My husband has CKD stage 1 and I have a few questions

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javamommy77
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 8/22/2010 1:54 AM (GMT -7)   
Hi everyone I have a couple of questions. I have known my husband for over a year (we got married in aoril this year and before that lived across the hall from one another) when i first met him he told me he had damaged kidneys and he was on disability for it but could not remember the name and just told me it was very rare.Last summer he had a couple of problems but his nephrologist told him his kidneys were holding his own
 
Well the reason he doesn't have much info is because basically his mom has always had a foot in his treatmen and she's a real piece of work(stolen money from him,lies, yeah she's not in our life anymorea) She had even told him not to get married or have kids because he was going to die. He is a very sweet trusting man. His mom and most other people in his life have always used him and lied to him and he's none the wiser. (mom always had him in special ed classes growing up even though he didn't need them he's very smart and she has used him as a way to get state aid)
 
anyways I've been sick with chronic pain since march and we moved in janruary so he hasn't seen a nephrologist since last summer. Finally he got ahole of his old dr about who he should see down here. Like I said he has always just said he has damaged kidneys and he couldnt remember the name of what he had. So I talked to the office staff and asked what his diagnoses is and he said it was chronic kidney disease stage 1
 
Well thats not as rare as I've been told by his mom. There is a lot of info also on it. he has had this for about 10 years and is on diablitly for it.The dr that diagnosed him put him immeadiatly on psych meds because he thought that my husband would get depressed when he found out what was going on.
 
So my main question is for those of you with CKD what is your lifestyle like? I've read a couple of posts and it seems so contradictory to the care he has recieved. I know some of you are on a bunch of meds whereas he is only on 10mg of Lisinaprell (sp?) he has been told that his righ kidney is so damages that one bad sneeze could burst it
 
he has a dr appt in 2 weeks with a new dr. i have a feeling that this dr may move him to the next stage as he has recently gained over 50 pounds, has had no energy, and been very moody. he wont tell me if he's in pain because he doesnt want to worry me with my problems but I can tell when he is
 
I wont be able to go with him because the appt is 45 minutes away and i can barely sit in the car for 10. So yeah I guess I need to know what he should shouldnt be eating, things that are good for him, things i should be looking out for you know general lifestyl questions.sorry for the typos but i'm typing in the dark lol
 
the dr told him he wouldnt even be alive 10 years but yet i see that ckd stage 1 can be very managable. what meds are you guys on? what is normal med wise to be on? Thank you so much if you read all of this and extra thanks if you took time to answer. I'll be in and out of this board
 
Wendy

javamommy77
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 8/22/2010 1:56 AM (GMT -7)   
oh yeah also sorry if this is tmi but is chronic diarhhea normal with ckd? he always has it. Also latley he has been throwing up a couple times a week. Like I said I think he's doing worst then he is letting on.

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 8/22/2010 6:38 AM (GMT -7)   
Hey There! Welcome to the kidney forum of healing well! Sorry your hubby is having so many problems but I want to thank you for going the extra mile and trying to learn about his disease. Is there another kidney issue that you might have forgotten to mention? I have never heard of stage 1 kidney disease giving you a 10 year life span. That is absolutly the most redicioulous thing i have heard in a long time. Also, kidney disease is very common and I know stage one is probably the most common one. Also for stage one kidney disease, disability is not an option unless there is another issue going on that we do not know about.

I am at stage 3 of chronic kidney disease. Mine is caused by lupus but I will say, i deffinatly still do not ahve a 10 yr life span. I am hoping for much more but one can never know for sure. I have been on many medicines to help control the issue. Including 40 mg of lisinopril. It would help to know what is causing his kidneys to not function as well as they should. I know the medicine i have been on would be different for someone with a different underlying issue. But I have been on Imuran, Cellcept, Cytoxan, and finally the one that is working is called cyclosporine. oh yeah, and lots and i mean lots of prednisone.

Do you know what is kidney funtion is (GFR?) What about is creatinine? If not, I would call the old doctor and get some lab copies from him. It is nice to be able to get a copy everyonce in awhile so you or hubby can personally keep track of how hey is doing. With me being at stage 3, i still do not have to limit anything. I have decided to limit my amount of red meat because I find I fell worse the more of it I eat. But other than that, unless I am retaining lots of fluid in my ankles, than I eat what I want, and I have been told to by my nephrologist. If I am retaining fluid in my ankles/feet/legs, I will limit the amount of salt I eat. I have been told when/if we get to stage 5, that is when my diet will need to change, but until then...enjoy my food!

What other questions do you have? If I missed one I am sorry, but gotta run to church!!! And no, chronic diarhha or vomiting is not normal with CKD. If it persists, I think it would be well worth going to your primary doctor about! Please keep us posted!!
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

If God brings you to it, he will get you through it!!

javamommy77
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 8/22/2010 8:24 AM (GMT -7)   
Thank you so much for taking time to reply. no when i asked his dr's office what he had the thing she told me was CKD stage 1 and when I said is that it? She got kind of mad i was like no not is that it but well is that the only thing(I think she thought I wasn't taking it seriously)

wow see this is what i thought what you have told me. The dr has also told him from the kidney disease that his right kidney was severly damaged and that he could never have dyalosis when he progresses because it might blow up his kidney.

yeh this was my concern it seems like EVERYONE and I mean EVERYONE has given him miscommunications in his life and always treated him like an idiot. Yeah he is on disability and has been told he cannot work maybe if he has to only 4 hours light duty(which does him not good)

Part of the reason he has to be so trusting is because he can't read(i told you his mom is a real peice of work and she never made sure he knew how and then made him drop out at age 14 to go to work to help pay bills)

I'm glad to know that vomitting and diarhea is not common. I guess when he was first diagnosed he had been put in the hospital for 3 weeks because the dr's didnt know what it was yet his mom said other famil members had it and well wouldnt you as a mom tell the dr that?

i'm so worried that the dr will find somethng else next week. I guess I'm worried because he chose a nephrologist out of town and if they put him in the hospital i WILL not be able to go visit him. between money being tight and my pain i can't do it. I'm praying this is a good dr that will notice anything else wrong with him, and for once tell him the truth!

Yeah I figured he'd be on prednason as well as more then just 10mg of lisinaprol. Thank you for the heads up and I will keep you posted!

IluvYOUgurl
New Member


Date Joined Oct 2010
Total Posts : 1
   Posted 10/26/2010 5:37 PM (GMT -7)   
My brother has CKD Stage 5,,KIDNEY FAILURE. I don't know much about it because I'm still a kid. He's 16 years old and he was diagnose when he was 4(I think). He's on a lot of meds and he's on a dyalasis machine every night. They removed his bad kidney about a year ago,,now we're getting ready for a transplant. He's gone through a lot and,,as his sister,, I feel really bad for him.

I was looking up CKD Stage 1 because,,for a science project,, I'm reasearching CKD and writing a report about it. I found your post and found it very interesting.

I hope everything has been going better.

LotsOfLove,,
Mickeyyy
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