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LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 10/19/2009 7:23 AM (GMT -7)   
Ok we need to have everyone chime in on whats going on.  yeah
 
Me first....
 
My condition with me kidneys is progressing along at a slow pace.  I've been at the point of needing new stents but I'm not even going to go to the urologist to have the placed.  I've talked it over with the Nepherologist but it would only cause discomfort and help pass some tissue.  I opted out of that one they hurt like heck.  Don't need anymore pain.  The cysts are multiplying the kidneys are like spounges now.  With the increase of cysts the pain is getting unbearable at times.  So my pain doctor increased my pain meds.  For the moments during the month when the cysts break and then it hurts moore than normal.
 
Ok enough about me everyone else needs to put in their updates.
 
Laurie


Kidney Diseases and Disorders
              Moderator
 
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........


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 10/19/2009 5:12 PM (GMT -7)   
I am dealing more with my Crohn's than PKD right now. I tried to take new meds, it is acutally an organ anti rejection med, and became ill with flu like symptoms and swollen glands. My primary doc said she wasn't sure if it was from the new meds or if I had a virus so I stopped taking the Aza and now I am taking Cipro for a couple weeks and then going to try again next Monday. I am also reducing my prednisone 5 mg a week to see how I tolerate it.

I also have to have hernia repair surgery, but I am going to try to told off until the summer when I am on break.

I am really nervous right now because I am on these drugs to suppress my immune system and just today there was a case of h1N1 in the classroom beside mine. We sent 4 kids home today with fevers so I know there will be more confirmed cases. Please say a prayer for these kids.

Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, Imuran, Folic acid, and Enalapril.
 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 10/20/2009 6:43 AM (GMT -7)   
Elizabeth,

My mother had two hernia surgeries. She didn't seem to like them much. I had totally forgot you were a teacher! Wow with your immune system being suppressed and teaching. I wish you all the luck on staying clear away from the H1N1.

Laurie
Kidney Diseases and Disorders
              Moderator
 
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........


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 10/23/2009 6:48 PM (GMT -7)   
Hi Girls,
 
Sorry I haven't posted in awhile; I've been extremely busy at school and have been going through a very rough time with issues involving my sick time at school.  My stent has been quite bothersome; my dr and I talk weekly and he changes my spasm meds and dose to see if it helps but so far it hasn't.  I'm probably going to have it removed and have a new one put in called a tail stent.  This one is larger at the top and tapers at the bottom so it might not cause the bladder spasms.
 
Elizabeth-You and your students are in my prayers.  I too have students in my classroom who were sent home this week with high fevers.  We have some confirmed cases of the H1N1 virus, this is very scary for me as I do not have a spleen and tend to pick up illnesses very easily.
 
Laurie-I hope and pray that you can put off having stents put in, I know how much you dislike them. Praying that your pain will ease.
 
Take care,
 
Judy 
 
 
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/bunion & 2 neuroma surgeries/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/ c difficile/many kidney surgeries 5/09 through next summer
 
There's AWAYS HOPE, there's a doctor out there that WILL help you and things WILL get better :):):):):)


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 10/30/2009 1:12 PM (GMT -7)   
Hey everyone!!! Sorry, I have been away for a bit...trying to get my life figured out but guess what...NO LUCK. haha. Things with me are the same. Kidney function stays 25-35 % so I guess its good that its not falling below that. My docs are at a loss of what to do so they are contacting doctors who are more experience with lupus nephritis and seeing if they have any other suggestions they can try. I am still 60 mg of pred, with IV's of it once a month when I get my cytoxan and supprisingly no weight gain. Kind of shocking since I have been on the increase dose of pred since beginning of Sep...My hair has fallen out from the cytoxan but I have had a lot of fun buying wigs and head coverings. So far I have bought 3 wigs and I am looking at getting 2 or 3 more...you know one for almost every day! One is shoulder length and brown, another is red shortish medium and CUTE, and my third one is reddish,browish, blonde pixie cut.
 
I hear all of ya on the H1N1, my sister who i live with is a school teacher and she has had most of her class out due to the H1N1. I sure hope none of yall have gotten it.
 
I hope everyone is doing ok and its good to hea from ya :)!

Amy

 

Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril, hydrochlorothiazide, Midrin, Ambien, Flexeril, Ultram, 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...

 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 11/1/2009 1:38 PM (GMT -7)   
Hi!  I haven't been around alot lately either.  My kidneys are continuing to improve.  I have been off of dialysis for 7 months!! YAY!!  I continue to be on immunosuppresssive meds, prednisone/cellcept and I survived the flu and bronchitis recently!  I know how it is to be in the school system, I was a school nurse!!!  You guys be careful!  Amy-  you continue to be in my thoughts and prayers!!!  Hang in there girl.  I've been right where you are now!  God bless each of you!  Judy
 
p.s-  I have blood work MOn and see my nephrologist on Wed!!!
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