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| | |-+  POLL: How far would you go to get a kidney transplant?
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Author Topic: POLL: How far would you go to get a kidney transplant?  (Read 19086 times)
Lucinda
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« Reply #25 on: June 29, 2014, 03:20:32 PM »

This is where it is such a personal decision for everyone.  I am on dialysis, have been for seven years, never had a transplant and unless anything drastic changes I never want one.  I don't want to use another treatment when this one works perfectly well for me.  With the exception of a few fistula issues, I know what to expect every day, I am in a routine and generally in really good health.  A transplant would mean a drastic change to my lifestyle.  I live in the sun and outdoors and I don't want that to change. I work full-time with no issues and I am totally happy doing what I am doing.  Personally and I am not saying I am right but I could never ask anyone for a kidney.  My best friend and my ex-partner (even when he was an ex) offered me a kidney and I would never take one from either of them.  They have their own families who might need a kidney one day.  It is interesting how different everyone can be on this subject.
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Zach
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« Reply #26 on: June 29, 2014, 05:37:12 PM »

This is where it is such a personal decision for everyone.  I am on dialysis, have been for seven years, never had a transplant and unless anything drastic changes I never want one.  I don't want to use another treatment when this one works perfectly well for me.  With the exception of a few fistula issues, I know what to expect every day, I am in a routine and generally in really good health.  A transplant would mean a drastic change to my lifestyle.  I live in the sun and outdoors and I don't want that to change. I work full-time with no issues and I am totally happy doing what I am doing.  Personally and I am not saying I am right but I could never ask anyone for a kidney.  My best friend and my ex-partner (even when he was an ex) offered me a kidney and I would never take one from either of them.  They have their own families who might need a kidney one day.  It is interesting how different everyone can be on this subject.

Good to see you, Lucinda.
Love your pic!
 :-*
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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."
Dman73
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« Reply #27 on: June 30, 2014, 07:54:03 AM »

Change my name to Chaney...
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hd 73
tx  87
hd 01

by the yard life is hard by the inch it's a cinch...
noahvale
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« Reply #28 on: June 30, 2014, 08:14:44 PM »

^
« Last Edit: September 19, 2015, 12:56:30 AM by noahvale » Logged
Dman73
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« Reply #29 on: July 01, 2014, 08:30:27 AM »

Noahvale,

Thanks for correcting my spelling of Cheney!

I don't believe that he was listed for 20 months as he was UNDECIDED about getting listed for most of that time but was on the heart pump for 20 months..
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hd 73
tx  87
hd 01

by the yard life is hard by the inch it's a cinch...
noahvale
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« Reply #30 on: July 01, 2014, 08:43:38 AM »

^
« Last Edit: September 19, 2015, 12:55:19 AM by noahvale » Logged
MuddyGurl
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« Reply #31 on: May 12, 2015, 12:59:54 PM »

What all have in common is INDIVIDUAL effort..sole reach out,except for paying to be in a matched service.

Why not collectively group together? fund your own Grant process and allow for potential donor  to see they would have medical costs/life expenses  covered by a third party uninvolved with raging  money per donor.

I see there are a couple foundations who do this, but why not a church, or private group?   Berating 'rich' people? assuming only poor 3rd world people will be ripped off to help just you doesnt make sense. Finding a donor doesnt seem the place to change the world's attitude to injustice and poverty while securing a kidney.

http://www.hafoundation.org/haf/giving-center/create-a-fund.html  < local Foundation creates any type of grant

We have a culture that legally allows removal of an unborn life at many months old,  yet we are squeamish at paying for a kidney?  Money as only "evil", never for good?
Why not force the rich to do a 2fer? they buy one and you get one,  free, from their funds of course.  Since we don't let the ethics of sparing the unborn from life  get in the way of removing them I dont see why money stands in the way to SAVE a life with a willing adult donor.
If one is personally against it, then that stops everyone?

I am just COMPARING ideas here, not railing against the law and Roe V Wade, which has stood for decades, despite what some millions of Americans hate about it. So we obviously support and defend its existence and purpose.   

What if the  fetus could have its kidneys spared, and grown in a vat for later donation? or its pancreas, lungs?
Why does that make us squeamish?   Have you seen the movie   "Never Let me Go"?    with Kiera Knightly and Carey Mulligan.  A sobering view of a monstrous society where unwanted children are raised soley to donate essential organs.. that's right..could be a lung, or an eye, or your heart…no choice in the matter..thats the way this society goes when OLD people are allowed, thru medicine, to live for hundreds of years BUT their organs don't survive that long..where to get new supplies?   Why the bastard children of whores and thieves…this is a POWERFUL movie, don't watch if you are depressed.    This is what happens when government is forced to care for its citizens… and you don't have the right to pay for an organ…..a nightmare. 

 http://en.wikipedia.org/wiki/Never_Let_Me_Go_(2010_film)
« Last Edit: May 12, 2015, 02:06:55 PM by MuddyGurl » Logged
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #32 on: September 23, 2015, 11:38:22 PM »

Since I created this poll I have tried many tactics to find a donor for Jenna.
As you may recall, Jenna had a transplant from Jan 2007 to Sept 2013. She developed donor-specific antibodies, so now she has a PRA of 100%.
She has been on dialysis for 2 years, and waitlisted for 3 years.
She is 29 years old and her kidney failure was caused by a bladder defect that has been addressed.
We know the wait time for a type O deceased donor in Los Angeles is 10 years, so we began a search for a living donor.
In 2012 we made a video, started a donor-search facebook page and posted ads on Craigslist.
A local newspaper journalist saw the Craigslist ads and wrote a story about our search. The next day we had ABC, NBC and CBS at our door to interview Jenna and family.
Because of that media coverage we had 70 people request donor packets. 14 people returned them, 4 were actually potential candidates, but none matched.
We found some other donors from facebook, but none of them matched either. Ultimately three people entered swaps on her behalf in the 3 paired donation programs: UNOS, Alliance for Paired Donation and the National Kidney Registry.
She still got no hits in the swap programs, so she got multi listed to explore desensitization options. After a few months at that hospital we moved to another LA hospital. Desensitization may be the only way, but we are holding off for now.
The organ allocation rules changed in Dec. 2014, and for Jenna, being young and having 100% PRA would give her priority points for a deceased donor.
This may help her eventually, but she still has gotten no hits.
Last week we wrote messages on our cars, and have gotten 6 offers by people who said they will contact the transplant team.
We remain hopeful.


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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
DialysisGoneFOREVER
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« Reply #33 on: October 03, 2015, 07:12:54 AM »

Hang in there Karol! Jenna will get her kidney!

As far as the question goes I would leap tall buildings in a single bound and take a speeding bullet to get off dialysis!
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #34 on: October 08, 2015, 02:59:17 AM »


Hang in there Karol! Jenna will get her kidney!

As far as the question goes I would leap tall buildings in a single bound and take a speeding bullet to get off dialysis!

 :2thumbsup;
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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
DialysisGoneFOREVER
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« Reply #35 on: October 09, 2015, 01:23:44 PM »

How did you get the smileys?? They don't show up on my Android phone.
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #36 on: October 29, 2015, 12:02:52 AM »

How did you get the smileys?? They don't show up on my Android phone.

I have never tried IHD on my phone.
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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
DialysisGoneFOREVER
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« Reply #37 on: November 07, 2015, 10:20:42 AM »

I've have talked to healthy people who say they'd take death over dialysis. It may be hyperbole but you get the idea how much dialysis is HATED!  :Kit n Stik;
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MuddyGurl
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« Reply #38 on: November 08, 2015, 11:43:44 AM »

Failing..I think the reason people  say this is:
 
1. Entrapment..the idea one is never free again is a major one. the concept of planning your life around treatment isn't being considered as doable ..just a visceral feeling of not being 'free'
{if you own a home, have a job, kids or pets to feed you aren;t fee anyway…so an adjustment period of "acceptance" is needed.

2. Fear of needles, blood, pain and medical stuff-- all of it seems alien and scary.

I'm not on dialysis, but could be someday…so I have these feelings based on past Emergency & Surgical experience..being in an ER, lights too bright, unclear on what is happening, pain from needed  procedures, weakness, fear, being cold, feeling you have no rights, can't get a drink, can't turn over, or get out of discomfort..hearing OTHERS in pain and suffering..all of these allow me to imagine dialysis are this way also.  and from the mistakes and problems I learn of here.

I've gone as far as writing "ice" on one hand, and "water" on the other for post surgery communication when my throat is so raw from intubation, or i'm groggy from drugs..going without water is the most desperate feeling. Being reduced to begging or growling for help leaves a permanent fear of  vulnerability, which none of us respond well to...

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DialysisGoneFOREVER
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« Reply #39 on: November 21, 2015, 11:05:34 AM »

I would fly to the MOON if I had to in order to get a transplant!  :sos;
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okarol
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« Reply #40 on: August 29, 2017, 01:10:27 AM »

I think we did almost every item on this except for staying on dialysis and buying a kidney. :yahoo;
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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
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #41 on: November 14, 2017, 10:55:01 AM »

 >:D I saw a cop show on TV once, where someone was killing people, but the police could find no connection between them, the killings just seemed random. Then they found two weird connections between the victims:
(1) They all had the same blood group.
(2) They all carried donor cards.
At the end of the show, the killer was found to be someone who needed a transplant, and was killing suitable donors until he got to the top of the list.

Why don't we have that option on this poll?  ;D
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Notso
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« Reply #42 on: November 25, 2017, 01:20:58 AM »

I would swim a sea of snot.
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Notso
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« Reply #43 on: November 27, 2017, 12:16:36 AM »

I would eat a bucket of scabs.
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Notso
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« Reply #44 on: December 01, 2017, 11:44:00 PM »

But I wouldn't do the other thing.
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #45 on: October 25, 2018, 12:58:36 AM »

When I made this list I didn't think I would ever "Publicize your plight with the mass media (newspapers, TV news shows, etc.) to find a living donor" for my daughter, but that's what we ended up doing. Found her swap donor through Facebook.
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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
Simon Dog
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« Reply #46 on: October 25, 2018, 09:53:14 AM »

Didn't do anything but get on the list.  One relative offered but had enough medical baggage (3 pack a day smoker, drug user) to make his undesirable.  Another made a "soft offer" with all sorts of "I would not want to donate if it only increased you odd a little, but feel free to ask".  It was obvious he did not have it in him, so I did not push.  Got a really good cadaver organ (KDPI 33), doing well now.
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