about passing such dark urine, being so tired, getting up 2 or 3 times a night to pee, and all the infections.
why didn't my doctor do anything ? no one seemed to think it was a big deal. I was just being a worry wort.

well that's great now that my right kidney is ruined and my left is following suit.

asherah

What do you mean? What happened? Did Doc call back?

i have to go back and see him when my infection is cleared up.
But i have had trouble with my kidneys for years and my right one is pretty much ruined. my left is starting up with all the problems the right one has. reflux and infections etc

so now i'm spilling protein.. great.. i guess they can't pay attention unless its' more seroius.

I know the feeling, my anatomy is screwed up but "I have 45% kidney function" so I am not "Sick enough" to qualify for the surgery to fix it. Once I get sick enough - will I then really be strong enough to endure a long and major operation - and for what - they can't give me function back - the surgery is only to stop it from getting worse.

I am a shoudler for you to cry on. I am sorry that you too have become a victim of MD compassion. I can't fix you but I'll be here for you and I'll be praying for you.

Sorry about your problems, ladies. What is the threshold? When do they start paying some attention? In other words, how bad does one's kidney function have to be for them to take notice? Just wondering what criteria they use. My regular doc does not seem to care. My nephrologist does, but I don't get to see him much.

flowergirl

well my new doc is th eonly one who ever paid attention to it. he gave me an ultrasound and told me i'm spilling protein.
He asked me a bunch of questions like do i get up at night to pee.. yes 2 or 3 times..
does it hurt to go..no.. ok well he said that something is wrong with my right kidney and there's something he doesn't like about it lol
that doesn't tell me much..

what i do know..
i have reflux on both sides, used to be just the right, my right side also dilations (whatever that means)
anyway.. basically i think you just need to find a doc that is thorough..
my old doc had a tendency to just blow things off..

asherah

The right side dilation means that the ureter on the right is in a constant open position. I have this too. It usually occurs when passing the stone but in our cases it never closed again. It is something to note as it leaves you more suspectible to kidney functions.

Flowergirl -

For me they said they will fix it if the function drops suddenly. They never defined it past that. In the interim this means every 3 months I am subjected to a very painful and expensive test to measure my function. They say the function can drop overnight without warning. It sucks, it makes me worry every time I travel, it made me give up my dreams of having children, the test is 2 or 3 hours every time I go so I have to use some of my vacation time for that - and it ain't no vacation, I constantly have to monitor fluids and be on the look out for kidney infections. Ironically the docs who admit they can not fix it think I should have the surgery now, those that can hesitate - are they just scared of fixing it?

Asherah -

One other thing, I have been on this emotional rollercoaster before with the docs. And it is good that you got angry, it is part of the natural progression. Next comes depression which is the hardest to get past, again I will be here for you when you hit that stage.

Prayers and hugs,
2+

I actually feel like crying right now..
When I go it's all bubbly now.. all frothy.. i was liek what is that.. oh .. great
=(
so I guess I have a new symptom now...my hubby doesn't understand. he tells me to be positive, that maybe I won't need dialysis etc.
What does he think kidney disease does ?

I feel like I can't talk to him about this. I'm glad I can come here..

asherah

If you want to cry, cry. It's ok. The froth may mean that your urine is too alkaline. It should clear up in a few days. It has partially to do with the stress of all this. Decrease your protein intake and increase your carbs - it will help absorb some of the excess acid.

I suggest you go buy milk or some other grocery staple but get it a few towns away. When you get in the car - pump up the music and scream and then cry - you will feel better I promise. I haven't done it in a while but when some of us on the boards are having a hard time we synchronize a group scream. Very therapuetic.

My hubby doesn't always get it either. He says I should stop trying to find out what is causing the pain as it just disappoints me when we hit another brick wall. I think it is less that they don't get it then they are scared of losing us and scared because there is nothing they can do to help us right now. When a loving hug, a shoulder to cry on and a "surprise I cooked tonight" would actually do wonders for what we are going through.

Hang in there kiddo!

:angel::angel::angel:OOOOOOOO:angel::ang el::angel:

Thank you for your comments, 2plus and asherah. :)

What I find really scary is that in the absence of pain, there's no way to tell what the kidneys are doing. I think about it often. I know I am lucky that there's no pain (yet) though I do get occassional, nagging achiness in the kidney area. I fear seeing the results next time I am tested. That's because it ain't getting any better and NOTHING is being done about it. What is the rate of progression of CKD? Is an 8% loss of kidney function over a three month period worrisome?

Asherah,

hang in there, honey. Don't let the depression get a hold of you. You have to remain strong and positive. Crying helps. It helps if you have someone to talk to. I don't. I never discuss any of my medical issues at home. I come to these boards for help & comfort. They are a great place to be. :) As 2plus said: we'll be here for you!

Hi
They only notice when it's too late...that's why i have no right kidney.

That's my fear - as there is only one to begin with.