Ignorant things people have said to you

[deckerj]

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

Sounds like when I was denied transplant for a very long time because my BMI was too high. And the thing is, it was too high because I had edema so bad that I had about 40lbs worth of water in my legs, and they even saw that my legs were really huge but it wasn't up to them, rather it was up to the insurance, and the insurance (medicaid) had no appeals process for this kind of thing. It was either you meet the BMI requirement, (<35) or you don't get listed; that simple, even though I was already below the transplant team's requirements (<40 BMI.) And for whatever reason, my nephrologist at the time didn't want to prescribe diuretic so that I could get listed.

After I finally got diuretics, I literally dropped about 50lbs in 2 weeks and finally got listed. That took away a year of my waitlist time; I could very well have a cadaverous transplant by now had it not been for that.

It was funny because when I had my meeting with the transplant surgeon, (he has the final say of whether or not you are a candidate for transplant) we were talking about medication afterwards and he mentioned that I needed anti-biotics to protect against valley fever, and I said "don't you mean anti-fungal?" (valley fever is caused by a fungus) and he realized how knowledgeable I was and told me that I'd probably be one of the best candidates he's ever had.

[Simon Dog]

That took away a year of my waitlist time; I could very well have a cadaverous transplant by now had it not been for that.

Under the current rules, you are credited from the start of dialysis, even if you want years to get waitlisted.

[Charlie B53]

Correct me if I am wrong, but I always thought Dr''s reluctant to prescribe anti-fungal as they are very hard on the liver.  Toenail bed fungus, some call it Jungle Rot can be a real pain to get rid of, as are some lung fungal infections such as Legionnaires.

[myporkchop]

Oh my gosh this topic "ignorant things people have said to you" is soooo funny some of the comments I've read Thanks for sharing them 

How incredibly frustrating/ irritating are other comments 

And sad to hear of some comments too 

[deckerj]

That took away a year of my waitlist time; I could very well have a cadaverous transplant by now had it not been for that.

Under the current rules, you are credited from the start of dialysis, even if you want years to get waitlisted.

I haven't started dialysis. Not sure if I even want to if it came down to it as these past few years I've been heavily questioning whether or not I even want to live anymore. Kind of a separate topic though.

Correct me if I am wrong, but I always thought Dr''s reluctant to prescribe anti-fungal as they are very hard on the liver.  Toenail bed fungus, some call it Jungle Rot can be a real pain to get rid of, as are some lung fungal infections such as Legionnaires.

In many areas in Arizona and California, valley fever is a huge risk. Most people are exposed to it almost daily, but your immune system tends to be really good at preventing infection. However if your immune system doesn't work that well then you can get infected, and once infected it becomes a chronic condition, even if you restore immune function later. The symptoms are basically like a really bad chronic flu and/or COPD like what happens to smokers.

[Disaster96]

At one time my doctor told me On home diasysis I will feel so good I wont want a kidney

[Charlie B53]

I don't think so.  Granted, I am not sick like I was before PD, nor do I have the swelling leaking legs getting infected any longer.

But I am still constantly tired and achy, unable to physically do near what I used to.

15 different types of pills taken three times daily.

16,  I forgot the binders.

Limiting drink, some foods.

This is NOT how I used to live.

But I will admit, it does have it's advantages over NO Dialysis

Without, I wouldn't be here.   So even though I HATE Dialysis I have to be Thankful.

[beckums70]

I get asked this dumb question from people that I don't see very frequently:

"How are your kidneys?"

WTF??  I am on dialysis, how do you THINK my kidneys are?  I usually just answer, "They still don't work" or "They suck, how are yours?"

[Riki]

Further proof that the average person is CLUELESS!

And we are surrounded by THEM.

And they VOTE!

*L*  We're doomed....... 

[Chris]

I got
Do they remove the kidney on the side the transplant kidney is put in, do they remove the old pancreas and a few other other dumb transplant related things asked by medical personnel at my local hospital.


Then there are the idiots who come forth when it comes to my guide dog as we are working.






EDITED: Nov 8, 2016 - Spelling - CharlieB53 - Mod

[Riki]

Then there are the idiots who come forth when it comes to my guide dog as we are working.

Is that the

"Can I pet your dog?"
"No"
"Why not?"
"Because he's working."
"He doesn't look like he's working"

type conversations?

[Fabkiwi06]

My horrible nurse called me fat at my last weigh in. I actually had gone down from last month from 120 to 118 (I'm only 4'11). THANKS JEN! 

Then when my neph came in to see me 10 minutes after, she asked if I had purposely lost weight and told me to not lose any more. So...   

[KatieV]

My horrible nurse called me fat at my last weigh in. I actually had gone down from last month from 120 to 118 (I'm only 4'11). THANKS JEN! 

Then when my neph came in to see me 10 minutes after, she asked if I had purposely lost weight and told me to not lose any more. So...   

That's horrible!  My younger sister (a pediatric patient) had "____ obese" (forget the descriptor) typed in her "After-Visit Summary".  My mother insisted on having it removed.  She's overweight, but not obese - and got that way due to medication issues. 

I started dialysis AGAIN in August 2015 and was in-center for a year until I was able to switch to NxStage.  I was so sick on dialysis between high blood pressure issues/migraines/fluid shifts that weight was dropping off me.  My blood pressure was super high (often 230/124) and my neph kept saying "if you lose weight, your blood pressure will lower".  I came right out and asked her multiple times, "I've lost x amount of weight with no difference - how much more do I have to lose?"!!!!  (It was actual weight, not fluid weight.)  I ended up losing 70 lbs in a year; I'm now 150 lbs at 5'7".  My weight is staying stable now that I'm on NxStage.

Then - last week when I was in the hospital for a chest catheter infection, I got a visit by a renal dietician.  She was checking in with me because they were concerned that I lost so much weight.  Where were they LAST YEAR? 

[Fabkiwi06]

Yeah... I mean, I'm overall ok with my general weight. My nurse is just... how can I say? Not the brightest crayon in the box. No tact what so ever. Very much follows like a checklist in dealing with patients... when you have a question or have a situation that is outside of the "norm", she gets very flustered. *sigh*. The rest of the team is awesome though.

[Michael Murphy]

While I was in the hospital a doctor ran up and loudly announced he had found in my lab work that my creatine levels were very high.  As panic insued I calmly pointed out that that may be the reason I was scheduled for 4 hours of dialysis in about a hour.  If he had just looked at the orders he would have avoided the embarrassment.

[Riki]

My younger sister (a pediatric patient) had "____ obese" (forget the descriptor) typed in her "After-Visit Summary".  My mother insisted on having it removed.  She's overweight, but not obese - and got that way due to medication issues. 

I have "morbidly obese" written on my charts... I'm 5'1" and about 220lbs... I've never been thin.. I have pictures of me when I was 3 and 4 years old, and my body is exactly the same shape then as it is now.. just smaller... I was doing some research on the genetic condition I have that caused my kidney issues, and a page (which I wish I could find again) had a physical description of the typical patient.. and it was me.. right down to the short, wide feet... I'm actually inactive on the transplant list right now until I can get the weight down below 215lbs...

[KatieV]

My nephrologist referred me to Hematology because of low platelets and WBC.  So yesterday, the nurse is taking my vitals and freaks out that my blood pressure is so high.

"Do your doctors know?"
"Yes"
"But you're not on any blood pressure meds"

UMMMM....yeah I am.  We just went over my med list and the FIVE different blood pressure meds I take!

[kitkatz]

I laughed at the Kaiser automated phone call telling me my GFR is high after fourteen years on dialysis.

[iolaire]

So last night I was talking to my father who lives in Anchorage far away from Virginia.  We talk a few times per year.  I was talking about our recent trip to Spain and tried to mention how much time dialysis takes, when you add up the bus to the center, waiting for hookup and bus back the 3.5 hour session can take up 7 hours meaning a full day is basically shot.  He speaks up and asks how often I have to do that, then precedes to be amazed when I tell him every other day!  In his mind dialysis was something done say once per month!   I guess my I can deal with this attitude means that I'm not stressing to everyone I meet how much of a time commitment this is...

Also my wife is always amazed when making plans for Friday night with friends how they are surprised when they learn I'm not part of those plans.  And those friends even had a mother who was on dialysis for the final months of her life...

[Simon Dog]

I laughed at the Kaiser automated phone call telling me my GFR is high after fourteen years on dialysis.

You mean low?  Or creatinine high?

[nursey66]

Iolaire. , anouther misconception about dialysis patients ,a lot of people think you are half dead , or at least very sickly ,and of course some are. , But my husband would come home from his school bus route at 8:30 AM , get hooked up at the center at 9:00AM , get back at 2:30 PM just in time to getting the bus and pick up kids at schools for the ride home . He finished the route at 5 PM . He had a 90 passenger bus - big bus.  He would start out his day at 6:00 AM . Said the bus and kids gave him a reason to get up in the morning . Lucky the dialysis center was really close by. He has a good working transplant now and is still doing the school bus route .

[iolaire]

Iolaire. , anouther misconception about dialysis patients ,a lot of people think you are half dead , or at least very sickly ,and of course some are. , But my husband would come home from his school bus route at 8:30 AM , get hooked up at the center at 9:00AM , get back at 2:30 PM just in time to getting the bus and pick up kids at schools for the ride home . He finished the route at 5 PM . He had a 90 passenger bus - big bus.  He would start out his day at 6:00 AM . Said the bus and kids gave him a reason to get up in the morning . Lucky the dialysis center was really close by. He has a good working transplant now and is still doing the school bus route .

Yes, sometimes I worry the whole SSI opportunity means people who could work and have more "normal" lives opt to go onto SSI and loose that meaningful support that being outside of the house brings.   Its great for people who can not work, but what about the young people who might miss out on a career and be stuck and some tiny SSI payment for years or their entire lives...

[Rerun]

Ok back on topic...   Ignorant things people have said to you.... 

Rerun, Admin   

[Riki]

Its great for people who can not work, but what about the young people who might miss out on a career and be stuck and some tiny SSI payment for years or their entire lives...

I think this is a, maybe not ignorant, perhaps more on the tactless side, thing to say.. some of us young folk go the disability route because we can't work anymore.. when I was working and on dialysis, I was falling asleep on clients.. I just didn't have the energy for it anymore.. I worked a year longer than I wanted to just so I could qualify.. I turned 39 at the end of last month

[iolaire]

Its great for people who can not work, but what about the young people who might miss out on a career and be stuck and some tiny SSI payment for years or their entire lives...

I think this is a, maybe not ignorant, perhaps more on the tactless side, thing to say.. some of us young folk go the disability route because we can't work anymore.. when I was working and on dialysis, I was falling asleep on clients.. I just didn't have the energy for it anymore.. I worked a year longer than I wanted to just so I could qualify.. I turned 39 at the end of last month

Your experience seems like a good example of why the SSI option was created.  I would say not being able to stay awake equals "can not work."