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Author Topic: Blog "Life Not on the List"  (Read 18123 times)
kitkatz
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« Reply #25 on: January 02, 2018, 10:03:27 PM »
I have updated my birthday posts on my blog today.  I will be doing the OKC trip soon on it, too.
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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
PrimeTimer
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« Reply #26 on: January 03, 2018, 10:13:18 PM »
 :birthday; Happy Birthday! Celebrating for a WHOLE month?!! Everybody should! I don't know what butt cards are, I can only imagine   :sir ken;     ...great, now I can't get that image out of my head! My brother and I use to send each other "dumb cat cards" but your butt cards sound funnier.


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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
kitkatz
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« Reply #27 on: February 11, 2018, 04:09:49 PM »
New post on my blog www.lifenotonthelist.com
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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: February 15, 2018, 12:41:17 PM »
New posts up on the blog. 
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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
MooseMom
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« Reply #29 on: February 16, 2018, 08:29:13 AM »
Thanks for telling us all about the reunion last year.  It was fun to read!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kitkatz
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« Reply #30 on: August 19, 2018, 02:49:32 PM »
New posts on the blog folks.
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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
Simon Dog
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« Reply #31 on: August 19, 2018, 08:25:26 PM »
Very interesting post, sounds like quite an adventure.

Sorry to hear about the 15 uses when 16s prescribed.   I've learned you have to check the Rx you are given, and watch the machine for high pressures, errors, etc.  I lost a blood setup because I relied on the tech to monitor the arterial chamber; blood got too low in it; air got in the lines; and I lost a setup worth of blood.   I've prevented that same mistake from happening on 2 subsequent occasions.
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MooseMom
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« Reply #32 on: August 21, 2018, 01:02:23 PM »
Quote from: kitkatz on August 19, 2018, 02:49:32 PM
New posts on the blog folks.

I'm exhausted just reading that.  You all have been busy!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
iolaire
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« Reply #33 on: August 21, 2018, 01:10:31 PM »
I hope you are enjoying the updated house. 

Also thanks for providing the complaint letter, short and to the point...  its a good example as people often go so far off track in complaints with unimportant or even unrelated content.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Simon Dog
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« Reply #34 on: August 21, 2018, 02:16:00 PM »
Nice complaint letter.  I like the part about "propose a solution".

I only filed one once.  I used a 180 filter (106kg edw), and a clinic in TX had (emphasis, had) a policy of "160s only for visiting patients".    The final outcome was termination of that policy.

I pointed out that using a smaller filter on me was no different than me leaving early AMA, and that they work to educate patients to make them understand the later is a bad idea.
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Whamo
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« Reply #35 on: November 07, 2018, 11:54:54 AM »
I got kicked off the transplant list because of skin cancer.  I have a nasty tumor.  They're talking surgery for 10-12 hours that might kill me.  I'm using cannabis oil on it instead.  It seems to be helping.  I'm going to get a stronger strain from my pot head step son.  He knows more about it. Anyone with any experience with cancer and dialysis please share your experience with me.
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kristina
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« Reply #36 on: November 08, 2018, 04:13:23 AM »
Quote from: Whamo on November 07, 2018, 11:54:54 AM
I got kicked off the transplant list because of skin cancer.  I have a nasty tumor.  They're talking surgery for 10-12 hours that might kill me. 

Hello Whamo,
I want to send you my best wishes for your treatment and hopefully your doctors find the best way forward for you. These days doctors can often help with radiotherapy, chemotherapy and some other newly developed treatments and hopefully there is a positive way forward for you & to get back on the kidney-transplant-waiting-list takes just about five years.
I wish you lots of strengths and all the best wishes from Kristina. :grouphug;
P.S. Cancer treatments are no longer as crude and hopeless as they were in the past and many methods of treatments have become very "refined" and don't look any longer as hopeless as they were in the past. Good luck !
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
kitkatz
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« Reply #37 on: January 19, 2019, 07:33:36 PM »
I have been a wild woman posting things on my blog. www.lifenotonthelist.com
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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
MooseMom
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« Reply #38 on: January 20, 2019, 02:21:15 PM »
I do so enjoy your blog!   :2thumbsup;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
PrimeTimer
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« Reply #39 on: January 30, 2019, 10:44:50 PM »
I enjoy reading it too. Hope my comments were attached to the thread over there. I'm still learning...
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Simon Dog
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« Reply #40 on: January 31, 2019, 06:57:04 AM »
20 years ... wow!!
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kitkatz
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« Reply #41 on: February 16, 2019, 08:42:55 PM »
I have posted some of my short fiction writing practices as I work on my writing skills.
I am currently teaching my self how to write fiction properly.
I am using the diy/MFA book for a start.
I am also taking Udemy writing courses as I can afford them.
I study and then I practice writing.
I have a long story I am into writing now also.  Over 6,ooo word written.
I am taking that story slowly into creation.
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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 #42 on: February 28, 2019, 10:18:51 PM »
New dialysis articles are up on my blog:  lifenotonthelist.com.
I have also updated my writing  course I have been doing this year. 
I have posted a few fiction short stories.
Come on over and hang out.
See my artwork. 
See life being lived as a permanent dialysis patient.
Twenty years strong.

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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
PrimeTimer
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« Reply #43 on: March 05, 2019, 10:03:18 PM »
It's a nice easy-going blog. I like it.  :bump;
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
kitkatz
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« Reply #44 on: March 05, 2019, 10:45:15 PM »
Thanks Primetimer.  I am doing March Kidney Month Now on the blog.
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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 #45 on: March 28, 2019, 03:47:43 PM »
http://lifenotonthelist.com/dialysis-fatigue-march-national-kidney-month/
A new post on the blog today!

I write about dialysis fatigue.
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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
PrimeTimer
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« Reply #46 on: March 28, 2019, 08:48:22 PM »
No doubt your article about dialysis fatigue will help anyone experiencing fatigue from anything and not just dialysis. I'll be sure to take notes.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
kitkatz
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« Reply #47 on: April 07, 2019, 08:32:11 PM »
I started a closed Facebook Groupo called lifenotonthelist.com https://www.facebook.com/groups/495826724155937
It goes with my blog lifenotonthelist.com.    It is for Permanent Dialysis Patients and their care givers, plus anyone who is on the transplant evaluation list and wants to talk about it.
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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
superrick
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« Reply #48 on: April 29, 2019, 04:53:29 AM »
I have been told by my unit in Southend on sea, Essex, England, that I dont qualify for transplant because I have to have a black dona such as myself only.
I cant believe that is true as my black buddy had his white wife donate a kidney to him 10 years ago in same hospital and he is fine.
Isn't this grounds for discrimination law suit?? I am currently not being put on the list due to this.....
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That which does not kill you, makes you stronger!!
iolaire
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« Reply #49 on: April 29, 2019, 05:52:54 AM »
Here in the US I’ve read that African Americans have longer waits as there are less donors that are similar to them so there may be some sort of matching or antibodies unique to each race?

But I don’t know why they would no list you and let you wait for a compatible kidney?
« Last Edit: April 29, 2019, 05:58:24 AM by iolaire » Logged
Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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