What do you wish your family understood about kidney disease?

[okarol]

My Husbands Brother, a very Educated Man, came to visit us, last April. He wanted us to come Visit them in May. His Words were " We can go out to Dinner, everynight, We can go Deep Sea Fishing, there is a Party on the Beach, every Night" I pulled Him into the Kitchen and said, " Ron, can't do any of those things, He has Dialysis and other Issues, it's hard for Him sometimes, to get from Room to Room " My Brother-In- Law, looked at Me and Said, " You know what the Problem is here, YOU, don't want to have any Fun", they left and He has not Talked to my Husband since. Seven Months Ago.  Sad.  If it was My Sibling, I would be on this Site, learning all I could. Sad.

And who could have known 2 months later your hubby would be gone?  His brother missed out on "fun" just being together.
Families can be a great source of support, or a real pain in the A$$.

[rsudock]

My Husbands Brother, a very Educated Man, came to visit us, last April. He wanted us to come Visit them in May. His Words were " We can go out to Dinner, everynight, We can go Deep Sea Fishing, there is a Party on the Beach, every Night" I pulled Him into the Kitchen and said, " Ron, can't do any of those things, He has Dialysis and other Issues, it's hard for Him sometimes, to get from Room to Room " My Brother-In- Law, looked at Me and Said, " You know what the Problem is here, YOU, don't want to have any Fun", they left and He has not Talked to my Husband since. Seven Months Ago.  Sad.  If it was My Sibling, I would be on this Site, learning all I could. Sad.

And who could have known 2 months later your hubby would be gone?  His brother missed out on "fun" just being together.
Families can be a great source of support, or a real pain in the A$$.

Just thinking the same thing Okarol...Mizar thinking about you and hope you are finding comfort with your hub's passing....

xo,
R

[Brightsky69]

We need the same marketing team that the breast cancer people have. Breast cancer stuff is everywhere.

[Enginman]

I have read all of the posts in this thread, I can agree with all of you. My family is understands most of my needs, I help my son in his welding shop must every day when I get tired I just set down till I can go some more. If I have a bad day I just stay home, he understands and we just do the next day what we were going to do that day. in the last couple of months before the company eliminated my job and I was forced to into retirement/disability my coworkers would ask me "What are you going to do" i would say to them that "I was going to live Happily Ever After" and I am!!! CKD has it's up's and downs as you all know but with God's help and a lot of perseverance!!! I am doing OK. When people ask me hoe I feel I tell them that "I'm in Pretty good condition for the condition that I'm in".  Best I can say is ride the bull when you can and when you can't set in the stands and cheer the guy that can.

[Des]

Everyone must just understand that ALTHOUGH I look fine - I am NOT. I am still as sick as I was a year ago and I will be sick until I get a transplant and then I will have another set of problems.

I was removed from the church's prayer list and I asked "why" I was told that I look so good they thought I was fine. I replied that I am still very ill and that nothing has changed , in fact I am worse than what I was as the effects of doing Dialysis is taking its toll. (depression, heart problems, joint pains, parathyroid ,guilt, Low blood preassure,low HB, cramps and lots more)

So I just wish that friends and family (as well as people at my church) must realise that this disease is NOT curable and it will not dissapear because I look better. It is a LONGterm disease.

[Steve-0]

Heh.  Yeah, it's funny.  I lost about 25 lbs over the past couple of months - and I wasn't trying to lose it.  I've just been sick - yet people are always saying "Wow! You look great!"

and I want to reply "I'm dying!"

Sigh.  Glad I was fat before I got sick.  Fat people just get skinny.  Skinny people just up and die.



~Steve

[thegrammalady]

i've got a friend that i see every now and again. he asks "besides the kidney thing, how're doing"  he gets it, most people don't.

[rsudock]

i have people tell me all the time, "you look great!" like dialysis agrees with me or something...stupid

[chook]

With you on fat people just get skinny, Steve: I'm thin &people think I'm fit. A bit in reserve  is a good thing when your health is on a fine balance.

[Gandalf]

I agree with the posts in this thread - the tiredness is something I really wish they understood - so that when my brother's children have UTTERLY overwhelmed me and i retreat to bed after lunch, I am not being unfriendly, unloving or rejecting - I am just absolutely exhausted.
But very most of all, I wish when people say "how are you" they don't only want to know about the state of my kidney, and my urinary rate, but actually want to know about ME - if only they understood that I am bigger than a kidney, and while much of my life might be structured around whether I pee or not, but that does not mean it is ALL I am....!

[chook]

Have reread this thread - it is so full of how life is with ESRD. And loved the products with the 'Duck Fialysis' logo - very clever! I've just had a few health dramas and everyone keeps telling me how good I look. That's only because two weeks ago I looked awful! 

[Henry P Snicklesnorter]

.

[rsudock]

Being one of the (seemingly) few who functions well on dialysis, I don't have a problem with people saying that I look well. Thats because I am.
I'm not sick, I just happen to have kidneys that don't work, but it's a minor inconvenience in the broad scheme of things.

Henry it is not that it totally ticks me off that people say, "oh you look great!" what makes me upset it that when people say that they are really thinking in their mind something along the following lines....

1. "hey dialysis must not be that bad look how great she looks." (We all know dialysis sucks and you have your good days and bad days)

2. "she/he must not have an urgent need for a kidney if dialysis is doing such a great job. (who doesn't want a chance to get off the machine?)

3. "Well they don't look that sick they need to work" (some days you feel like you can work, some days you can't)

People equate looking good with being healthy....I am of the mind set that people need to know how serious and life consuming not having kidneys are...it's not a walk in the park....dialysis ain't for sissys!

I am glad that you have a more uplifiting positive outlook on not having kidneys...maybe I will get their eventually....
xo,
R

[Cordelia]

That having kidney disease and being on dialysis doesn't necessarily mean its an old people's disease! I'm under 40 and everybody says, "Oh, you're so young to have that" It can strike anyone at any age!

[Henry P Snicklesnorter]

.

[chook]

I agree - dialysis, especially haemodialysis, is not for sissies! And Henry, I often say if you have to have an organ fail - make it a kidney.  I'd stay on PD forever if I could. 

[okarol]

As a caregiver, I feel as though I need to know all the in and outs of dialysis and transplant, but it's always changing. I wish our family and friends understood that this is a lifetime illness, it affects all parts of your life, that it isn't going away, but we do the best we can.

[cattlekid]

I wish my family understood that I have no idea when I will receive a transplant.  Since none of them (and there are a lot of them!) have taken the time to even inquire about being tested, I am waiting for a cadaver donor.  No matter how many times I explain how the cadaver donor list works, they just can't seem to get it through their heads that it's not first come, first served.

[malaka]

As far as day to day life is concerned, dietary restrictions.  I wasn't being "picky" when I didn't eat the mashed potatoes at Thanksgiving or the pumpkin pie.  Turkey, stuffing and cranberry sauce (with a little homemade gravy) were just fine, thank you.   I know you worked hard cooking the other things, but they weren't on my "OK" list.  So I didn't eat them.  Including the home baked whole wheat bread or whatever brownish bread it was.   

Because I don't look sick, they don't think I'm sick. Hey, I don't feel sick now, either, that I've adapted to hemodialysis.  But I am, and always will be, sick.  At least until I get a kidney transplant.

[gothiclovemonkey]

it sure is frustrating, even more so when you tell them many times over that you cant eat that, but they make it anyway and you dont have any other option but to eat it. and then they wonder why you dont feel well.....

[Riki]

I've given up being tactful, or even nice in some cases, when people ask me how I'm doing, or when I'm getting a kidney... the only people I won't give the gory details to are my grandparents, since they are in their 80s and I don't want to upset them.. I have no problem now telling people that I get stuck with needles the size of drinking straws (ok, they're not that big, but they're pretty damn close), or showing them the black, swollen lump on my arm where the nurse missed the vein.. I want them to know that what I do to continue living is no walk in the park

[Hazmat35]

Not so much my "family" but my "family" at work.  On Dialysis days, I start my day in the office at 5:30 AM.  Which means, I'm up at 4:30 AM, getting ready and driving to work.  On normal days, I start @ 7:00 AM. 

I work a full 8 hour shift including a 1/2 hour lunch, and then go to my in-center treatment @ 2:45 PM.   I do feel guilty about leaving, to go to my treatments when my co-workers are still working, but then again, I came in to work, while they were still under the blankets. 

But I constantly hear, every M . . W . . F. . "there he goes, working a 1/2 day again.  This must be his 2nd or 3rd 1/2 day this week".... I am so sick and tired of hearing this. 

I put in (and my boss knows it, so I'm good), but, I put in 70+ hours Monday - Friday and then come in on the weekends, or take work home with me nightly and on the weekends. 

I am the first one to be able to take a joke, or be the butt end of a joke.  I don't mind it at all.  Lord know's that I can "dish it out", so I surely had better be able to take it, too!  And I can, I've got big shoulders.  But it REALLY bugs the HELL out of me to hear that.   

[Riki]

I'd look at anyone who said that and ask if they wanted to trade..

[Deanne]

One of my neighbors is a bit annoying. I ignore it since I can't 

I have a landscape company taking care of my yard and landscaped areas now. She's made a couple of snide comments about it.

She also keeps trying to push plants off on me. She decided I should dig my daylilies out and replace them with the variety she has, and she keeps trying to give me other perenials from her garden. I'm not planting anything until after I get a transplant and get some energy back, and even then I'm going to choose my own plants.

She has some sort of weird pod thing growing in her yard and she laughed at me when I refused to eat it.

[MooseMom]

I have a landscape company taking care of my yard and landscaped areas now. She's made a couple of snide comments about it.

There is a couple who live two doors down from us.  I've seen him very occasionally (I don't even know his name), but I've never seen her.  They have a landscape company come take care of their yard, and they also have Peapod service delivering groceries.  It wouldn't even occur to me to make snide comments as I would give anything to have so much practical help!  I can't help but wonder if she is quite ill, but all the evidence points to a pretty big problem.  I'm sorry, Deanne, that you have to deal with such an idiotic neighbor.