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Author Topic: What's the Bravest Thing You've Ever Done?  (Read 2579 times)
peleroja
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I have 16 hats, all the same style!

« on: August 26, 2008, 07:23:44 PM »

Other than survive renal disease, that is!

Yup, that's me with the rosie haired tarantula in my hand.  I belong to a senior travel group, and every year we have a mystery trip on Halloween.  In 2006 we had a delicious brunch and then a man brought in a bunch of 'wild" animals, including snakes, iguanas, the tarantula, etc.

So, what brave thing have you done?


 
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RichardMEL
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« Reply #1 on: August 27, 2008, 06:25:42 AM »

Told someone special to me that I loved them....
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #2 on: August 27, 2008, 08:18:04 AM »

Other than survive renal disease, that is!

Yup, that's me with the rosie haired tarantula in my hand. 
So, what brave thing have you done?
 

Ugh! Spiders! Looking at that photo was the bravest thing I have done this morning!  :-\
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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
RichardMEL
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« Reply #3 on: August 27, 2008, 08:21:06 AM »

lol yeah karol... ick... not a fan of spiders or snakes.... yuck!!

Of course we have deadly varieties of both here which could have something to do with it :)
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
kellyt
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« Reply #4 on: August 27, 2008, 08:57:29 AM »

I don't know if you'd call this brave, but even though I look calm this was hard for me!   I only did it because my teen niece had done it and I didn't want to be whimpy!  We were in NYC at the time.

I hate, hate, hate snakes!  They way they look, move, feed, etc.!  I came across a "poor little grass snake" (my husband's words) in my backyard and he died a horrible death when he met my ho!
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
jbeany
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Cattitude

« Reply #5 on: August 27, 2008, 09:15:30 AM »

I did CPR on my father and restarted his heart beat.
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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.

Meinuk
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« Reply #6 on: August 27, 2008, 09:22:29 AM »

Well, currently, I'd have to say that it is going public with the fact that my unit dumped me. Yep, I have never taken such a public and defiant stand in my life.  (and believe me, I have take some stands in the past)

http://www.billpeckham.com/from_the_sharp_end_of_the/2008/08/dumped-by-your.html

Dumped by your unit - One person's perspective

On August 15th, my dialysis unit suddenly closed.  Their home hemo program transferred all seven patients dialyzors to a sister unit (same mega dialysis company) 100 blocks away.  One brief phone call was made to tell me that this was temporary (it tuned out to be permanent for the home hemo program) and I was told that my training nurse would be working out of the new unit.

Imagine my surprise when I was called by the new unit, told that I was a new patient permanently, New Dr, new nurse and that they did not support solo home hemo.  I could either find a new unit or come in center, either way they would shut off my supplies, effectively attempting to end my optimal dialysis care plan of the past 10 months.

Now, I am in the position of having no support for my home hemo - of course, the new unit is willing to bill for having me on their books, but they will not supply the standard of care that has been established for me.  They are willing to bill for "monitoring" me until my supplies run out and then convert me to in center 3x a week. Or, I can find another unit to support me on home hemo self dialyzing.  How can they substantiate billing my insurance company $32,000 a month for service that they refuse to provide?

Their legal loophole?  The FA of the unit was able to dig up their original certification from the State of New York (granted when they were a Fresenius home provider) which precludes them from supporting solo home dialysis.  Well, the State of NY is right, I wouldn't dialyize at home on a Fresenius machine.  I dialyize at home, alone on NxStage, a simple machine, with disposable cartridges.

My training unit was not restricted as far as solo home hemo was concerned, as they had been certified for NxStage.

So, that is my status. I have been dumped by my former unit, just like Topeka.  As for the new unit, I refuse to consent to substandard dialysis, when I have an established level of care in which I am thriving.  As I refuse to sign any consent for the new unit, I effectively no longer have a unit, I no longer have a nephrologist.   The business of dialysis is trying to force me into substandard dialysis, totally disregarding my rights as a single person and ignoring my health.  This I cannot stand for.

I was the home hemo poster child for my unit, I blogged every day of my training, I smiled and did press, I mentored others, I had been a satisfied, healthy, proactive addition to their home hemo program.

At the new unit, I am a number in a chart, they are following their rules and suddenly I am a pariah.  This is not how I expected to spend my late Summer/early Fall.  I am looking for a unit who will take me as a solo patient, and I'll be blogging every step of the way.

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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
willieandwinnie
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« Reply #7 on: August 27, 2008, 09:42:38 AM »

CPR and mouth to mouth on my husband and didn't kill him in the process.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
twirl
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« Reply #8 on: August 27, 2008, 10:22:00 AM »

having my second child
when I was pg I learned she was horribly sick --  not kidneys but a mass in her heart-lung area
although she does have pkd
she had a diaphragmatic hernia - at the time we had no idea what it was
she was in the hospital three months and it was touch and go
leaving the hospital without her was the second hardest thing
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G-Ma
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« Reply #9 on: August 27, 2008, 11:15:32 AM »

My youngest son was strangling (like sids) when he was a few months old and I managed to save him but I didn't think it was brave..any mother would do this.......but I am in awe of all of you..there is no way I would touch a S....but meinuk...I am in shock......oh my God...to be denied something you have worked so hard to achieve and so well.......need to start letter writing campaigns to your state senators and congressmen...this is an election year and could help...make the public see this...none of us can let this happen and it could to any...it would be like they are forcing us to be sicker or worse.
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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
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