Frequent urination

[gotmoose]

I'm currently stage 3 with a GFR around 30. My question is for the last 1 1/2 - 2 years I have to urinate every 2 hours pretty much like clock work 24 hours a day. I have PKD. Is this a common thing with renal faliure/PKD? its realy getting old and wearing me out.

[Joe]

Not sure what to tell you gotmoose, I didn't experience that kind of frequency before my kidneys failed. But I can tell you, now I go about 3 times a day, and not much volume then.

[ps7910]

Depends on why your kidneys dont work some people pee others dont , frequent urination at night 'nocturia' is a symptom of ESRF and boy is it a pain. 5/6 times a night you start to wish they would just stop working completely, never had aproblem during the day though

[Cordelia]

I have PKD and that's exactly happened to me-the frequency became very annoying.....esp during the night.....about two years before full-blown renal failure. I was likely stage 3/4 and didn't know it. I ended up almost dying when I went into stage 5 renal failure and then I had about an hour and a half left to live before I made it to the ER. I really urge you to get yourself checked.

I remember getting up in the middle of the night, frequently, about 3-4 times.  It was a big pain in the butt!

I also leaked urine as well in between.

[gotmoose]

I see my nephrologist on a regular basis. My last GFR was 30 in January. My creatine was 1.75 . Im due for another renal panel in few weeks. I fell pretty good overall with the exception of tiring easy and not getting good sleep casue I'm up every 2 hrs in night.

[Cordelia]

I totally understand how you feel.  I'm glad you're being seen by a neph, that is really good.

Once I hit stage 5 I did not sleep at all, I was an insomniac.

[gotmoose]

Oh i hope I don't get that. Bad enough now trying to work 40 hrs a week at a physical job and get crappy sleep . I have no stamina anymore. not sure if its due to lack of decent sleep or my downhill side to complete renal failure. My mother who has PKD only recalls being tired. She received a transplant over 23 yrs ago and is going strong at 78 yrs old. She gives me my strength to deal with this nasty disease.

[Cordelia]

Oh i hope I don't get that. Bad enough now trying to work 40 hrs a week at a physical job and get crappy sleep . I have no stamina anymore. not sure if its due to lack of decent sleep or my downhill side to complete renal failure. My mother who has PKD only recalls being tired. She received a transplant over 23 yrs ago and is going strong at 78 yrs old. She gives me my strength to deal with this nasty disease.

I hope you don't either.  Insomnia is not fun. I was a complete mess. I also became so itchy from the toxins building in my blood.     

With the insomnia I was literally awake all night-a walking zombie. I'd try to go to sleep when the sun came up. IF I was lucky, I'd catch a few Zzzzzz's before my kids would wake by 7:30 am.

I hear you on the stamina. That's how I was  too. I tired very easily. I had quit my job about a year before cuz I tired so easily. 

I became pretty miserable. A real B*tch to live with so my husband reminds me       

That is wonderful your Mom received a transplant and is still going strong!          

How long have you known you've had PKD?     

I have no idea who I inherited mine from since I'm adopted since I do not know biological history.       

[gotmoose]

My mom had PKD when she was in her late teens, early 20's. So I had my self tested when i was in my early 20s. At that time the test was negative. So 30 yrs later when I had a MRI for a tumor I found in my abdomen, they discovered the cysts on my kidneys. I really had no symptom's other then i had started to notice the frequent urination which was becoming bothersome. So It was found buy accident. So I've know for about 1 1/2 yrs I inherited this dam disease. My grandmother died of PKD in the early 60's around the time dialysis machines where few and far between. Had a uncle who refused a transplant and lived on dialysis for over 20 yrs. So I'm not really a stranger to this but didn't think I'd be in this postion 30 yrs ago. BTW I'm 53. I have 3 other siblings and so far they have no symptoms. Only one was tested recently and she got a clean bill of heath as far as PKD. Hope and pray my kids don't inherit this disease. I do know i will probley go with hemo at a dialysis unit until I learn PD, that's is If i qualify for PD. Not sure on that since i had a hysterectomy and my omentium removed

[Joe]

Sounds like you are very familiar with all the aspects of PKD, and where you are likely going. I'm curious as to why you would 'go with hemodialysis until you learn PD'. If you think PD will work for you, I'd start out doing PD. It would keep you from having two catheters placed when you get going. Hope it's a long time before you have to decide though.

[gotmoose]

Thought I had to start with Hemo before PD. I was told when my GFR hits 20 then I havta see a surgeon for my fistula to be done and go see Transplant team where I would hope to receive a kidney and be put on the list. I do know I havta lose #15 before being eligble for list. hoepfuly I have some time to accomplish this. Last yr at this time my GFR was mid 30's. So It has dropped some. hope to have 1-2 yrs yet before dialysis if not more.

[malaka]

getting back to the original question, that's how it happened with me.  Uriination became more frequent, especially at night.  Look up "hyperfiltration AND CKD" on Google for a "Dr. Science" explanation.  Because your kidneys aren't efficient filters, they compensate by passing more.  Great, except you pee out albumin that way and thus it drops in the blood; and your GFR decreases as the bad stuff isn't
properly filtered out. 

I was up and going about 6 times per night before I started dialysis.  Given that dialysis dropped about 35 pounds off me in about 6 weeks, I was still retaining way too much fluid despite the urination. 

[gotmoose]

Malaka are you still on Dialysis and if so what kind. I'm curoius as to how you feel since then. Do you urinate now at all ? I retain alot of fluid now but i know most of it is due to my BP medecine I take. Cause I stopped it once and the swelling in my legs and feet disapear.

[Cordelia]

My mom had PKD when she was in her late teens, early 20's. So I had my self tested when i was in my early 20s. At that time the test was negative. So 30 yrs later when I had a MRI for a tumor I found in my abdomen, they discovered the cysts on my kidneys. I really had no symptom's other then i had started to notice the frequent urination which was becoming bothersome. So It was found buy accident. So I've know for about 1 1/2 yrs I inherited this dam disease. My grandmother died of PKD in the early 60's around the time dialysis machines where few and far between. Had a uncle who refused a transplant and lived on dialysis for over 20 yrs. So I'm not really a stranger to this but didn't think I'd be in this postion 30 yrs ago. BTW I'm 53. I have 3 other siblings and so far they have no symptoms. Only one was tested recently and she got a clean bill of heath as far as PKD. Hope and pray my kids don't inherit this disease. I do know i will probley go with hemo at a dialysis unit until I learn PD, that's is If i qualify for PD. Not sure on that since i had a hysterectomy and my omentium removed

I found out purely by fluke too. I had blood in my stool and got scared it was cancer. I then had an upper and lower GI series and guess what they found? My PKD cysts.  I will be 40 next month. They wouldn't do anything about it when I found out I had my disease when I was about 20.

My one twin daughter has inherited this disease. She is 13.  Her sister has no evidence of it at this time.  The docs are puzzled as they are identical twins.

Like you, I never imagined being in this position 20 years ago.   I understand what you are going through.

Unfortunately, my neph never mentioned dialysis. I had no concept of it.

You are very knowledged. That is great.

I am trying to educate my kids so they don't go through the h*ll I went through. Because coming as close as I did to dying, it was h*ll on earth the way I felt. I was a walking dead woman. I smelled of death and looked like death. It was insane. I wouldn't wish stage 5 renal failure on my worst enemy!

BTW, I was told I could do PD, but I chose not to do it.  I had 2 C-sections and a tubal litigation to boot.    However, they told me that IF I decided to do it, they wouldn't know for sure I could have  it until they surgically opened me up and looked inside. It has something to do with pre scar tissue and they don't know that for sure til they open you up. At least anyways, that's what my nurse told me.

I still pee. I found that once I started dialyzing, I was able to finally sleep through the night.   For the first few months I slept right through without even a visit to the bathroom during the night, it was great.  Now, almost 2 yrs on dialysis, I only get up once during the night to pee and I'm able to go back to sleep in pretty good time.   

[mcclane]

I'm currently stage 3 with a GFR around 30. My question is for the last 1 1/2 - 2 years I have to urinate every 2 hours pretty much like clock work 24 hours a day. I have PKD. Is this a common thing with renal faliure/PKD? its realy getting old and wearing me out.

based on personal experience, when my gfr sunk below 15, my nephrologist at that time said dialysis was the only solution (aside from transplant).  I told him that I see pee, he said 'yeah, you may still pee but you're not really peeing anything out' - I think he was referencing peeing out items like potassium, creatine, ...

Seeing how you're at 30, you maybe still peeing out some of the toxins but not all of it.

[Cordelia]

You're right, Mcclane. I was told the same thing. I was stunned when I went into renal failure and I was still peeing. It was greatly reduced by that time but I was still trickling a bit.

My neph told me even though I was peeing, that my kidneys weren't "flushing" out all the toxins properly.

What I'm peeing now is likely mostly water.

[malaka]

I usually get up one time per night the night when I've had dialysis that day, and maybe twice on "off" days.  I take Lasix as prescribed by nephro on my "off" days, too, which I am sure causes the nighttime trips.  I started dialysis in January, and so am doing in-center hemodialysis.  I got evaluated for PD, but since my serum albumin is too low, the doctor doing that evaluation said it was a second line therapy.  Apparently, PD also washes out more albumin than hemodialysis does.  At least that's what I understood from our conversation.  My plan is to train for in home dialysis, but since I'm moving in a month or so I wanted to wait rather than set up two homes with all that paraphenalia.  I was also somewhat leery of doing it at home initially not knowing how I'd react to dialysis.  Since they've had to increase my time on the needles by one half hour due to drops in blood pressure (once it was 78/37 standing up immediately after dialysis) I'm glad I chose what I chose. 

[mamagemini]

I don't have PKD but I get up every single night at least 2 times in a 6 hour period. During the day it is every 2-3 hours...all day. I have FSGS/Nephrotic syndrome. I hate getting up all night because it disrupts all night. Last June I started coughing all night for almost 10 months before they finally got me on an inhaler that will stop my coughing for the night....which now I have Asthma. So when I can take my inhaler my bp goes up, headaches abound but I can breath. But ya know...I don't want to complain because if I stop peeing then I am in bigger trouble than I am in now!
Good luck I hope you get some sleep.

[Jean]

I am also in stage # 4, GFR of 23 and I p what seems like constantly, and if I have to go, I had better do so, otherwise, I will have wet unders. It wasnt like that before I had kidney disease. I could at least hold it awhile. I also wake up abput 4 or 5 hours after I go to bed to get up and P, and then and during the day I really let out copious amounts of fluid.

[conchman]

Hey G-Mosse...

Ditto like others, me PKD also.  Like some of the others I am not sure if it is the PKD (Kidneys) or the growing list of meds that makes me go more.  Seems like I go all day, altough unlike some I seem to be able to mostly make it thru the night (usually 6 hours of uncomfortable sleep like resting)  For me I can't seem to find a comfortable position, jab in the right side, jab in the left side, seems like I do the hokey pokey all night.  Toss-Turn every hour or so.  (Then when I might find a temporary position, stupid dog runks around to make himself more comfortable...

[Cordelia]

Ugh, yup I get pain too.    I hate the jabs of pain in my flank, stomach and back from the enlarged cysts.           I want my native kidneys gone but because I pee while on dialysis, they won't remove them. I'm hoping once transplant takes place, they will or take them out soon after. That's my hope, anyways.    Like my picture says, "Polycystic Kidney Disease.....Blows!"       

[gotmoose]

I get the occasional pain in my back also . To the point that I take muscle relaxers to help me get threw my job at work. Ive also notice i tend to get chilled easy . Not sure of that's related to PKD or not but i never use to be this way till this year.

[Cordelia]

I found that once I got closer to the start of dialysis, I was cold all the time. Not even a blanket warmer helped and it was in the dead of summer that I went into renal failure. Mid August and I was cold all the time.  There was nothing I could do to try and help get warm.

[gotmoose]

My husband thinks I'm nuts using a electric blanket in summer especially when I have a fan blowing on me for when a hot flash hits me .  Ive heard dialysis units are kept cold. I'm not looking forward to that. Think I'll stuff my pockets with hand warmers

[conchman]

Not to be too awfully graphic, I was not in need of PJ's until last winter.  Now I need double blankets just sitting in my chair.  So, my wife and I have been able to swap blankets, now it seems she hardly ever needs them  (older age for her I guess, note I said older...not old! whew!, that was a close one... )

So yup, your not alone the the ice box department...