What do you wish your family understood about kidney disease?

[frankenarm]

I agree on the tiredness. Most people are "exhausted" all the time, and I just want to tell them how my week went to shut them the heck up. I dont get a day off from my life, im physically, mentally and emotionally exhausted every day. I dont have a day off, Sun-mon-weds-fri Im at work from 2-10pm, tues-thurs-sat Im at dialysis. There is not one single day a week that there isnt somewhere I HAVE to be! It gets old fast. Thankfully my coworkers are getting better about the tired thing, esp. if I need to leave early. (I drive cars around, it would be very very bad for me to fall asleep at work!)

What I wished people would understand better is the complete devastation I feel because my body has quit on me. Its almost a betrayal, well it certainly feels that way at times. It doesnt work, there is no changing that. Yeah transplant may help but it brings with it a whole new set of problems. IT ISNT THE END ALL BE ALL... "Oh you got a donor/transplant, thats great! Your all better now right?" ... "No, dumba**, this is the rest of my life. There is not magic 'all better' for this.

[KT0930]

Thankfully (sort of?) my family has been dealing with this my whole life, so they get it as well as anyone who doesn't have CKD themselves can.

While I was on dialysis, I kept thinking I wish my husband's family would get it about the diet restrictions. Now that I've had a transplant, I wish they would get it that I can't eat at buffets (that includes LARGE family functions where I don't know 90% of the people there) and if they are sick, not to fix meals for me.

The big thing was my boss, though. I called in sick ONE day while on dialysis due to bad allergies, and he gave me a hard time about it. He was joking around, but said, "with all you're dealing with, you're calling in for THAT??". I don't think he realized that "sick" for me was someone else practically on their death bed.

[mike22]

Everything!!!! Both physical, social, and mental aspects. When people see me they only think of me as that guy on dialysis. They dont understand that i want to live my life. In fact i can remember when the doctor told me that i need dialysis i wanted start the next day. I just didn't want it to get me down. I want live a fulfilling lifel.
Here is a list. I dont mean to be excessive.
1. I dont like  being looked at as feeble or weak
2. I hated when people try to tell what I need or dont need to be doing. when they really dont know what they are talking bout.
3. I wish they would see Im 22 and i can take care of myself
4.  I will ALWAYS have to deal with kidney issues including transplantation for the REST of my life
5. My mental health is equally important as my physical health. I want to be as strong(mentally) as possible.
6. My education is important to me. If i could finish my degree it would make me feel REALLY good.
7.I cant eat every food like I used to
8. Im not joking when I say i have to watch my weight even though i have a smallish frame.
9. They will never understand how i feel about kidney failure
10 I hate being told i need to drink plenty of water. They dont know I will pay for it  on hemodialysis.
11. They fail to understand that i WAIT for a kidney,hence the name waiting list.
12. I dont like when people ask me "How long will you have to do dialysis" 
 

[flip]

I don't have any close family other than my critters and they tend to be overly protective when they sense I'm feeling bad. I think they probably understand better than humans do. They love me even on the bad days.

[karen547]

Everything!!!! Both physical, social, and mental aspects. When people see me they only think of me as that guy on dialysis. They dont understand that i want to live my life. In fact i can remember when the doctor told me that i need dialysis i wanted start the next day. I just didn't want it to get me down. I want live a fulfilling lifel.
Here is a list. I dont mean to be excessive.
1. I dont like  being looked at as feeble or weak
2. I hated when people try to tell what I need or dont need to be doing. when they really dont know what they are talking bout.
3. I wish they would see Im 22 and i can take care of myself
4.  I will ALWAYS have to deal with kidney issues including transplantation for the REST of my life
5. My mental health is equally important as my physical health. I want to be as strong(mentally) as possible.
6. My education is important to me. If i could finish my degree it would make me feel REALLY good.
7.I cant eat every food like I used to
8. Im not joking when I say i have to watch my weight even though i have a smallish frame.
9. They will never understand how i feel about kidney failure
10 I hate being told i need to drink plenty of water. They dont know I will pay for it  on hemodialysis.
11. They fail to understand that i WAIT for a kidney,hence the name waiting list.
12. I dont like when people ask me "How long will you have to do dialysis" 

 
 
Well said, I would agree with that entire list!


EDITED - fixed quote error - Bajanne, Moderator

[mariannas]

EVERY time I talk to my grandmother she asks me if I've heard anything from the transplant center about when I will have a kidney.  I know she means well, but I have tried to explain that I have NO idea when a kidney will come up, what the average wait time is, etc.  EVERY TIME!!!    

[del]

I wish hubby's sister would stop saying that hubby is sick!!!  He's not!!!  last year she even suggested getting her church to give him a hamper because he was sick. Hubby told her not to .  we are not in need for anything like that!!  Someone who didn't have much money and a family of kids could use it a lot more than us.  I would not have accepted it if they had brought it.  He does dialysis but he does everything else as well!!!  She didn't want him to do nocturnal because she was afraid something to happen in the night. His mother is the same way.  She lives with us and said she was afraid for him to do nocturnal. She had absolutely nothing to do with it.  For the first few months if the machine alarmed she would come out of her room asking if everything was ok and if she could help.  Hubby had to tell her (or maybe it was me) to stay in her room and ignore the alarms . Hard enough to figure out trouble shooting first when we started without having someone who knew nothing about it trying to help.   His sister wasn't one to offer to go to treatments with him when he was in center!!  His mom always talks about his "bad" arm because the fistula is there!!  Hubby keeps telling her that is his GOOD arm. 

[Bajanne]

I more or less agree with everything that has been said.  My family has dealt with dialysis before, so there is not much ignorance shown them.   But I am not living in our home country and I started dialysis here.  One thing that friends did not understand is that dialysis is not just therapy.  My cousin who used to take me to dialysis always calls it 'therapy'.  "What time your therapy is going to finish?"  I have to tell them that it is not therapy, it is life support!
My problem is also with the dialysis staff, from a different point of view.   They seem to want me to make this the only thing in my life, just because it keeps me alive.  When i want to shift my session so I can get to go somewhere a weekend, they make it seem that I am not aware of the seriousness of dialysis.  When I want to make sure that my computer connection (laptop) is plugged in before I go on the machine, that can be a problem.  It is as if you always have to fight to prove that your life is much more than the dialysis session.  I spoke to the supervisor and told her that we don't only need physical help, but our emotional and psychological state is also very important.

[boxman55]

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

Amen...Boxman

[bolta72]

 

[funnygarcia]

I know for my husband.. it's for his mom and siblings to STOP harping on him to get another transplant.

He's not ready for it emotionally, we don't have good insurance for it.. he doesn't WANT a transplant right now.
His mom keeps saying "I'm giving you MY kidney, I don't care if the doctors say no."

umm, she has hypertension and a mystery illness that causes dizziness/blackouts.. why would anyone want her kidney??
 

She also made a big deal about not wanting to see the NxStage set up, sorry you don't want to "deal with all that" but we need to everyday. Darn if we aren't happy as can be to do home hemo and want to show off a little. 

[lruffner]

My family is pretty weird and friends are obsolete since I have taken care of my mother for 5 years. A few siblings/ in-laws just want to gossip about my "condition", but not discuss it with me, unless they have further gossip questions.    My brother that lives in the same state as me doesn't believe that anything is wrong with me...just think positive and it will be ok..... Needless to say, he has never returned my call about helping with my mom's post-transplant appts., since they are 3.5 hours away, so I have still have to take care of her and myself.  Those are some seriously long road trips, not to mention procedure and wait times (12 hours and then the trip back home) !!  I am thankful that I am not dealing with the major side effects YET that most on here have and that my husband is very supportive and always there for me.

[cherpep]

My sister once told me that her goal was to make me better.  Therefore, she would pray for regeneration.  I want my family to understand that there is no 'getting better'.

[paris]

I have two friends that pray every day for my kidneys to regenerate.   If it were that simple, we would all have working kidneys.   I know they mean well, but it is frustrating.  Help me clean one day, or give a hand when things are overwhelming.   That wouldl make a difference in my world.

[okarol]

Jenna's great-grandmother would say "Oh don't worry dear, she'll get better soon." 

[paris]

I love my brother -- one of the really good guys.  The other week he asked if I was feeling better.   I think people just don't know what to ask or even if they should ask.  I'm going to have xerox copies to hand out to everyone---stats, numbers,lab results,  transplant center info-------   

[Jay72]

I have to say that between this topic and the :Ignorant things people say to you" topic, I find that most of the comments either from loved ones or from friends is just a matter of them not understanding what we are going trhough, and have never known anyone that have kidney failure.  Therefore I don't think 90% of the comments or questions are unreasonable at all they just don't know are are not trying to be rude or ignorant.  i personally never have taken any of the questions like "Are you on a list to get a transplant" or "When are you going to feel better" or the big comment "I wish I had a machine to help me lose 10 lbs in 4 hours."  I understand that they don't mean to be nasty by saying these things or how we feel when we have too much fluid to remove.  so just take it as it is and not bark back at people.

[paris]

I think most of us just smile and say "I'm doing great".  I certainly am not rude to friends or family.  But it is nice to come here and vent frustration.

[Jay72]

I was just relating to many of the replies I have read.... hope I haven't offended anyone.

[paris]

That is the great thing about IHD, we can all put our feelings out there.       You have a very good attitude and may be able to help others through their frustrations.   

[Robby712]

     What do you wish your family understood about kidney disease?

I wish they wouldn't get mad when I tell them I can't go out to lunch with them b/c the food has too much salt, phos, potas, etc...in it.

I wish they wouldn't call me on MWF 3-7 and ask what I was doing.  (Uhhh, the same thing I've been doing every MWF for the last 4 years)

I wish friends would understand I'm not just blowing them off every Friday.  I just don't feel like going out after working all week and then dialyzing.

[TynyWonder]

I have noticed recently that when I feel good and it shows............and on days when I feel bad it shows, that family thinks I am just being moody on the days I feel bad, its not me just being moody...........its just that I don't freaking feel good!!!!!   

[Jay72]

I think a big problem with family and espically friends is that "most" not all look very good health wise compaired to how we feel.

[boxman55]

Your right Jay72, people always say man, you look real good are you better. Ugh  ...Boxman

[CatEars]

It is a very lonely feeling always having to explain and never having someone who just understands.