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I'm New Here But Not To Dialysis!
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Topic: I'm New Here But Not To Dialysis! (Read 3101 times)
briellegazzara
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I'm New Here But Not To Dialysis!
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May 16, 2013, 07:42:26 PM »
Hi There! My name is Brielle and I am from Ohio. I have been on dialysis now for 23 yrs! I started when I was just 13 yrs old. My kidney failure was due to a hereditary issue that I was suppose to grow out of (Renal Reflux) but I had a lot of stress in my life at the time ( mother passing and custody battle) that my B/P was so very high constantly everyday that my kidneys went out on me. I started on PD in 1990 and got a kidney transplant in march of '91 that only lasted for a week. My stepfather was the donor:) we only had the same blood type but no matching genetic markers. They did the transplant anyway thinking the immune suppressants would work. Well, it did not and I became very sick. Sicker then when I was doing dialysis. The doctors tried to save the new kidney and tried to repair it after my body attacked it but but they could not save it. I went back on dialysis. This time it was in-center and a fistula was placed in my rt arm. I did hemo for 3 years and then my fistula started growing really big! It started enlarging the right side of my heart and was putting pressure on my heart and throwing off the balence of fluid in my body which started give my asidies (where fluid startes building up in the peritoneal cavity) I had to get this fluid drained every other week ( which was about 2 to 3 liters of apple juice looking fluid!!) it was painful and some what dangerous because all of the vital organs are located!! My doctor suggested that they tie off the fistula and go back on PD. So, from '94 to '98 I went back on PD until I got my 2nd transplant from my dear brother. That one lasted 2 weeks. I got pancreatitis either from the transplant surgery or the immune suppressants. To this day we still don't know. At first doctors did not know what was wrong with my. They said I was either constipated really bad or had bad gas. I went to several doctors. Finally, I came across a doctor that told me I had pancreatitis! It was a relief. He put me on TPN (a iv nutrition bag) that I carried around with me in a back pack on my back for 3 months straight). I was to have no food either during this time because my pancreas had to heal. I during this time I went back on hemo. After healing totally from pancreatitis and many surgeries in between I am a healthy home hemo patient that has been doing the nxstage since May of 2012! I love doing it at home and I put my needles in (I have a graft in my left thigh and got this put it at 2001) and my amazing fiancé helps me with my treatments:) I usually have a pretty good outlook on my dialysis but sometimes once in a while get down but who doesn't!!?!?! Thanks for reading my story and I am so happy to be here!
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23 years on dialysis
PD 6 years
In-center hemo 17years
Home hemo 1 year (currently doing!)
Transplanted 2 times, failed both
Grumpy-1
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Make me the person my dog thinks I am
Re: I'm New Here But Not To Dialysis!
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Reply #1 on:
May 16, 2013, 08:09:02 PM »
Welcome thanks for sharing your story.
Grumpy
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Make me the person my dog thinks I am
MaryD
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Re: I'm New Here But Not To Dialysis!
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Reply #2 on:
May 16, 2013, 08:48:29 PM »
My word, you really have been through the mill! Welcome, Brielle.
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papacat
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Re: I'm New Here But Not To Dialysis!
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Reply #3 on:
May 16, 2013, 11:12:12 PM »
Welcome to IHD Brielle.
papacat
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MaryJoe
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Re: I'm New Here But Not To Dialysis!
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Reply #4 on:
May 17, 2013, 05:32:43 AM »
Welcome, Brielle! Your story left me a little speechless, you've overcome a great deal. Glad you seem to be in a much better place healthwise. You must be a very determined, strong lady.
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Whether the glass is half empty or half full is not as important as being thankful there's a glass and grateful there's something in it.
Angiepkd
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Re: I'm New Here But Not To Dialysis!
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Reply #5 on:
May 17, 2013, 06:50:16 AM »
:welcomesign;Brielle! I am in Ohio and also do NxStage at home. You will find great support on this site. It sounds like you have really been through it in your young life. Hope things are better with home hemo. You are a very strong lady! Feel free to vent when you need to. It really helps to get it off your chest! Looking forward to hearing more from you!
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol! So far we are doing great!
Poppylicious
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Re: I'm New Here But Not To Dialysis!
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Reply #6 on:
May 17, 2013, 08:33:09 AM »
Brielle!
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- wife of kidney recepient (10/2011) -
venting myself online since 2003
(personal blog)
grumbles of a dialysis wife-y
(kidney blog)
sometimes i take pictures
(me, on flickr)
Everything was beautiful, and nothing hurt.
rocker
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Re: I'm New Here But Not To Dialysis!
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Reply #7 on:
May 17, 2013, 11:18:59 AM »
Wow.
Welcome, Supergirl! You've certainly been through a lot!
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cariad
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What's past is prologue
Re: I'm New Here But Not To Dialysis!
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Reply #8 on:
May 17, 2013, 11:59:34 AM »
Brielle!
I love your name, it's beautiful! You have way too much experience with all of this, but we are so lucky to have you as a member. I look forward to reading more of your posts.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria
People have hope in me. - John Bul Dau, Sudanese Lost Boy
Wildrose
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Re: I'm New Here But Not To Dialysis!
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Reply #9 on:
June 01, 2013, 09:51:36 AM »
Brielle!
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1995 - Diagnosed with 'some kind' of kidney disease during first pregnancy at 16 yrs old due to excess protein in urine
1998 - Biopsy diagnosis of IGA Nephropathy at age 18
2007 - Successful second pregnancy, creatnine of 1.8 something
2009 - Successful third pregnancy creatnine of 2 something
2009-November of 2011 - Somehow went from Creatnine of 2 something to 5.43
November 2011 - Diagnosed with End Stage Renal Disease
3/28/12 - Started Peritoneal Dialysis
5/21/12 - Ended up in hospital for 5 days with PD fluid leaking through hole in diaphragm to right lung
5/25/12 - IJ catheter placed, 5/26/12 - First in center hemo treatment
6/15/12 - Back on PD for three weeks and hemo at same time, 7/7/12 - PD fluid leaked again, off PD and still on hemo, 7/15/12 - on PD again and hemo
7/23/12 - chest xray shows fluid leak again, off PD for one month with possible thoracic surgery in future to fix hole in diaphragm. 5.70 creatnine
8/7/12 - 24 hr urine test shows improved kidney function. 3.47 creatnine - Dr reduced hemodialysis from 3x's to 2xs a week.
Big E
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Re: I'm New Here But Not To Dialysis!
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Reply #10 on:
June 01, 2013, 11:17:59 AM »
Hi Brielle!
I'm sorry for all you've had to go through, but you sound like a real trooper. Glad home dialysis is working out well for you. I know most of our members who do it are really happy with the results.
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PKD diagnosed June 1996
Started in-center hemodialysis May 2010
lmunchkin
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"There Is No Place Like Home!"
Re: I'm New Here But Not To Dialysis!
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Reply #11 on:
June 06, 2013, 10:00:11 PM »
Late on this, Brielle, but wanted to welcome you to IHD! We do NxStage at home & it has worked very well for us. So glad to have you. You definately have EXPERIENCE with all things Dialysis!
Again welcome & God Bless,
lmunchknin
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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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