Kidney disease

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texasrose
New Member


Date Joined Dec 2007
Total Posts : 14
   Posted 1/3/2008 8:56 PM (GMT -7)   
I'm new to HealingWell. I've recently been diagnosis with Kidney disease stage 2 and 3. I have Lupus SLE. Any feedback regarding experience of having kidney issues would be appreciated. Thanks!

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 1/3/2008 10:15 PM (GMT -7)   
I have mctd (lupus, scleroderma and polymyositis) and had stage 2 kidney disease.  The diagnosis was proteinuria and I ballooned up 2 times with 15 lbs due to edema in just a few days.  The nephrologist treated me with lisinopril and got things in line within a few months.  My kidneys function totally normally and I still take a low dose to make sure they continue to function properly.  I was lucky that my doctors were so observant and aggressive.  No problems today.
 
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
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/4/2008 7:57 AM (GMT -7)   
Hi texasrose,

Sorry you are having such severe problems. There are several here with kidney issues . . . hopefully they will see your post and comment.

I just wanted to welcome you to the forum.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 1/4/2008 4:52 PM (GMT -7)   
Welcome to the forum. I have end stage kidney disease secondary to Lupus. What are the plans for your treatments? Are you taking any meds? I would be happy to answer any questions I can. God Bless yOU, judy

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/4/2008 5:50 PM (GMT -7)   
texasrose, I also wanted to welcome you - we have a great group of people who are very supportive. I'm really sorry to hear about your kidney problems. I had some very mild kidney issues for a little while, but they resolved. We do have people here who have kidney disease and even some who have had transplants. Please ask any questions you have.

Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 1/4/2008 6:59 PM (GMT -7)   
hi texasrose,
i would one of the ones with kidney problems and i am also one of the ones that had a kidney transplant. when i was diagnosed in 1995 (then 13 yrs old) they did a biopsy and found me in late stage 3 very close to stage 4, but my pediactric nephrologist was very agressive with my disease and he was able to keep me from ESRD. in the first couple of years after i was diagnosed i flared up 2 twice before i graduated high school. i almost had to have a transplant in '98 and i was also on dialysis, but for some unknown reason my kidneys started working again and i didnt need the transplant. from '99-'03 i was in remission and it was great. i was taking maintance dosages of prednisone and i was also taking plaquenil for the lupus and every was going great until the fall of '03 i went into a flare and my kidneys never recovered so in the spring of '06 i ended up having a kidney transplant (my dad was my donor) and i actually just flared in march of '07. so for me it has been a long, hard, bumpy road but i'm still here fighting. i actually have avascular necrosis from the prednisone and they are talking about knee and ankle replacements and core decompression for my hips. i know all this probably sounds really bad but unforunately this was and still is my experience with my lupus nephritis. this last flare was really bad though because the docs said that it was possible with the new kidney that i wouldnt flare anymore but apparently i am in the 10% of transplant patients where they actually still flare after the surgery, but i have my support system and i am seeing a pyschologist who is helping me cope with my emotions and the docs put me on anti-depression meds, but remember no one person with lupus is the same. you may or may not have the complete opposite experience that i have. good luck we're here if you need us. and welcome to the forum you will find some wonderful people here, i know i have, i dont know what i would have done if i didnt find this site, i actually wish i found it when i was younger and so confused and feeling so alone with my disease.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 1/4/2008 7:47 PM (GMT -7)   
My prayers to you texasrose, judy, Bill, and Suzanne! I have some strange kidney issues also but not as serious as you describe. My issues seem to resolve on their own, for now and, hopefully, always. From what I am learning on this site, based on the experiences everyone shares, it seems key to make sure you have an aggressive medical team (rhuemy, kidney specialist, family doc, etc.) when dealing with the strangeness of lupus. Never give up. Stay strong!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


texasrose
New Member


Date Joined Dec 2007
Total Posts : 14
   Posted 1/5/2008 2:42 PM (GMT -7)   
Thank you all for your response and sharing.  I heard this one  and it hasn't left me probably because it easy to remember and it is simple. "stand up, look up and never give up". Although as well all know sometimes it's easier to say than do. God Bless you all. I can tell this is a great group of people.

I'm A Survivor
New Member


Date Joined Jan 2008
Total Posts : 5
   Posted 1/12/2008 6:30 PM (GMT -7)   

Hey texasrose,

I am 23yrs. old and I have Autoimmune Liver failure and Chronic Kidney Disease stage 3. I go to a Kidney specialist twice a week and I take alot of Diuretics(I guess that's how you spell it). I was scared I have been living with this for 1yr and still I am scared. I am not to the point where I need a kidney transplant yet but I do need a liver transplant. But the main thing to this CKD and Liver disease is you must tell the Dr. of any new changes and build a bond with them, take all your meds and you can respond ask me anything I will tell you about this as much as I know. Surround yourself around positive people take it on day at a time.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/12/2008 7:21 PM (GMT -7)   
Welcome to the forum Survivor!!! Wow you are dealing with a lot of health issues. I'm sorry you are so young and dealing with SO much.

Do you have lupus too??? My s-i-l has autoimmune liver disease and is doing very poorly . . . the domino affect of the high dose steroids and her resulting diabetes, osteoporosis and very thin skin is just killing her. She's also got some lung issues which have not been properly dx'd yet. I hope you'll post a new topic on the Lupus forum and introduce yourself. Your post will get lost in here and members won't get to say hello.

Thanks for your encouragement to Texasrose . . . . I just love this forum for all the helpful members!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/12/2008 10:07 PM (GMT -7)   

Hi Texas rose, welcome to the forum! you will meet some great people here. I am sorrry you have been having kidney problems. I can't actually say that have them. Several months ago they said I had a Mass in my  right kidney. after several tests they relized it was cyst that I have had for a long time. It just sometimes gets bigger and causes pain. They said there was no point in draining it because it would come back so fortunately I I have more pain free days than bad days. I have to take diureetics daily to keep fluids down. I hope your doctors are able to get a handle on this for you and that you wiol get some good info from the people here. It seems you already have. Just please know that you are not alone anymore we share each others others pains  and strengths. Please keep posting ann let us get to know you better

God bless

carol


God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3,Singular,nitro spray, aciphex, diovan. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 

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