Another Kidney Question

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/10/2008 11:55 PM (GMT -7)   
While I am waiting for the one kidney specialist I can sees office to call back I wanted to ask anyone with knowledge of kidney issues about something.
I have blood tests for kidney function once a year and they are always normal. Since I learned I was pregnant I have had 2 24hr urine collections for creatine and protein clearance come back normal.

I have had spongy skin, dehydration problems (1 gallon minimum in the winter when not pregnant or dehydration sets in 2 gallons min when pregnant, hot weather or activity mean I need more fluids), I have huge water sacks around my ankles as well. This has been an issue since I was 16. Nurses and student doctors are always freaked by the level of fluid in my tissues but regular doctors look at my blood work and urine tests and blow it off. Often I have so much fluid in my tissues that with very very light pressure- like setting your hand gently on someone's arm for comfort- my husband has left a fully defined finger/thumb print where all ridges show up clearly that takes more than 20 minutes to go away on my rib area in the back. I have been given lasix off and on for several years because sometimes the fluid levels get to the point my blood pressure climbs. It has become less and less effective even with higher and higher doses. The first time I lost around 50lbs the first month on the lowest dose available (I recently checked my diary for the figures and this was even more than I had thought it was). My blood pressure returned to normal and the lasix was pulled. I regained the weight in 2 weeks. The blood pressure took nearly a year to become a problem again. Then next round I began on the same dose but it was less effective and so was upped. Now I am pregnant and they cannot give me lasix or any diuretic medication unless my life is in danger.

The question is given my lab results and my history/symptoms is it possible for the labs to be normal and a kidney problem still exist? I don't want to waste my time with the kidney specialist if they can do nothing for me.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 1/11/2008 1:33 AM (GMT -7)   
What you're experiencing is known as "pitting edema." This isn't always due to kidney disease. Given your history of lupus, have you ever had an echocardiogram of your heart? Do you ever feel shortness of breath or other cardiac symptoms?
Co-moderator - IBS Forum


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/11/2008 7:11 AM (GMT -7)   
I had a full cardiac screening- echo and nuclear stress test 2 years ago and all was well since this has been going on since well before that and all my EKG's and such have been fine since it doesn't seem likely to be my heart. I am just at a loss as to what the heck is wrong. It makes no sense to get dehydrated as easily as I do or to need so much in the way of fluids. Anyone else would be over hydrated. It just really makes me angry that it has been blown off for so many years when all my doctors admit a large part of my weight problem is water retention. They have all said some people just hold fluids, but with the dehydration becoming a large problem in the last few weeks- I can't seem to get enough fluids- and dehydration causing preterm contractions it seems like I need to find someone who will keep looking until they figure out what is wrong. I mean with all the fluids I take in it makes no sense I show signs of low level dehydration constantly- even when I have an IV they can't quite get my body enough fluids to fully hydrate me. I had 2 family members die from kidney issues related to lupus and both were completely untreated- doctors called them hypochondriacs for years- until it was too late to save them. Only when their kidneys were in the final stages of failure did the doctors diagnose the problem and no donor could be found in time for either. I have been terrified to explore this further for so long, I don't want to deal with kidney problems because the one person who could donate for me is my mother and she informed me that she has 2 kids who need her so she will not donate anything even if it means I die. My brother and sister are both over 18 so it has nothing to do with them. The only other possible matches would be my daughters and they are way too young and I worry that even if they were old enough there is a chance they could develop problems of their own later on. My oldest has some early signs she may have a problem later- she got mono really bad a few years ago how we have no clue but likely it was the school drinking fountain. My youngest was lucky and did not develop mono.

I just am running out of ideas on what to do about the fluid levels my body is demanding- it interferes with eating because my stomach is constantly full of water. Sorry to go on and on, I had to take a pain pill and my mind is not focused.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia


BlessedBe
Regular Member


Date Joined Dec 2007
Total Posts : 24
   Posted 1/11/2008 2:39 PM (GMT -7)   
Red,

Do you have a means of checking your blood pressure at home? Edema can be caused by a multitude of things and your Dr's apparent neglect of it seems more that they don't know where it is coming from rather than it not truly being a concern. Edema conists of fluid collecting in the 'interstitial' parts of the body (I.e. between muscle and skin) which explains why with so much fluid retention you are still so dehydrated, the fluid isn't hydrating organs, it is just collecting in failry unecessary spaces, I see that quite a bit in my patients. If you can keep track of your blood pressure three times daily to take to your next Dr's appt. Also, how long have you been on Enbrel? On Plaquenil?

Blessed
Wife, Mother, Nurse
SLE with all the additives, sjorgens, raynauds, RA etc.
Plaquenil, Effexor, serequel for sleep.
Refusing Steroids


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/11/2008 3:44 PM (GMT -7)   
I was diagnosed in 2005 and began medication then. It has varied slightly since then what I take. The water problem began back in 1993 so I doubt my meds are related. Well, except the prednisone but that only added 5lbs. I seem to have a set threshhold of how much fluid my body will hold because the level of water retained has been stable since 2001 outside of when I was on lasix or prednisone. I have a blood pressure cuff and am on 2 blood pressure meds but my blood pressure was normal until November. I began enbrel about a year ago, maybe a little longer. The plaquenil was started in 2005 around April. I am off celebrex so it isn't that. I am at a loss but it has become a serious problem now because I need to be hydrated. It makes no sense to me that I require so much fluid on a daily basis.

Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 5:39 PM (GMT -7)
There are a total of 2,732,776 posts in 301,054 threads.
View Active Threads


Who's Online
This forum has 151206 registered members. Please welcome our newest member, KrazyKorean5.
345 Guest(s), 13 Registered Member(s) are currently online.  Details
Bololidat, Ides, Michael_T, jennydancingfish, Lizzie70, mtm3461, Scaredy Cat, jared16, NiceCupOfTea, lymedriven, Broncofan18, NotQuiteAntonio, minnietoty


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer