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Author Topic: New at this forum, old at dialysis  (Read 2881 times)
ImaginaryPixel
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« on: February 27, 2009, 08:13:02 PM »
Hi everybody, I was really lucky finding this forum... really, I've read some posts and I already feel like people here will understand me.
First things first, my name is Marco and I'm 23, I've been sick since I was 13, I have Lupus, but I started dialysis at 16, but only for 6 months, then I had a transplant, but since the very first day it gave me trouble after trouble, the thing is, I rejected it after 19 months...then I started treatment for the second time.... it's been 5, 6 years, I've had lost track of it, I'd rather not to think about that. I feel like there's two of me, the one who's sick and the one who pretends not to be.
I try so hard not to feel depressed, but it's kinda difficult, sometimes treatment leaves me with headaches, nausea, low blood pressure, you know, like I've been hit by a truck, but I believe it's my duty to put myself together and not to complain much about it, because there's so much I have to do...
I've worked since I was 16, just to maintain treatment, by the way, I'm from Guatemala, and here yo need to have lots of money to afford dialysis, or... social security, that's the reason I had a job since I was 16, just to afford social security, but some days It's just too hard to juggle work, college, dialysis, I almost finish college, so I don't want to quit it. My mother has been my support, she's the one who struggle with me. People see me daily and they just don't believe I'm sick, they just think I made this up.... yeah right, like it's easy feeling like this.
I really don't have much friends, I'm a little bit aphatic, sarcastic you may say... but sarcasm is the only thing that helps me sometimes. I really hate optimist healthy people, let's see if they're optimists with non-functional kidneys....It's so easy to be upbeat when you're healthy...
Well I guess there's some things about me, I'm just a weird guy who happens to be sick... God knows how many time I have left, I just try not to think much nowadays...

By the way, I'm a graphic designer... so if you need anything, It's my pleasure...

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Ich kann das Ende nicht sehen...
Zach
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"Still crazy after all these years."
« Reply #1 on: February 27, 2009, 08:17:48 PM »
It's good to have you here!
 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
Wenchie58
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Always carrying the big silly grin!
« Reply #2 on: February 27, 2009, 08:21:41 PM »
 :welcomesign; Marco!  Enjoy the site.  :flower;
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Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"

Right nephrectomy 1963
Diagnosed ESRD 2007
"Listed" summer 2007
Transplant 3/6 match  10/24/08
st789
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« Reply #3 on: February 27, 2009, 08:25:45 PM »
Welcome and yet healthy people have a very hard time understand what we going through.
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Joe Paul
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« Reply #4 on: February 27, 2009, 09:49:01 PM »
Welcome Marco, 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
G-Ma
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« Reply #5 on: February 27, 2009, 10:09:04 PM »
 :welcomesign;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
peleroja
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I have 16 hats, all the same style!
« Reply #6 on: February 28, 2009, 08:58:39 AM »
Welcome to the group, Marco.  Lots of good information here and the occasional shoulder to cry on.  Glad you found us!
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willieandwinnie
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« Reply #7 on: February 28, 2009, 09:05:04 AM »
:welcomesign; Marco. Great introduction. You will find this a great group of folks with tons of information and all kinds of support when you need help or just want to  :rant;. Hope we hear more from you. I too was a graphic designer when I worked. I still play around with it to keep out of trouble. Post often, please.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
Rerun
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Going through life tied to a chair!
« Reply #8 on: February 28, 2009, 11:46:04 AM »
Welcome Marco you sound like a real neat guy.  You need to read www.butyoudontlooksick.com

Here are some smart comments back to people who say "you don't look sick".   :rofl;  And you don't look stupid!

http://www.butyoudontlooksick.com/2006/08/sick_humor_answers_to_but_you.php#more


Glad you found us!          :welcomesign;
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Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #9 on: March 01, 2009, 01:48:03 AM »
Bienvenido a nuestra comunidad!  Mucho gusto de recibirle aqui, Marco!  This is just the place to be.  Here you will find information, support and even some fun.  You will find that there is even place for your sarcasm here!  This is much more than a forum - it is a family  :grouphug;  This is just the place to vent, rant, rage or rave as you feel.  The founder wanted to create a place where people could have a voice and express themselves without censorship (minus vulgarity, of course) and that is what we are.  So keep reading and keep posting.




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;
boxman55
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« Reply #10 on: March 01, 2009, 08:28:24 AM »
Welcome to IHD, Marco. You are so right about healthy people. I am so sick of people always saying you look great. BS. Again glad you are here and post often.

Boxman,Moderator
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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
Romona
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« Reply #11 on: March 01, 2009, 08:31:41 AM »
 :welcomesign;
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cat
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« Reply #12 on: March 01, 2009, 11:27:12 AM »
 :welcomesign;  Glad you are here!
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cat
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« Reply #13 on: March 05, 2009, 05:47:20 PM »
 :welcomesign; Marco,

I am sorry that you have to go through so much crap. One of my teenage daughters is also on dialysis and she feels like crap a lot of the time.  I am amazed that you continue to do so much, work and school and dialysis. I am impressed. Hang in there. You will find lots of support and information on this forum.
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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!)
ODAT
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Nala - Mom's Cat
« Reply #14 on: March 06, 2009, 09:55:20 AM »
Hi Marco, you have dealt with a lot in your young life. Being as busy as you are keeps your mind from dwelling as well as the opportunity to get social security. I have two sons 17 and 19. I am so glad your illness isn't keeping you from college. You have the strength of many. My youngest son's girlfriend's dad is a graphic designer. He designed the label for the Intense Milk line. I do some designing in my career and often wonder if I should / could make the jump to graphic design. It is so creative.

I am here for my mom who is still pre-dialysis. This group is very caring, supportive, and even ready to set you straight if you need it! - in a good way. The internet is a wonderful thing to bring people so far apart so close together. take care Marco,
Kim
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As is your sort of mind, so is your sort of search: you will find what you desire.
paris
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« Reply #15 on: March 07, 2009, 01:25:34 PM »
 :welcomesign;    I am so glad you joined this group.  There is a lot of good information here and so many people that understand what you are dealing with.  This is an incredible supportive group.   You sound like an amazing young man with a marvelous attitude.  I think you will fit right in with this eclectic group!    :grouphug;   :2thumbsup;




paris, Moderator
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Dan.Larrabee
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Dialysis Dan
« Reply #16 on: March 10, 2009, 01:57:44 AM »
Hi Marco  :waving;
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AKA Dialysis Dan
Feeling the best I can because of Home Hemo
Doing it the best way I can by making it Nocturnal
Sharing it to help everyone feel they best they can
www.youtube.com/dialysisdan
aharris2
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Volcan Pacaya, Guatemala
« Reply #17 on: March 10, 2009, 07:15:23 PM »
Bienvenidos vos chapin! Como te va?

 :waving;
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Life is like a box of chocolates...the more you eat the messier it gets - Epofriend

Epofriend - April 7, 1963 - May 24, 2013
My dear Rolando, I miss you so much!
Rest in peace my dear brother...
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