I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: okarol on May 24, 2011, 04:25:02 PM
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How far would you go to get a kidney transplant?
I think most scenarios are shown, but let me know if you think of any others that should be included.
Remember: Vote for as many actions as you'd feel comfortable with.
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:bump;
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How far would you go to get a kidney transplant?
I think most scenarios are shown, but let me know if you think of any others that should be included.
Remember: Vote for as many actions as you'd feel comfortable with.
Another scenario:
Publicize your plight with the mass media (newspapers, TV news shows, etc.) and ask their audiences to consider donating a kidney to you.
This works best if you're a show-biz celebrity like Natalie Cole, who has lots of fans who might donate a kidney to save you.
Also works if you're a young dewy-eyed child (which is why telethons parade kids in front of the TV cameras).
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Yes, thanks RightSide - I will add that. :thx;
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:bump;
19 have voted, but no one posted - there should be a setting that bumps the post automatically when someone answers the poll...
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:bump;
19 have voted, but no one posted - there should be a setting that bumps the post automatically when someone answers the poll...
Yes, there's no setting for bumping. Just me. :bump;
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Bump the poll to let more users vote.
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I have sticked the topic, maybe more people will see it.
okarol/admin
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I find it surprising how few people would reach out to a stranger for a kidney.
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:bump;
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I voted for things that sounded like something I would do. Not sure I would actually do them!
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Maybe also add if you would kidnap someone who's walking around with 2 identical kidneys, and refused after promising for years, and then withdrew. If that were legal, I think I would.
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I voted when I first joined iHD as a Pre-D, but things have changed for me, as I'm on D these days.
Any chance of "changing my vote" to reflect the reality of today?
---Dan
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I voted when I first joined iHD as a Pre-D, but things have changed for me, as I'm on D these days.
Any chance of "changing my vote" to reflect the reality of today?
---Dan
Yes, I have edited the settings and votes can be redone!
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I find it surprising how few people would reach out to a stranger for a kidney.
reach out how? You mean the newspaper/craigslist route?
facebook is a way to reach friends of friends....I sent out emails and facebook blasts, and two of my living donors responded to that and matched (others responded and were ineligible).
I probably would not go on tv unless my husband made me, I don't want tons of people knowing all my business....but if things got dire, I'm not above that, maybe I should have selected it.
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Maybe also add if you would kidnap someone who's walking around with 2 identical kidneys, and refused after promising for years, and then withdrew. If that were legal, I think I would.
What?? You have an identical twin who said they would donate then didn't?
As far as how far I'd go to get a kidney I think there's only so much humiliation we can take! I think most people would feel uncomfortable going on TV asking for a kidney unless you were already famous like Natalie Cole!
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What?? You have an identical twin who said they would donate then didn't?
No, not a twin, just a brother who's kidney is a 100% match who did that. :waiting; , but I'm over it now. Thanx for asking.
love Cas
Edited: Fixed quote error - okarol/admin
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(((((Cas)))))
I shake my fist at your brother. That was heartless of him. >:( :(
Glad you're over it. It's all you can do really, put it behind you. Extra hugs from the Midlands to you.
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Ah, and Happy Birthday, Cas!!! I only just noticed!
Another thing we have in common - both Capricorns. Hope it's been a lovely day. :birthday; :grouphug;
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:birthday; :birthday; Cas!
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What?? You have an identical twin who said they would donate then didn't?
No, not a twin, just a brother who's kidney is a 100% match who did that. :waiting; , but I'm over it now. Thanx for asking.
love Cas
Edited: Fixed quote error - okarol/admin
So did you get a kidney from someone else or are you waiting on the list?
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I'm sorry, but either than the two I voted for (wait for deceased or paired exchange) sound weak, pitiful and horrid. Pay to join a site to live? Pay someone to give me their kidney? What are we mobsters? Facebook it up? No, just stop, likes don't translate to money, a like is simply 10101000110101000101010 (etc). Just wait your turn. It's bound to happen. Work towards it, don't just sit and mope like I did.
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Some hospitals are now doing a combination of paired donation and desensitization. This might be the answer for Jenna.
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Some hospitals are now doing a combination of paired donation and desensitization. This might be the answer for Jenna.
That's great! I know my surgeon was excited for what the bone marrow transplant could mean for sensitized patients in the future.
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Out of the 13% who voted "I'd rather stay on dialysis" ... i wonder how many of them have previously had a transplant. Im 1 of that 13% who rather stay on dialsysis, im also someone who has had a transplant thats been and gone.
Before i had a transplant i would of done pretty much anything for one .... Now im back on dialysis, been there done that with the transplant and wont be having another.
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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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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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Change my name to Chaney...
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^
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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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^
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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)
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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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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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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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How did you get the smileys?? They don't show up on my Android phone.
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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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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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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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I would fly to the MOON if I had to in order to get a transplant! :sos;
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I think we did almost every item on this except for staying on dialysis and buying a kidney. :yahoo;
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>: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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I would swim a sea of snot.
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I would eat a bucket of scabs.
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But I wouldn't do the other thing.
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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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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.