What do you wish your family understood about kidney disease?

[okarol]

I was thinking about how much I have learned through reading the threads on IHD. I feel like I have become much more aware and empathetic to the challenges and changes that kidney patients face. I am so grateful to have the information available. But not all caregivers have this opportunity. I guess my question is: If you could hand your family or friends a book or brochure or video that would enlighten them, what would you want them to know?

[G-Ma]

About all the emotions and extreme tiredness sometimes.

[Rerun]

That I can't have cheese on my hamburgers!!!   Jesus how many times do I have to say it!!!

[twirl]

this is funny I was trying to think of a post about this very thing
I had a better day today---- cooked, cleaned, fed the animals, got some other odd jobs things done and when my husband comes home he will think I am cured------ all is back again======= I am already tired and so tried of being tired------ husband will say -"your color is good today, you must feel great----- I have always been a natural tan but I think dialysis patients turn kind of brown- baking a pie does not make my kidneys pee like they used too.......Lord knows or we would all be in the pie baking business........

[G-Ma]

yea, when honey calls he says "you sound so good I forget you are sick".....how does sick sound???  could be on ignorant things being said too.

[karen547]

I think sometimes people forget that just because I have CKF, I can go out and have fun sometimes. We are not dying!

[Lori1851]

Since I was not the one with CKD but Dustin was I was so SICK of hearing "so when is your transplant???" I remember when my brother in law asked I said are you VOLUNTEERING??? Or why does Dustin have to sleep all the time. Look up the word ANEMIC!!!! Why are you so pale? Oh gee, I could go on forever!!

Lori/Indiana r.i.p. Dustin I love you!

[jbeany]

I wish they all understood the concept of limited energy.  Yes, I can spend a day at work, or cleaning the house - but only if I have a day to rest before and after.  When I say I'm tired, if means that if I keep going, I'm going to be fine while I'm with you, but I'm going to spend the next day puking.

[sickofbeingsick]

I'd want them to know how ESRD is just as devastating emotionally as it is physically.

[Sunny]

All of the above.
I think my family has become used to me the way I am and forget how hard it is on me both physically and emotionally.
I would love to take a week off and do no cleaning, no cooking, no activity whatsoever except what I wanted. No demands
with no guilt.

[flip]

Not having any close family, it's hard to answer. There are days when I don't want to get up early but I have to. I know I have to fend for myself and I realize it makes me stronger but I still have days when I would just like to rest.

[paris]

We are all singing the same song!     I push and push when people are around and then collapse when I am alone.  My husband works 3-11pm, so he only sees me in the morning most days.  He doesn't even hear me up at night when I am vomiting or just not sleeping.  There is no explaining the level of "tired".  If one more healthy person tells me how tired they are or how bad they feel because they couldn't sleep last night, I am going to hit them!    Treat us normal but respect and remember we are dealing with a life altering  disease.  

Sunny is right, family becomes use to the way we are.  And it is both physical and emotional.    

Good post, Okarol

[MIbarra]

I would like my family to understand the seriousness of the disease even though I have had a transplant. I am not cured and they think I am. I still feel tired and sometimes barely get through the day. I also wish people at work would understand more about dr's appointments and leaving early for dialysis when I was on it. And, I would want my hubby to understand why I had NO interest in sex while I was on dialysis.

[Chris]

I would like my family to understand the seriousness of the disease even though I have had a transplant. I am not cured and they think I am.

This about sums it up for me even though I am not close with my family. I live with them, but I'm not close.

I push and push when people are around

I also push myself to much and people don't understand this how much or how hard I push myself so I have a sense of feeling like a normal person.


Also, wish they understood INSOMNIA. No I didn't fall asleep with the TV on, yes I pretend to be sleeping till you leave, I will eventually get some rest.

More than anything, I wish they understoood about visual impairment/blindness. Sometimes I can't see or recognize you or what you are pointing at (especially in bad light or to bright of a condition)

[Wayne]

I have to agree with the pushing and pushing.  My two nephews came to stay with my wife and I about a month ago and they wanted to go to the zoo.  So me being the loving uncle I am,  , I took them.  We hadn't been there an hour and they were complaining they were tired.  They are young so they don't really understand what is going on with me so I just used the age issue to make them feel guilty.  I told them as long as my old behind was still going, they could keep going.  Of course, I paid for it later when I wanted to sleep for 2 days straight.  I wish my family would understand that when they are visiting and I am sleeping in, it's not because I am trying to be rude....I am tired and I need my rest!  Thank God my wife understands.

[Gramapat]

I would like for my family to understand the tiredness.  The tired to the core of your being when you haven't done a thing.  The complete exhaustion at times after 5 minutes of cleaning. 

I really don't think a person whose kidneys work can ever understand that.  When I say I'm tired, they tell me how tired they are also and I just shut up because comparing their tiredness to mine is so ridiculous.  It's obvious they have no idea about kidney failure. 

I am trying to educate them little by little but I think my family is mentally challenged when it comes to learning about my health.   

[CatEars]

I was going to a therapist to deal with some emotional issues, in particular a job from hell with God sent insurance but also my kidney failure.  I had been seeing my therapist for at least five sessions.  My kidney failure came up in every session mainly because she kept confussing renal failure with cirrhosis of the liver.  I'm not even sure you can live without a liver and yet, with out fail, she would always ask "so you're waiting for a liver transplant?"  It made me so depressed because here I am paying someone to be empathic toward me and my condition and she couldn't even remember what condition I had.  So I wish my family could understand how lonely it is to feel surrounded by people like that.

[monrein]

Cat, you need to call out your therapist on that not-so-minor confusion.  You can tell her that you feel as if she's only listening with one ear instead of two and that there is a difference between liver and kidney failure, just as there is a difference between diabetes and asthma.  Sometimes the devil is in the details as the saying goes and the details of what we cope with are important to a true understanding of what we must contend with.

Don't let the therapist be another source of frustration for you.  She needs to pay more attention.

[KICKSTART]

I think i agree with all the above , there are so many things i wish people would try to understand. I even get from the PD clinic nurses when i go , 'oh you look well' Yes, its amazing what make -up can do !  While i would never place one illness above another , many people are more sympathetic towards cancer patients , they dont understand more about it , but if you have cancer you must be really ill , if you have kidney failure ,well dialysis will cure you once you have done it and doesnt it mean you just cant pee ? No one seems to understand all the other complications that go with kidney failure and if i happen to mention one of them its like ..so how come you got that ? You want to try to educate people but sometimes i really feel like giving up!!!!

[cherpep]

I wish they would understand that I need days off on a regular basis.  It would be wonderful if I didn't have to ask them for it, but they just gave them to me.  Wouldn't it be great if 1/week I arrived home from my job to dinner being ready in a clean house where I could just relax for a little while and enjoy my family or take a nap (before doing dialysis).  For 1 day, I wouldn't have to plan, purchase, and prepare dinner - that someone else did all the thinking AND the work.   A day that I don't have to assign tasks to get the housework done, but they just get done.  I wish they would understand that the exhaustion isn't just physical exhaustion, it's mental too.  I wish they would realize that just because I took a nap last week, doesn't mean that I don't need another one the following week, or even the following day.  I wish they would realize that I can still function and be a mom, I just need more breaks than I used to, and they need to be total breaks.

[lola]

Everything above, and Otto is tired of hearing "how long before your kidney gets better now that your on Dialysis". Some people think D fixes your kidneys I'm tired of people thinking now that he looks better since starting home-hemo that he no longer is sick, just because he no longer looks like he's dying they think everything is all better.

[devon]

I'm thankful that my family seems to be getting the idea that when I say, "I'm tired", I am really, really tired.  I've given all I can get. 

For example, yesterday my mom called because we were supposed to get together for dinner out.  I was driving home at the time and just before she called, I was thinking, "All I want to do is go home and get in bed and sleep until tomorrow."  She totally understood when I begged off and supported that.  I was so thankful.  Yes, I wanted to go to dinner with her but I am just hanging on by a thread right now and she understands that.  No guilt, no hurt feelings.  I am so thankful. 

Even my son seems to be coming around nicely to the reality that Dad can't do everything any more.  When I ask him to feed the dogs or take out the trash, he actually does it!  Wow! And he doesn't complain when I get into bed at 8pm!

It's my co-workers and boss that I wish could understand how difficult it is to put in an 8 hour day.  Sometimes I am barely treading water before noon!  They seem to be patient and understanding but I'm still expected to show up five days a week and put in my 40 hours when I'd rather be home resting.  I don't say much about my ESRD because I don't want them to think I'm "sickly" but, well, I AM sickly!  I'm terribly sick. 

-Devon

[cherpep]

Sometimes I am barely treading water before noon! They seem to be patient and understanding but I'm still expected to show up five days a week and put in my 40 hours when I'd rather be home resting. I don't say much about my ESRD because I don't want them to think I'm "sickly" but, well, I AM sickly! I'm terribly sick.

Amen to that!!!  I'm here at work right now, but barely functioning.  I keep looking at all that space under my desk and George from 'Seinfeld' keeps coming to mind -- where he had the desk configured for a sleeping space underneath.  You're right, we are terribly sick, and for me it's getting increasingly difficult to not let it show. 

[stauffenberg]

The thing I most wished for from my extended family when I first started dialysis was that they would stop saying, "Golly, treatments three times a week!  That's terrible!  How long do you have to put up with that?"

[Romona]

As others have said it, the tiredness. It is undescribeable. From my husband I heard several times, you are going to sleep your life way. The transplant was no picnic. The recovery was very step by step. The meds create chaos for other areas of your body. I try to be thankful for the gift I have been given. I also want to shake people that call off sick because they are tired or have sniffles. I want to tell them push yourself, go to work. If you have a major illness that sick time is like money in the bank.