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

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/17/2009 2:47 PM (GMT -7)   
I'm so thrilled they set this kidney forum up.  Now we all just have to get to know each other.
 
My name in Laurie I live in TN.  My signature has all my conditions but my kidneys are the ones I have to get poked and proded for.
 
I've been married for 18 yrs to a wonderful man and we have 3 teenagers.
 
My condition has caused chronic pain and has changed my life. (PKD)  As I have found out from the chronic pain forum is that the Old Normal is no more so I and we have to find a New Normal. 
 
Ok I'm introduced now....
 
Laurie
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/17/2009 4:36 PM (GMT -7)   
This is so exciting!!! My name is Amy and I live in Charlotte... I have had kidney problems due to Lupus since January...The treatment for this has caused me more physical problems than the disease itself. I am at Stage 3...prognosis is hopefully good!  I am currently working in accounting and going to school to become a medical assistant! I look forward to getting to know more of you!!!

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/17/2009 6:11 PM (GMT -7)   
aimsgirl16

How did your lupus effect your kidneys? I'm not up on my lupus information... What is the treatment you are on?

Laurie
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/18/2009 4:53 AM (GMT -7)   
Hey Laurie...In January I had a acute renal failure. They did a biopsy and it came back stage 3 pushing stage 4 lupus nephritis. So I know my kidney funtction was really bad at the time, and they put me on 1000mg of solu-medrol through IV for 3 days. Then had me oraly taking pred at 80 mg! Prednisone is what is gonna get rid of me in the long run but its keeping me alive for now. I still ahve protein leaking and usually have 70-120 red blood cells in my urine. Go to the Kidney doc usually every 4 weeks and get my labs checked every 2. I guess the meds I am on now is 2000mg of cellcept, 40 mg of lisinopril, 15-30 mg of pred, ferrous sulfade 650 mg and then some other drugs to help with pain and sleep. I probably forgot a few of them...The cellcept is ok, causes me to be the bathroom a lot and I am always sick. This is somethign I have to get used to...as a kid, I got sick about once every 18 months. So yeah, i was nver sick. So it really puzzled me in 07 when everything started happening and then came the L word diagnosis....
LLPLUV said...
(As I have found out from the chronic pain forum is that the Old Normal is no more so I and we have to find a New Normal.  )
I really like this saying...Have you had any luck finding the new normal? I can't seem to stop dwelling in the old normal even though I know it will never be again!  You have any advice on how to accomplish this? Do you mind if I put this in my signature??? How do they treat your kidney problems? Are you on pred?

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/18/2009 10:05 AM (GMT -7)   
Amy,
That is a lot of meds for one person. And to think I complain when I have to take high doses of predisoine. You are a real trooper.

Glad to meet you,
Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/18/2009 3:48 PM (GMT -7)   
AMY WOWOWOWOWOWOW
 
I thought my kidneys were bad.  I have very slight renal failure it comes and goes?  They call it acute I still haven't addressed that part yet I'm pretty ignorant on that part.  I found out that about 3 months ago.  I also have blood and protien in my urine I think that is just the way its always going to be with us.
 
I take lisinopril, lasix, potasssium, celexa, biostolic, hydralazine, trazadone, klonopin, robaxion, ryzolt (tramadol er), percocet, ditropan, peusdo and a few others I might of missed.  So far not to much for the kidneys.  My kidneys are just causing alot of pain.  The cysts will break or get blood in them.  The nerve damage has caused a real big mess in my life.
 
Yes you can use the statement on your signature its alot of peoples saying..lol  Cuz its so true.
 
You asked if I have found my new normal yet?  Not really.  My husband just recently changed our vacation plans to florida due to the heat he thinks I wouldn't enjoy myself.  I didn't really like that choice he made.  I still have a hard time letting go of the things I used to be able to do and take for granted.  Even mowing the lawn that I can't do any longer.  I do have a positive outlook on life.  I'm blessed with a wonderful family who is going with the flow on the changes.
 
My daughter is doing a bunch of fundraisers for PKD so that she can give them a huge donation in September on the PKD walk.  Shes 16 and doing everything from her heart for all of us.  So that make me proud which part of the new normal.  I don't have much advice on that one but whenever you need to vent or talk about what your new normal might be just holler at me..lol
 
Right now they are not really treating my kidney's.  Its wait and see method.  Just check the scans every 3 months for changes and take all my meds.  I will start to research more and see what other things I can do for them.
 
Ok I've babbled long enough..lol
 
Laurie
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/18/2009 4:08 PM (GMT -7)   
JEEPERS!!!! Laurie, that is a ton a meds! and I complain about mine....def makes me think how much more it can be. I completly understand what you mean about mowing the lawn, used to be one of my favorite things to do and now because of joint and muscle problems that is no more. Also basketball, heck...even spending time with my friends. I am being pretty stupid right now and working full time and school full time so my days are usually mon-thurs work at 8 off at 5 school at 5:30-10:30...get home around 11-11:30 and go straight to bed! And then i ask myself why I am in a flare that is never ending...I just really want to graduate and be in the field I want to work in, in case something happens down the road and I can't do it anymore. After that, i will try to find my new normal...I know you have to be so proud of your daughter, that is great that a 16 year old is working so hard on that! That is a sign you must be a great momma :)!
 
Hey Elizabeth! You want to share anything about yourself? I don't really know anything. Might be my fault for not reading all of the posts yet bUT i plan on doing it this weekend. I manage to sneak on the computer everyonce in awhile at work or class and get to see how everyone is doing!
 
I know there are more of you guys out there...please introduce yourself, I look forward to meeting ya all smilewinkgrin

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/18/2009 5:06 PM (GMT -7)   
turn  I LOVE THE SIGNATURE turn
 
Wow you are one busy girl!!!!  Its good to stay busy.  At work when time flies I don't stop and worry about the pain as much.
 
Isn't it strange how chores seem so wonderful when we can't enjoy them without pain any longer.
 
You are so young.  It hurts my heart to think of you feeling so much pain at such a young age.  How do you maintain school and work?  Don't you ever just come home sit down and just want to fall apart?
 
Elizabeth shes right tell us more about yourself.  Doesn't have to be about your health issues let us get to know you.
 
Laurie
 
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 6/19/2009 12:33 AM (GMT -7)   

Hi my name is Judy I'm 46, have been married to a fantastic man for 7 years, we have two daughters ages 20 & 22...he is more than a father to them :-) . I am usually on the ostomies forum as I had a subtotal colectomy last year but was very excited when this forum opened up. 

I have chronic kidney stonesand right now have been having an ongoing  episode with them since February but after 5 different drs over the years I think we have finally hit the jackpot yeah !

Looking forward to meeting more of you!


 
 
Judy
 
spleen/appendix/gall bladder  removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08-
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/19/2009 12:53 PM (GMT -7)   
What a super nice group of people you all are. I am in my mid forties and have been married to my husband for 21 years. We have two beautiful daughters. One is a sophomore in high school and my oldest is a sophomore in college. Makes it easy to remember what grade level they are in. This is my 21st year teaching in a small private elementary school and I love it.

I have had to deal with severe migraines, Crohn's disease, sinus/allergy problems and then diagnosised with PKD. I am very lucky with the PKD. I have a lot of flank pain, and high blood pressure but my disease isn't progressing quickly. I get kidney stones but so far they aren't super painful. I had a foot of my colon removed so the docs said I am prone to producing stones, but luckily they are super small I guess. My biggest heart break is that my oldest daughter also has PKD and her disease has progressed more quickly than mine. She has been on meds for 8 years now but right now her kidney function is pretty good. I try not to talk about my health to my family and friends because I don't want to be known as the "sick chick" so this forum is a great outlet for me. It also allows me to ask the questions that are always in the back of my mind. Thanks for chatting!!

Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 11:17 PM (GMT -7)
There are a total of 2,736,222 posts in 301,362 threads.
View Active Threads


Who's Online
This forum has 151452 registered members. Please welcome our newest member, sarajseri.
204 Guest(s), 4 Registered Member(s) are currently online.  Details
bluelyme, geop, Girlie, jrpsf


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