Ignorant things people have said to you

[Joe]

Agree with you completely CebuShan. I've had more people tell me "you look good". I guess that's better than "you look like hell", but still...

[Subeat]

I kind of like the surprised "you look good!" comments.  Actually, I probably look a heck of a lot better than I did a couple of months ago when I felt like @#$%.

[gothiclovemonkey]

I would like to ask everyone a question. 

When you're at D, what are your thoughts when your Tech or RN tells you EVERYTHING that's going on in their life...family, kids, shopping, what they did the past weekend....very personal things?

What are your thoughts about more education during treatments?

Do you want to be involved in where the clinic's standings are?


These are items that I've come across during my 18 years and would like input from the experts...YOU!

I dont mind when they talk to me personally, it makes me feel like they truly care, rather than just paid to care....
Of course there is a line, i know of one of our gals, who was fired a looong while ago, she crossed that line with me (and apparently others?) but other than that one person, i havent had any problems with any of the staff talking "personally" to me.
Its never too personal, and its just relaxing to listen rather than realize what is happening to me. and as u know, i cant speak when im getting stuck lol

as far as the other stuff, im just there to live, and i know u all are the best in the area, much better than my previous clinic. I love seeing u guys at CU dialysis' smiling faces. I feel like, much like this site, it is a second (or third) home to me.
So as far as "standings" go, it doesnt really matter, because i know u are the best for ME. that may not be true for everyone though.

as far as education, i prefer to sleep during treatment... unless it is vital, i dont really want to be bugged lol makes treatment go much faster!!!

[Annig83]

I have a friend who just had her second child, and it set off some strange kidney issues with her.  She is currently under the care of a nephrologist.  At her appointment this past week, she overheard another woman with a small child in the room next door;

She said "I wish my kidneys would just fail already, so I can get on dialysis and be done with it."

My friend instantly called me.  I was instantly furious...

[Desert Dancer]

She said "I wish my kidneys would just fail already, so I can get on dialysis and be done with it."
My friend instantly called me.  I was instantly furious...

And when she finally IS on dialysis, I bet those words haunt her for a long, long time.

[chook]

This reminds me of something that happened a few years ago in the neph's waiting room:
Myself and another woman had started chatting, as you do sometimes, over incidental things, and were quite relaxed and enjoying our conversation. The patient and her daughter, that had been in seeing the neph, came out, and the daughter said to her sister, who had waited outside, 'We've been told to go straight to the hospital and she (the mum) needs to start dialysis NOW!"
The woman I'd been chatting with just looked at me, stunned, and I right back at her. I remember being so horrified by witnessing this life changing moment for the family (and my worst nightmare - at that time - acted out before me) that we didn't speak another word to each other, just sat with our own thoughts until the doctors called one of us in.

[jbeany]

I have a friend who just had her second child, and it set off some strange kidney issues with her.  She is currently under the care of a nephrologist.  At her appointment this past week, she overheard another woman with a small child in the room next door;

She said "I wish my kidneys would just fail already, so I can get on dialysis and be done with it."

My friend instantly called me.  I was instantly furious...

In a way, though, I can understand that.  If she's at the point where she's close, and every appointment with the neph is a nerve-wracked period spent wondering how bad the news is going to be, having a course of action can be preferable.  She doesn't realize, of course, how fondly she's going to look back on time pre-D before her life was scheduled and her diet and fluid intake drastically restricted, but who among us really did know that?

[Dry-Pack-Babe]

I'm into makeup and going to the beauty parlor and despite being on dialysis, I still do it all. A number of people have commented about my appearance. The daughter of an elderly patient said, "Oh, it hasn't gotten to you yet." Or, "Do you still urinate?" a tech asked me.

"Yes," I said.

"Well, when you stop urinating, your looks will go to hell. Just you wait and see, honey."

Lovely! Just lovely! I try my best to always put on a happy face. And just ignore assholes.

[rocker]

"Well, when you stop urinating, your looks will go to hell. Just you wait and see, honey."

"Perhaps, but I'll still look twice as good as you."

[CebuShan]

I had a friend come up to me today & say, "I looked up what a fistula is and it sounds worse than it is". Really?

[jbeany]

I had a friend come up to me today & say, "I looked up what a fistula is and it sounds worse than it is". Really?

Just a guess that this person still doesn't know the difference between a surgically produced fistula and one that occurs in the body on its own.  And may the fool suffer an anal fistula just to demonstrate to difference!

[Riki]

I had a friend come up to me today & say, "I looked up what a fistula is and it sounds worse than it is". Really?

Just a guess that this person still doesn't know the difference between a surgically produced fistula and one that occurs in the body on its own.  And may the fool suffer an anal fistula just to demonstrate to difference!

have you ever looked at pictures of dialysis fistulas online? some of them are pretty gruesome.  I have yet to see, with my own eyes, one that looks as nasty as some that I've seen online

[jbeany]

I had a friend come up to me today & say, "I looked up what a fistula is and it sounds worse than it is". Really?

Just a guess that this person still doesn't know the difference between a surgically produced fistula and one that occurs in the body on its own.  And may the fool suffer an anal fistula just to demonstrate to difference!

have you ever looked at pictures of dialysis fistulas online? some of them are pretty gruesome.  I have yet to see, with my own eyes, one that looks as nasty as some that I've seen online

Yeah, they tend to only post the pics of the worst case scenarios.

 My thought on the fool who thinks they aren't as bad as the description makes them sound doesn't get that we are trying to keep an unnatural surgical revision in working order - something that can involve multiple surgeries, stents, and ballooning, not to mention infiltrations and that electric shock feeling that comes with having the tech ram a nerve with a giant needle. 

A naturally occurring fistula, while not a good thing, is something that you treat to make it go away and hopefully never have to deal with again. 

[brandi1leigh]

Stupid thing said by my NEPHROLOGIST yesterday.

Dr.: I'm really concerned by how much EPO we have to give you. But the alternative is more blood transfusions and that's not good either.
Me: I don't know what the answer is.
Dr.: Me either. I guess we just need to get you a kidney. Are you listed?
Me: Yes. But they say the wait time is 6-8 years for my blood type.
Dr.: Oh that's too long. You know why we're so short on kidneys?
Me: No. Why?
Dr.: Helmet laws. We had a lot more kidneys before helmet laws.
Me: My dad rides a Harley so I kind of like helmet laws.
Dr.: Hmm. There's always a trade-off.

I didn't know how to respond to there's always a trade off. I think I mumbled something and he sauntered off from my chair. And this is the third time he's lectured me about how awful it is that I'm epo resistant. It's not like it's something I can control. I get annoyed when I get lectured about high phosphorus foods and that's at least something I can control. My body's refusal to respond to epo unless I get 3 times the recommended dose is not a choice. And yet every week I get a lecture on all the bad things that can happen from too much epo. And when I ask what's the alternative, I'm told there isn't really one unless I want to be very anemic or get a blood transfusion once a month. Frustrated!

[MooseMom]

I'm going to have to stay away from this thread because these stories horrify me.

I've been told I look really good for someone with crap kidneys, so I choose to take that as a compliment.  As a matter of fact, when I went through security at O'Hare last week on my way to the meetup in Vegas, the TSA agent made me go through the imaging machine, and when I was done, I just stood there, grinning stupidly, because I didn't know what to do next.  The TSA agent stood there, also grinning stupidly, and he blurted, "You sure look bright and healthy."  I laughed out loud and said, "I have to tell you...I'm on the kidney transplant list, so I can't look all that great!"  He didn't know what to say to THAT, so he just repeated himself, and I said, "It's amazing what a little makeup can do for ya!"

I used to think that it was pretty silly to refuse to wear a motorcycle helmet, but now I think, "ORGAN DONOR!"  There's no helmet law here in my state, so people are free to risk brain trauma if they'd like.  Good ol' American Freedom!

[Desert Dancer]

"Well, when you stop urinating, your looks will go to hell. Just you wait and see, honey."

Oh, crap, I must look like a hag, then. Why didn't Andy tell me?

[Iwannabean]

I was told, "If you get a kidney, will those horrible bumps on your arm go away"

[Brightsky69]

Stupid thing said by my NEPHROLOGIST yesterday.

Dr.: I'm really concerned by how much EPO we have to give you. But the alternative is more blood transfusions and that's not good either.
Me: I don't know what the answer is.
Dr.: Me either. I guess we just need to get you a kidney. Are you listed?
Me: Yes. But they say the wait time is 6-8 years for my blood type.
Dr.: Oh that's too long. You know why we're so short on kidneys?
Me: No. Why?
Dr.: Helmet laws. We had a lot more kidneys before helmet laws.
Me: My dad rides a Harley so I kind of like helmet laws.
Dr.: Hmm. There's always a trade-off.

I am sorry....I can't help it, that was funny to me.  I tend to have a weird sense of humor.

[brandi1leigh]

Stupid thing said by my NEPHROLOGIST yesterday.

I am sorry....I can't help it, that was funny to me.  I tend to have a weird sense of humor.

Don't worry, my mom and I laughed about it afterwards too. We also have twisted senses of humor.



EDITED - Quote Error Corrected - Bajanne, Moderator

[Riki]

I was told, "If you get a kidney, will those horrible bumps on your arm go away"

How little some people know... *sigh*

When I got my first fistula in 1991, a friend of my dad's showed me his.  He had been transplanted in 1979, and he still had the large lump on his arm.

[CebuShan]

I was told, "If you get a kidney, will those horrible bumps on your arm go away"

How little some people know... *sigh*

When I got my first fistula in 1991, a friend of my dad's showed me his.  He had been transplanted in 1979, and he still had the large lump on his arm.

I guess we shouldn't even try if "those ugly bumps" aren't going to go away!       

[Brightsky69]

I can always tell who is on dialysis from the "ugly bumps". I usually approach people when I see their arms and start up a conversation.    I ran into this one guy who was still on hemo and he was so amazed that I didn't have any indication of dialysis on my arms. I told him about me having been on PD for years and he had no idea what that was. It's weird to me that none of his doctors told him about other dialysis options.

[gothiclovemonkey]

i knew nothing about other types of dialysis for 2 year after being on in center hemo... after constantly having child care issues, among other issues, never once was other options mentioned.
It wasnt until i quit d for 2 weeks, and wound up in another hospital, meeting people from another clinic and starting at that new clinic that i was told about it.

btw, i was told that, even though its considered cosmetic and probably not covered by insurance, that "can" remove the fistula/graft if u get a tx and had it a while with no problems. they dont like to, but can.
not sure how true that is.

[jbeany]

The latest bit of idiocy from someone who is supposed to be medically trained:

My transplant doc asked if I had noticed any fluid retention. 

I said no. 

Then he asked if I was urinating as much as I was drinking.

Ummm...isn't that what we just covered?  And if I'm not retaining fluid, how would I know?  I do keep a rough tally of how much fluid I drink, to make sure I get at least 2 L a day, but I'm not measuring output down to the last drop to find out if it's all coming out.   

[tbarrett2533]

I got a good one...
just the other day when I went for the image of my kidneys (the last test needed in order for me to go on the transplant list) the tech that did my test says,

"Why are you having your kidenys x-rayed?"

Me, "I am on dialysis and in order for me to get on the transplant list I need to have this done."

Tech, "You are on dialysis?"

Me, "Yes"

Tech, "Are you on dialysis because both of your kidneys don't work or just one?"

Me, "really? are you serious right now?"