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Author Topic: Marvin has been published!  (Read 3659 times)
petey
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« on: November 23, 2008, 04:43:26 PM »
About six months ago, Marvin's clinic asked him to submit an essay on what it's like to be on home hemodialysis for a contest DaVita was having ("Super Star" Patients).  Marvin didn't win the nation-wide contest, but he did place in the top five in the nation.  His essay was published twice -- once in a DaVita publication and just a few weeks ago in "Dialysis and Transplantation" (Nov. issue).  Here are the links to both:

http://www3.interscience.wiley.com/cgi-bin/fulltext/121503279/PDFSTART

and

http://patients.truthaboutdialysis.com/?p=14
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mikey07840
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Her royal highness Queen Ruth on her throne, RIP
« Reply #1 on: November 23, 2008, 04:51:06 PM »
Congratulations!  :bandance; ;D
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06/85 Diagnosed with type 1 Diabetes
10/04 Radical Nephrectomy (Kidney Cancer or renal cell carcinoma)
02/08 Started Hemodialysis
04/08 Started Peritoneal Dialysis (CAPD)
05/08 Started CCPD (my cycler: The little box of alarms)
07/09 AV Fistula and Permacath added, PD catheter removed. PD discontinued and Hemodialysis resumed
08/09 AV Fistula redone higher up on arm, first one did not work
07/11 Mass found on remaining kidney
08/11 Radical Nephrectomy, confirmed that mass was renal cell carcinoma
12/12 Whipple, mass on pancreas confirmed as renal cell carcinoma

• Don't Knock on Death's door; Ring the bell and run away. Death hates that.

• I'm not a complete Idiot -- some parts are missing.
G-Ma
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« Reply #2 on: November 23, 2008, 05:02:23 PM »
Congratulations to both of you.
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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
Rerun
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Going through life tied to a chair!
« Reply #3 on: November 23, 2008, 05:21:25 PM »
The truth about dialysis.... Very well done!
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pelagia
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« Reply #4 on: November 23, 2008, 05:29:34 PM »
cool!  very great article.  :thumbup;
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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 #5 on: November 23, 2008, 05:45:16 PM »
That's terrific.  Thanks for sharing it with us Petey.   :cuddle;
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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
kitkatz
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« Reply #6 on: November 23, 2008, 06:17:45 PM »
Awesome.
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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
David13
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A meow massages the heart.
« Reply #7 on: November 23, 2008, 06:23:26 PM »
Great work!  It is always best to hear it straight from the patient's perspective!   :2thumbsup;
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“The first human being who hurled an insult instead of a stone was the founder of civilization” - Sigmund Freud
okarol
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Photo is Jenna - after Disneyland - 1988

WWW
« Reply #8 on: November 23, 2008, 06:30:51 PM »


I posted the recent one here http://ihatedialysis.com/forum/index.php?topic=11221.0
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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
Sluff
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« Reply #9 on: November 23, 2008, 07:13:19 PM »
Good Job Marvin.  :thumbup;
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Gramapat
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« Reply #10 on: November 23, 2008, 10:39:34 PM »
Wow!  That's good Marvin!  It "almost" makes me want to try home hemo.  ;D
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rose1999
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« Reply #11 on: November 23, 2008, 11:53:05 PM »
Fantastic, well done Marvin, great article. :2thumbsup;
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Lucinda
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Life is great!
« Reply #12 on: November 24, 2008, 01:49:47 AM »
That was terrific Marvin.  Well done.
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idahospud
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« Reply #13 on: November 24, 2008, 02:24:49 AM »
:bandance; I Reilly like reading this . The Dr's Reilly wont me to do home but Ive bean sacred and whored I wooed not babel to do it but after reading your story I fell better about it ! Thanks :thx;     Carol
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willieandwinnie
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« Reply #14 on: November 24, 2008, 04:49:53 AM »
petey, how wonderful is that. Give Marvin a big  :grouphug; from us.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
Slywalker
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« Reply #15 on: November 24, 2008, 10:10:57 AM »
 :yahoo;  Yeah for Marvin and Petey!!!  Great article and nice picture.  Isn't life grand?   :cheer:

Hugs to both of you

Sandyb

 :bunny:
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Meinuk
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« Reply #16 on: November 24, 2008, 12:50:47 PM »
Petey,

That is great!  What a nice essay, and picture too!  You are both great examples of living and thriving when CKD strikes your family.
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Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
Zach
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"Still crazy after all these years."
« Reply #17 on: November 24, 2008, 01:02:35 PM »
Excellent!

8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
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