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Author Topic: everytime I write on here it disappears FRUSTRATED  (Read 2729 times)
dyann
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« on: August 25, 2010, 09:08:55 AM »

I wrote on here a couple weeks ago and then go back to check and it is gone.  I am so frustrated I have been out of hospital a little over just at 2 weeks I am so tired of hospitals this last stay had to do with the heart and high levels of fat in the blood too too high  and I have had a heart attack in the past  I am not a super heavy lady they said I have a history in the family and that is what is causing the problem.  bectween my heart, kidneys, diabetes and I have a thrombrosis in my chest I am concerned I may not get approved for a Kidney transplant   there is no one to talk to here in Indiana and I just feel like giving in  I know I can't I have kids to take care of, but I just feel lost.
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greg10
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« Reply #1 on: August 25, 2010, 09:42:21 AM »

I am sorry to hear that.  I am a newbie as well, trying to be a good caretaker to my father and learning here as well.

Sometimes a post or thread is moved by the moderator to the appropriate forum, so that is probably why you are missing the post or topic.  You can find it by clicking your own name, profile, and look for the messages or topics (ones you started).

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Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
paris
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« Reply #2 on: August 25, 2010, 10:03:14 AM »

Dyann, I am so very sorry for all you are going through.  It seems overwhelming.  Some days you can only look at a part of the picture because looking at all of it is too much.   How is your heart doing now?    I think kidney disease and all that goes with it can make us feel lost.  Friends and family may not really understand the magnitude of kidney failure.   Please keep coming here and post your worries, fears, concerns.   If you have trouble posting, pm me or any moderator or administrator.  We can help figure it out.    :2thumbsup;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
KICKSTART
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In da House.

« Reply #3 on: August 25, 2010, 11:42:10 AM »

Hey there you ..sometimes the smallest things get us so down.  :cuddle; Its difficult when you cant chat face to face isnt it ?  Sometimes its just a bit of 'real' company we crave ! Dont forget though we are here in our 'virtual' world and i never stop to marvel at how i can talk to people from all over the world !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Sunny
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Sunny

« Reply #4 on: August 25, 2010, 12:47:13 PM »

It takes a little getting used to with regards to learning how to use this site. Sometimes I feel like my posts get misrouted too.
I hope the doctors are able to help you get some control over the medical issues you are having. Hang in there.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
Rerun
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Going through life tied to a chair!

« Reply #5 on: August 25, 2010, 04:29:15 PM »

I'm sorry Dyann.  Just go to your own profile and look at your last posts.  This forum is so big now that things tend to get lost but they really are here.... somewhere. 

I hope you feel better soon.         
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natnnnat
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WWW
« Reply #6 on: August 25, 2010, 10:09:30 PM »

Wow Greg10, I like your screen dump picture showing where to find posts.  That's a nice way to help. 
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
greg10
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« Reply #7 on: August 26, 2010, 05:38:45 AM »

Wow Greg10, I like your screen dump picture showing where to find posts.  That's a nice way to help.
Thank you.  I use this freeware to capture and annotate screens.
http://www.aplusfreeware.com/categories/mmedia/FastStoneCapture.html

I like the picture of Akbah in your avatar, it took a while to figure out what it was  :)
« Last Edit: August 26, 2010, 05:43:17 AM by greg10 » Logged

Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
BigSky
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« Reply #8 on: August 26, 2010, 06:02:57 PM »

News posts and posts that are replied to stay at the top, those that are not replied to as often fall further down the board listing.  If you posted a couple of weeks ago, the post most likely is further back or was moved to another topic if it was not posted in the right topic at the start.
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #9 on: August 27, 2010, 12:15:49 AM »

Just curious to see if your post is missing - check out this list and please let me know.
http://ihatedialysis.com/forum/index.php?action=profile;area=showposts;u=46544
Thanks. We do our best to keep things organized and never delete posts unless it is offensive.

okarol/admin
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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
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