Younger people - How do you encourage compliance?

[Deanne]

My nephew was diagnosed with FSGS a few years ago. He's a college freshman now, living away from home and still healthy. It took me around 40 years to reach ESRD after diagnosis and he'll hopefully follow my path, or do even better and never reach ESRD. But his mom (my sister) is worried that he isn't compliant. She just sent me this:

"He has his dreaded kidney appointment coming up, or maybe he’s already had it and not told me. But he was going to get the 24-hour pee jug and lab work done at St. Thomas and he said that he called the nurse twice to get the orders transferred to St. Thomas and she hadn’t called him back. I mentioned how if you send the doctor an email he will respond immediately (he didn’t hit me). He said he’s not going to bother a doctor with stuff like lab work.  HA  So if he didn’t do his lab work, his urine collection AND hasn’t been taking his pills…. Ooh.  I hope the doctor copies us on the follow-up letter that goes to our family doctor. "

I can understand that as a young college guy, he just wants to be normal. Do you have suggestions to help him understand he isn't invincible?

[okarol]

It's tough to deal with a chronic illness, especially when you're feeling ok. I think maturity is the main thing, you can tell them everything, but until they personally grasp what's needed, they are going to do what they want.

[Riki]

I've been that kid, and there really isn't much you can say.  As must as you don't want it to happen to him, he will do his own thing.  All you can really do is tell him that actions have consequences, and that when the time comes, it's him that has to live with the consequences, and no one else can do that for him.  I learned that the hard way, when I lost my first kidney in my early 20s.

I lost the second kidney by giving up on it in exasperation.  I knew that there was something wrong with it a year before anything started showing up in bloodwork, but nobody would listen to me.

[jbeany]

We all think we're invincible when we are young.  We can't imagine anything happening, and even if we can, 40 years is FOREVER - and we think we'll be ancient by then, so who cares if we're die a bit sooner.

Want a pic of my gory gut with my intestines hanging out because of my transplant complications to send him?  Fear might work....

[Lillupie]

Kidney disease is really, really, really hard. Because if you are not on dialysis and even then you feel soo normal. I try talking to diabetics when I meet them, or anyone for that matter, and even with my 64 year old mother, people usually dont seem to care. Im guessing there is a number of people young and old who never make it to dialysis, and since you dont hear about it, you dont think its going to happen to you. It kind of is a rare thing, if you think about it. usually its not like you can walk next door and that person is on dialyiss. When I went to the doctores pre-esrd, different doctors tried telling me that I may never need dialysis, Im sure partly because I was soo young.

Just tell him what he doesnt do now will hurt him in the future.

Even if he were on dialysis, it still might be hard for him to be compliant (sp?) I know a girl who started dialysis at age 8, and now she is 22. Never got a transplant because she admits that she wont take her medicine, when she got transfered to the adult nephrologist, she couldnt get her phos down to get on the transplant list then either. Her and I were on the same clinic days, and she quit going to clinic and i think she got refered to hemo because no clinic= no supplies.
Lisa

[jeannea]

It's really hard. I was 22 when diagnosed with ESRD. They put me on the low protein diet with lots of pills. I didn't want to do the diet. I ate a ton of ice cream and felt so sick. I wouldn't take my meds and stopped going to class. It took me about 2 years until I was really compliant. I had to figure it out for myself. I had my mother nagging me but that didn't help. Just be as supportive as you can. Try to encourage without nagging. But he has to figure it out and want to do it.

[Joe]

Take him on a tour of the dialysis center. Showing him what's in store if he doesn't shape up might help.

[KarenInWA]

I was diagnosed with CKD at the age of 23. I never had any symptoms other than crappy lab results, that only got crappier as time went by. The CKD diet made me angry, so I did not follow it. For one thing, I have always been skinny, so I felt that if I followed it, I would only be skinnier which is not healthy. I always felt that God played a nasty trick on me by giving me a high metabolism where I could eat what I want and not have to count calories or fat grams, a fairly large appetite to go with it, and a crap disease where you can't eat anything. The CKD diet is perfect for someone who needs to lose weight, since eating nothing will give you the desired results. But, when you are already at an ideal weight, and not far from  being underweight, it is not good at all.

It was also hard to take my CKD seriously since I did not have any symptoms. The only thing I needed to do was go to the dr and take my BP meds, which were at first prescribed to help with protein in the urine. However, as time went by, my BP got higher, although I never had any symptoms from that, either. Thankfully, my BP was never scarily high. It got fairly high a few times during D, though.

All that being said, I did not start dialysis until age 37, where the symptoms of CKD/ESRD did not hit me until just days before I started dialysis. I had a GFR of 6 by that point.

KarenInWA

[MightyMike]

I was in the category.  I was diagnosed at 22 and given at least 5 years I followed all directions and took my meds as instructed and my kidneys managed to fail 8 months later.  It's great that he is still healthy for the most part but sometimes unless we are faced with the end result we take what we have for granted.  Like some have said young people these days think they are invincible or maybe not dealing with it head on is his way of not stressing about it.  I sure hope he snaps out of it because if there is one thing we all know that this disease does make our lives more difficult.  Best wishes.

[sullidog]

As a young person, I just learned by myself you have to be compliant, also I know that noncompliants does bring consiquences such as if he wants a transplant ever if they find out he may get booted off the list and I know so will I if I don't be compliant

[Riki]

I was 12 when I was diagnosed, and started dialysis right away.  I have no choice in the matter.  I did what I was told, because I had a mother (and still do) who would kick my behind if I didn't do what I was told.  I'm 34 now, but there was a time, not really that long ago, that I had doctors who were only a few years older than I was, telling me that I needed to change my ways if I wanted to stay off dialysis.  I remember a particular female doctor who told me this, and I remember thinking that I was doing this when she was still chasing the jocks in high school.  I didn't appreciate being lectured to by someone who had less experience with kidney disease than I did.  I'm older now, and have been on dialysis for 8 and a half years, and as much as I think they botched my last kidney by not listening to me, I didn't help it by not listening to them either.

[bleija]

i understand this. i was 18 when i was diagnosed with kidney failure, no prior signs whatsoever. my thumb swelled up and i actually thought i broke it. went to the er to make sure it wasnt work related. well bp was 190/170. and only jumped up from there. i was in total shock and really do not remember much. i really dnt remembr what got me to accept everything. i was hospitalized in march and told i would need dialysis. my dr waited as long as he felt he could before forcing me to make a decision. i had from march to may. honestly he may not want to accept it bc hes ashamed or embarrassed i know at first i was. i know it wasnt my fault but i felt inadequete, and did everything in my power to hide it from ppl that i ddnt want to know only a select handful of ppl knew about my kidney issues.
for the first year i really didnt take my meds and played dumb when my numbers and pressures werent where they needed to be, never washed my hands <chose pd, could hide it better> never took my bp or temp. got plenty of infections. when i had to go on hemo that was my wake up call. i got my act together, luckily before i had any major damage. got listed and got my kidney the day before my 22nd bday.

[Mr Pink]

I more or less fall into this category... more or less. I was 13 when I was diagnosed with Alport's. I was told that I was unlikely to have to deal with it, or at least not until I was much older. When my sister was transplanted in her twenties, I figured that it was most likely that my time would be cut short just as hers was. So what did I do, partied like it was 1999! I boozed my way around the world and lived my life. I put the breaks on all that when the doctors told me to. And 6 or 7 years later, I was doing dialysis for the first time. I have no regrets about how I lived. The key point there is that I lived, and I'm still living, albeit somewhat more quietly these days. I'd have been disappointed had I not experienced what I did in my thirties, especially experiencing what I now am in my early forties. My advice; let the lad have a life. Tell him to enjoy it while he can, because it obviously won't last forever.

[cariad]

I more or less fall into this category... more or less. I was 13 when I was diagnosed with Alport's. I was told that I was unlikely to have to deal with it, or at least not until I was much older. When my sister was transplanted in her twenties, I figured that it was most likely that my time would be cut short just as hers was. So what did I do, partied like it was 1999! I boozed my way around the world and lived my life. I put the breaks on all that when the doctors told me to. And 6 or 7 years later, I was doing dialysis for the first time. I have no regrets about how I lived. The key point there is that I lived, and I'm still living, albeit somewhat more quietly these days. I'd have been disappointed had I not experienced what I did in my thirties, especially experiencing what I now am in my early forties. My advice; let the lad have a life. Tell him to enjoy it while he can, because it obviously won't last forever.

I agree with this. I would add that as a college freshman, he is probably over 18 and there is nothing his mother can do to stop him doing what he's going to do. However, it doesn't sound like he needs to be doing much right now, so I'm not sure what the worry is. I would tell your sister (nicely) to step off because if your nephew is anything like I was at that age, he'll just be driven to rebel more and more if the people around him keep carping on his behaviour. I would skip meds all the time because I was locked in a permanent power struggle with my parents who were control freaks. The way that they conducted themselves when it came to my medical issues destroyed our relationship and still reverberates in our interactions today to some extent. Your sister should not be getting copied on any of his results (unless he is still a minor). I would have gone all HIPPA on any doctor who told my parents anything about me without my consent, but sadly we did not have the strict privacy laws that we enjoy today back when I was a freshman.

It is no doubt frustrating and who knows, maybe I'll be singing a different tune when my kids are that age, but he has a right to medical privacy. The more she demands to know the more I suspect he's going to lie and refuse to confide in her at all.

[Deanne]

You're all very wise - thank you!

[Lillupie]

There is even a chance that once he gets on dialysis he still may think he is invincible. Sorry. I just know too many young people who are on dialysis, not online, who do what ever they want to do, from letting their phos get over 10 all the time to missing clinic.

Lisa

[MommyChick]

When I was 12 I was diagnosed with CKD, by 13 I had my 1st transplant.. so I started with this all way to young! I hated being the "sick kid who needed the kidney" so when I finally was able to go off to college on my own.
I was very scared & worried & I did what the doctors said just so I could be "normal" I know most kids are not that way! They think they are all invincible but honestly until you can mature & realize that your not, there's not much you can really do. I had 2 younger brothers growing up & they saw what I had to go through & they still thought they were untouchable! I defiantly think its a maturity/ learn by your mistakes type of deal.
I hope he can learn sooner then later!
Good Luck & God Bless!

[deniferfer]

I was 15 when all of this was thrown into my lap all at once and basically over night. I was lucky in that I was a old soul and always have been so taking on the diet and responsibility of dialysis was something I knew and fully understood I needed to do to live. But that was me and I am NOT the norm, Just talk to me for 15 mins. 

But I have 3 younger sisters all under the age of 24. I'm at times very thankful they were never given this to deal with. To be honest they think the know all and any advice or wisdom  I try to show them or give them is usually by passed and they have to learn on their own. Most of their problems and small and the price they pay is nothing compared to the future being stuck on dialysis. My best advice is to genitally help guide him to make the right decisions and make things he can have something worth wild!! Now for my youngest sister I use logic and show her my point of view and show her where I am coming from and that I do know a thing or two.  I wish you the best of luck and hope you can get him to be to do what he really has to. 

[WishIKnew]

I'm with Mr. Pink and others.  The many years I had between my diagnosis of FSGN  and then Alports  until ESRD I was blissfully ignorant and accomplished all kinds of things I would not have if I'd have thought of myself as a sick person.  He will (or maybe not, God willing) have plenty of time to deal with the reality of kidney failure.  Until then I would encourage him to live, be normal (not stupid) and have his life!

[bleija]

im not sure if live blissfully ignorant is the best way to go. the nurses parked me right in front of the nurses station bc they were afraid that i would have a stroke right there. my bp wouldnt respond to anything. they eventually put me on nitros and it still never went below 180. but as said before it is his life and his choice and i hope he figures everything out before its too late.