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Author Topic: Hi from Michigan II  (Read 3049 times)
malaka
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« on: May 12, 2011, 01:13:19 PM »
Membranous nephritis diagnosed in about March, 2009.  Started with increased urination, then it got foamy, then came the swelling of legs and face.  Saw internist, referred to Nephrologist who has been treating the nephrotic syndrome and DVT with drugs.  The underlying kidney disease hasn't responded to corticosteroids or cyclosporin, so I'm now on various bp medications.  GFR dropped from 60 at diagnosis (via biopsy) to 20 most recently, so my progression has been fairly quick although far from linear.  At nephro's suggestion, I'm seening another at a nearby University system but she's not Ms. Optimist.  Which is fair. 

What is a pain is that depending on level of kidney function, my drug dosing changes, including lasix, coumadin and Lipitor.  So I get into fights with insurance company which believes I must be abusing these drugs.  Yeah, right.  They are really recreational drugs.

Anyway, nobody knows when (or if) I'll be on dialysis, but I have a feeling its coming soon.  Found this site and read a lot of posts as other sites seem to be "cheer up, it could be worse" sites which are useless to me or ones repeatedly asking how long grandma will live with her CKD, CHF, cancer, etc. 

Nobody has a crystal ball, so all you can do is play the odds, I guess.
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willowtreewren
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My two beautifull granddaughters

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« Reply #1 on: May 12, 2011, 01:28:42 PM »
Hi, Malaka!  :waving;

Welcome to IHD!  :welcomesign;

You have come to a good place for information and support, tempered with realism!

I can't imagine why you wouldn't be using Coumadin lasix and Lipitor as recreational drugs!  :sarcasm;

 :rofl; :rofl;

I look forward to hearing more from you!

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
peleroja
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« Reply #2 on: May 12, 2011, 02:05:28 PM »
Welcome to the group, Malaka.  Lots of good information and friends here.  Glad you found us!  As for the when question, they usually start pushing to get ready for dialysis around 20% GFR, depending on how you feel.  The earlier you start, the faster the recovery from feeling lousy.  Good luck and keep us posted on how you're oing.
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HouseOfDialysis
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« Reply #3 on: May 12, 2011, 02:48:56 PM »
If you do get referred for dialysis, then I suggest getting both the fistula/peritoneal catheter surgeries at the same time. And try going the PD route first. It's easier on your body than in-center hemo from what I can tell and see. Besides, I'm just a control freak and prefer to do things myself.

And welcome!
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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
jbeany
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« Reply #4 on: May 12, 2011, 05:32:11 PM »
 :waving; from another Michigander!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.
YLGuy
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« Reply #5 on: May 12, 2011, 05:35:10 PM »
 :welcomesign; Welcome to IHD!
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galvo
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« Reply #6 on: May 13, 2011, 05:49:35 AM »
G'day, malaka and  :welcomesign;.  :ausflag;
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Galvo
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« Reply #7 on: May 13, 2011, 11:28:44 AM »
 :welcomesign; : Malaka. I'm from Michigan too. The Thumb area.
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looneytunes
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« Reply #8 on: May 13, 2011, 10:17:12 PM »
Hi Malaka.  Glad you joined us!    :welcomesign;
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"The key to being patient is having something to do in the meantime" AU
Rerun
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« Reply #9 on: May 16, 2011, 11:17:04 AM »
Hi Malaka, and welcome to IHD.  You are right, no one has a crystal ball.... it is more like you are on a rope swing and have to hang on for dear life!  Finally, you drop into the lake and have to sink or swim..     :waving;

Hope you do well.  Come here often to learn.

Rerun, Moderator       :welcomesign;
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lmunchkin
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« Reply #10 on: May 16, 2011, 03:58:29 PM »
Welcome!!!! Good to have you here even if its for a bad thing that has happened to you.  We are here for you!

lmunchkin   :flower;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
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« Reply #11 on: May 16, 2011, 07:04:42 PM »
Im from Michigan too, just recently moved out of Detroit!

Lisa
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
HouseOfDialysis
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« Reply #12 on: May 20, 2011, 01:16:50 PM »
313!!!
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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
mykey711
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« Reply #13 on: May 20, 2011, 09:17:42 PM »
Yo, 313
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I'm a 58 year old Family doctor with Alport's syndrome. I've been on PD for almost a year. I've been on transplant list since May 2010 at three centers, Michigan, Cleveland, and Indiana.  My brother has the same disease and is on his second transplant for about 12 years now.
Alisa
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« Reply #14 on: May 20, 2011, 11:10:07 PM »
Hi, sorry to hear about your situation, u are not alone.  If you have any pd questions fire away. Always here to help.
Alisa
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PD since 2005
Waiting for transplant
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