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Author Topic: Introduce Myself I am a newbie ;)  (Read 4507 times)
Lori1851
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This is me Lori , Dustin's mom
« on: April 08, 2007, 06:32:03 AM »
Hello,
I am a mother to a 21 yr old son Dustin who is now in ESRF due to FSGS. He was diagnosed with FSGS in 2003 but started having getting trouble when he was 12 but after a year on meds went into clicical remission. It was his Junior year in high school where the swelling started again.
He has been through 2 biopsy's. He has a perma cath and his right av fistula did not take soooo here we are again looking at the upper arm fistula.  We finally got Dustin in to our local dialysis center after driving 3 days a week like 60 miles each time for over a month.  We go Thursday for a transplant evaluation.
It sure has been a long road but we will reach the top of the mountain one day.
Glad Mom's can post to .
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MyssAnne
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« Reply #1 on: April 08, 2007, 06:41:09 AM »
Welcome, Lori! This sounds like a place you need for yourself, as well as Dustin!  Mothers are ALWAYS welcome here!
Let us know how the transplant process goes!
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Joe Paul
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« Reply #2 on: April 08, 2007, 06:57:42 AM »
Welcome Lori, 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
Lori1851
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This is me Lori , Dustin's mom
« Reply #3 on: April 08, 2007, 07:14:55 AM »
Thank you Joe and MyssAnne for replying. As a parent you hate seeing your child should I say young man go through this.
I have always tried to stay positive and to keep the faith. I  have always told Dustin he will get his turn for transplant. I cannot donate since I have had high bp and been treated for it like over 15yrs even though I am 44. My hubby is considered obese. My niece and my older sis are going to be tested.
Do you suffer from depression ? Dumb ? huh ! Well Dustin finally agreed to try some med for that and I have to say it has made alot of difference. Dustin and I have always been close since he is our only child. I have always tried to read up and learn all I could about his disease FSGS. Do either one of you have and upper arm fistula?
So great to talk to others.
God Bless,
Lori / Indiana mom to Dustin FSGS ESRD
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boxman55
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« Reply #4 on: April 08, 2007, 07:55:25 AM »
Welcome Lori, this site has been very helpful to me and I am sure a lot others. I just recently got an upper arm fistula after a left arm lower failed. I t is to early yet to know if it will work though. Boxman55
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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
Lori1851
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This is me Lori , Dustin's mom
« Reply #5 on: April 08, 2007, 07:59:20 AM »
Boxman,
So do you have the incision from the elbow to the armpit or did they do the keyhole technique? I know Dustin is not looking forward to this since he had a failed lower wrist fisula also.
Thanks for writing me.  :)
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Sluff
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« Reply #6 on: April 08, 2007, 09:31:26 AM »
Welcome Lori,

It's good to have you here. I too have FSGS. Diagnosed in May 06.I know what the future holds because of ihatedialysis.com this is an excellent resource tool and I'm glad you found us. I have learned so much about esrf and dialysis because of this site.

We do have an off-topic section as well where we can get away from dialysis conversations for awhile. feel free to join in any conversation, and join us in chat sometime.


Sluff/ Admin
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thegrammalady
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« Reply #7 on: April 08, 2007, 09:35:58 AM »
 :welcomesign; glad you're here, looking forward to hearing from you
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

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For You Are Crunchy And Taste Good With Ketchup
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #8 on: April 08, 2007, 10:15:31 AM »
  :waving; Hi Lori -
From one mom to another I want to say welcome!
This is a wonderful group of people and you will get a lot of support here!
My daughter is 21 and was on hemo for 3 years, just got a transplant 10 weeks ago.
I know this is tough, watching your kid suffer and wishing you could fix it.
It's great to meet you!  :cuddle;
Karol
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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
George Jung
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« Reply #9 on: April 08, 2007, 10:53:42 AM »
Welcome.  Do you think Dustin would want to join in as well.  I am 31 and have been on hemo for just over 4 months.  It would be nice to also have some younger guys around (no offense to anyone).  Of course it is his decision, I can only say how bennificial this site has been for me.  Anyways, glad you found IHD.
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goofynina
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He is the love of my life......
« Reply #10 on: April 08, 2007, 01:28:43 PM »
Hi Lori, Welcome to ihatedialysis.com.  This is the place you need to be to find the answers to alot of your questions, even questions you may not even know you have ;)  I have an upper arm fistula and i have a scar under my arm and one on the inside lower part of my arm from the surgery and then i have the 2 scars on the outer part of my arm where they dialyzed me from.  I am currently on PD, has your son thought of maybe doing PD instead, the diet and the fluid are not AS restricted than being on hemo.  I am so much happier and i feel better with PD.  I hope to hear more from you and possibly Dustin as well.  Hopefully you will find the support here outstanding, i know it is my #1 support and i love these members for all they have gotten me through.  Good luck to you and Dustin and please do not hesitate to ask questions, post comments and/or concerns of your own. ;)  Glad you are here.  :grouphug;


Goofynina/Admin.
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....and i think to myself, what a wonderful world....

www.kidneyoogle.com
Zach
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"Still crazy after all these years."
« Reply #11 on: April 08, 2007, 01:38:10 PM »
Welcome to the community!     ;)
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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."
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #12 on: April 08, 2007, 02:54:28 PM »
Welcome to our community.  This is just the place for you to be.  You will find out that you are not alone.  There are many people here who understand exactly what you are going through, and will be there for you.  Keep reading and keep posting.  As George Jung said, why not encourage Dustin to come to this site as well.  There isn't just dialysis stuff - there is also our arcade, and Renal Romance!


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;
donnia
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me and my donor Joyce
« Reply #13 on: April 08, 2007, 06:18:12 PM »
Welcome Lori!

 I also had my av fistula fail (not even 2 weeks ago). 

I know you will like it here... it is a wealth of information.
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
Jill D.
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« Reply #14 on: April 08, 2007, 07:40:53 PM »
Hi Lori, and  :welcomesign; !

I was diagnosed with FSGS in 1990, at the age of 28. Started hemo in April 2006 and had a transplant in December!

You will find so much information and support here!
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Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
tamara
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WOO HOO NEW KIDNEY PEEING !!!(Transplant 23/10/07)
« Reply #15 on: April 08, 2007, 07:54:50 PM »
 :welcomesign;


See You Around!

Tamara xxx ooo
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ABO Incompatible Transplant from my loving Partner 23/10/07
after over four years on the D Machine 

                                                                                                                  
Dialysis Sucks and Transplants Don't.................So Far Anyway !!!!!
anja
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« Reply #16 on: April 08, 2007, 10:35:05 PM »
 :welcomesign;  Lori to the community.  Glad you joined us and are finding out all you can for Dustin.   Must be difficult to watch your child struggle with this disease.
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Hawkeye
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« Reply #17 on: April 09, 2007, 07:37:10 AM »
hello and  :welcomesign;
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It's not easy being green.
kitkatz
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« Reply #18 on: April 09, 2007, 10:23:02 PM »
Welcome to the site! When things get rough in the tranplant evaluation, just put your head down and charge on through it. Eventually things will look better


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
Wattle
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« Reply #19 on: April 10, 2007, 12:23:42 AM »
 :welcomesign;
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
nextnoel
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« Reply #20 on: April 10, 2007, 08:52:52 AM »
Welcome to the IHD family! :welcomesign;
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I can't reach the hill like I used to, but I'm not at a standstill yet!
Earlinda
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« Reply #21 on: April 25, 2007, 10:48:49 AM »
 Hello Lori!!  :welcomesign;  I know how you feel as my son was born with Caudal Regression and Vactryl Syndromes.  My Jesse did not live past one year and 17 days and we had many ups and downs.  I know the love and heartache you feel and the sometimes helplessness.  I hope that you and Dustin will be very active on IHD and look forward to getting to know you.

Earlinda
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keefer51
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« Reply #22 on: April 26, 2007, 08:33:24 AM »
Lori, Good luck with the tests, I am sure everything will be OK. You are a good mother to your son. I have a left arm fistula that works great. I am sure by now you have heard of the cream. He has to get a script but the cream will take away any pain of the needle. You just dab it all over the fistula about an hour or so before dialysis and wrap the site with saren wrap. Once at dialysis you just wash the site and it usually is numb. i had two fistulas in my right arm but they failed. prior to that i had 7 catheters!! They kept getting me ill.
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i am a 51 year old male on dialysis for 3 years now. This is my second time. My brother donated a kidney to me about 13 years ago. I found this site on another site. I had to laugh when i saw what it was called. I hope to meet people from all over to talk about dialysis.
del
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del and willowtreewren meet
« Reply #23 on: April 26, 2007, 09:34:14 AM »
 :welcomesign; Lori and good luck. Hopefully the next fistula will work.  Is PD an option?  Hubby has been on nocturnal home hemo since Oct.  06.  Did PD and in center hemo. This is way better!
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Don't take your organs to heaven.  Heaven knows we need them here.
Kathleen
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« Reply #24 on: April 27, 2007, 07:29:35 PM »
Hi Lori1851  and  :welcomesign;
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