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Author Topic: Ignorant things people have said to you  (Read 468179 times)
dwcrawford
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Getting the heck out of town.

« Reply #775 on: July 19, 2009, 07:00:31 AM »

Interesting reactions in both cases.  I hope you took advantage of the opportunities to educate your teacher and your classmate.  As I keep repeating,  most people are  not ignorant nor insensitive, but uneducated in the matter.
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
Rerun
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Going through life tied to a chair!

« Reply #776 on: July 19, 2009, 07:26:15 AM »

Yeah, he probably turned the corner and then RAN to the closest computer to google "dialysis". 

                                      :rofl;
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whiskeyfrank
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« Reply #777 on: July 27, 2009, 07:57:03 AM »

I’ve had a few recently over the past couple of years - most harmless and uneducated (apart from the doctors!!)

From a (young ish) friend - "so after you’ve had you kidneys out, how long is it before they grow back"

From a doctor " they are massive (my kidneys) id love to have had these for my final papers"

I once was talking to a neighbor and he said "your putting on weight!", I then had to explain told him I had enlarged kidneys due to PKD he then said "that’s OK then I thought you weren’t looking after yourself". I walked off!!!

By a general doctor again “you’ve got lumps in your stomach feels like Hodgkin’s disease to me” when I told her I had PKD she said “what’s that?”  - Frightening!

The ultimate however was when in 1985 when after being rejected on medical grounds from the RAF for reasons I didn’t understand or know about, a nephrologist told me (was 17 at the time and undiagnosed) that

“You have a disease and it will affect you for the rest of your life…” that was it!! I was then old to go and see my doctor.
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PKD - diagnosed 1986
Fistula added July 2009
Bilateral Nephrectomy Oct 2009
Fistula Failed Oct 2009
HD started Oct 2009
Live donor from mum Jan 4th 2010
mum and me both great

Started a blog on my condition from stable now to Living Donor transplant (hopefully)

My Blog - http://pkddiary.blogspot.com/
Chris
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« Reply #778 on: July 27, 2009, 10:58:44 AM »

chalk that one up to dumb :sir ken;

In Biology and in Human Anatomy we read about dialysis and I showed my graft to a couple whowere grossed out. I don't lik my graft either, but common we have worked on stuff that is "more" gross than seeing skin with a tube pushing up and several scars. I guess dissecting a cows eye and squirting at you isn't so gross, or the smel of of a sheeps brain. Then again that didn't bother me either.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Brightsky69
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« Reply #779 on: July 28, 2009, 02:04:51 PM »

I usually tell anyone who will listen that I need a kidney and am on dialysis. Most all of my co-workers know about me being on dialysis. Some ask questions like today a guy asked me how long do I have to do dialysis. I do it nine hours a night on a machine. He said "What? like two or three times a week." I told him every single night until I can get another kidney. He was genuinely horrified. I said yup...it's not fun but you do what you gotta do.
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
kidneyless_In_PA
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« Reply #780 on: July 29, 2009, 03:43:53 PM »

Two remarks I will never forget that was said to me:
1 is you are to young to be so sick. I respond to them when they say that  my illness you don't have to be old to get sick (I am only 47).

2 is your to young to be disabled, that was from two old ladies that saw my husbands locksmithing car in a handicap spot and she was gonna call the owner who is my husband. So we went over to her and and the other lady and asked nicely may we help them and she went on it is a commercial car in a handicap spot and my husband told her nicely his wife is handicap. Now I just show my graft in my leg and say being on dialysis and walking with a cane so I keep my balance isn't handicap I don't know what is. They just go away.
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Busy 3 times a week and the other 4 days so cold and weak etc.
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #781 on: August 04, 2009, 12:04:59 AM »

What about ignorant things you have said to someone else?  When I was changing from Haemo to PD I asked one day if I should 'get' a fistula just in case.  (I'd used a catheter up till then) I had no idea at the time how much work goes into getting a fistula up and running!  Not quite like going for a pint of milk at the shops.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
Wayne
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Martin (the snorer) & Mack (cat w/renal failure)

« Reply #782 on: August 04, 2009, 12:14:29 AM »

Our patient rep at my center has been on hemo for over 10 years.  I knew he had received a transplant like 20 years ago and I told him that the only thing I was anxious about having a transplant was the catheter up my peepee.  He told me a great story....When he was about to have his transplant he also had concerns about the catheter because he had never had one.  There was an older guy he was talking to who said it was the most horrible thing he had experienced.  Well, he went in for the surgery dreading the cath, and said it wasn't a big deal.  So he went back to the older guy and said why did you tell me that it would be so horrible, it wasn't a big deal.  Now get this...the older guy said, well I have never had one, I just heard they were bad!   ::)
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Happily Married for 11 Wonderful Years!!! :-)
3/01 diagnosed with fsgs
7/07 listed
4/08 fistula surgery
10/08 pd catheter placed
12/08 started pd
2/09 started hemo
Chris
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« Reply #783 on: August 04, 2009, 11:01:27 AM »

Ohhh, but they are bad when you are awake and in the ER. Numbing meds do not help! Then there's the part when they remove it. YEOOOOW :o
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
dwcrawford
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Getting the heck out of town.

« Reply #784 on: August 04, 2009, 11:05:11 AM »

This conversation is starting to hurt...
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
MandaMe1986
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« Reply #785 on: August 04, 2009, 12:05:35 PM »

You know what I have been told so much lately that is just getting to me......

You don't look sick or you don't act sick....what the hell?

How do sick people act?  It isn't like I have a cold, I do need to live life. 
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

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jbeany
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Cattitude

« Reply #786 on: August 04, 2009, 04:54:45 PM »

You know what I have been told so much lately that is just getting to me......

You don't look sick or you don't act sick....what the hell?

How do sick people act?  It isn't like I have a cold, I do need to live life. 

My answer to that one is "Is there a uniform for sick that no one told me about?"
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

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« Reply #787 on: August 04, 2009, 06:41:41 PM »

Funny comment today...
My dh is at an out of state teacher conference right now. His co-workers pulled up tables and chairs outside of his hotel room and chatted with him while he dialyzed. (NxStage).

Lots of questions, curiosity on how dialysis works. Dh doesn't mind and feels that it's good for people to learn about this part of his life. 
One question he told me had us laughing over the phone today..

One of the teachers asked ....where does the used fluid go?
dh: Down the drain.
teacher: Really??? You think it would be a biohazard!

DH: ummm, where does your pee go?
teacher: oh... down the drain, I guess... ummmmmm uhhhhhhhhhh

 :rofl;
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Deanne
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« Reply #788 on: August 05, 2009, 08:02:55 AM »

I get the "You look healthy" comment, too. Last weekend a friend told me I look healthy and I'm still thin. Could someone please tell me the correct weight restrictions for kidney failure so I can correct this problem?
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Goofy
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« Reply #789 on: August 07, 2009, 07:01:01 AM »

My story isn't because someone was being rude, but someone was uneducated about transplants.  I had a transplant last year and after the operation, my husband called my boss and told him that everything was OK.  So the boss sends out an e-mail to my department.  Then less than 48 hours later, the kidney was rejecting and I had to have it removed.  So my husband again calls my boss to let him know.  Now the boss sends out an e-mail to my entire department and tells everyone that I have to have the new kidney removed and they are going to put my "old ones back in"!  I never laughed so hard in my life!

I guess that goes to show, people need to learn more about organ donation!
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Goofy
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« Reply #790 on: August 07, 2009, 07:20:37 AM »

Whoever started this conversation (long ago) was a genius!  I'm reading the old postings and I can't stop laughing!!!  This should be made into a book.......Kidney Failure for Dummies.......or something like that.  Its truly amazing the questions people come up with.

One I can't stand is when someone asks me "what number" I am on the transplant list.

My husband had a friend who was paralyzed in Viet Nam.  They were at the horse races one day and someone came up to him and asked him where they could rent a wheelchair.  My husbands friend politely responded.........Viet Nam.

Whenever I'm feeling down, I'll, come back to this sting and read more of the replies.  They will make me laugh!  GREAT, GREAT topic!
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Des
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« Reply #791 on: August 07, 2009, 07:28:19 AM »

She asked.... How are your kidneys doing?
I said bad... the function dropped and the pain is very bad... she answered   ... it can't be that bad you'r still working aren't you? Yes I am still working.
Not because I have a choice duh! I wonder how bad it has to get before they take it serious.
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
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« Reply #792 on: August 12, 2009, 12:36:07 PM »

man from church came to fix a leak and I told him about Lady Bird and he said she is only a dog ----
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« Reply #793 on: August 12, 2009, 12:37:50 PM »

that man from church needs a cross up his.......awww nevermind   >:D
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dwcrawford
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Getting the heck out of town.

« Reply #794 on: August 12, 2009, 02:14:48 PM »

It is hard not to think about what ignorant people say, and yet you need to try to.  Just lilke friend here.
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
cat
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« Reply #795 on: August 30, 2009, 04:55:01 AM »

On a recent fishing trip, a woman, when told I had ESRD and was on hemodialysis, told my husband, “Well, at least you don't have to make bathroom stops all the time when you're traveling.”
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cat
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This will be me...... Next spring.... I earned it.

« Reply #796 on: August 30, 2009, 10:03:42 AM »

   Cat    love your picture of your little asleep in the feed bowl.... that is too funny.... :clap;


        A couple of days ago I went to my dentist who I have not seen a year or so and needed to get a dental check up and letter to clear me for transplant evaluation......  He had lots of questions  as he was surprised with me having CKD......  He wanted me to make sure that I had both kidneys checked... and maybe one of the good ones could be used and get rid of the other bad kidney.......
       oh boy.......    I smiled   and said     well  if I do lose both kidneys   do you want to donate one of yours......    he just looked at me      real seriously.... and said   no I need to save at least one....in case one of mine fails too........       yes  even the dentist    doesn't really get it......

  But he did remind me that I could of lost my kidney due to the toxic level of Novocain that I was given in 2005 by a dentist who was putting inplants in my mouth....  I almost died   as he cut a artery and tried to patch it up and then proceeded and I bleed out in to my neck, tongue and could not breath anymore.... I had to have emergency surgery  and I had to have a trek put in my throat.....and they told me that I almost died....  just for going to the dentist......the law suit was pretty good and I found out that this dentist  was taught to do inplants thru a book and a conference..... no license......    guess you don't need one here in Oregon.......  make sure you check these guys out.......  cant trust anyone.....
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
marti824
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« Reply #797 on: August 30, 2009, 04:13:46 PM »

Cat, your post was funny.  My sister in law teases me about that all the time, she calls me a camel.  she has to stop to pee every hour or so.  Of course, I know she's kidding, but I can see how some people are just clueless.  May god bless them and keep them.
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Restorer
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« Reply #798 on: August 30, 2009, 08:44:32 PM »

Yup, los of function. It's not fun to realize it's affecting you too. Now I'm only peeing two or three times a day. When I went on a car trip to Las Vegas a couple months ago (about 6 hours, we hit terrible traffic a block from the hotel), I didn't have to have a restroom break until just before heading out to dinner after we got there.

As far as ignorant things, I don't know enough people that know about my kidney problems to have anything to contribute. My mother is pretty well-informed, except that sometimes she gets confused about which pills I'm taking.

I guess my father is a little annoying, always asking about certain foods, "Is that good for you?". And then serving whole wheat bread, cheese, and phosphate-loaded salami anyway.
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- Matt - wasabiflux.org
- Dialysis Calculators

3/2007Kidney failure diagnosed5/2010In-center hemodialysis
8/2008Peritoneal catheter placed1/2012Upper arm fistula created
9/2008Peritoneal catheter replaced3/2012Started using fistula
9/2008Began CAPD4/2012Buttonholes created
3/2009Switched to CCPD w/ Newton IQ cycler            4/2012HD catheter removed
7/2009Switched to Liberty cycler            4/2018Transplanted at UCLA!
marti824
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« Reply #799 on: August 30, 2009, 11:19:12 PM »

like I said, clueless.  God may not have blessed us with good kidneys, but I think he's blessed all of us with an amazing amount of patience in certain situations.
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