kidneys....what next?

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lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 11/28/2008 9:58 AM (GMT -7)   
Hi All - saw my rheumie with another bank of testing 3 weeks ago and got the results last week.  Nothing but ANA came back elevated or positive (outside of elev. HCT and RBC)  Sed rate was normal and the ANA was 1:640, which was lower than it has been. 
 
This is despite losing hair, and weight, feeling horribly tired and like a space "general" (rather than cadet) if you know what I mean - incr. cognitive probs.  She did another CBC because I was feeling worse in the 2 weeks since the initial round of testing.  Turned up high potassium (in a two week lapse from the first count) and I hadn't been eating any of the high potassium foods or taking any vites or meds that would contribute).  I was told to see my GP on Monday.
 
This morning I had "foam" in my pee (sorry tmi).  Does this sort of thing sound familiar to anyone with kidney problems?  I'm starting to get freaked out.  I don't have any other noticeable symptoms with the urine - no blood/burning.  Although I guess I did have some burning irritation in the area AFTER peeing for awhile yesterday....which I remember happening w/ flare-ups before and just figured it had more to do with dryness since it was afterward.   I've also been belching up a storm and have pain in my mid back.
 
Last week my rheumie referred me to Cleveland Clinic doc - possibly because I dissolved into tears? at nothing else showing up in the labwork.  She thinks there is definitely an AI process going on - but then also says someone with my labwork might have no symptoms whatever and feel fine.  I said, so apparently you think there are three or so AI disorders circling and you just don't know which one is going to land?  She said "that is correct".  She did decide to start me on Plaquenil - got the eye exam on monday so should be able to start that next week - but now this potassium thing.  Maybe diabetes?  Argghhh.   Sorry this is so long.  I've had several "meltdowns" and am finally somewhat coherent about it.  Something has to change soon....
 
Thanks if you're still reading....any thoughts?
Lucy  
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 11/28/2008 10:18 AM (GMT -7)   
Lucy,
 
What you describe is proteinuria which is a common condition with lupus.  It filters protein out of your blood and causes edema. 
 
I have the condition and gained 20lbs of water weight twice in just a few days.  See a nephrologist and he will probably want to do a kidney biopsy to determine the level of damage to your kidneys.  If caught early this is very treatable with an ace inhibitor like lisinopril.  You will also be given a diuretic.  There might also be a small amount of blood in the urine but most likely it will only show in lab tests and not be visible.
 
I had stage 2 damage ( there are 6 stages of kidney damage) but treatment has brought the condition completely under control the past 3 years and my kidneys function normally with no edema or further damage.  This is a serious condition but is easily treatable.  The biggest danger is not diagnosing and treating it.
 
My illness is MCTD which is lupus, scleroderma and polymyositis.  This is called an overlapping connetive tissue disease.  Those whose disease is less defined have what is called UCTD (undifferentiated connective tissue disease).  Treatment is pretty much the same as for lupus and there is no way to know if your symptoms will develop into something more defined or not.
 
My potassium levels are low so don't know what to say.  We all have unique blood chemistry and few are perfect models.  AI diseases and the meds often throw things out of kilter.
 
I know it is difficult but take things a day at a time.  Most of us have gone through diagnosis hell and the uncertainty that brings.  Cleveland Clinic has a great reputation but every individual case is unique and many, like mine, can be very challenging.  Of course, the first thing is that I am a man and definitely in a small minority for lupus.  Not quite so skewed for the other diseases.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 11/28/2008 1:23 PM (GMT -7)   

Thanks for the post, Bill.  I don't have any edema or swelling, though - I've actually lost weight.  My UA was normal 3 wks ago - as was the potassium - which went from 4.8 (then) to 5.4 one week ago.  I Imagine we'll repeat both of those on Monday.  Till then I'm just trying to steer clear of potassium rich foods and staying well hydrated. 

Lucy 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 11/28/2008 4:26 PM (GMT -7)   
Lucy,
 
Frothing/bubbly urine is a symptom of proteinuria.  When it gets worse you will get edema.  I had it for several months without knowing and then started to have edema problems.
 
Mention it to your doctor or better yet see a nephrologist.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 11/28/2008 6:52 PM (GMT -7)   

Bill - Thanks for clarifying.  I will definitely be seeing the doc and following up.  I appreciate your help!

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 11/28/2008 8:41 PM (GMT -7)   
Lucy,
I am end-stage renal failure, currently on dialysis. Bill is absolutely right. Usually frothy, bubbly urine means a person is spilling protein through their kidneys. It is usually controlled well with meds. I would make sure the u/a is repeated and if their is any amount of protein, see a nephrologist asap!!!! Most often your blood pressure will be elevated if you are spiling a significant amount of protein. There is usually no pain, burning, etc associated with the kidney problems that lupus/AI diseases bring on. That's one of the danger, it's usually symptomless until it's pretty bad! Take care of yourself and be your own advocate. Don't stress over those labs, girl. Most lupie's will tell you flares and labs don't usually coincide!!!! Love ya, Judy

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 11/28/2008 10:55 PM (GMT -7)   

Judy - Thanks so much for your post.  There is nothing like the voice of experience!  You and Bill  have both been extremely helpful.  It is so reassuring just to have people understand what you're talking about and where you're coming from.  I am going to make sure this gets checked and double checked!  So far my BP is okay and no swelling - and there has only been a small amount of "foam" - so maybe we can nip this in the bud.  I can certainly see how one could miss the signs for awhile.  If my potassium hadn't come back high, I probably wouldn't have paid too much attention to the other. 

Blessings to you!

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 11/29/2008 4:55 AM (GMT -7)   
This site is a blessing I was complaining to my GP about back pain two weeks ago and I thought it was my kidneys. He was sure it was from my MCTD flare. I had no idea about the foaming urine which I do have. I’ve also had a little blood and pain at first then tea coloured urine with foam. The last time I had this was last year they thought it was kidney stones, but couldn’t find any sign of stones even after a CT scan. At the time my CRP level 9.6 mg/l my understanding is that is very high. I was just going to wait it out thinking it was just another kidney infection. I guess I’ll go see the doc to check for protein and see about doing the CRP test again.
DX: IBS 00, MCTD 05, Depression 06, Sjogren's 07, GER 08  
Meds: Plaquenil 400mg, Prednisone 20mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg, Metoclop 10mg and numerous other supplements 
Life is what you make of it.  Just something I try to remind myself every day.

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