Reply #12 on: February 21, 2019, 06:31:31 AM »

 :thumbup;  thank you Kristina!  Yes, that was actually my intent.
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Of all the things I've lost, I miss my kidneys the most.
Aaisha.Dar
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« Reply #13 on: February 21, 2019, 10:05:02 AM »

@A.D  Please read the first post in this thread before completing yours.
Ive noticed youre always on my case.... if charlie has a problem with what I said he can bring it up with me.

Hello,
I really don't want to get involved, but my opinion is, that Charlie has much bigger "things" on his mind right now and Lulu certainly understands the whole picture of it ...
I also wish Charlie well and do hope everything turns out alright ...
Best wishes from Kristina. :grouphug;

The reason we posted on Charlie’s forum was because we care about the bigger things he’s going through. But when someone has something negative to say especially to me for the third time I have the right to say something. She should not speak on behalf of Charlie and she should leave me alone if she doesn’t like what I have to say...
Riki thank you for your comment I was confused as well.
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #14 on: February 21, 2019, 03:44:08 PM »

The reason we posted on Charlie’s forum was because we care about the bigger things he’s going through. But when someone has something negative to say especially to me for the third time I have the right to say something. She should not speak on behalf of Charlie and she should leave me alone if she doesn’t like what I have to say...

Lulu836 has a history of this kind of post and Kristina has a habit of backing her up, regardless of how hurtful Lulu836's comments are. The best thing to do when they get like that is to ignore them. Read other people's comments instead and just don't let Lulu836 or Kristina get to you.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Aaisha.Dar
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« Reply #15 on: February 21, 2019, 06:42:06 PM »

The reason we posted on Charlie’s forum was because we care about the bigger things he’s going through. But when someone has something negative to say especially to me for the third time I have the right to say something. She should not speak on behalf of Charlie and she should leave me alone if she doesn’t like what I have to say...

Lulu836 has a history of this kind of post and Kristina has a habit of backing her up, regardless of how hurtful Lulu836's comments are. The best thing to do when they get like that is to ignore them. Read other people's comments instead and just don't let Lulu836 or Kristina get to you.

Wow... i dont have words. I was starting to feel as If I had done something wrong...

Charlie I deeply apologize you come and read this drama. I want you to know ever since your post you have been in my prayers. I hope things get easier.
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kitkatz
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« Reply #16 on: February 21, 2019, 10:17:57 PM »

Okay folks this post is supposed to be in support of CharlieB53.  Not an argument over who is supporting better or not.

Like they say in Frozen  "Let it go!"     :Kit n Stik;

kitkatz,Admin
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Charlie B53
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« Reply #17 on: February 22, 2019, 01:46:26 AM »


Monday's problem is the total volume of fluid with no residual function.  Does't matter what type of fluid, whether it be liquid or a 'wetter' foodstuff.  With no remaining residual function it is up to Dialysis to remove all fluids.

So it may be simply the salts in the bacon driving a difficult to quench thirst.  Coffee, ice water, whatever, fluid is fluid and come Monday I am much 'wetter' than I have been the past two years on Hemo.

NO BACON this weekend.

And maybe I should restart the toast and skip the oatmeal as well, as it also contains more fluid.

I am also Guilty of sipping the liquids when she has 'soup' to make it that much easier to feed her the noodles, veggies,etc..  I got to stop that also.  It is just under one cup of liquid, but even that adds to my total volume of fluids.   And it all adds up too quickly.

I suspect another large contributor is this Winter weather.  Freezing outside I do not get out and do anything at all.  I 'nap' way too much.  Don't burn hardly any calories and certainly do not sweat off any water weight like I do in good weather being outside.
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« Reply #18 on: February 22, 2019, 08:12:06 AM »

Charlie, it sounds like you have a plan.  Monday is coming up, so please report back to us how you fared.

I am so sorry that your life is so incredibly stressful.  I hope you know that you have the support of ALL of us!  :)
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« Reply #19 on: February 22, 2019, 11:45:11 AM »


Monday's problem is the total volume of fluid with no residual function.  Does't matter what type of fluid, whether it be liquid or a 'wetter' foodstuff.  With no remaining residual function it is up to Dialysis to remove all fluids.

So it may be simply the salts in the bacon driving a difficult to quench thirst.  Coffee, ice water, whatever, fluid is fluid and come Monday I am much 'wetter' than I have been the past two years on Hemo.

NO BACON this weekend.

And maybe I should restart the toast and skip the oatmeal as well, as it also contains more fluid.

I am also Guilty of sipping the liquids when she has 'soup' to make it that much easier to feed her the noodles, veggies,etc..  I got to stop that also.  It is just under one cup of liquid, but even that adds to my total volume of fluids.   And it all adds up too quickly.

I suspect another large contributor is this Winter weather.  Freezing outside I do not get out and do anything at all.  I 'nap' way too much.  Don't burn hardly any calories and certainly do not sweat off any water weight like I do in good weather being outside.

One time I ate turkey bacon on a saturday after ai had dialysis. Not only was I swollen the next day but thirstyyyy. Never ate it again. Another thing I do is I wear short sleeves in the house keeping myself cold makes me not thirsty.
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KatieV
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« Reply #20 on: February 22, 2019, 12:10:43 PM »

One time I ate turkey bacon on a saturday after ai had dialysis. Not only was I swollen the next day but thirstyyyy. Never ate it again. Another thing I do is I wear short sleeves in the house keeping myself cold makes me not thirsty.

Good point!  Nursing homes are typically kept quite warm for the residents. 
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
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« Reply #21 on: February 22, 2019, 08:31:56 PM »

It is so hard to pass up soup, especially during the winter. I used to love a bowl of tomato soup, put a little pat of butter in it, with a peanut butter jelly sandwich. Seemed the first things out of their mouth I should not eat were tomatoes and peanut butter.
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Michael Murphy
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« Reply #22 on: February 22, 2019, 08:56:50 PM »

Charlie I have observed that when a major life change happens we end to revert to habits that are less than optimum for a dialysis patients.  When my wife began taking care of her 94 year old father I was left on my own most days as a result I developed a nasty Eggo waffle habit. The were good but loaded with salt and my fluid retention went through the roof.  As soon as I realized what was happening I began to read labels and was shocked at the salt content of the waffles.   What I figure is any diet changes need to be checked and screened for hidden traps.  As my recent banana binge proved my record is less than stellar.  The problem becomes worse if you ignore the labs.  Clearly you have seen the problem and are modifying your intake to deal with your new circumstances.  You and your wife are in my prayers. 
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Aaisha.Dar
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« Reply #23 on: February 23, 2019, 12:59:04 PM »

One time I ate turkey bacon on a saturday after ai had dialysis. Not only was I swollen the next day but thirstyyyy. Never ate it again. Another thing I do is I wear short sleeves in the house keeping myself cold makes me not thirsty.

Good point!  Nursing homes are typically kept quite warm for the residents.

Thank you! It has helped a whole lot
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Charlie B53
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« Reply #24 on: February 25, 2019, 05:34:05 AM »


Monday again, I am heavy but no where near as heavy as last Monday.

I skipped the Bacon and the liquid from her soup.  Actually didn't need to as it was Tomato, which I really miss.

She had Grilled Chees and Tomato soup for dinner last night.  I used to make the Tomato soup at home while she would Grill Cheese sandwiches.   
My Tomato soup I would use milk and water both 50/50 and also add a can of crushed or diced tomato's so you had actual tomato, not just that watery 'juice'.  Add a healthy dose of Lemon Pepper and a big dash of Ground or flaked Garlic.  Yummy!

She would take those cheese sandwich's right out of the skillet, open them and add Miracle whip, sliced sweet Onion and leaf Lettuce, sometimes a layer of crisp Bacon.

I didn't know I was developing kidney problems back then so we eat whatever we liked.

So I did do better this weekend, but I still have a bit of room for even more improvement.  I'll get there.

Stay vigilant.

Charlie B53

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