Anyone have experience with Poly-cystic kidney disease?

[*********]

My stepson was just diagnosed. I am well versed in kidney function, etc, as a living kidney donor, but my 16 year old stepson so far has reacted to it with the "I'm invincible" character that plagues many teenagers. His mother and grandmother also have it, as it is genetic. However it is presenting much more mildly in his mom and grandma than in him. His cysts are already bigger than his mothers. It is causing him pelvic discomfort sometimes. 

His mother and I are trying to get him to understand that while its not a death sentence, he does need to take extra precautions regarding his kidneys. The biggest being no caffeine and no nsaids (Alleve, Motrin, etc. Basically he should only take acetaminophen unless it's a rare thing). He is not at all liking the no caffeine, as his mother was apparently allowing him to have it quite freqeuntly at her house. We don't stock pop here at our house, and the Keurig is for dh. I hadn't worried about the small amount of caffeine in iced tea, but I'm going to switch to using decaf tea bags to make it,since that's mostly what he drinks when he's here. That and water. He doesn't care much for milk.

Anyone have any experiences they could share? This is all very new, so having someone btdt would be helpful. I'm trying to  figure out how to encourage good kidney health habits, and for him to *get* that he needs to take care of his kidneys so he can go as long as possible without needing dialysis or transplant.

[Flowing Brook]

My pastor's wife's son in law has this.  He is in his late forties. He is just now at the stage where he needs a transplant.  The doctors are amazed that he is in no pain. The doctor's say the only reason that he is doing so well and made it this long without needing a transplant is because he was/ is so careful with how he eats. This is also why as of yet he does not need dialysis. He is almost at that point but thankfully not yet.   He drinks a lot of water which helps as well.

:grouphug:  to all of you.

 

[Rebel Yell]

My dad had polycystic kidney disease.  I was young (3-ish?) when he was diagnosed- it was hereditary.  His nephew had the same thing, and actually received a transplant from his wife!

 

Anyway, that was many years ago- my dad had his transplant in '79 or so... things were very different then!  I remember when his dialysis machine took up a room in our basement.  Anyway- my dad had to have his kideys removed a few years before a transplant was available- they weighed 28 pouds and were doing him moreharm than good at that point.

 

Again, I was very young, and remember very little- but I do know the only time my dad could have a beer was when he was doing his dialysis!

 

I doubt any of this will help your son, and my dad was in his late-30s when he was diagnosed. I hope things go better for your son.

[*********]

My dad had polycystic kidney disease.  I was young (3-ish?) when he was diagnosed- it was hereditary.  His nephew had the same thing, and actually received a transplant from his wife!

 

Anyway, that was many years ago- my dad had his transplant in '79 or so... things were very different then!  I remember when his dialysis machine took up a room in our basement.  Anyway- my dad had to have his kideys removed a few years before a transplant was available- they weighed 28 pouds and were doing him moreharm than good at that point.

 

Again, I was very young, and remember very little- but I do know the only time my dad could have a beer was when he was doing his dialysis!

 

I doubt any of this will help your son, and my dad was in his late-30s when he was diagnosed. I hope things go better for your son.

 

Rebel, do you mind me asking if you ever got tested? My stepson got tested because he was complaining of pelvic pain that was not being diagnosed as anything else, and his mother had been diagnosed with the disease already, so she took him to a pediatric nephrologist for an ultrasound. So now my stepkid's mother and I are trying to convince my stepdaughter, who is 19, that she should go get checked out for her peace of mind (and ours). You mention that your dad's nephew had it, but did you or any of your siblings (if you have any) or any of your dad's siblings (if he had any)? 

[celticmom]

:grouphug: No experience with kidney disease but I cannot have caffine for other reasons. He will probably not want to hear this, but don't forget to eliminate chocolate. White chocolate is still okay.