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Author Topic: Ignorant things people have said to you  (Read 469151 times)
obsidianom
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« Reply #1625 on: May 05, 2014, 10:01:35 AM »

Dont get me started on Nurse practitioners.   
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Ninanna
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« Reply #1626 on: May 05, 2014, 10:18:24 AM »

Dont get me started on Nurse practitioners.

I have had 3 really good and amazing NP, so they are not all bad.
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
Joe
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« Reply #1627 on: May 05, 2014, 04:56:44 PM »

My PD cath was below my beltline. In shorts, even without a shirt, you wouldn't have been able to see it.
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
Simon Dog
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« Reply #1628 on: May 06, 2014, 10:51:46 AM »

My PD cath was below my beltline. In shorts, even without a shirt, you wouldn't have been able to see it.
Interesting - I never knew they wen that low.   

I am still amaze at how many MDs and RNs have told me they "never heard of such a thing" when I tell them I am on home hemo.
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jeannea
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« Reply #1629 on: May 06, 2014, 08:13:57 PM »

I've known some good Nurse Practitioners. Just like doctors, there are good ones and bad ones.
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kitkatz
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« Reply #1630 on: May 08, 2014, 03:48:05 AM »

I have been nocturnal dialysis almost seven years and am amazed by the amount of health professionals that have never heard of it.
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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 #1631 on: May 08, 2014, 06:51:34 AM »

Had a stress test administered by an NP.    I am standing there in shorts with my shirt off facing the NP while she goes over my medical situation, and ask when my dialysis appointments are.   I explain I do it at home.    She's looking right at me, shirt off, and asks "I assume you do peritoneal dialysis".   

Yeah, the surgeon re-routed my urethra.  Instead of connecting to my bladder it provides access through the peritoneal membrane, I fill be connecting to my penis.

When it's time to drain I just go Pee!

Less chance  of infection without using any catheter.

D'oh!

Some people.  I'd almost bet she'd believe it!
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Gerald Lively
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« Reply #1632 on: May 11, 2014, 12:12:59 AM »

A few years back when my son was 50 years of age, I was telling him about prostate cancer.  He listened intently, waited for me to finish, then asked, "My girlfriend is having pains.  Can she get prostate cancer?"
Well Hell!  Where did it all go wrong?  He must have slipped by the diaphram.   
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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


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Simon Dog
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« Reply #1633 on: May 22, 2014, 02:09:43 PM »

A neighbor (female) explained that "prostate cancer is more common in men", and she was being serious (although, technically, she was correct).

A few years back when my son was 50 years of age, I was telling him about prostate cancer.  He listened intently, waited for me to finish, then asked, "My girlfriend is having pains.  Can she get prostate cancer?"
Well Hell!  Where did it all go wrong?  He must have slipped by the diaphram.
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PrimeTimer
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« Reply #1634 on: May 23, 2014, 12:17:27 AM »

My husband recently had to have an angioplasty performed on his fistula. One of our brighter inlaws said it was because we are doing dialysis at home instead of at a professional environment. See, it is remarks like that that motivate us and inspire us to carry on! But remarks like that also make me want to slap the heck out of somebody. 'Nuff said.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
cdwbrooklyn
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Positive Thoughts equal Positive Energy

« Reply #1635 on: May 23, 2014, 10:26:31 AM »

My husband recently had to have an angioplasty performed on his fistula. One of our brighter inlaws said it was because we are doing dialysis at home instead of at a professional environment. See, it is remarks like that that motivate us and inspire us to carry on! But remarks like that also make me want to slap the heck out of somebody. 'Nuff said.

Some poeple just don't understand...how ignorance they sound!!! Like my mother use the say, "You so smart until you stupid!" meaning YOU DON'T KNOW EVERYTHING!!!! 

 :Kit n Stik;
« Last Edit: May 23, 2014, 10:27:56 AM by cdwbrooklyn » Logged

Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
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« Reply #1636 on: May 25, 2014, 02:40:17 PM »

One of my " acquaintenances" had a job transporting kidney patients to dialysis, which made her an expert on all things kidney. One day she tired to tell me that the dialysis accesses have to be "removed" and replaced every 2 years. OMG!!! I told her I belong to an online kidney group with over 8 thousand members and not a one had ever mentioned that. Finally, she shut her mouth, and just in the nick of time!!!
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One day at a time, thats all I can do.
PrimeTimer
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« Reply #1637 on: June 04, 2014, 02:05:26 AM »

      :rant; My husband is diabetic, has ESRD, we are doing home hemo dialysis and...are dirt poor. His mother (a self-centered, delirious shopaholic oblivious to others needs or feelings and who fortunately lives in another state), left him a voice mail wishing him a happy birthday and added that she hopes we can go out for some birthday cake.    :Kit n Stik;   Wow...just wow.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
cdwbrooklyn
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« Reply #1638 on: June 04, 2014, 07:37:45 AM »

One of my " acquaintenances" had a job transporting kidney patients to dialysis, which made her an expert on all things kidney. One day she tired to tell me that the dialysis accesses have to be "removed" and replaced every 2 years. OMG!!! I told her I belong to an online kidney group with over 8 thousand members and not a one had ever mentioned that. Finally, she shut her mouth, and just in the nick of time!!!

Don’t you hate when someone tries to tell you something she or he knows nothing about.  Why not just ask you if that’s true than to put her foot in her mouth.   I had a conversation with one of my friends about AIDS.  I was telling her I know a woman who has it for a very long time and that woman did her research on it in order to stay alive for a long time.  The woman informed me that people are clueless when it comes to having AIDS as people are clueless when it comes to dialysis.   My friend continues to tell me what she thinks she knows instead of listening to what I’m telling her from someone who has it and dealing with it.  She was so adamant about it I just changed the subject.     :Kit n Stik;
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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
UkrainianTracksuit
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« Reply #1639 on: June 11, 2014, 08:10:06 AM »

While looking for dresses with sleeves, my attendant asked what happened to my arm.  (AV graft).  I explained it was for dialysis.  She said, "Oh, I didn't know hair removal left scarring like that!"  So, I guess dialysis is a hair removal procedure. 
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jeannea
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« Reply #1640 on: June 12, 2014, 07:35:26 AM »

Hair removal? How confusing.
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goofball
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« Reply #1641 on: June 12, 2014, 07:54:32 AM »

Maybe her brain misprocessed "dialysis" into "electrolysis?"
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APKD - 47yr-old

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Sugarlump
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10 years on and off dialysis

« Reply #1642 on: June 16, 2014, 11:07:55 AM »

Well what do you know!!!!
Today a dialysis nurse told me I was privileged to be on dialysis.
I understand some countries don't have the same access to dialysis facilities but PRIVILEGED!!!!!!
Heck would someone else like to have this privilege for awhile?

And when i said I don't have any choice, she replied, yes you do. You can either come or die!!!!!
And this is a dialysis nurse who is supposed to look after and support me.

Good job I was hooked up at that point (I could feel a slap coming on in my fingers)

 :Kit n Stik; :Kit n Stik; :Kit n Stik;
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
lainiepop
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« Reply #1643 on: June 17, 2014, 03:56:28 AM »

Oh my goodness sugar what is up with people especially in the nursing career?! I've had a bad experience with nurses after my recent bowel surgery, i was left shouting in agony a couple days after the surgery my bowels uncontrollably exploded I'd pressed buzzer needed help nobody came another lady went to get someone they said they were too busy serving dinner! When she did come she flashed me a disgusted look and said can u not go to the toilet?! She gave me clean pants a pad told me to hold my drip and get to the toilet. I was in agony and felt so undignified!!

And when I had my son I got mild pre eclampsia after , a nurse was saying my bp was up and I remember mumbling in my state why is this happening to me, to which she replied (and I will never forget) well 10 years ago medicine wouldn't have allowed women like u to have a baby, the problem is women like you shouldn't have babies!! It cut me to the core, made me feel so guilty!!

But the winner comes from mother in law, at 20  weeks pregnant with my daughter, knowing the kidney was teetering on the brink I told Hubby's parents that the doctors hoped to get me to 32 weeks, to which she replied, but you can't have a baby at 32 weeks it will be mentally retarded!!!! Seriously?! The kidney had a gfr of 17 we needed to think about me and baby, as it happened we got to 35 weeks and she was perfect but only 3lbs 12. Then when she saw her she was about a month old and only just over 4lbs as her weight had dropped to 3lbs 7 and she kept saying shes so small all mine were more than that born, well duh of course they were, they were full term and u didn't have kidney failure. She also sent me a text when Iwas admitted back to hospital with an infection and slight creatinne rise after tx saying sorry things have gone pear shaped we're having lovely time in Australia! Yes that's right they planned a holiday the time my dad was due to donate, meaning when hubby went back to work my mum was taking care of me dad and 2 kids under 4!

And breathe, can feel my bp rising now ;)
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
galvo
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« Reply #1644 on: June 17, 2014, 05:04:44 PM »

Yes! Deep breaths, lainiepop, deep breaths! My attitude is to tell the lot of 'em to get stuffed! The longer time goes by, the more I'm convinced that only kidney people understand kidney people!
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Galvo
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« Reply #1645 on: June 18, 2014, 12:38:47 AM »

See Galvo I have lots of very understanding friends (and husband) who are not kidney people. My sister in law (nothing like her mum) researched my gfr, what i was a t risk from during my pregnancys (pre eclampsia etc) and about pre-term birth and she talked lots with me about it. Its not hard we have the internet now! Some people just arent interested and dont want to know i think. The same sister was diagnosed a few yrs ago after a few yrs of problems with crohns disease, so me and hubby researched it, we talk to her about it, but when i asked mother in law how she was and about the chrons she said they didnt really talk about it. Hubbys sister is pretty health conscious  and when her mums brother had a really serious heart attack, was in hospital for months and nearly died, she suggested that her mum have a cholestrol test (she had found out from crohns testing that hers was slightly high, despite being super fit super think and eating more healthy than everyone!) and her mum replied, oh no i dont want want to i dont like needles and i dont want to know. (do not complain about needles to a renal patient, even one who hasnt experience dialysis!!) Unfortunately his mum did have to face an issue recently she had to have a melanoma removed from her back, she was very worried about it but of course everyone was supportive, she is fine now.

I think some people are just that way, and i think tbh she never wanted steve to marry me because i had things wrong with me. (She was scared i think i wouldnt be able to have children!!)

I would very much like to tell them to get stuffed sometimes (when i am in hospital it always reopens old wounds but all that happens is i end up arguing with my hubby about them. ) Its hard because they are my childrens grandparents and as i was admitted in an emergency the did come down the day after surgery to take andrew to school and look after elena, (only as my mum was still with dad who'd had the heart bypass op!), but their e-mails were almost like it was an inconvenience, they said well we have nothing specific on the next few days... They stayed the thursday and friday and wanted to go back saturday morning, but elena had her first ballet show and it was 2 performances and someone needed to take andrew home after the first one so they agreed to stay to do that and leave sunday. My parents were gutted they didnt see her on stage, so was i!! They had to get back t decorate their house to sell. Luckily for them it was half term so hubby was off then my mum came up for the forseeable. They didnt visit in hospital, they dont text to ask how i am and even tho we've been married 9 yrs they have never called our home telephone (i guess in case i answer?!?)

I don't think they'll ever change i just think its sad as they are missing out with their grandkids, but at least my kids are close to my parents and know they love them and that my dad gave a very special gift to me so i can raise them.

I dont think its just me tho, and being a 'person with something wrong with them' (altho that makes it worse), lots of my friends have issues with their hubbys mums being weird with them and their kids, and they dont help out lie the girls mum does i think its a mother in law thing. And i will be one one day, but my daughter in law will love me, anyone who takes on my son deserves a meadl, and his sister is whipping him into shape, poor boy will be hen pecked before he gets wed ;)
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
Sugarlump
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10 years on and off dialysis

« Reply #1646 on: June 19, 2014, 12:29:57 PM »

I do have some good friends.
I like the ones who accept I only ever drink half of my cup of tea and coffee and never comment.
(My way of fluid control only ever drink half!!!) because NO-ONE makes a half of a cup of tea properly so I like a full cup thank you  ;D
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Jean
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« Reply #1647 on: June 21, 2014, 03:22:16 PM »

One of my neighbors does PD and was recently taken out in an ambulance. They said her face was all puffy and she couldn't pee. Well, REALLY!!!!!
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One day at a time, thats all I can do.
Sugarlump
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10 years on and off dialysis

« Reply #1648 on: June 22, 2014, 06:36:06 AM »

"Dialysis ? That's once a month isn't it?" a well-meaning friend...
Ha ha,  I wish!!!  :waving;
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
PrimeTimer
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« Reply #1649 on: June 22, 2014, 08:03:00 PM »

lainiepop:  Either we've both been very blessed or else we share the same MIL! Funny thing, when I first met mine she complained that her other DIL never speaks to her. I suppose that should've been my clue.   
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
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