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Author Topic: Facebook!  (Read 3515 times)
Sam.maidment2012
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« on: February 19, 2013, 08:35:22 AM »

For those who actually spend time on facebook, you do know that theres a page on there for ihatedialysis! It needs to be used more, questions and things like that can still be posted on there etc..! I would find it easier instead of trawling old forum posts! Theres so many!!
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Sam Maidment
From UK
2011 Diagnosed with End stage renal Failure (Formal diagnosis Alport's Syndrome) at the age of 21
April 2011 - August 2012 PD dialysis both day exchange and over night machine
September 2012 - In center hemodialysis since late 2012 3X a week 4 hours late evening 3rd shift
I'm still here!!  Alive and kicking ass. :-)
kit78
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« Reply #1 on: February 19, 2013, 09:48:55 AM »

Thanks for posting!
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Inherited PKD from my Mother who died at age 52
2001 Transplant - Blessed...only on list for 4 days
2012 Lost Transplant and had Pneumonia
2012 June - started Dialysis
2012 December -  Back on Transplant list
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #2 on: February 19, 2013, 11:07:44 AM »

We have a IHD facebook page and a group. I often refer people back here though, because there's much more information from questions asked previously, available by using the search bar.
See ya on facebook! Stop by and like my daughter's page, if you can. https://www.facebook.com/WantedKidneyDonor Thanks!
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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
Sam.maidment2012
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« Reply #3 on: February 19, 2013, 01:20:26 PM »

I suppose it easier for some people to be on here.....but would be nice to have some friends to add on facebook, to talk too!
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Sam Maidment
From UK
2011 Diagnosed with End stage renal Failure (Formal diagnosis Alport's Syndrome) at the age of 21
April 2011 - August 2012 PD dialysis both day exchange and over night machine
September 2012 - In center hemodialysis since late 2012 3X a week 4 hours late evening 3rd shift
I'm still here!!  Alive and kicking ass. :-)
Poppylicious
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« Reply #4 on: February 19, 2013, 02:04:25 PM »

There are a lot of people on the Facebook group who I don't think have ever even been to the forums here.  I prefer here because it's a bit more anonymous and there's so much more information and support.  The Fb groups are good for a little pick-me-up but I think it lacks many things which can only be found here; a larger network of supportive people, more in-depth discussions, an opportunity to sound off without your husband knowing you're sounding off (or is that just me? *chuckle*), a place to talk about everything and anything, people who really do know everything and will go out of their way to help you ...

I would be your friend on Fb but I can't find you ... *grin*
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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.
Sam.maidment2012
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« Reply #5 on: February 19, 2013, 02:28:48 PM »

If you want to find me, i have a purple profile picture and the names sam maidment,
:)
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Sam Maidment
From UK
2011 Diagnosed with End stage renal Failure (Formal diagnosis Alport's Syndrome) at the age of 21
April 2011 - August 2012 PD dialysis both day exchange and over night machine
September 2012 - In center hemodialysis since late 2012 3X a week 4 hours late evening 3rd shift
I'm still here!!  Alive and kicking ass. :-)
geoffcamp
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« Reply #6 on: February 19, 2013, 03:48:27 PM »

I'm on there too. At /geoffrey.campbell.7
Let me know your from IHD   G.
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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
jeannea
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« Reply #7 on: February 19, 2013, 06:08:54 PM »

I read and very occasionally comment on the Facebook IHD page. I just find the atmosphere much different there and prefer it here. It's hard to explain but it's how I feel.
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galvo
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« Reply #8 on: February 19, 2013, 06:18:51 PM »

I went onto the F/B site and straightaway got into a brawl with someone. So, I returned here where peace and serenity reign!
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Galvo
deniferfer
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My nickname is princess

« Reply #9 on: February 20, 2013, 09:54:43 AM »

I'm on both FB and here and I read the post on FB and I do find some of stuff helpful. But I do feel here I get more support.

If anyone wants to add me go for it!

/www.facebook.com/jennifer.mcclung81
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1981-1995: Perfectly fine
1996: November, started feeling sick
1997: April, creatine at 17 and began dialysis    
1997: May Place on PD
2006: Had to replace PD tube
Cordelia
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« Reply #10 on: February 20, 2013, 10:12:26 AM »

I have a support group that I started on Facebook, its open to people waiting on the List for any organ and donors,  caregivers and anyone associated with organ donation!

Please join!

Here's the link, my group is called "Life On The List"

https://www.facebook.com/groups/399025610139888/
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Sydnee
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« Reply #11 on: February 20, 2013, 11:26:18 AM »

Which ihatedialysis is the right one? I looked yesterday and guessed I think I chose right.
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After a hard fight to not start I started dialysis 9/13
started on PD
hoping for home hemo starting to build a fistula 1/14
cause PKD diagnosed age 14

Wife to Ed (who started dialysis 1/12 and got his kidney 10/13)
Mother to Gehlan 18, Alison 16, Jonathan 12, and Evalynn 7. All still at home.
www.donate2benefit.webs.com
Sax-O-Trix
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« Reply #12 on: February 20, 2013, 02:31:27 PM »

I prefer to read and post here...  The short period of time I was reading posts on FB, a certain poster was creating major drama and I just don't need it.  I have enough drama of my own to deal with :banghead;
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Preemptive transplant recipient, living donor (brother)- March 2011
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #13 on: February 20, 2013, 08:48:56 PM »

One big difference between facebook and an online forum is moderation. Basically on facebook you agree to their terms of service. We add new members but we don't really get involved in conversations. Once in a while someone will be so abusive that they are removed from the group, but it's rare. Another thing is anonymity. You can post here and unless you've told your friends and family your screen name, you can post on IHD without people knowing who you are. I think it makes it easier to discuss issues without being watched.
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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
Wenchie58
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Always carrying the big silly grin!

« Reply #14 on: February 21, 2013, 05:15:08 PM »

Although I am a Facebook junkie, I have to agree with Karol.  Hiding behind a screen name allows some to be more open and vulnerable.  I for one...don't give a crap, but I am a smarta** like that!   :)
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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
geoffcamp
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« Reply #15 on: March 05, 2013, 09:24:53 PM »

New Facebook update seems to have A LOT of spam. Games, dating services etc....  Is it just me !?!?
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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
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