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Author Topic: Dialysis patients in their teens and twenties!  (Read 6801 times)
maritza0486
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"Pple cant do evrythin but every1 can do somethin"
« on: May 08, 2009, 01:41:54 PM »
 :secret; Just wanted to see how many of the younger generations are going through dialysis. I am 23 and just started dialysis 2 days ago. It was not so bad as what my mom is always telling me since her father went through dialysis for 9 years. He was in his 60's or 70's I believe so she thought that my experience with dialysis would be similar to his which was not the case at all. He was constantly grumpy, avoiding people, solitary, tired, weak, sleeping....I only felt slightly weak and tired and did not sleep at all. I kept telling her that everyone goes through different experiences. Now shes more at ease. I understand why she was so paranoid and depressed about me having to need to go through dialysis. I am a naturally positive individual and I will not let this get me down. Anyway, just wanted to chat with some of the young kidney failure patients in this site. I am female by the way, I just registered today and I am trying to figure out how to work with my profile... :bandance; :pics; :clap; :rant; :yahoo; :2thumbsup; :rofl; :cuddle; :guitar: :bunny: :sir ken; :flower; :cheer:
Logged
~Diagnosed with End Stage Renal Disease at age 17 (a month before turning 18)
~Kidney Transplant from sister February 10, 2005
~Transplant failed December 2008
~Began Dialysis for my very first time May 6, 2009
~Put on Transplant List on June 5, 2009
~Miraculous phone call from Montefiore about potential kidney August 31, 2009
~2nd Kidney Transplant!!! September 1, 2009
~Sep. 6, 2009 Creatnine 1.1 ---- Sep. 11, 2009 Creatnine 1.5 --- Sep. 18, 2009 Creatnine 1.3
~May 14, 2010 -- Creatnine 1.0!!!! I am healthier than ever. 8 months since 2nd transplant!!
monrein
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Might as well smile
« Reply #1 on: May 08, 2009, 01:49:04 PM »
I'm much older than you at this point, I'm 55, but I started D when I was 26 and had a very successful transplant for 23 + years and just 2 months ago had my second one.  Many of us have been dealing with this illness since we were young and we also have several members around your age.  I'm sure you'll soon get to know who they are.
Logged
Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Adam_W
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Me with Baron von Fresenius
« Reply #2 on: May 08, 2009, 01:51:43 PM »
I'm 27 and I've been on dialysis for a little over two years.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
maritza0486
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"Pple cant do evrythin but every1 can do somethin"
« Reply #3 on: May 08, 2009, 01:52:47 PM »
That is really nice to hear. Wow. Congratulations. 23+ years?? That is amazing. Unfortunately my kidney transplant lasted 3 years but it was still the best 3 years of my life. I am not on the waiting list and my brother who is 18 informed me that if he noticed an improvement in the caring of myself, that he will consider testing himself. He just wants me to care for myself as recommended. It is good to hear your story. That makes me smile. Thanks.  :cuddle; :cuddle; :cuddle; ;D
Logged
~Diagnosed with End Stage Renal Disease at age 17 (a month before turning 18)
~Kidney Transplant from sister February 10, 2005
~Transplant failed December 2008
~Began Dialysis for my very first time May 6, 2009
~Put on Transplant List on June 5, 2009
~Miraculous phone call from Montefiore about potential kidney August 31, 2009
~2nd Kidney Transplant!!! September 1, 2009
~Sep. 6, 2009 Creatnine 1.1 ---- Sep. 11, 2009 Creatnine 1.5 --- Sep. 18, 2009 Creatnine 1.3
~May 14, 2010 -- Creatnine 1.0!!!! I am healthier than ever. 8 months since 2nd transplant!!
maritza0486
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"Pple cant do evrythin but every1 can do somethin"
« Reply #4 on: May 08, 2009, 01:53:50 PM »
Quote from: Adam_W on May 08, 2009, 01:51:43 PM
I'm 27 and I've been on dialysis for a little over two years.

Adam

Well Hi there Adam, I am Maritza. How has your experiences with dialysis been? Like I said I just started 2 days ago...
Logged
~Diagnosed with End Stage Renal Disease at age 17 (a month before turning 18)
~Kidney Transplant from sister February 10, 2005
~Transplant failed December 2008
~Began Dialysis for my very first time May 6, 2009
~Put on Transplant List on June 5, 2009
~Miraculous phone call from Montefiore about potential kidney August 31, 2009
~2nd Kidney Transplant!!! September 1, 2009
~Sep. 6, 2009 Creatnine 1.1 ---- Sep. 11, 2009 Creatnine 1.5 --- Sep. 18, 2009 Creatnine 1.3
~May 14, 2010 -- Creatnine 1.0!!!! I am healthier than ever. 8 months since 2nd transplant!!
MandaMe1986
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« Reply #5 on: May 08, 2009, 01:59:23 PM »
Hello I am Amanda and I am 23. Haven't started dialysis yet, but have had kidney problems sense I was 15.
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
maritza0486
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"Pple cant do evrythin but every1 can do somethin"
« Reply #6 on: May 08, 2009, 02:01:39 PM »
Quote from: MandaMe1986 on May 08, 2009, 01:59:23 PM
Hello I am Amanda and I am 23. Haven't started dialysis yet, but have had kidney problems sense I was 15.

 :flower;
Hi Amanda, nice to meet you. Well that sucks to hear. I hope you dont have to start it anytime soon. For me so far though its not really a big deal but I have read some pretty crazy things about it. Hopefully it keeps going well for me. Tomorrow is my third session...im really not looking forward to it but what choice do I have?






EDITED:Fixed smiley tag error-kitkatz,Moderator
« Last Edit: May 08, 2009, 04:11:59 PM by kitkatz » Logged
~Diagnosed with End Stage Renal Disease at age 17 (a month before turning 18)
~Kidney Transplant from sister February 10, 2005
~Transplant failed December 2008
~Began Dialysis for my very first time May 6, 2009
~Put on Transplant List on June 5, 2009
~Miraculous phone call from Montefiore about potential kidney August 31, 2009
~2nd Kidney Transplant!!! September 1, 2009
~Sep. 6, 2009 Creatnine 1.1 ---- Sep. 11, 2009 Creatnine 1.5 --- Sep. 18, 2009 Creatnine 1.3
~May 14, 2010 -- Creatnine 1.0!!!! I am healthier than ever. 8 months since 2nd transplant!!
MandaMe1986
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« Reply #7 on: May 08, 2009, 02:58:08 PM »
Yeah you know you just kinda have to take it as it comes.  I have been through a lot of other stuff so I am sure Dialysis will just be another thing in my life.  But it gets hard sometimes. How long have you been sick?
Logged
Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
maritza0486
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"Pple cant do evrythin but every1 can do somethin"
« Reply #8 on: May 08, 2009, 03:45:47 PM »
I have been sick since 15 I guess. Maybe even before that age because I remember having bad migraines since 11 years old and having dizzy spells. Its all about taking it one step at a time though.
Logged
~Diagnosed with End Stage Renal Disease at age 17 (a month before turning 18)
~Kidney Transplant from sister February 10, 2005
~Transplant failed December 2008
~Began Dialysis for my very first time May 6, 2009
~Put on Transplant List on June 5, 2009
~Miraculous phone call from Montefiore about potential kidney August 31, 2009
~2nd Kidney Transplant!!! September 1, 2009
~Sep. 6, 2009 Creatnine 1.1 ---- Sep. 11, 2009 Creatnine 1.5 --- Sep. 18, 2009 Creatnine 1.3
~May 14, 2010 -- Creatnine 1.0!!!! I am healthier than ever. 8 months since 2nd transplant!!
maritza0486
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"Pple cant do evrythin but every1 can do somethin"
« Reply #9 on: May 08, 2009, 03:51:11 PM »
Quote from: MandaMe1986 on May 08, 2009, 02:58:08 PM
Yeah you know you just kinda have to take it as it comes.  I have been through a lot of other stuff so I am sure Dialysis will just be another thing in my life.  But it gets hard sometimes. How long have you been sick?

Well hey if you ever want to chat more, im here for support. Its good to finally find a site where people understand, you know? We can always chat with our family and friends about how were feeling, but they dont truly understand although they do try to. If you ever need any advice, support, or just a friend to talk to, my AIM is msmaritzam
Logged
~Diagnosed with End Stage Renal Disease at age 17 (a month before turning 18)
~Kidney Transplant from sister February 10, 2005
~Transplant failed December 2008
~Began Dialysis for my very first time May 6, 2009
~Put on Transplant List on June 5, 2009
~Miraculous phone call from Montefiore about potential kidney August 31, 2009
~2nd Kidney Transplant!!! September 1, 2009
~Sep. 6, 2009 Creatnine 1.1 ---- Sep. 11, 2009 Creatnine 1.5 --- Sep. 18, 2009 Creatnine 1.3
~May 14, 2010 -- Creatnine 1.0!!!! I am healthier than ever. 8 months since 2nd transplant!!
Adam_W
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Me with Baron von Fresenius
« Reply #10 on: May 08, 2009, 03:52:31 PM »
Quote from: maritza0486 on May 08, 2009, 01:53:50 PM
Quote from: Adam_W on May 08, 2009, 01:51:43 PM
I'm 27 and I've been on dialysis for a little over two years.

Adam

Well Hi there Adam, I am Maritza. How has your experiences with dialysis been? Like I said I just started 2 days ago...

I've had my ups and downs with dialysis. Its something you gradually get used to. Four months after I started dialysis, I was trained for home treatment. I find that it is so much better than in-centre dialysis because I have full control of my treatment. This is a great group of people, and you won't regret joining.

Adam
Logged
-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
TiffanyJean
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We live in paradise - if only we could enjoy it!

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« Reply #11 on: May 08, 2009, 04:31:45 PM »
Welcome Maritza!!

I am my husbands caregiver - we are both 25 (I will be 26 next month and he will be in Sept.). Richie was diagnosed in Feb. 08 with ESRD, and did HD for the first half of last year and switched to PD in Dec. that has been working really great for us thus far. This is a great site, I joined just in the last month and the people here are so awesome! Love you guys!! :)

Hope to see you around!!

TJ
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"Just think people have no problem having only one kidney, so we have to ask, why
did God give us two kidneys?  Perhaps it is so you would have an extra one to
donate and save a life!"
                        - Dr. Stuart Greenstein, Kidney Transplant Surgeon,
                        Professor of Surgery, Montefiore Medical Center, Bronx, NY   
                        Source of quote:   www.ourjerusalem.com
karen547
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« Reply #12 on: May 09, 2009, 07:29:00 AM »
I'm 23 almost 24!
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draven
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« Reply #13 on: May 09, 2009, 01:33:16 PM »
Im 28 & had was on dialysis for a year before i had my transplant last November. I thought it was not going to be so bad, but soon found out about the fluid/diet restrictions and side effects. thankfuly i found this site.

stay positive and look after yourself, if u have any questions we are here to help.
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fluffy
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Fluff!
« Reply #14 on: May 09, 2009, 10:21:57 PM »
im 25 and have been doing dialysis for close to 5 years. the last two years have been hemo dialysis since the peritoneal kind didnt work too well for me. anyway i think im the younges guy in my centre, hoping for a transplant soon. and im always up for a chat if you want.
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alrightstill
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BAH!
« Reply #15 on: May 10, 2009, 11:54:10 AM »
I'm 28 (29 on the 23rd, oy!) .. been dealing with ESRD since I was the ripe ol' age of 12.. blah.  I hate that now I'm at the point that I can say for more than half my life I've had to deal with this.  I don't actually realize how much that sucks until I actually say it!   :banghead;

I just take each day as they come.. and try to always think positive!  ::)
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1992 @ age 12 i was suddenly diagnosed with ESRD. 
1992 - 1995: Peritoneal Dialysis
1995: Cadaver Transplant
2001: Kidney rejects, back on PD
2002: too much scar tissue prevents PD from succeeding, go on hemo via permacath,
         transplanted kidney is removed.
Dec 2004 -- 2009t: on NXSTAGE (with the bags NOT pureflow) 6x a week via permacath
Dec 2009: Transplant from a pal
Oct 2016 - present:  Transplant fails, back on NxStage w/pureflow via femoral cath, patiently waiting for next kidney
Savemeimdtba
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« Reply #16 on: May 13, 2009, 05:16:59 PM »
I'm 25 - been on dialysis for six months (3 on hemo, going on 3 on PD).  I hope dialysis continues to go well for you!  Hemo was awful for me but PD is going great!
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-Kristi-
12/2008 - Began Hemodialysis
03/2009 - Began P.D.

"You gotta swim, swim for your life, swim for the music that saves you when you're not so sure you'll survive"
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Impossible Is Nothing

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« Reply #17 on: May 13, 2009, 06:11:10 PM »
Hey  Maritza
I'm 29 and have been on Dialysis now for about 6 1/2 weeks. Its taken sometime to get used to but its not to bad. I had gotten really sick, my body got full of toxins and crap my doctor tried to extend the time before I would have to start Dialysis because I have so many other health complications I am dealing with but both kidneys finally kicked the bucket. I am also a Type I Diabetic so I am not new to the "being sick" scene or hospitals. I just got back from my arm access consult I'll be getting a Fistula in my left arm next week. I currently have a port access in my neck but that will soon be gone. Feel free to drop me a PM or hit me up on IM I have them listed and am on there often..

Welcome to IHD and I hope you are feeling and doing well.
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Chris
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Dont let dialysis stop you...
« Reply #18 on: May 14, 2009, 12:05:04 AM »
hi im Matt I just turned 30 but have been on fist when I turned 19 .. Had a transplant then ti rejected and have been on since I was 24..Hope your doing well. If u have any questions jsut ask..
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RichardMEL
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« Reply #19 on: May 14, 2009, 08:20:58 AM »
Umm can I please be in my twenties again? They were good, good years!!!  :rofl; :rofl; :rofl;

The quite distressing thing for me is that the increasing numbers of younger people who have their lives interupted and so badly disrupted by Kidney Disease. Me? I'm old and boring with no life.. but whenever I see someone come in who's so young it just makes me ache a little bit thinking how much their life is changing. Of course the flip side of that is the improvement in transplant technology and the outlook of that treatment mode is much better than it once was, and getting better all the time... so that's awesome!

The best part is a place like IHD where there is a community of supporive and like minded people who can share and apprieciate the experiences we all have!
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
bette1
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My dear daughter
« Reply #20 on: May 14, 2009, 04:38:25 PM »
I started diaysis at 19, so I spent my 20's dealing with this stuff.  I am 41 now, so I know something of what you're going through.  If you don't mind talking with an old lady, feel free to pm me.
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Diagnosed with FSGS April of 1987
First Dialysis 11/87 - CAPD
Transplant #1 10/13/94
Second round of Dialysis stated 9/06 - In Center Hemo
Transplant  #2 5/24/10
TeenHatesDialysis
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« Reply #21 on: May 14, 2009, 09:37:46 PM »
Hello Ritza,

I have a 15 year old daughter that has been on dialysis for 1 1/2 years and an 18 year old daughter that has 20% kidney function. Nobody in our family had ever been on dialysis or had any type of kidney condition so this was a major shock for me and my daughters.  They were diagnosed several years ago with NPHP type 1, a recessive genetic kidney condition that causes kidneys to fail between the ages of 13 and 19.

I will send a PM with my daughter's email address. She would love to hear from you. Its tough being 15 and being on dialysis. Here is a link to her website:

www.cotaforjaclynp.com

 :grouphug;
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Susan, mom of Jaclyn, Deziree and Valerie

www.cotaforjaclynp.com
Jaclyn and Deziree diagnosed CKD 2/07; NPHP (type 1) 9/07
Jaclyn started dialysis 1/2/08
Successful Transplant 7/4/2009 at Lucile Packard Childrens Hospital @ Stanford, Palo Alto, CA
Deziree in denial
Jaclyn listed 5/08
Deziree listed 1/09 ("Inactive")
Jaclyn Cadaver kidney transplant 7/4/09 (Independence from dialysis day!)
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« Reply #22 on: May 17, 2009, 01:36:08 AM »
I'm 22 and been on dialysis since 12 (Hemo) I had to move to Germany because of insurance,  we didn't have any in the USA and my Mom had a German Pass so we moved to Germany. That was worse for me then  dialysis :(
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paddbear0000
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« Reply #23 on: May 17, 2009, 02:22:35 AM »
I'm a tiny bit older, at 31. I've been on dialysis for 3 months, but have known about my kidney failure since I was 26. I've been dealing with type 1 diabetes since I was 6 though.
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********************************************************
I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
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www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
Neo
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Dont let dialysis stop you...
« Reply #24 on: May 19, 2009, 10:41:21 AM »
I Hope you all get Transplants!!! And me too..lol :beer1;
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