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Author Topic: Things to do  (Read 11746 times)
kitkatz
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« Reply #25 on: July 31, 2006, 10:32:54 PM »

I am looking for you Kevno. Come play nicely.
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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
kevno
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« Reply #26 on: August 01, 2006, 06:44:21 AM »

Now that sounds like the Spider to the Fly :o
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But this little saying keeps me going!!

"RENAL PATIENTS NEVER GIVE UP!!!!!!"
kitkatz
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« Reply #27 on: August 01, 2006, 04:05:11 PM »

"Come to my parlor" said the spider to the fly.
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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
kitkatz
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« Reply #28 on: August 17, 2006, 08:49:16 PM »

Learn silly rhymes and songs so you can sing them at dialysis to the techs.
Make up silly rhymes and songs about the techs. Be sure to them.
Make up names for the transplanted kidney before it comes to you.
Make a welcome quilt for the new kidney.
Pack a suitcase for your hospital stay.
Get prepared for an earthquake or other natural disaster.

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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
kitkatz
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« Reply #29 on: November 18, 2006, 09:36:09 PM »

More things to do while waiting for transplant or waiting to get on the list:

Chase Kevno around the IHD.com site with a big stick!
Call the transplant coordinator once a week to remind them you are around!
Count the pills you have left and decide when to call in the refills, so you can afford the copays that go with them!
Grab your butt and hang on because you are going for a ride!
Go to Rerun's unit and sit in her chair!  Love ya Rerun!
Lose your sanity, go looking for it, find it, lose it again!
Look for your mind, because you have lost it again!
Rant, rave, moan and groan!
Make all of your doctors appointments and be sure to ask intelligent questions so you are well taken care of and they take you seriously!
Make all of your dialysis appointments.  I have not missed one dialysis treatment in eight years.  I have had to reschedule, but I have made everyone of them!  I think I drive my unit crazy!  I always show up!





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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
Rerun
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Going through life tied to a chair!

« Reply #30 on: November 18, 2006, 09:50:58 PM »

Things the Transplant Center can do to get us back..........

Call at 3:30 AM just to say "hi".

Call us in for a Dry Run.

Call to tell us we are off the list because our Phosphorus was too high.



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angieskidney
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« Reply #31 on: November 20, 2006, 03:12:40 AM »

Call to tell us we are off the list because our Phosphorus was too high.
They can do that??  :o


lol good thing they haven't with me :P  when it was high :P


hmm.. what else to do .. ah yes!

  • pick my nose
  • try to think back to the last year I peed
  • look around the Nephrologists / transplant coordinators waiting room and try to figure out who's had a transplant or not judging on puffy faces :P
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FREE Donor List for all Kidney Patients!

diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #32 on: November 20, 2006, 08:17:34 AM »

Jenna said that when she gets a transplant she wants to take a car trip.
We have talked about where to go.
Maybe up the California coast. Or hit route 66.
Or maybe drive to visit all the internet cousins we have made
on IHD.com and livingdonorsonline.org.

Jenna used to read voraciously. It's very hard for her now.
She also used to write chapter books! Now it's difficult for
her to concentrate on writing on a fan fiction site.

Her birthday is tomorrow. She will be 21! My baby!!!
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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
angieskidney
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« Reply #33 on: November 20, 2006, 12:35:32 PM »

Her birthday is tomorrow. She will be 21! My baby!!!
Oh wow we will have to wish her happy birthday in the Birthday Thread! :)  Is she on here as well?

I want to visit PA when I get a transplant myself.
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FREE Donor List for all Kidney Patients!

diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
kitkatz
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« Reply #34 on: November 20, 2006, 01:57:03 PM »

Jenna said that when she gets a transplant she wants to take a car trip.
We have talked about where to go.
Maybe up the California coast. Or hit route 66.
Or maybe drive to visit all the internet cousins we have made
on IHD.com and livingdonorsonline.org.

Jenna used to read voraciously. It's very hard for her now.
She also used to write chapter books! Now it's difficult for
her to concentrate on writing on a fan fiction site.

Her birthday is tomorrow. She will be 21! My baby!!!

Just think you will have to have the restrooms lined up for her to pee in after the transplant when you travel.  There is a site on line somewhere that tells you about the best bathrooms in the nation. 
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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
Rerun
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Going through life tied to a chair!

« Reply #35 on: November 20, 2006, 10:19:24 PM »

Jenna said that when she gets a transplant she wants to take a car trip.
We have talked about where to go.
Maybe up the California coast. Or hit route 66.
Or maybe drive to visit all the internet cousins we have made
on IHD.com and livingdonorsonline.org.

Jenna used to read voraciously. It's very hard for her now.
She also used to write chapter books! Now it's difficult for
her to concentrate on writing on a fan fiction site.

Her birthday is tomorrow. She will be 21! My baby!!!

She will read and write again after the transplant.  I remember how clear my mind was.  (not any more)
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Fox_nc
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« Reply #36 on: November 21, 2006, 12:03:53 AM »

Clean and organize everything! 

Do a little at a time and when you've finished, start over.  That way it's alway ready.  After my first transplant I was in no shape to do much for weeks (heavy lifting, bending, etc).  So right now I'm on top of chores I used to let slip, because I just can't imagine what will happen when I'm out of commission for that long.  My husband hopes to donate, so he won't be able to do anything either :-)
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Being normal is not necessarily a virtue. It rather denotes a lack of courage. -- from the movie Practical Magic
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #37 on: November 27, 2006, 09:42:47 PM »

Okay, I am trying to be optimistic about the future, and the road trip idea keeps coming up, so I am gonna try to
make a plan. Someday we will go! Here's a place to start. http://www.roadtripusa.com/ Anyone have any suggestions about a good
route to choose? I never could find the best bathrooms list!
Thanks,
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
kitkatz
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« Reply #38 on: November 28, 2006, 06:21:08 AM »

If you have kids who have access to a computer have them plan your route.  We have a teacher who was his classroom get on the net and they plan his route across several states at a time.  They really look for the weird stuff.  He has seen the biggest frying pan and the world's largest potato.  He has taken tours of some pretty good places.  I will look for the bathroom link.
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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
kitkatz
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« Reply #39 on: December 04, 2006, 11:06:34 PM »

Get mad at the doctors and their inability to move things along...calm down...get pissed again...calm down....
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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
nextnoel
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« Reply #40 on: December 05, 2006, 06:49:10 AM »

1. Make adorable little stuffed dolls that look like the medical personnel who give you trouble.
2. Sew cute little clothes to dress them in.
3. Stick pins in them and laugh.
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I can't reach the hill like I used to, but I'm not at a standstill yet!
Sara
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« Reply #41 on: December 05, 2006, 04:14:04 PM »

1. Make adorable little stuffed dolls that look like the medical personnel who give you trouble.
2. Sew cute little clothes to dress them in.
3. Stick pins in them and laugh.

 :rofl;  Good one!
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Sara, wife to Joe (he's the one on dialysis)

Hemodialysis in-center since Jan '06
Transplant list since Sept '06
Joe died July 18, 2007
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #42 on: April 13, 2007, 08:18:40 AM »

Jenna wants to learn to drive now (she tried while on dialysis but felt she was too distracted to focus.)
Then she wants to go on a road trip. I have been driving so much - back and forth to La Jolla for 3 months - I think I can wait a little while!

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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
goofynina
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He is the love of my life......

« Reply #43 on: April 13, 2007, 11:30:20 AM »

Even though that scene looks beautiful, my first thought was OMG, no gas station in site ;)  Is that on your way to LaJolla?  why are there no other cars on the road? lol, i get kinda spooked driving on a road where there are no other cars, too many what ifs  ::)  :P   then again, that is just me and my demented mind going 1,000mph  8)

(I need to start getting out more don't i) :P
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....and i think to myself, what a wonderful world....

www.kidneyoogle.com
Sluff
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« Reply #44 on: April 13, 2007, 12:29:30 PM »

That would be a nice road to ride a motorcycle on.  :)
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