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couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/30/2011 6:57 PM (GMT -6)   
Okay, last week I had my bloodwork and urinalysis. The doctor called yesterday saying there was blood in the urine and to do a re-test. I hurry up to the lab and got it done today.
It looked very dark to me. shakehead
My mother has stage 4 kidney disease and my brother has end stage.
I've been researching (bad idea!) and basically freaking out! smhair
 
I've got to wait a week for the results and try not to chew my nails off during the wait. shocked
Joy

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 12/30/2011 9:00 PM (GMT -6)   
Stop RESEARCHING the internet. It is your biggest enemy. Trust me. I did the same thing when I was first diagnosed with lupus and caused anxiety issues and lots of fear. I am currently on dialysis and my nurses and doctor told me never to freak out or panic. The only time I can panic and freak is when they panic and freak. Which doesnt happen unless there is something to worry about.


When will you get blood work back for your most recent labs?
Amy
Lupus Moderater


dialysis from lupus nephritis

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/30/2011 9:31 PM (GMT -6)   
I have to call the nurse and have it mailed to me, if she'll send them to me that way. It's impossible for me to get the papers personally since I work 6:30am until 5pm during the week.
My boss frowns on me leaving early unless very sick or doctor's appointment. I have to leave at 3pm to drive the hour to go to the closest office. Also he's only there on Wednesdays and Thursdays. His main office is two hours away.
Plus, I won't be able to talk to anyone until Tuesday because of the holidays.
What makes me mad is the lab is private, but won't give me the results personally. They tell me I have to get it from the doctor.

I know not to search the web, but I have a morbid curiousity. :(
Joy

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 12/30/2011 10:38 PM (GMT -6)   
The main numbers you need to know is your creatinine, BUN, albumin, and if you are leaking any protein and how much blood. Your nurse should be able to tell you those results over the phone!!!!
Amy
Lupus Moderater


dialysis from lupus nephritis

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/31/2011 1:49 PM (GMT -6)   
I'll call her on Tuesday and ask for them.

Thanks
Joy

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 1/1/2012 12:11 AM (GMT -6)   
Joy,
 
Blood in the urine is most often from a condition called proteinuria which is common in lupus.  It can often be easily controlled with an ace inhibitor.  I had it 6 years ago and meds took care of it and my kidneys are fine.  Will have to take meds forever but everything is working properly and no apparent permanent damage.
 
Bill

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/1/2012 6:19 PM (GMT -6)   
I wish there was a local Lupus Support Group that I could meet with personally. I know only one person with Lupus and she's a co-worker. She's had it for 20 plus years and seems reluctant to talk about what she goes through. All I know is she's been in the hospital a few times and her doctor's got her on a gluten free diet. She keeps telling me to go gluten free and drink the special protein/vitamin drink he gave her. She's always boasting how great she's feeling since he stopped her medicines.
I get bits and pieces of information from her about Lupus.
Joy

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 1/1/2012 7:13 PM (GMT -6)   
Joy,
 
If your friend is gluten intolerant or has celiac disease a gluten free diet is necessary.  Otherwise, it has nothing to do with lupus. You can get tested for gluten intolerance.  Some people do feel better eliminating gluten but most people tolerate it just fine as humans have for 10,000 years.
 
As for a protein/vitamin drink reversing her lupus symptoms, I doubt it.  There is no credible research anywhere that supports that.  Maybe she has other nutritional problems that has addressed which accounts for her feeling better.
 
There are many resources about lupus on the web.  www.lupus.org is one of the best.
 
Bill

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/1/2012 8:15 PM (GMT -6)   
I wondered about her having something extra wrong with her.
I've read every article on Lupus.org there is plus other web pages from Mayo and John Hopkins.
My main complaints are constant pain of some level in every joint and getting tired quickly.
Most of the time I can tolerate the pain that the pain killers don't get, but it does have a tendency to wear on me and make me grumpy.
Joy

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 1/1/2012 9:26 PM (GMT -6)   
Those are almost universal symptoms of lupus and are not going to be addressed by eating gluten free or taking supplements.  Treatment is needed to suppress your immune system and that is usally plaquinel for mild cases and prednisone (followed by immunosuppressants) for more severe ones.  Some will be treated with 2nd or 3rd line treatments if the standard protocols don't work.
 
Bill

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/3/2012 5:02 PM (GMT -6)   
Okay, got a call back from the nurse on the last urine test...
No blood in urine yeah
 
But there was bacteria this time shocked
I'm hoping it was just an accidental contamination.
 
They are mailing me both reports.
Joy

BEW_thatwasfast
Regular Member


Date Joined Sep 2011
Total Posts : 51
   Posted 1/4/2012 9:19 AM (GMT -6)   
That's good that there's no blood in the urine! Yay for good news! tongue
 
Was the bacteria like a UTI or something?
 
Also, I get the impression from your posts that your employer is not very understanding about sick time / doctors appointments.  That is not cool, especially since you work 10.5 hr days!
 
Your co-worker sounds a little out there.  I'd stick to relying on the forum instead of anything she told you.  If a protein shake could cure lupus, I'm sure none of us would still be sick.  I'm doing great on the cellcept and am almost completely pain free, and my kidneys are doing much better.
 
Hugs,
Brandi
dx: SLE 07/2011, OCD 2006, osteoarthritis 2002
rx: CellCept 2,000mg/day, NSAID for pain, zoloft 200 mg

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/4/2012 5:43 PM (GMT -6)   
I haven't had any UTI in two months. So I'm not sure about it being UTI.

I only work four days a week. I'm an elementary teacher in a very poor county. They don't have the budget for subs except in extreme cases. My para-pro has to cover for me and he doesn't like her to do it often. I'm allowed 5 sick days a year. Going to the doctor takes a half day and I have 6 of them. Lord, help if I become sick longer than three days.
Joy
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