[Beholden]

Hi all,

Just wondering if any ofy'all have any kidney issues? and want to chat?

thanks

Hello Heygimm,

My hubby was just dx'ed with CKD Stage 3. It is all just "unfolding" so I'm in the process of learning about a low-protein lifestyle, how the kidneys work, etc.

He's had "little hints" that something was wrong over the years, a high creatinine level was the most consistent. A few years ago he was sent to a kidney specialist but was told he did not have kidney disease. He just switched his primary care physician due to relocation and this new doc told him point blank, "you have kidney disease" and sent him off to a nephrologist who confirmed.

He goes back to see him this month for results of the tests he had done.

What I find hard is getting the energy to rise to this occassion. I have been non-stop with some pretty stressful events in my life since January and just started to think it was over and I could finally breathe. Now this.

I KNOW I will rise to it, but I sure wish I didn't have to. Just ordering a cookbook was exhausting. Yuck. That sounded so selfish.

[Beholden]

Originally Posted by Orange_Blossom

Hello Heygimm,

My hubby was just dx'ed with CKD Stage 3. It is all just "unfolding" so I'm in the process of learning about a low-protein lifestyle, how the kidneys work, etc.

He's had "little hints" that something was wrong over the years, a high creatinine level was the most consistent. A few years ago he was sent to a kidney specialist but was told he did not have kidney disease. He just switched his primary care physician due to relocation and this new doc told him point blank, "you have kidney disease" and sent him off to a nephrologist who confirmed.

He goes back to see him this month for results of the tests he had done.

What I find hard is getting the energy to rise to this occassion. I have been non-stop with some pretty stressful events in my life since January and just started to think it was over and I could finally breathe. Now this.

I KNOW I will rise to it, but I sure wish I didn't have to. Just ordering a cookbook was exhausting. Yuck. That sounded so selfish.

It's okay to think of yourself and how hubby's CKD will /does effect both of you.

What cookbook did you just order? I just got the one from the libray everyone on a kidney web page talks about. Titled: Coping with kidney Disease by M. Walser.

So far, I'm not sure (I don't know where to make major changes in eatting yet) about the few recipies in it. I'm still waiting for test results and don't have a treatment plan that requires much.

I had to stop my Celebrex to stop any more kidney loss and the goal is to keep my blood pressure under 120/80 by following a no more than 2 grams of salt per day. So I've done that.

But I've been researching kidney diseases like crazy on the web. How much is he helping with what he has to do for himself? Are you the one who has always done the cooking? Do you guys like to go out and eat a lot? that's one thing that isn't so easy unless you to to a more expensive place. Most of the cheap, fast food places are loaded with salt and who knows what all?

Do he understand all (and you too) the information about kidneys? Have you gone to kidneyschool.org? It is great to learn all about lab work results, and that stuff. I read all the little side button stuff too, they have real kidney patients tell of their experiences and I picked up lots of good encouragement from those.

At Stage 3 he is not going to need dialysis for a while, so that's good you got sent to a nephrologist!

Thanks for your reply and God bless, you will find the strength somehow.

Slow down there HeyGimm!

This is all just unfolding so you have about a month's worth of research up on me already! I'm just getting my feet wet but I'll be fully on board soon.

What cookbook did you just order?
*The cookbook was actually recommended in the Coping With Kidney Disease book on page 67.

How much is he helping with what he has to do for himself?
*He is helping by learning what it is he needs to do. He has always eaten pretty healthy with the exception of his sweet tooth, but even that has gotten better. He doesn't have high blood pressure and his weight is exactly where it should be so that is a huge plus.

Are you the one who has always done the cooking?
*Yes, I do the cooking. I'm careful about what I cook because of his high cholesterol. But now I have to count protein grams.

Do you guys like to go out and eat a lot?
*No, not a lot. He ordered Dining Out With Confidence: A Guide for Patients with Kidney Disease and Chronic Kidney Disease so he can have it with him for business lunches.

Do he understand all (and you too) the information about kidneys?
*Again, this is brand spanking new to us so I haven't learned ALL the info yet, but I'm working on it.

Have you gone to kidneyschool.org?
*No, I haven't, but I will now.

[Beholden]

Good for you guys. I haven't read the entire Coping with Kidney Disease yet, but will check out the cookbook. And for the eatting away from home book too. Thanks for that.

Sounds like I really put you through the 3rd degree, sorry, didn't mean to do that! I don't work, so I have way too much time on my hands. Therefore, I do my own "research".

Wishing you both well. If you want, keep me posted on how things are going.

[Beholden]

Good for you guys. I haven't read the entire Coping with Kidney Disease yet, but will check out the cookbook. And for the eatting away from home book too. Thanks for that.

Sounds like I really put you through the 3rd degree, sorry, didn't mean to do that! I don't work, so I have way too much time on my hands. Therefore, I do my own "research".

Wishing you both well. If you want, keep me posted PM if you perfer, on how things are going.

Sounds like I really put you through the 3rd degree, sorry, didn't mean to do that!

No problem! I appreciate the info AND the caring!

[kebsfroggy]

My son's father has kidneys that are failing. I'm not much up on all the where to and why for information. He has just started home dialysis. My laundry room has basic become a storage room with a month's supply of solution. One corner of my living room looks more like one of the cubicles at the hospital ER. No bed, but IV pole, chair table, heating pad, boxes of med. masks and some supplies.

Right now he perform exchanges every four to six hours except at night. It takes about half hour to complete the entire process.

He is also trying to be added to the kidney transplant listing. Because he had cancer twice in the past we just went through all the scan and mris necessary to prove he is cancer free.

Last week we spent almost an entire day having scan and testing to see if he is a viable candidate. We were interviewed by the transplant surgeon. They also drew 24 tubes of blood to be used for testing.

We still have to control potassium levels but now must also control phosphorus levels.

Afraid I can't tell you much more than that. I use to enjoy cooking and didn't have any trouble cutting the salt and sugar from my recipes. Now cooking is just to put something in the stomach. You have to count every thing.

No much help I'm afraid.

kebs

The frog of little brain is always helpful.

That sucks about the kidney transplant. I'm knockin' the hell out of wood in hopes we never get to that stage. Hubby is at Stage 3 and kidney failure is Stage 5 so hopefully we can get this whole thing figured out.

I was shopping today reading protein, cholesterol, trans fat, sugar, blah-blah-blah. It's just crazy. We're gonna eat rocks and sticks.

Are frog's considerd protein? They weren't listed in the cookbook.

[kebsfroggy]

Originally Posted by Orange_Blossom

The frog of little brain is always helpful.

That sucks about the kidney transplant. I'm knockin' the hell out of wood in hopes we never get to that stage. Hubby is at Stage 3 and kidney failure is Stage 5 so hopefully we can get this whole thing figured out.

I was shopping today reading protein, cholesterol, trans fat, sugar, blah-blah-blah. It's just crazy. We're gonna eat rocks and sticks.

Are frog's considerd protein? They weren't listed in the cookbook.

Well, I'm not surprised it happened. He wasn't controlling his diabetes like he should have. After 2 attacks of congestive heart failure that he barely survived, he began to consider his health.

However that combination of factors plus the chemo and radiation for the Cancer just screwed everything up. Not only is he diabetic but his body is not producing blood which isn't a good thing.

Dr. decided to prep him for home dialysis (insert tube into abdomen). So he walked around for a month or so with this tube sticking out of his belly.

After I got back from my mom's memorial service they decided he needed to start the dialysis. He went to a week of classes where they showed him how and what to do. He has to perform the procedure 4 times a day.

I still don't think he realizes how bad his symptoms are.

Besides the fact that frog legs do not taste like chicken, they probably have too much phosphorus. You will just have to make another selection form the menu

Guess I'm being selfish but who wants to cook.

Beef is high in phosphorus yet because of his blood count the Dr says he should have a steak once a week.

You can have chicken thighs but not chicken breast. Your tuna is ok if it is backed in water otherwise it is a no,no.

Then there is you can eat Atlantic Cod but not Pacific Cod. Can you see a frog walking up to the fish counter and saying to the fish "are you atlantic or pacific cod?"

Well the rocks might be ok but the sticks probably have too much phosphorus.

Ugh. You both are certainly dealing with a lot.

You said

I still don't think he realizes how bad his symptoms are.

And you? Are you wrapping your brain around all this?

[kebsfroggy]

((( OB )))

And you? Are you wrapping your brain around all this?

Nope, just one foot in front of the other.
Coping? Ask me in 6 months and I might have an answer.

kebs

[peaches100]

My husband was just told that there is something wrong with his kidneys, so he is being sent to a kidney specialist. The blood test showed he had a value of 1.9, where I guess 1 is normal and 2 means the kidneys are only 50% operational. Can somebody tell me how bad this is? If his kidneys are at 50%, can they improve back to normal, or once the damage is done, does it stay that way or get worse? I'm just nervous because my husband has alot of diseases and he says if it gets to the point where he needs dialysis, he's not going to take it -- he will choose to die. Can somebody tell me if he is at 1.9 now, how likely will he be to progress to the point of needing dialysis? Could it be months, years?? I'm worried.

peaches,

I'm kinda new to this myself so I don't have many answers, if any.

The nephrologist just told my husband that his kidney damage cannot be undone, but he thinks the progression of kidney disease can be slowed way down with proper diet and meds. He didn't say what kind.

I will be honest, I was scared and freaking out when we got the news, and hubby is still being tested for all kinds of stuff, but I'm feeling a little better about it. Waiting for more results before I panic again.

I might hook up with a nutritionist to help me get started. Dialysis would mean total kidney failure so my goal will be to slow it down.

[Beholden]

Frogs and sticks and rocks, OH MY!

[Beholden]

there is a site www.Davita.com that is set up like PC, and I learned a lot there about CKD. Also www.kidneyschool.com is a great learning site. I'd check out kidneyschool.com first as it will help you to understand the basics. Davita.com is a good place where people on the forums ask and answer each others questions. Plus of course, your doctors! The Davita site has a special thread for caregivers too, to help you cope with all the stuff other caregivers cope with.

Try not to overwhelm yourself. I did when I first got the news that I have CKD. I was diagnosis in July this year so I'm really new at this too.

The first thing to understand I think is the different stages, and what to expect at each one. Dialysis doesnt usually need to be done until the kidneys function at about only 10 to 7 % I think I remember. Doctors can't even really tell that your kidneys are failing until they are at 50%.

Nephrologists and their staff should answer all your questions. But it is up to you to find out what to ask. The best thing you can do is to be proactive in your own care. Since it is your spouse, if he isn't interested as much as you are in all of this, you "get to be" his advocate.

Take a deep breath, There is a lot to learn, but you can do it.

my problems are nothing like you guys but i have 3 kidneys ...all on the same side in a tangled mess. i get billions of infections, and stones because of this...which sucks.

i have to drink buckets of fluid each day...my dr laughs because she says i am her only patient who can self diagnose the difference between a stone and an infection for her....at the beginning stages. she monitors their status and i do take bp meds to ease their workload .

there is usually some pain and i find if i don't drink enough it hurts alot and i can get an infection pretty easily....and some meds really bother them alot.

never knew i had these until i went for some presurgical testing for gallbladder surgery. during the ultrasound the tech asked me who removed the right kidney (now mind you there is no scar) i had no idea what she was talking about so me being a smart *** said "aliens". she said seriously..where is it? i'm like i don;t know.

i mean who knows where their kidney is if you never have a problem with it...it's in the usual kidney spot..right? so then she checks the left side and she says "oh i found it...and then she calls the dr in and they say we found it and another....okay.

so now whenever i get any kind of testing done i have to tell them....best is when i am "chez bin" and they ask if you have any other medical conditions and i run down my list of things...aka the multitude and i tell them that...well it never fails they send the crazy lady for a scan just to see how crazy i really am.

[Beholden]

Hi Stumpy,

Wow, 3 kidneys, all on the same side. Now that is
all the above. Sorry it - they give you problems sometimes.

"chez bin", Heh, Heh, Heh I had to think about that for just a second, but that is funny. don't you just love the idea of it when you can tell them something they don't know about, and you know more than they do? I hope you don't get billed for telling the truth and they get stuck with the fees from the scan

[Beholden]

Hi Stumpy,

Wow, 3 kidneys, all on the same side. Now that is
all the above. Sorry though when they give you problems sometimes.

"chez bin", Heh, Heh, Heh I had to think about that for just a second, but that is funny.

Don't you just love the idea of it when you can tell them something they don't know about, and you know more than they do?

I hope you don't get billed for telling the truth and they get stuck with the fees from the scan

Take care.

"chez bin"...just think it adds a touch of class to the place!

funny thing is that my place is right on a river so actually is does have a really nice view...fancy mansions and stuff across the way and everything and for july 4 they hold fireworks and the best place to catch them is you guessed it chez bin!

the community across the way from the bin is home to such fancy schmancy folks as bruce springsteen, bon jovi etc....

trust me...my community is home to NO ONE fancy. you know those shows...the "real housewives of nyc & nj" who are all rich and such...well the "real housewives of my town " would be a collection of pretty scary women...dentally challenged, hair challenged and fashion challenged...and i say that because i stumpy would most likely be included...but we could i'm sure toss out some pretty good goosip and cat fights!

[Beholden]

Thanks for giving me a good laugh again today with your "chez bin"

I was just checking this thread to see what was new and I'd love to see the look on the doc's faces when they really do see 3 kidneys!