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pamster42000
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« Reply #25 on: January 08, 2010, 03:45:40 AM »

You are having all the signs of poor kidney function:
anemic
bone pain
edema
shortness of breathe
itching
GFR 13%
You are in a danger zone right now, go to the ER as soon as possible. Please don't wait!!
Find a different Dr. that cares about your wellbeing. Your life is too important to leave it in this Dr's care....she is dangerous.
Your blood pressure was 69/49???? I would think right there your Dr. would have been concerned.
« Last Edit: January 08, 2010, 04:04:08 AM by pamster42000 » Logged
jennyc
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First day of school 08'

« Reply #26 on: January 08, 2010, 05:35:23 AM »

I had an AV fistula surgery 2 months ago and my surgeon says it's ready.It is still very painful though but I think I may be sleeping on it. I toss and turn.

Mine is getting sore now when i'm overloaded..... there is too much fluid going through at once that the fistula isn't used too... well that's what i'm assuming since it stops hurting as soon as i take the fluid off.

Push for D.... if your at 13% and feeling that horrid you should start. It is your choice, not the DR's
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2003 January - acute renal failure
        March/April - Started PD
2009 October - PD failing, First fistula put in.

Cadaveric Transplant 27/1/2010
billybags
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« Reply #27 on: January 08, 2010, 08:19:12 AM »

hI zona, Please listen to these people, you need to get some help soon. Do not feel any infinity with a doctor that does not listen to you. You have to question these people, you have to trust that they have your best interests at heart if not change them, it is your life.
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tyefly
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This will be me...... Next spring.... I earned it.

« Reply #28 on: January 08, 2010, 10:28:03 AM »

 Zona      I went thru the same..... I started when I was around 14......  about three months ago...feeling bad like you ....  some days the pain in the body , bones, skin just everything was so bad.... just taking a BP hurt so bad....  funny how the nerves are affected by the toxins.....  I believe you are ready....   If your fistula is ready  go for it....   After just a couple of D treatments   I felt really good.....   had some problems with my fistula at first  but it was a baby fistula and its gets better the more you use it.....   Now   I  look forward to my treatments at D.....   I dont like D and the needles   but   I feel so good now.... I cant beleive how badly I felt before D.....   I feel 10 years younger.....  I just cant tell you how good You will probably feel after a few treatements ......I am very glad I have started D......   So go ahead  why continue to feel bad   get started with D  and  that way you will start feeling good sooner.......

kathy
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
kristina
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« Reply #29 on: January 08, 2010, 01:20:12 PM »


I am sorry you are in so much pain
and I do hope you receive medical help soon.
Good luck and kind regards from Kristina.  :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cdwbrooklyn
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« Reply #30 on: January 13, 2010, 12:53:23 PM »

Hello Zena,

Sorry to hear about your pain.  Although it’s hard to change doctors, your health comes first.   If this doctor is not sensitive to your needs, than it’s a waste of time dealing with her.   You can still stay on the transplant list with a new doctor.  Just give the transplant people the new information.  If she does not respond to your pain and concerns, what makes you think you will be successful with a transplant involving her?  As I heard, doctors have to keep giving you meds to see what type of meds works best with your transplant.  If this doctor does not respond to what’s happening to you now, what makes you think she will respond with the transplant.  It may fail because of her lack of interest to see it work.  She is showing you her personality which probably will not change after receiving your transplant. I would recommend you seek another doctor before getting that transplant if you want it to last. She apparently doesn’t care what happens to you.   GET ANOTHER DOCTOR!!!   Sorry, but doctors like her pisses me off, :Kit n Stik; [color=]“idiot”[/color] (referring to the doctor)!!!  You will not be happy until you do. 

Also, you should start dialysis while you are healthy because you will do better with the transplant.   It takes a while for you to receive a transplant unless you have a donor.  So you want to be as healthy as possible.   Not sure why the doctor did not recommend dialysis before sending you for a transplant evaluation. :urcrazy;  Most doctors would have put you on dialysis first before evaluation.   
Also, another thing, sometimes your meds can cause your body to retain water.   Since you are not on dialysis maybe you can get some water pills.  The pain in your legs can also come from certain types of meds especially blood pressure bills.  I’ve heard many people complain about the bp bills causing pain in their legs and when they stopped taking it, the pain stopped a week later.   

The itching is the toxin that your kidneys are not cleaning out, which can cause organs problems whereas it will be hard for a transplant to last.  So again, see if you can start dialysis as soon as possible since you are going for a kidney evaluation.   

Sorry don’t mean to come across strong but sometimes things can be avoided if some doctors do their research and stop trying to play God.

cdw
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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
zona
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« Reply #31 on: January 17, 2010, 08:07:02 PM »

Thanks everyone for your concern and advice,here is my update....I saw my surgeon and my ac fistula looked okay,they did an ultrasound to look blood clots,and am waiting for those results,I do have mild steal syndrome and may have to have surgery if it gets worse.My veins are small. I am going to approach my neph. about starting dialysis and if she says no then I guess I will be looking for another doctor. She has told me in the past her goal is to keep of dialysis as long as possible but enough is enough. I also had my intact pth levels checked and the results are 637. I will let you know when I start dialysis zona
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zona  diagnosed with Igan 1993
         pre-dialysis gfr13% listed for transplant March 2010 Received transplant from deceased son August 2013. My son my hero.
tyefly
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This will be me...... Next spring.... I earned it.

« Reply #32 on: January 17, 2010, 09:18:42 PM »

Good  for you Zona.    None of us wanted to start but all of felt better after we did.....Its your decison and you are the one feeling sick.    We are here for and keep in touch...

Kathy
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
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