Ignorant things people have said to you

[Sugarlump]

  No that feeling well when people say "I'd love to have a 4 hour sit down this morning!" or"You don't understand I have to go to WORK!!!!"
    

[Simon Dog]

I am a home NxStage patient, and recently had an in-center treatment in another city when traveling (hauling the cycler was not practical).   The staff was wonderful, reviewed all medical orders with me before starting, cooperated with my self canulation, and did a great job.

When I was done, the RN who took care of me asked with an incredulous tone "I was just wondering - why would you ever want to do this at home?".

[kristina]

Why would you ever want to indeed...

[Sugarlump]

Oh god ...
for a start to escape all the crap nurses in dialysis centres!!!! admittedly there are a few good uns but ..... 
We are doing our own dialysis in centre whilst we finish training/have machine installed and one nurse insists on standing over us and watching (just in case) no-one else does
and keeps making little comments like have you done that..i wouldn't do it like that ..you shouldn't leave 2mm of blood in syringe because she might have a low hb !!!!
SHUT UP!!!!!!

[Simon Dog]

Oh god ...
for a start to escape all the crap nurses in dialysis centres!!!

I have never run into a bad nurse at a center, and I've used quite a few (I use clinics when I travel, since it is usually without my care partner, and it's easier on my partner for me to leave for a few hours than sit with me in a hotel room).   The usual reaction to self-canulation is "oh good, less work for me" and I've never been criticized on my technique.

My pet peeve is nurses/techs who "help" by unwrapping the needles and setting them down with the other connection supplies.   I use buttonholes, and the brand I use (FMS harmony) has the scab pick exposed, so the package should be opened just before use, and with care not to disturb the sterility of the pick.

[kitkatz]

I have been on dialysis 16 years and my mother STILL asks me if I am going to dialysis if I am visiting her on a D day or if I have something planned that might run interference into it.  She does not live with me either! I have not missed a treatment in all these years.

[cassandra]

My aunty always asks me if I'm STILL doing 'that dialysis thing' when I'm on holiday too. Just weird how they think that you really only do D when you are bored or something.

[cdwbrooklyn]

I have been on dialysis 16 years and my mother STILL asks me if I am going to dialysis if I am visiting her on a D day or if I have something planned that might run interference into it.  She does not live with me either! I have not missed a treatment in all these years.

When my family and friends do that to me, I shout them down.  I tell them I do not need you to ask me about when and what time I did my treatment.  I got this.  It makes me very, very upset as if I need you to remind me.  THEY DO NOT ASK ME AGAIN!!! 

[kitkatz]

I have taken to telling my family and friends who ask me if I am going to D: "Nope, do not feel like going, going to go shopping at the mall tonight."

[jeannea]

Oh kitkatz, that's too much. Hmmm... I could see a movie or go to dialysis. Which is most fun? Like you're going because you love it.

[JW77]

I was in the hospital last month and they wanted to cath me to do a clean catch urine, I tried to tell the nurse that I don't pee, but she kept insisting that I was not relaxed and that if I'd just relax she could get a specimen (as she jams the catheter tube around up inside me) Thank God for another nurse that happened to come in at the time, and when the mean nurse said she won't relax so I can get a specimen, the good nurse said, well she's on dialysis she doesn't pee!! Well mean nurse stomps out of the room like its my fault I don't pee. I wanted to give nice nurse a hug.

Ya it is amazing what some staff don't understand! When I went to London, ON (2 1/2 hrs up north) to where my transplant hospital is, as part of the transplant work up, a nurse there was telling me that I had to have a full bladder for one test. I told her over and over again how that was not possible and she tried to tell me that if I didn't have the full bladder that the test would have to be cancelled til I came in with a full bladder. I just ignored her and went in anyway and the test was never cancelled

Had exactly the same thing myself.. After hanging around waiting for an exam, then being told I needed a full bladder.. Then they misplaced my notes..  After 5 hours of waiting around I went home!:)

[AnnieB]

"How long would you live if you stopped dialysis?"

(Why? Do you think I put you in my will?) 

[Bluebutterfly]

I get this all the time:  so which one of your kidneys failed?  Ummmm Both
I would not be in kidney failure otherwise.  Or about transplant: which kidney did
You have replaced? The right or left one?

[AnnieB]

Yeah, I get that one, too. 

[deckerj]

I think the thing that pisses me off the most is when people who have no p*cking idea of the implications of kidney disease tell me what I should eat, that I should see a homeopathic or naturopathic doctor, that they've heard of some herbs/vitamins/etc that will cure iga nephropathy even when its the first time they've actually heard of the disease, and that I should waste money on organic food or waste money at whole foods because it should make it go away.

"Oh but spinach and bananas are good for you!" yeah, except that they can kill me.

I get this all the time:  so which one of your kidneys failed?  Ummmm Both

Oh god I hate that one. They understand that somebody can live with one kidney and when they hear that you are needing a transplant and/or are on dialysis they honestly don't piece together that both must have failed.

[Charlie B53]

Further proof that the average person is CLUELESS!

And we are surrounded by THEM.

And they VOTE!

[MooseMom]

When the clueless people gave me dietary advice and told me that spinach, etc, would be good for me, I'd drag out my soapbox and begin educating them about the dangers of high potassium levels and how those molecules are too large to be filtered by damaged kidneys and that too much or even too little serum potassium could lead to faulty electrical signals to the heart which could in turn result in a cardiac event and then I'd proceed to phosphorus and how too much phosphorus can result in the body trying to balance phosphorus and calcium by leeching calcium from your bones which can result in osteoporosis and how potatoes are high in phosphorus along with whole grain cereals and bread which is why those otherwise healthy foods are not good for me and then I would begin to explain how...and then I would watch their eyes glaze over.

Easy peasy lemon squeezy.

 

[solid98]

I have one good friend who, when I go visit him, does nothing but list foods and asks if I can eat them. I finally blew up at him, saying I have to think about that 24 hours a day anyway and I came down to visit with him to get my mind off that particular subject. Then I got into my truck and drove home (4 hour trip). He got the message and hasn't asked me about my diet since.

[kitkatz]

The lovely people who mean no harm, but tell me to continue to fight for a transplant.  Now how the heck is that gonna happen when one of the largest and best transplant hospitals has told me no for one?

[Charlie B53]

There are exceptions to every rule.   One has to be persistent and ask questions in the right manner, and of the right person.

Low BP should be manageable as are many other conditions.   Good management should be reason enough for exception to a poor rule.

Just my opinion.


You worked very hard to meet the qualifications that they had set.  For them to come back once you have met those qualifications and THEN to deny you for a PRE=EXISTING condition that they already knew about is very wrong.   They put you through a LOT of stress when they should have told you in the beginning.

THEY are in the wrong.   You have done EVERYTHING they required.

[LorinnPKD]

Kitkatz, my heart is breaking over your news.  Sending you hugs.

[KatieV]

The lovely people who mean no harm, but tell me to continue to fight for a transplant.  Now how the heck is that gonna happen when one of the largest and best transplant hospitals has told me no for one?

I don't know where you are located or if this would be possible for you, but I was denied a transplant by my local hospital ("You've had more immunosuppression than anyone should ever have in their life" - said the surgeon).  I was very upset - I was 27 at the time and I'm supposed to live the rest of my life on dialysis???  My nephrologist told me to look for another hospital.  I am now listed with a transplant center out of state.

[deckerj]

The lovely people who mean no harm, but tell me to continue to fight for a transplant.  Now how the heck is that gonna happen when one of the largest and best transplant hospitals has told me no for one?

Why, if you don't mind me asking?

[Charlie B53]

You may have missed it.  KK spelled out her 'low blood pressure' was the excuse for denial.

I've already spelled out my anger with that team, I believe they are unreasonably wrong.  But KatieV does make a good suggestion, other tx centers may not use the same thing to bar listing.   That bears checking into.

KK, you have come so far.  Literally worked your butt off to meet their qualifications.  You cannot simply give up.  A kidney IS out there with your name on it.  You are going to have to keep your spirit strong and it WILL happen.  Not today, but not that long that you can make it happen.    This is just another test.  Difficult, but you have already shown that you can do it.  Keep on doing it.

Charlie B53

[Michael Murphy]

Kitkatz keep the faith, I have a friend who was told she could never have children, after she somehow got pregnant she was told she couldn't carry to term, when she went into labor they said she needed a csection, the child who popped out on her own just graduated from high school.  There are more than one transplant program, find another.  If Joyce had listened to her doctors she would not have had the joy of motherhood.  I know several people listed at multiple centers.  Have your doctors point you to other centers don't give up.