I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: okarol on June 30, 2010, 09:40:20 AM
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You know you love a kidney patient when...
You know what GFR, BUN and creatinine mean.
You get excited when you find a "renal friendly" recipe.
You have a tan line from your green rubber 'Donate Life' bracelet.
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Also, when you're with them at dialysis and you can read AND understand the machine! LOL
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When you smother them with a pillow!
OOPS!
:shy;
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You know you love a kidney patient when...
You 'follow' people named RenalStuff, kidneyquest and NxStageUsers on twitter.
Your last weekend away was to the American Society of Nephrology Conference.
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You don't even know how to cook with salt
You stare at their ankles discretely to see if they are underdialyzed
You worry about their fistula when they cut their hand
You jump out of bed when you hear beep beep
You pretend not to notice when they just have to have fries and a shake
You secretly wonder if they have taken their meds, and check the bottles when they are in the shower.
You can tell when they are faking not feeling well to get out of something, and you know when they are faking feeling well in order to do something - and you let them get away with both anyway.
You secretly study everything you can about their disease, but you act dumb when they explain something to you.
You lay awake at night terrified about how alone you will feel if something happened to them, and you cry.
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You lay awake at night terrified about how alone you will feel if something happened to them, and you cry.
been there...
When you...
Feel guilty for feeling tired.
Have doctors tell you "you should go into the medical field."
Realize your entire life is centered in dialysis.
Stop going "out with friends" to stay home and do dialysis nightly.
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When you....
make 3 trips to the pharmacy in a week (because they won't let you refill even a day early)
you do all the shopping alone while your loved one is impatiently waiting in the parking lot
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...seeing little blood stains on their clothing and bed linens no longer freaks you out.
...you start arguing with their nephrologist.
...you find phosphorus jokes funny...and you understand WHY they're funny.
...you start making up phosphorus jokes yourself.
...you compare fistulas.
...you compare fistulas and award prizes.
...you refer them to IHD.
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You lay awake at night terrified about how alone you will feel if something happened to them, and you cry.
Oh how i know that feeling! :cuddle;
.. You know their medical history better than they do
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My husband has never shown any signs of real worry or drive to learn about kidney failure (though he has picked up a lot of medical knowledge on the fly), but I think he could add "You are voluntarily minus one perfectly healthy kidney" to this list. :laugh:
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"You are voluntarily minus one perfectly healthy kidney" to this list. :laugh:
:2thumbsup; :clap; :beer1;
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oh my goodness!!!!... you all DO know how we all feel...I laughed and i cried through reading this..........what an amazing group!!
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When you get admitted to the hospital and the entire staff on the kidney floor knows you and your entire family
When you go to the pharmacy and don't have to tell anyone your name
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I second that Fox nc!!! That happens every single time! Plus the staff at the hopsital remembered that our daughter was expecting a baby and all gathered to see pics when she finally had him! When my hubby goes in for surgery on the 13th, I've already got his brag book packed for them to see updated pics from when she and the baby were here. lol :2thumbsup;
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I'm new to all this- here for my Gramma....but can I add:
you know the taste, smell, consistency, color, price, calories/ protein/phos/potass/salt mg of every single solid protein drink/shake in the free world, where to find each one and how late/early each store is open!
...and now after reading so many posts form all of you, I can add:
"he was diagnosed" reads "we was diagnosed" and "DH had surgery" reads DH & I had surgery" to my worn eyeballs!
I find myself talking that way to Dr's and concerned friends, "we ate about 2 bites of dinner", "we had a hard time sleeping"...it is really Gramms having all these troubles- I am just her shadow- but I feel like I experience these things, too... ( I think I have exhaustion babble happening! I'll shut up now!)
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"he was diagnosed" reads "we was diagnosed" and "DH had surgery" reads DH & I had surgery" to my worn eyeballs!
Yes!!
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"he was diagnosed" reads "we was diagnosed" and "DH had surgery" reads DH & I had surgery" to my worn eyeballs!"
Again soooooooooo funny... Im always saying.....WE this and WE that.. It truly is a "WE" thing isnt it..
EDITED - Quote Error Fixed - Bajanne, Moderator
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... you can pour out exactly one weeks worth of pills (regardless of dosage) without counting to refil your pill box.
I caught myself doing this this week and laughed out loud - 7, 14, 28 - didn't matter - I poured a weeks worth without counting every time. Guess I just know what a weeks worth looks like now ... not sure if I'm happy about that or not ....
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My BF went from almost pucking when i first told him about me going on PD to now getting rid of my drain bags each morning and laying next to me when i do manual exchanges.
He's toughen up!! ;D
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When in the dark of night you can reach out to that tabletop LOADED with various medications and without a problem pick out the nausea or cramp med to give her. And spend hours re-arranging them after the visiting Nurse or Doctor goes through them and never places them back in the correct "position".........
How about the confusion you feel for a couple of weeks when you hand her her morning or evening meds and things do not look quite right because the pharmacy has changed suppliers of a certain med and the pill is a different shape or color, you just know something isn't right........
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when you check the labels at a convenience store to see how much sodium/potassium/phosphates are in the snack YOU crave :rofl;
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when you check the labels at a convenience store to see how much sodium/potassium/phosphates are in the snack YOU crave :rofl;
:rofl;
I do that! Hehehehe
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.... you can do the pounds to kilo ratio in a blink of an eye
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when you get up at 4 am just to make sure he is awake for treatment and worry the whole time he is gone because he wont let you go and have to sit there for for hours...
When he hollars your name and you drop what ever you are doing and run to see what he needs even if he is in the other room and you can see him.
When he wakes you up because he leg is cramping and you are happy to get up and help rub the cramp out.
When you can only sleep if you hear his fistula swishing in your ear
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...when he's running a fever because of some bug "the kids" brought home...
AND YOU'RE HAPPY because it sure beats the other reasons a dialysis patient might be running a fever!
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Hubby says that I must add:
When the phone rings while she is at the dialysis centre your heart skips a beat.
You listen to any noise she makes while sleeping... to make sure that she's ok.
You know when you fetch her from Dialysis that you must park close to the entrance in case she feels tired.
You stop eating salt to make it easier for her to cook.
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Hubby says that I must add:
When the phone rings while she is at the dialysis centre your heart skips a beat.
You listen to any noise she makes while sleeping... to make sure that she's ok.
You know when you fetch her from Dialysis that you must park close to the entrance in case she feels tired.
You stop eating salt to make it easier for her to cook.
:2thumbsup; Nice hubby!
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:Kit n Stik;
When you give your brother the prize you won at the Riverside meet to your brother. You know, Paris, the purple throw with the monogram "i hate dialysis" on it that you made, and the purple carrier that came with it.
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:stressed;
I forgot to add that Bob, my baby brother is on dialysis . He does not have a computer.
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Your heart pounds for a moment because some sound effect on the TV sounded just like one of the many medical machine alarms you know by heart.
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This fits the discussion, but not in the style of "You know u love a kidney patient when..."
My son at age 3 could say Dialysis....
Asks me, "Mommy how was dialysis today?"
Now, at age 6, "Mommy do u need help?" Hes such a big helper, and very understanding of me being on pd now.
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Sounds like a great boy.
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He amazes me daily. He was a premie, I had him at 26 weeks he was 1lb 6oz 11 3/4 inches! Hes a huge helper, and he keeps me going, I couldnt have asked for a better child. He has adhd, and cp, so we have our moments where im pulling my hair out lol But he makes everything i go thru on dialyis worth it.
sorry that was totally off topic :)
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This fits the discussion, but not in the style of "You know u love a kidney patient when..."
My son at age 3 could say Dialysis....
Asks me, "Mommy how was dialysis today?"
Now, at age 6, "Mommy do u need help?" Hes such a big helper, and very understanding of me being on pd now.
That is very sweet :)
My daughter was 3 when Mike started dialysis & she used to say "Daddys diaylsis is good because the sugar that goes into his belly takes away all the yucky stuff cause his kidneys don't work" :lol;
Now she's nearly 5, shes pretty onto it when it comes to everything dialysis related :)
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awww so cute! children can be so awesome sometimes
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... your potassium is low.
... you marry them 7 months after diagnosis.
... you shovel 2 feet of snow yourself because they just had the fistula operation and you have to get the car out because YOU'VE decided they can't miss dialysis today.
... you drop the kid off at grandmas and go sit with them happily for 4 hours and laugh together when you have to walk around because your legs are cramping after one hour. "now try not moving your arm ha ha ha"
... you do a little dance when you discover a dialysis friendly meal the whole family loves.
... you wash their hair in the sink for four months.
... you pray you can be a donor. even when your mother is praying you can't! lol
... when your life is nothing like you thought it would be and you couldn't be happier.
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... you pray you can be a donor. even when your mother is praying you can't! lol
... when your life is nothing like you thought it would be and you couldn't be happier.
:clap;
So, so true!!
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I don't think I can top the pillow comment. However:
You stick by him even though this predinsone dosage makes you think otherwise. :sir ken;
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You don't even know how to cook with salt
You stare at their ankles discretely to see if they are underdialyzed
You worry about their fistula when they cut their hand
You jump out of bed when you hear beep beep
You pretend not to notice when they just have to have fries and a shake
You secretly wonder if they have taken their meds, and check the bottles when they are in the shower.
You can tell when they are faking not feeling well to get out of something, and you know when they are faking feeling well in order to do something - and you let them get away with both anyway.
You secretly study everything you can about their disease, but you act dumb when they explain something to you.
You lay awake at night terrified about how alone you will feel if something happened to them, and you cry.
So true Meinuk, the last one made me cry! That is exactly how my G/F feels.
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You get up at 5:30 a.m. and Brush Your Hair and put on Clean Clothes, to Drive them to Dialysis a Mile Away - because, the Morning, I went in my Ragged P.Js ,
was the Morning, I had to go inside and Ask for a Wheelchair!
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When in the dark of night you can reach out to that tabletop LOADED with various medications and without a problem pick out the nausea or cramp med to give her. And spend hours re-arranging them after the visiting Nurse or Doctor goes through them and never places them back in the correct "position".........
How about the confusion you feel for a couple of weeks when you hand her her morning or evening meds and things do not look quite right because the pharmacy has changed suppliers of a certain med and the pill is a different shape or color, you just know something isn't right........
:cuddle;
You know you love a dialysis patient when you accept their decision to stop the fight, when you really want them to stay with you.
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I found this one last night - a paragraph my son wrote in class last May (end of grade 2, age 7). I am leaving the spelling and other errors uncorrected:
If I was a organ, my job would be to fight the germs and clean the blod. What organ is that you ask? Well that is a kidney.
I can just picture the teacher reading this, knowing what he knew. Not sure where Aidan got the idea that kidneys fight germs. I suppose because I had to wear a mask and be obsessively careful right after the transplant. Anyhow, I got a sense of what was on his mind last spring. Such a sweet, gorgeous boy.
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Cariad, awwwwwwwww!
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awww cariad that is soo sweet.
Sounds like we both have some good boys on our hands :) Isnt it a wonderful thing? Makes all this worth it.
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When in the dark of night you can reach out to that tabletop LOADED with various medications and without a problem pick out the nausea or cramp med to give her. And spend hours re-arranging them after the visiting Nurse or Doctor goes through them and never places them back in the correct "position".........
How about the confusion you feel for a couple of weeks when you hand her her morning or evening meds and things do not look quite right because the pharmacy has changed suppliers of a certain med and the pill is a different shape or color, you just know something isn't right........
:cuddle;
You know you love a dialysis patient when you accept their decision to stop the fight, when you really want them to stay with you.
:'(
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Sorry to add this:- You do not realise how much you loved them until it is too late and can do nothing about it.
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This is the best conversation I've listened to in a long, long while. So very human and uplifting. Thank you everyone.
But you left one out...when your dreams each night start to include a dialysis machine and you're OK about it.
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You don't even know how to cook with salt
You stare at their ankles discretely to see if they are underdialyzed
You worry about their fistula when they cut their hand
You jump out of bed when you hear beep beep
You pretend not to notice when they just have to have fries and a shake
You secretly wonder if they have taken their meds, and check the bottles when they are in the shower.
You can tell when they are faking not feeling well to get out of something, and you know when they are faking feeling well in order to do something - and you let them get away with both anyway.
You secretly study everything you can about their disease, but you act dumb when they explain something to you.
You lay awake at night terrified about how alone you will feel if something happened to them, and you cry.
Oh the nail you tapped in my heart with these lines...My heart jumped and my tears began to flow...Thank you for stating my thoughts so clearly
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But you left one out...when your dreams each night start to include a dialysis machine and you're OK about it.
Last night I dreamt that Blokey got 'The Call'. It was really vivid and I completely and utterly believed that it was happening. Then Blokey came to bed, and despite being more asleep than awake I remember the immense feeling of disappointment as I realised that it wasn't true. I think I may have told him that he got 'The Call' ... I'll have to ask him when he gets home from work.
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you don't want him to have to do anything on dialysis days & you gladly get him anything he needs.....even after a long day of work
your 6 y/o little girl is excited about Mondays, Wednesdays, & Fridays because those are the days Daddy goes to dialysis
your coworkers can come to you with kidney questions...even if they are "nothing" you don't mind listening & telling them your opinion (I stress OPINION to them & remind them that I am NOT a doctor)
you are on this site & with in the first few weeks of diagnosis & registering with IHD, you have read almost EVERY SINGLE THREAD COMPLETELY
you know more about dialysis, kidney issues, side affects, etc than he does
you follow the same diet because you don't want to upset him by eating the foods he loves in front of him, knowing he can't have them.....(I miss you chocolate! LOL)
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You know you love a kidney patient when...
everything you do is to make life easier for him, and you wouldn't have it any other way.
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When you smother them with a pillow!
OOPS!
:shy;
That is SOOOOOOOOOOO true! I wish sometimes, that my G/F would have the courage to smother me!
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MomInDialysis I will add a few more: All of those you wrote I do.
I check his weight from the daily record book to see if it is going up or down. He doesn't know.
I turn over in the night and feel him, to see if he is still breathing. I hate feeling like this.
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These are all amazing! When I was dialyising, I always felt that often my husband had it harder than me. He had to do all the worrying, he had to work every day and often come home to a wife who was too ill/tired to cook, clean, or do anything else :embarassed:
All too often the stress that carers go through is overlooked, recievng little or no support, and expected to perform heroics every day. A one -off heroic act is one thing but to do the mundane and frustrating work of caring for a sick person every day is TRUE heroism.
My husband met me when my first transplant was failing, and chose to marry me even with this terrible disease that we struggle with, he visited me EVERY day in intensive care when I wasn't even conscious and when i was I couldn't really recognise him or speak to him. He then gave a kidney in a paired donation so that we could have a 'normal' life.
You guys are A-M-A-Z-I-N-G and though you are overworked, overlooked and over tired; your devotion, care and love are appreciated even if you can't see it all the time!
Hugs to you all,
carla
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carla13 - sounds like you have one awesome guy there. Does he have a brother? ;D
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I have just read this thread and laughed, cried and seen myself in every post....especially the ones about the secret surveillance. I want to say God bless smart phones and texting. Even though i can't be at the clinic with him, we are in constant touch which helps. What did folk do before mobiles?
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What did folk do before mobiles?
I know! My mobile goes everywhere with me; it's ridiculous. And if I don't get a text from Blokey whilst he's at haemoD I worry (even though I know he may be in the little ward where they can't get a signal). And if someone texts me I always feel the need to respond immediately lest they think I'm rude. And if I text someone and they don't respond within so many minutes I start to worry about them. Oh, and those folk with stooopid music as their ringtones? Don't get me started ...
Mobile phones are a blasted curse sometimes!
;D
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you sometimes (just sometimes) wonder how long you will live if you stop dialysis.
you sometimes (just sometimes) wonder what will happen if you just skip and do something nice like watch a movie or bake a cake or walk the dog or something else normal.
you constantly worry about what is IN the food instead of what it tastes like :rofl;
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ok crying, laughing, and reflecting all at the same time....been there done that and have the t-shirt to prove it!!!!
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When you wake up a night to make sure their breathing.
When ur no where near the nxstage machine but swear u just heard it beepin.
When the empathy u feel is so bad it physically hurts.
When u talk to a dr. That u havent been too an they say u work in the medical field.
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When ur no where near the nxstage machine but swear u just heard it beepin.
I had to laugh at this one! We have a fridge that beeps if the door is left open. I don't know how many times we have heard that beep and looked at each other and thought, "what the heck did we do wrong NOW?"
:rofl; :rofl; :rofl;
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you are all such incredibly beautiful people. I wonder if you know what hope it gives me to think i might find a partner like any of you? having struggled with kidney disease and dialysis alone for years... :(
(but must credit my sister for being the one who tries to understand and always wants to help)
YOU ARE BEAUTIFUL PEOPLE!
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you are all such incredibly beautiful people. I wonder if you know what hope it gives me to think i might find a partner like any of you? having struggled with kidney disease and dialysis alone for years... :(
(but must credit my sister for being the one who tries to understand and always wants to help)
YOU ARE BEAUTIFUL PEOPLE!
Fearless,
finding the right person is half luck and the other half luck, too, I think. So trust in luck, but help it out by getting out to meet folks who are interested in the same things as you.
But most of all, trust in luck.
:cuddle;
Aleta
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Ya know fearless, your right,,,,,,,, a great bunch of beautiful people. I wish for you to find someone as loving and careing as any one of "us" ;D :grouphug; Your a beautiful person too and im glad you have your sister. Love is Love :flower;
And have any of you noticed how many 'bing" and "dings" are on the tv these days.. I know there intended as attention getters but ............ if your a nxStage partner, it's more than attention their getting... lol They're getting a whole responce of some kind from us. Im getting tired of commen into the tv area to check our machine, ........... even when we're not on it,,,,,,,,,,, Even worse, when at someone elses house, it STILL makes me turn to 'fix' something.... And we hardly ever get alarms for real...lol
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Thanks Aleta,
Trust is key - :)
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Thanks Aleta,
Trust is key - :)
Absolutely, Fearless. And it is so very important to find that person who you CAN trust. And worth every moment, and day, and week, and month and year.
:grouphug;
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:)