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Author Topic: Otto's going to try Nxstage  (Read 43859 times)
pelagia
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« Reply #225 on: December 02, 2008, 06:39:29 PM »

you two need a bunch of hugs!  :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
monrein
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Might as well smile

« Reply #226 on: December 02, 2008, 06:50:07 PM »

Couple more
 :grouphug; :grouphug;

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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
okarol
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« Reply #227 on: December 02, 2008, 08:31:26 PM »


Sending you some LOVE Amy  :cuddle;
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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
lola
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I can fly!!!

« Reply #228 on: December 03, 2008, 06:40:37 PM »

Thanks guys you have no idea how bad I needed those hugs, this sucks.
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boxman55
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« Reply #229 on: December 03, 2008, 07:39:57 PM »

Special thoughts for Otto and you, Amy. I can't imagine how frustrated Otto must be and you for that matter...Boxman
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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
G-Ma
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« Reply #230 on: December 03, 2008, 07:40:30 PM »

 :grouphug;
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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
lola
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I can fly!!!

« Reply #231 on: December 04, 2008, 03:38:46 PM »

Otto went today to the Transplant Center and they told him because of everything he went through he may feel like this forever :puke;
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monrein
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« Reply #232 on: December 04, 2008, 03:44:40 PM »

Oh Lola, what a horribly difficult thing to have to hear.  Now we just have to hope that that will be just another example of doctors being wrong.  When I was 8 months old they told my parents I'd likely be dead in 6 weeks.  They were wrong.
 :grouphug;

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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
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #233 on: December 04, 2008, 03:52:46 PM »

Otto went today to the Transplant Center and they told him because of everything he went through he may feel like this forever :puke;

Did they look in a crystal ball? That's ridiculous for them to make a statement like that. He went through a big ordeal and it seems very possible that it just may take time for him to recover. I know it's hard. I hope he improves. One day at a time.
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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
pelagia
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« Reply #234 on: December 04, 2008, 04:57:41 PM »

WHAT!?!

There's no excuse for them saying something like that. 

I completely agree with Karol.  Otto went through a lot, physically and emotionally, and his body was thrown into chaos. Maybe the time frame will be months or even longer to see the improvements when major organs, hormonal systems and dialysis are involved.   But, Otto's a strong guy and he has you.  Love is a powerful thing Amy and your love for Otto has been evident in every word you have posted. I admire the two of you so much for your courage and the love you have for each other.
 
Please keep believing in the power of love and positive thinking!

 :grouphug;
 
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
lola
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I can fly!!!

« Reply #235 on: April 13, 2009, 08:51:19 AM »

Well Otto is feeling the best he has felt in a looooooooong time :cheer:. BUT his Dr on Friday busted him with skipping and that even though he looks and feels good his labs are AWFUL!!!! They even told him they would like to see him doing D 6x's a week and Otto told them flat out that will NEVER happen. He needs to decide if he wants to start with the Home-Hemo or go back in center  :banghead; funny how he has forgotten how awful he felt and that the kids and I lost our Otto, they talked about taking a break and doing in center for a few weeks if he is just to overwhelmed. I wish he would just take a break as he is at a point of wanting to just say screw D all together, good thing he loves me and the kids or he would soooooo be done with this. It's hard to even talk to him about this as I can't even begin to understand.
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paris
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« Reply #236 on: April 13, 2009, 08:58:33 AM »

Lola. you are a Superwoman and I admire your strength.  You all have had a tough year and I am sure Otto is tired of it all.  Maybe going back to incenter for a break could help. I wish there was a simple answer.    :cuddle;    :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
cherpep
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« Reply #237 on: April 13, 2009, 09:34:38 AM »

I'm saying extra prayers for you, Otto, and your kids.  Praying for strength. 
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pelagia
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« Reply #238 on: April 16, 2009, 05:32:35 AM »

No matter what I try to type here, I don't seem to be able to express what I feel when I read your words and think about all your family has been through.  You are always in my thoughts and prayers. I hope the spring brings good health to Otto and Dani.  :cuddle;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
Sunny
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Sunny

« Reply #239 on: April 16, 2009, 03:49:48 PM »

I hope Otto starts feeling a little better soon. I think that would probably help his state of mind. It's so hard to feel upbeat and alive when so many physical difficulties have made Otto's life so hard lately. This must be very hard for you and the family too. Wishing you the best.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
lola
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I can fly!!!

« Reply #240 on: April 18, 2009, 05:41:34 AM »

Well Otto did D 5 days this week :clap; and is already not looking forward to next week. The weather is finally getting nice and he'd rather be out on his bike verses being on D BUT I told him if he continus to be a naughty boy he'll be dead and then no more bikes for him >:D but my smart as$ comments are rubbing off because he says he's pretty sure Heaven has the best Bikes and tracks just waiting for him. :boxing;
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jbeany
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Cattitude

« Reply #241 on: April 18, 2009, 08:46:36 AM »

Ha - tell him he's just going to have to sit around on a cloud in a dress, playing a harp!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

kitkatz
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« Reply #242 on: April 26, 2009, 08:56:15 AM »

Tell that husband of your to behave or  :Kit n Stik; .
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