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Author Topic: Hi Predialysis from the Pacific Northwest  (Read 5327 times)
carla
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« on: February 03, 2008, 04:56:53 PM »
I have had kidney problems for a long time, when in August last year I found out my creatinine was 3.2 and my bun was 58.  My numbers have been getting worse every month and now I am meeting with a surgeon for a fistula.  I was shocked and saddened to learn that there is nothing that can be done about my situation except dialysis and transplant.  Though I am thankful we have those options I feel the kidney industry seems to have stopped at those two things and leave it at that.  I believe one day a cure will be discovered, just like they used to say that brain cells didn't regenerate and spinal cord cells didn't regenerate and the liver didn't regenerate and they have been proved wrong. Because of this and the fact that I didn't really feel that bad, I was confrontational with my nephrologist.

Now however I have become anemic and have high pth levels and I have, as they say, got religion.  I have accepted the fact that I have to have dialysis and really hate it, though I know I need it. I work full time in a stressful job which I like for the first time in my life and I am afraid I will have to give it up and live on disability and spend every waking moment worrying if I will live or die.  My nephrologist told me when I was in the hospital last week about a nephrologist who is in his seventies and had a transplant 30 years ago and is still working as nephrologist and that gave me hope, because being a neprologist is a lot tougher than my job.

I have lurked on this site for a while and have learned a lot.  I am proud to be a member and wish I could have joined when Epoman was still alive.  That is all I have to say now.  Thanks for keeping this site going whoever is doing that. :waving; :waving;
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You got your dialysis and your transplant, now leave us alone so we can cure important things like erectile dysfunction, resless leg syndrome and wrinkles....Medical Industrial Complex
Joe Paul
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« Reply #1 on: February 03, 2008, 07:13:57 PM »
Welcome Carla, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
kellyt
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« Reply #2 on: February 03, 2008, 07:25:45 PM »
 :waving;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
boxman55
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« Reply #3 on: February 03, 2008, 07:33:38 PM »
Welcome Carla. there are people on this site that work and have dialysis. seek them out for encouragement...Box
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
kitkatz
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« Reply #4 on: February 03, 2008, 08:25:25 PM »
I have been on dialysis for nine years and am still working as a teacher.  It can be done.  Take care of yourself.  :welcomesign;




Kitkatz,moderator
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
oswald
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« Reply #5 on: February 04, 2008, 12:56:39 PM »
 :welcomesign;
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ESRD 11/95
1st Transplant 7/1996 (failed; Nephrectomy 12/1996)
2nd Transplant 3/1999 (lasted 6 years)
3rd Transplant 5/2007 (lasted 4 years)
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #6 on: February 04, 2008, 01:01:00 PM »
 :waving; Hi carla,
It is an overwhelming diagnosis, to hear that your life is forever changed. Thankfully there are treatments for kidney failure, and it's one area of medicine where there's lots of research ongoing. This gives me hope that better solutions are coming!
I am glad you decided to join IHD and I hope you find good support from the wonderful members here!
Welcome!


okarol/moderator
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
paris
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« Reply #7 on: February 04, 2008, 01:43:18 PM »
 :welcomesign;  This is the place to be for support, knowledge and power.  I relate to the "am I going to live or die" thoughts.  I am making choices everyday to help me live and this site gives me strength on days that I have none of my own.  There are so many people here that are heros and role models.  Your anger can be a good thing. It will make you learn and do everything you can for YOU.   So glad you joined this marvelous family :grouphug;
« Last Edit: February 04, 2008, 02:42:55 PM by paris » Logged


It's not what you gather, but what you scatter that tells what kind of life you have lived.
MyssAnne
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« Reply #8 on: February 04, 2008, 02:09:48 PM »
Welcome, Carla!

Yes, it can be done, working AND dialysis!!  It's hard, but it is workable.

Hang in there, ask questions, both of your neph AND of us!!!

Have you gotten training in what is involved with dialysis?  Do you know what to expect?
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oleboy
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« Reply #9 on: February 04, 2008, 02:27:08 PM »
 :welcomesign; You are among friends here.We learn from each other and continue our path.
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'hold fast your dreams for if dreams die life is a broken winged bird that connot fly.'
Romona
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« Reply #10 on: February 04, 2008, 03:21:06 PM »
 :welcomesign;
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Bill Peckham
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« Reply #11 on: February 04, 2008, 04:15:25 PM »
Welcome Carla.

Home dialysis can make it easier to continue to work. Has anyone talked to you about PD? There is research that shows peritoneal dialysis can help maintain residual kidney function. The more kidney function you can keep the better. Some research is showing that more frequent hemodialysis does the same thing.

Getting a fistula place is a good idea even if you choose to start dialysis using peritoneal dialysis.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
Ang
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« Reply #12 on: February 04, 2008, 07:45:39 PM »
 :welcomesign; aboard




EDITED: Fixed Welcome Icon - Sluff/ Admin
« Last Edit: February 04, 2008, 08:28:10 PM by Sluff » Logged
live  life  to  the  full  and you won't  die  wondering
Sluff
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« Reply #13 on: February 04, 2008, 08:29:50 PM »
 Welcome Carla to ihatedialysis.com.  So happy you have found us.   You will find alot of answers here (even to question you have not yet asked)    We have an awesome group of people here, they are the BEST support.   If there is anything in particular you are looking for and just cant find, Please do not hesitate to ask, any one of us will be more than happy to help you out any way we can.  See ya in the forums.

Sluff/ Admin
« Last Edit: March 13, 2008, 08:21:40 PM by Sluff » Logged
Rerun
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Going through life tied to a chair!
« Reply #14 on: February 04, 2008, 09:12:44 PM »
Welcome Carla.  Your fears are valid.  All those things can happen.  My advice is get on that transplant list as soo as possible.  Seattle is a great place to be for kidney advances.
Kidney research has stopped because there is good money in dialysis and drugs! 

Welcome to IHD.  I'm looking forward to your posts.

            :welcomesign;
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silverhead
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« Reply #15 on: February 05, 2008, 02:32:19 AM »
Hi Carla, and welcome aboard. Your Neph wasn't kidding about the Neph with the transplant, We saw him weekly when Sharon was still going the in-center dialysis (using NxStage at home now) He is a partner with our Neph here in Everett, very outgoing, very hard working and always cheerful.....
Tom
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Do not argue with an idiot. He will drag you down to his level and beat you with experience.
CW
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Yeah .............That's me!
« Reply #16 on: February 05, 2008, 04:25:38 AM »
:waving; Hi Carla,

I agree with you I feel  like things around me seem so high tech and dialysis seems so primitive to me for some reason even though I know there is a lot of science behind it. I wish there were better solutions but as you know there are not right now . I do hope we can live to see major leaps in technology to replace the functions of major organs .

Maybe the news will be revealed on IHD :) we can hope!
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*Common Sense is an uncommon thing


20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
kidney4traci
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« Reply #17 on: February 05, 2008, 05:50:03 AM »
Welcome!  Leep the stress level down, when your body is stressed it is unable to do the natural healing that is meant to happen.  ALso, stress increases hormone production and that increases inflammation and other things that you don't need right now.  Try to find time for yourself!!  Keep posting - peace and love!
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Married - three children.
Alports female, diagnosed ESRD 10/04
11/04  Hemo in clinic
6/07 hemo at HOME! 
2/3/09 - Transplant from an angel of a friend!!!
Deanne
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« Reply #18 on: February 05, 2008, 09:23:59 AM »
Welcome Carla!
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Sunny
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Sunny
« Reply #19 on: February 05, 2008, 02:53:18 PM »
So glad you found this site. It is a great place to begin your education on End Stage Renal Disease. I agree with you that it seems like there hasn't been much advancement regarding treatment of kidney disease, but at least technology to keep us alive is out there. Wishing you all the best.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
rookiegirl
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« Reply #20 on: February 05, 2008, 06:06:39 PM »
 :welcomesign; to IHD.  I've been on PD since Oct 2007 and still work a full time job as a Revenue Analyst.  I hope you will find this site very helpful.  Look forward to your posts.
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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
carla
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« Reply #21 on: February 07, 2008, 08:58:01 PM »
Thanks so much for all your responses, you guys are awesome, I plan to do a lot of posting. :2thumbsup; :thx;
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You got your dialysis and your transplant, now leave us alone so we can cure important things like erectile dysfunction, resless leg syndrome and wrinkles....Medical Industrial Complex
Fierceheart
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« Reply #22 on: February 24, 2008, 07:58:28 PM »
 :beer1;

I am from Salem oregon wondering if you from near here?
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Salem Dialysis Advocate for Patients
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #23 on: February 26, 2008, 07:59:20 AM »
Quote from: carla on February 07, 2008, 08:58:01 PM
Thanks so much for all your responses, you guys are awesome, I plan to do a lot of posting. :2thumbsup; :thx;
That is what we like to hear!!  Post away!
Welcome to our community!  We are so glad you decided to join us.  Pre-dialysis is an excellent time to check this site out.  Knowledge is Power, we always say.  Looking forward to hearing more from you.


Bajanne, Moderator
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
willieandwinnie
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« Reply #24 on: February 26, 2008, 08:05:13 AM »
 :welcomesign; Carla. Glad you found us. We are a great group.
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"I know there's nothing to it, but I want to know what it is there's nothing to"
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