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Author Topic: What's the Best Way to Ask Someone to Donate a Kidney?  (Read 22961 times)
okarol
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« on: September 27, 2010, 12:32:41 AM »

What's the Best Way to Ask Someone to Donate a Kidney?

Most potential recipients can't imagine asking someone to consider donation. It is not uncommon to also feel that if someone really wanted to donate, they would have come forward on their own. Yet, the truth is that no one can offer to help you if they don't understand your situation, or the unparalleled benefits of living donation.

First and foremost, your friends and family need to be made aware of your declining renal function. They also need to be educated to understand the best treatment options. Most people need time to understand your situation and what's involved in the living donation process. For that reason, it is generally best not to ask if someone will donate straight out at first.

Allow your family and friends enough time to process their own reactions. So instead of fretting over how you should ask someone, simply focus on sharing your story (or the story involving the person in need) to increase awareness of the living donation opportunity. Your story might spark enough interest and intrigue on its own, without ever having to ask someone directly.

When you find your conversations need some help to get to the next level, refer to the Talking Points that follow Step 5. Also refer to the Sample Script as a guide to help you write your own script.

What's the Best Way to Get Started?
Elmer Letterman once said, "Luck is What Happens When Preparation Meets Opportunity." That being said, before you get started, commit to learning as much as you can about preemptive kidney transplants and living kidney donation, so you'll be well informed before engaging others.

By organizing your thoughts and preparing sample "scripts" and "reaction scenarios," you'll be able to rehearse sensitive situations and keep your emotions in check. Just as actors have to rehearse their lines, you're wise to become intimately familiar with what to say and how to say it. Rehearsing also allows you to respond to potential donors appropriately, and keeps uninvited emotions at bay.

Follow the five steps listed below to help you stay organized and on task. These steps were designed to expand your circle of influence as you begin your living donor search. Our aim is pure and simple. We want to inspire donor recruitment through a more user-friendly process. Now, it is up to you. Follow these action steps and start living a more meaningful life today.

Step 1: Enlist A Health-Advocate Buddy
Let’s face it. Most people are uncomfortable asking others to consider something that could put them in harm’s way. So recruit a health advocate friend (or a team of them) to partner with you so you don’t have to go it alone.

Third party recruiters can be your best voice. It is far easier for some who cares deeply for you to discuss this delicate subject than you can yourself. Approach caring individuals who have emotional savvy and intelligence and invite them to join your team.  Be sure to enlighten these recruiters with your story and educate them about the living donation process. That way, they can share accurate and compelling information about living donation, your particular situation and your need for a kidney.

Step 2: Create a List of Potential Donors
While you’re forming your team of recruiters, also create a list of everyone you know who may be a possible donor. Include family members, friends, work associates, colleagues, and individuals you know through professional organizations and through your church or synagogue. Don’t prejudge them on how compassionate or healthy you think they are; just make a list. You can go back and assess the list after you’ve compiled all the names.

Step 3: Refine Your List   
As you assess your list, highlight the names of those you sense are brave and healthy. Perhaps you’ve seen them show acts of kindness in the past. Consider those involved in professions such as law enforcement, the military, or fire fighting. These brave heroes might be naturally inclined to consider donating a kidney.

Step 4: Develop an Approach Strategy
Assign your recruiter(s) to contact specific people on your list. Once you’ve determined who will ask whom, discuss the best approach on a case-by-case basis. Each potential donor may have a particular preference for how to communicate, especially about something this sensitive. Combine your intelligence with your intuition to determine the best approach.

Step 5: Send a Group Email Announcement
Consider sending a heartfelt email to all the names on your list regarding the individual in need. This is where you share your personal story and engage others by asking them to help you spread the word. A group email will not only enlighten others about the need for a living donor, it will also expand your circle of influence. You may be surprised by the response, as emails of this nature have prompted potential donors to come forward to learn more.

Step 6: Create a Written Intention Statement

Create a written intention statement. Using law of attraction principles, describe your ideal donor offer. That’s right. I’m asking you to take a leap into the unknown, as if you already know what will happen. To do this you must stay focused on your ideal outcome, and "act as if" it's already happened.

Start by transforming your hopes and dreams into written affirmations. Write with confidence and express your gratitude throughout your journey. For those who've never visualized before, your first step might be to simply dream-up how you’d like to see your donor offer(s) unfold. Simply imagine your ideal donor revealing themselves to you. State all the positives you can imagine. Keep your focus of attention on what you ultimately desire. Stay focused on your blessings, rather than your illness - or what you don’t have. (There’s a HUGE difference!)

Now try to articulate what you envision into the written word, as if it was fact rather than a wish. This is a very powerful exercise. Feel free to tweak your statement as many times as you'd like until you feel you've communicated the ideal outcome.

Still skeptical? Talk to our founder and leading light "patient advocate coach" to see how this process transformed her life within 10 days of this exercise, by requesting more information on our 'CONTACT US' page.

Develop Talking Points:

As it becomes known that you or your loved one needs a kidney transplant, more opportunities to share your story will present themselves. While sharing your story, you may also get several chances to engage listeners in a conversation. One way is to ask them about their philosophy on organ donation in general. Also ask how they’d feel about donating while they’re still living rather than waiting until they’ve passed.

If they seem open to the concept of a living donation and you sense it would be appropriate to delve deeper, continue by asking if they’d consider being tested to see if they might be a match. It is extremely important to let them know their responses will be kept confidential and that, no matter how they respond, what they say will not affect your relationship.

Remember, it may be easier for your health advocate buddy or team members to ask indirectly so potential donors will feel less pressured or less feel guilted into saying yes. Similarly, hearing a strong negative response could be overwhelming to the person in need, if heard directly. That’s why we advocate having a buddy as a liaison to facilitate this process. When you have recruiter-friends and recruiter-teams communicating for you, they can use their emotional intelligence to soften the delivery of a disappointing response.

Your Ultimate Goal

The ultimate goal is to build interest by eliciting curiosity and increasing awareness. How can you do this? By encouraging your listeners to ask questions, lots of them. In doing so, they might introspectively gravitate toward considering a living donation themselves. When this occurs, capitalize on the opportunity to ask them if they would talk to the recipient's donor transplant coordinator to learn more. If they already know their blood type, that’s great - but even if they don’t, a simple blood test can be done to find out. 

Remember that blood type matching is not necessary in paired donation, so don’t quickly disqualify potential donors because their blood types aren’t the same as the person’s in need. Instead, explain that they can be paired with another donor who’s a better match through a paired donation program.

Scripting Your Story

We suggest creating a storyboard or script with compelling points regarding your story (or your friend's, family member's or loved one's situation). Naturally you’d use your own style of speaking when “delivering” the script.

Here’s a sample script to help you kick-start the story which your recruiting team will convey to others. Be sure to customize the verbiage to fit your situation.

    My friend Risa inherited a genetic kidney disease,  known as Polycystic Kidney Disease  (PKD) which is rapidly squelching her remaining kidney function. Since PKD has no treatment or cure, Risa only has two options: (1) get a kidney transplant, or (2) spend the rest of her life on dialysis. While transplant is the superior quality-of-life choice, it can be the most challenging with nearly 86,000 people waiting ahead of Risa on the national kidney transplant list.

    Sadly, the average wait on this list can be five years - or more. And while I thought I was already doing my part by declaring my intentions to be an organ donor (on the back of my driver’s license), I now see our nation's organ shortage cannot rely on deceased donation alone.

    Through living donation, a healthy (living) person can donate one of their kidney's, and still  live a wonderful healthy life. Kidneys transplanted from living donors also offer a number of superior benefits to the recipient, from greater success rates to nearly double the years of function!

    Living donors also help those in need get a healthy kidney (when they need one most); which prevents them from getting sicker (or risking death) while waiting for a  deceased donor from the national transplant waiting list.

    Truth be known, I was hoping I could be her donor, but they say I'm not her bloodtype - or even healthy enough if I was.  Since I can't donate, I'm determined to expand Risa's circle of influence by increasing awareness. Would you be interested in helping me share her story so we could expose the heroic opportunity in living kidney donation?   

From: http://www.kidneykinships.org/Best_Way_To_Ask.html
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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 #1 on: September 27, 2010, 01:40:51 AM »

Interesting to contrast this, to what I was told at multiple transplant semninars put on by my hospital renal unit.

They informed us to NOT ask potential donors for a kidney because that would put undue pressure on them and they had to come forward of their own free will - part of the psych evaluation si that they're doing this freely without any pressure being brought to bear on them by the potential recipient.

I agree with the point that how can folks even consider coming forward if they don't really know what is going on, how serious the need is, etc so this creates, I think, a very thin line sort of thing. I mean I am a very open person when it comes to this stuff. If someone asks me I'll tell them, but where does the being open about the situation cross the line of "I need a transplant...." then then making someone, perhaps, feel guilty that they should do somehing.

I was told a number of times by the transplant co-ordinator to not mention that stuff - even to family members. My sister, who is a match to me, seemed very disinterested in the whole thing prior to be starting D, and I felt I couldn't explain to her how dire my need was for her to perhaps consider being tested. It didn't help that our mother passed away less than six months before I wound up starting on D  - after that she was still disinterested. I actually think though that after visiting me at D a few times, seeing the machine, finding out more about my diet and fluid restrictions and how it really put my life on hold, stopped me travelling the way I wanted, and so on... that she obviously thought about it and stepped up about a year or so after I started D. That's all i could have asked of her, and she did all the tests but was eventually denied at the last hurdle... but she did step up. My brother too... so they did, in the end, do all that they could.

It's interesting to read the differing opinions on this very delicate subject.
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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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« Reply #2 on: September 27, 2010, 01:55:12 AM »

Yeah, that's the main point of the article, don't ask.

... it is generally best not to ask if someone will donate straight out at first.

Allow your family and friends enough time to process their own reactions. So instead of fretting over how you should ask someone, simply focus on sharing your story (or the story involving the person in need) to increase awareness of the living donation opportunity. Your story might spark enough interest and intrigue on its own, without ever having to ask someone directly.

Logged


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
MooseMom
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« Reply #3 on: September 28, 2010, 11:51:38 AM »

I get emails from different family members who ask me how I am doing and then go on to tell me they are praying for me.  These are all church going people, but no one has offered to even be tested.  I guess they think if they pray hard enough, someone ELSE will come along out of the blue and offer to at least be tested.  I share my story often, but I guess they are all still "processing".  Maybe the next time they go to church, they'll "process" a bit more. 

I don't expect anyone in my family to offer, but I don't expect them to ignore it, either.  I would so much rather someone say, "I wish I could donate, but I am too afraid to."  At least that would let me know that someone even considered it.

I have a cousin who has had a kidney transplant, an aunt who was on dialysis, my mother who was on dialysis, and then me who is headed that way, so it's not like my relatives don't even know how to spell k-i-d-n-e-y.
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RichardMEL
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« Reply #4 on: September 28, 2010, 07:14:33 PM »

Gee MM that's tough  :grouphug;

I agree - it would be nice to have someone be honest enough to admit fear or something, but it does seem that they're thinking/hoping/expecting someone ELSE will step up. Aren't most religions supposed to support things like donating to your common man, love thy neighbour, etc? Guess the message is lost on them.

The mind does boggle that much more when there's family history - so it's not like they can say they don't have any idea what the deal is, or what's needed. That reminds me of a ex girlfriend  of mine. Absolutely wonderful woman. I loved her to bits... would have even proposed at one point (but we had a difference of opinion on children).. however we were dating around the time when starting dialysis was looming large for me and I was having a bit of trouble coming to terms with it and needing some support. Now this girl has a sister who has had TWO transplants (I note also in a family with 5 girls and one boy nobody apparently offered to donate there to her..?????!) so anyway this woman had some idea of the issues involved... yet I felt almost zero support from her in terms of what I was going through. I know in my head there's little she could have realistically done for me at the time, but even if she'd just said "Yeah my sister found it tough to deal with. If you want to talk about it..." or something. Heck, she didn't even offer to get me and her sister talking to get a first hand perspective on things. I found it just strange that someone who had family experience of everything I was, and would be, dealing with, that I felt very little empathy. Don't get me wrong, I still love this lady to bits (well she's married now with a kid...) and she will always be very dear to me, but at that time I certainly wasn't feeling very supported. As a sad sidenote her father had to start dialysis himself a year or so after me. That sucks totally.

Again with nobody stepping up - I've related this one before on here - but I have 3 cousins. 2 of them are medical professionals, and their father (my uncle) actually does live kidney transplants at my hospital(how ironic!)... has one of them put their hand up or even SAID anything??? NO!!! Indeed when my sister was being tested, and she and I had to go in for the psych test we actually met by chance one of them who was at that stage working in the hospital. He seemed surprised to see us and asked what we were doing there. When we explained he just looked blank and said nothing. I mean.... wtf???  :urcrazy; :urcrazy; :urcrazy;

I'm not bitter about that - that side of our family have always been very distant - it's just disappointing that's all.
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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!
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« Reply #5 on: September 29, 2010, 02:19:10 AM »

I think I probably shot myself in the foot on this one, because for years I was adamant about not wanting a live donor kidney because I had already lost 2 kidneys, and I wasn't sure (still not, really) how I would go about telliing the person that I'd lost their kidney if it should happen again.  In the last 2 years, I've changed my mind.  I'd take just about any kidney if it was offered to me.

My little brother would probably give me one, but I know that he's afraid of the operation, and I think that for that reason, he'd probably be denied, because it would seem like he was being coerced.  We don't even know if he'd be a match.  We don't know what his blood type is.

My family is very close knit, and when we have get togethers, they're always full of questions for me about how I'm doing so I know that they understand a bit of what I'm going through.  About a year ago, I sent a facebook message to all my cousins who were old enough to donate.  I explained that I was getting sicker over time, and asked if they would consider getting tested, just to see if they could match, and anything after that was totally up to them.  I got one response, asking me what they needed to do.  I told her that it was just a blood test.  I've heard nothing else from her or any of the others.  My mom was pissed, because she knows that if one of them was in trouble, we'd be expected to help out, but they didn't bother to say no.  I was more disappointed, because I know that they see my pleas for sanity and the pictures I post of the lines on facebook, so they know what I'm going through

My grandfather's birthday is coming up.  Maybe I"ll try talking to the cousin that responded while there.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
MooseMom
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« Reply #6 on: September 29, 2010, 07:04:47 AM »

Oh Richard and Riki, family can be so disappointing, and I am so sorry that you both have felt that pang.  I just sometimes wonder at people, I really do.  But I have a story that is going to amaze you.  I probably shouldn't post something quite so personal, but it's just so bizarre that I don't really care.  I have a half brother; my dad was married before he married my mom.  1/2B and I have never lived together; he's 13 years older, had a separate life with his mom and stepdad and a younger brother.  He and I have never been close, but we've always been friendly.  Long story short, when our dad died, he left everything to my mom for her to do with as she pleased.  Quite right, too.  Well, when she learned that I was ill enough to have to get on the transplant list, she changed her will this past March, leaving 1/2B (who, remember, is no blood relation to her) a big bag of money and the bulk of the estate to me.  Remember, she was on D herself, so she understood the rigors of it.  It bothered her greatly that I was having surgeries and preparing for D and she was not well enough to come up to Chicago to help out, so her way of helping was to leave me money.  Greatly appreciated.  She passed away just a few months ago, and this change in the will came to light.   1/2B decides my mom has betrayed and cheated him out of what he KNOWS my dad would have wanted, and he has asked me to share because he wants to buy his wife a new house.  I have ESRD and an autistic son, and HE wants to buy his wife a new house.  I don't know exactly what will be left of the estate after all bills are paid, and when I explained that, he just ripped into me.  I've never ever seen this side of him.   And no, he's never offered to be tested, and his 30 year old son hasn't either.  But I'm expected to give him money that my mom left me to help me through ESRD, but so what as long as his wife gets a new house.  I'd like a new house, too.  So, I have one set of relatives who seem clueless and another who has become downright antagonistic because he wants me to give him money.  I'm disappointed bordering on bitter.  I admit it.
« Last Edit: September 29, 2010, 07:06:46 AM by MooseMom » Logged

"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."
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« Reply #7 on: September 29, 2010, 07:13:31 AM »

Oh oh oh...here's a question!  My mom's parents retired to a beach cottage on the Mississippi Gulf Coast.  Miraculously, that house has survived two major hurricanes.  They gave the house to my mom, and for all these years, she has used it to host family gatherings.  Now that she is gone, we've decided to have one last Thanksgiving there.  Because I lived for so long in the UK, it has been a long time since I've celebrated such an American holiday with family, and I've never had a Thanksgiving with anyone other than my parents (or my husband).  So, I will be seeing a fair amount of family members in November, and it will be the first time I've seen them since getting on the transplant list.  I am trying to think of various ways to gently let them know my plight.  Do I make sure my cell phone is always in full view "in case the transplant center calls"?  :rofl;  These familiy members' grandmother was on D, so they have some idea of what's involved, so I don't have to start from scratch.  lol  Do I bother hiding my fatigue and nausea, or do I fall asleep in the cranberry sauce just to make a point? :clap;  Any subtle (or not so subtle) suggestions?  I don't want to be manipulative, but...well...maybe I do. >:D
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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."
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« Reply #8 on: September 29, 2010, 08:24:21 AM »

MM.. seems that money always seems to get in the way and make things difficult. In my own family my mother, who was 7 years senior to her brother (my uncle the urologist who does transplant work) and he looked up to her a lot when growing up. She did so much for him and yet the way things went he became more distant. I personally feel it was because he married a woman who, while quite a lovely and decent woman, was very class conscious. She married a doctor, she wanted to live a certain lifestyle - the big house, kids at the best school, society parties, etc etc. Our side of the family had always been much more modest in such things. Now that we lived horribly or anything, but just not into all that. I would say we lived as reasonably comfortable lower middle class, while the other side were more the upper class. Well, my mother, ever the considerate person needed to do a property deal - I forget the exact details - but she needed to borrow some money, on a short term basis, from her brother to help get the deal done. What did brother dearest do? HE CHARGED HER INTEREST ON THE LOAN!!!! I mean... REALLY?!?!! Your own SISTER??!! WOW!! I had to deal with a lot of the financial estate stuff after my mum passed away and it made me SO angry what he did(and worse that she went along with it).... as you can tell there are reasons our family is split. oy vey!

ANyway about the thanksgiving thing... I actually wouldn't play the "phone's always on in case the transplant center calls" card because it could easily be interpreted that oh everything's in hand and this will happen and that's the "problem" solved. While I think WE all understand that significance it would be an easy and rational excuse to not realy consider what you need. That's just a thought though. Damn me I've even felt I've had to explain the phone thing when I've.. ahem... had company.... like "I need the phone on all night... just in case"

You could go all "Temple of Doom" on their asses, and serve everyone a plate of lambs kidney or something... leave your plate empty. "I need one!"  :puke;

I wouldn't hide the fatigue and nausea. Gosh if you're hosting that's a hell of a lot of effort and if they DO ask you at gatherings how you are.. I don't see why you should try and hide what is really happening. If you feel like crap and need to sit down, take a break.. just say. At the very least hopefully someone will up and help out with the food!

If you didn't want to be subtle you could give a little speach about with dialysis looming you're not sure where you'll be at next thanksgiving (that may seem a little melodramatic, but it's not too far off the mark - from a certain point of view).

Maybe you could just honestly talk about how you feel about waiting for that amazing gift of a transplant. Talk honestly about how long the wait could be "... unless I can get a live donor" (hint, unsubtle, hint!) and that sort of thing. Talk about how good it will be come transplant and all the plans you have for things that you just can't do anymore, or will be much harder with D.

I don't know. thinking about it it's pretty difficult!
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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!
MooseMom
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« Reply #9 on: September 29, 2010, 09:10:21 AM »

Very good point about the cell phone.  You're right; I suspect that there are those who think that because I'm on the transplant list, then it's "problem solved".

There are all kinds of little speeches and subtle hints that I've been practicing in my mind!  At the end of the day, no one may offer to be tested, but they won't be able to ignore me, either.  I can be gentle and subtle yet precise in my intentions... :2thumbsup;

Everyone I know has told me that my mother was the kindest, most thoughtful person they had ever known, so I was particularly appalled when my 1/2B accused her of not having any consideration of either him OR our father's wishes.  She thought enough of him to give him a sizable bag of money, but no, he was insulted by her gesture.  Money has a way of making people show their true colours, I suppose, as you so painfully discovered yourself.  Your mother must have been gutted; I can't believe her brother turned out the way he did.  Perhaps his wife influenced him, which is ironic because I suspect my 1/2B's wife is behind all of this, too.  Very creepy.
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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."
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« Reply #10 on: September 29, 2010, 05:46:52 PM »

Maybe I wouldn't focus on transplants as such, but I would find an opportunity to talk about dialysis while all present are listening, and perhaps I would describe it in graphic detail.  It isn't hard to get graphic when describing dialysis, I've got it down to a one minute description and its just hilarious how people blanche and freak almost straight away.  Describe it in the context of your mother perhaps, and then describe your feelings about facing dialysis.  And at the end, a comment about how long some people you know have been waiting for transplants.  Might give them something to digest along with their port and cigars.  When people hear about a bad thing they then try to fix it don't they?  Sometimes?  And realise (bing!) where transplant fits into the equation.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #11 on: September 29, 2010, 06:32:45 PM »

I like that. You could then add little "factoids" like the better success rates(long term survival of the kidney I mean) for live transplants, that it can be scheduled with less disruption to all concerned, and yes, that with the wait list you just don't know how long it could be - almost certainly years (this is one time to NOT discuss dear Paris' gift!).
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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!!! :)

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« Reply #12 on: September 29, 2010, 07:11:14 PM »

I like what the article says suggesting you enlist family and friends as your team to help get your story out there, so that if someone is interested in being a donor, they will get in touch with them or you. Write it up (with the factoids, as suggested) and hand it out. I know you're not in the US but these stories get around, thanks to the internet.
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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
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« Reply #13 on: October 28, 2010, 01:05:46 PM »

This is kind of an old thread but I'll add my experience.  I have 4 sibliings, and although I wouldn't say we're close, we are all on friendly terms.  I never wanted to ask them to donate, because I know they understand my situation, 13% gfr and declining, and I figure people will come forward if they want to.  One of my brothers is even a dialysis technician, so he knows what that looks like (although I am still pre-dialysis myself).  But my wife thought that I need to ask them.  I refused, but the argument would resurface time and again.  I mean she is INSISTENT.  Fellows, you know what I mean.  So finally I give in.  Reluctantly, I call and say in so many words, can you help me out.  To make a long story short, I ask 3 one-by-one and they all turn me down! Once is bad enough, but to ask something like this of family and be told No 3 times is just really disappointing and left me felling bitter.  No specific reason was given- it was just too much of a burden, I guess.  After that, I couldn't bring myself to ask the 4th sib.  Now, if the situation were reversed, I can't guarantee that I would give them a kidney. But probably I would.  I would definitely talk about it, at least!   

So I think presenting hints and factoids, as others have suggested, are good ideas.  But as far as coming right out and asking someone to donate... well of course it depends on the relationship, but I wish I had not done it. 
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« Reply #14 on: October 28, 2010, 01:44:16 PM »

Oh Babolat, that's just brutal.  I can't imagine how you must feel.  I mean, to even have to ASK is rather awful, but then to be turned down is almost unthinkable.  I am not on dialysis yet, so I can't claim to be absolutely desperate, but as of today, I think I would be so afraid of someone saying "No" to me that I wouldn't even risk asking.  The consequences of a family member refusing are just too great.  I'd prefer to wait my turn on the list for a cadaveric kidney.  Now, if I was asking on behalf of my son, that's a different story, but to ask on my own behalf...I don't think I could do it.  I am no saint, and I think I would be so hurt and disappointed at being refused that my relationships with these family members would suffer.  Actually, the fact that no one has offered hurts me to the extent that I don't want to risk an outright refusal.

So now that you asked and none of your sibs agreed, what does your wife think?  I'm sure she had your best interests at heart, but I have to wonder if she ever thought about the consequences of refusal.
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« Reply #15 on: October 28, 2010, 01:50:36 PM »


I agree, do not ask. If people do not come forward, that is their choice. To ask puts pressure on them and it's really not fair to do so.
I posted it elsewhere but will add the link here. There are webcasts that are very informative called:
"Having your donor find you."

Webinar & Workshop Overview
The Living Kidney Donors Network (LKDN) Webinars and Workshops have two goals, to educate you about living donation and to teach you the skills to effectively communicate your need to family members and friends.

What You’ll Learn
The information discussed is divided into two main segments; the first educates you about living donation. The second discusses effective communication techniques you can use to let others know about your situation. The LKDN webinars and workshops are taught by kidney transplant recipients and donors. Peer assisted learning has proven to be a very effective model.

Educational Component
The more knowledgeable you have about living donation, the more confidence you’ll have in talking about it. Over the past few years, medical advances have totally changed the transplant process for the donor and the recipient. You will learn about these changes which will give you a new and more positive outlook on the whole transplant process.

How to Communicate Your Need to Others
Having the knowledge about living kidney transplants is important, combining that with good communication skills and information on how to let more people know about your need for a transplant will increase the likelihood of success.

If you would like to listen to a recording of a recent LKDN Webinar http://lkdn.org/webinar_recording.html
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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
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« Reply #16 on: October 28, 2010, 02:24:56 PM »

I've been nearly 7 years on dialysis now and my family knows what I do.. I have an uncle (thank God he's married to my Mom's sister and isn't actually related) and every time he sees me he asks, "so did you get that kidney yet?" I always feel like hitting him with something.  He's never said it when my mother was around, cuz she would have killed him
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
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HD - Dec 2008-present
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« Reply #17 on: October 28, 2010, 02:33:08 PM »

MooseMom,

Yes, I agree with you completely.  It was bad enough that they weren't coming forward but I wish I had left well enough alone.  I'm having a hard time "forgiving and forgetting" and I think this is something that will bother me for a long time.  I have two sons myself, and, like you, I would ask on their behalf as well.  My mom never did that, and that's another thing that hurts.  Why didn't she say, "Is there anything you can do to help your brother?"  I guess in my family there are just some things you don't talk about.  As for my wife, she was just appalled.  I think it never occurred to her that the answer would be no.

Anyway, the heck with them!  I'll take my chances with the cadaveric list.

Thanks for the feedback!
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« Reply #18 on: October 28, 2010, 02:49:26 PM »

I have a mother and one brother both with diabetes.  I have three daughters.  I would never have asked one of my children or anyone else for that matter.

My wife wife offered to donate without hesitation and to enter into the kidney swap if she was not a match.  We were a blood match but 0 of 6 antigen match.  I was transplanted 7/22/10.  I never asked her or even discussed her being a donor.  She stepped up and did it of her own accord.  I was actually against it at first but we talked and agreed and went ahead with it.  She is a jewel!

Has your wife offered?
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Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

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« Reply #19 on: October 28, 2010, 03:24:41 PM »

I am sorry to hear of your experience, Babolat. It's too bad that your wife did not think to ask them for you, and then if the answer had come back a flat 'no', she could have just dropped the issue and you would not have been the wiser. Yet, I guess I know exactly what you mean when you say she probably never saw that coming. Are you certain your mother did not ask on your behalf?

I don't think Gwyn originally volunteered, I am pretty sure I just assumed he would be my donor. I remember after having my first child and the utter fixation the first hospital had with labeling me high risk (I really wasn't) and monitoring everything, I needless to say had kidney failure on my mind shortly after he was born. I once asked Gwyn if the baby and I both needed a kidney, what would he do? I think that was probably the first time we discussed it as if his donation at some point were a given. He said he would give to the baby. That actually hurt my feelings, but then I was pretty worn down with getting used to being a parent, so emotions were not at their sanest from either of us! In the end, I was the one who insisted on getting both of our children checked for kidney issues before I would accept his donation.

So, while I agree that it's not the best idea to go around asking anyone and everyone, for those to whom you are closest, I think it is fine. I had a friend who offered and I thanked her profusely and was so very grateful, but said in the end that I was hoping that Gwyn would donate to me (he and I were a better match, so that alone made it the smarter choice). Our friendship has never really been the same and we don't keep in touch. I always sensed that I offended her.

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« Reply #20 on: October 28, 2010, 04:35:08 PM »

There are so many frustrating stories about relatives not wanting to donate.  I have a few myself, but the most amazing story came from a friend on Facebook who offered to donate to me and she had not seen me in years.  She was the wrong blood type but that kind of restored my faith in humanity a bit.

I have a large family and the only one who offered to donate was my younger brother,  Everyone else just ignored the issue.  I was alive and functioning so to them I'm fine. 
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Diagnosed with FSGS April of 1987
First Dialysis 11/87 - CAPD
Transplant #1 10/13/94
Second round of Dialysis stated 9/06 - In Center Hemo
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« Reply #21 on: October 28, 2010, 04:57:39 PM »

MooseMom,

Yes, I agree with you completely.  It was bad enough that they weren't coming forward but I wish I had left well enough alone.  I'm having a hard time "forgiving and forgetting" and I think this is something that will bother me for a long time. 
I understand this entirely and would feel exactly the same myself.  This is why I have never asked anyone.

Quote
As for my wife, she was just appalled.  I think it never occurred to her that the answer would be no.
I'm almost certain you're right.  I bet she feels pretty rotten.  I know I would.

Quote
Anyway, the heck with them!  I'll take my chances with the cadaveric list.

That's my plan, too!
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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."
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« Reply #22 on: August 22, 2011, 09:07:32 PM »

I have never asked anyone to donate a kidney. Mostly because I thought (like the article said) that if someone is interested, they would come forward.
I have, however, had 2 offers made.
The minute that I told my Mom she said she would go get tested. I told her absolutely NOT! (My Mom was 83 at the time ( she's 85 now).
The second one was not said directly to me but to a good friend. There is a woman at my Church that expressed interest in finding out about donating. I was shocked but I also know that she would not be accepted. She would not pass the psych exam. I'm not being facetious, she has been in & out of the mental health care section of the hospital several times a year since I have known her (almost 20 years).
I did think about contacting the NKFI (National Kidney Foundation of Illinois) They have a bus that goes around to different functions and offers free testings for various problems that could affect your kidneys. I thought if they would come and set up at our Church, we could get the word out to the community. (I live in a very small town in rural IL) That way it would be "generic". People might be more inclined to ask questions without feeling that I might be offended. :sos; I'll have to think on that a little more but it might be worth a try. :pray;
Any one have any thoughts on that approach?
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« Reply #23 on: August 22, 2011, 09:54:36 PM »


I think it's very hard for a person who needs a kidney to share the details about their situation with others. That's why an advocate is better; a friend, relative or acquaintance who helps tell your story to let friends, family, church, alumni, social media, message forums and neighbors know that you need a kidney transplant. You never know where your miracle will come from. The wait time here in Los Angeles is 10 years for a deceased donor kidney - so I plan to actively work to tell Jenna's story, and hope someone will offer to be her donor.
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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
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« Reply #24 on: September 05, 2011, 01:34:55 AM »

When my neph told me to make enquiries as to live donors, i didn't have a clue how to ask people if they would get tested for me, I mean, its not like asking to borrow money or even a car for a day... Its asking for a part of their body.

I called a family meeting and told them in layman's terms what was happening to me and what my options were... Dialysis...Transplant...Death... I had to put it bluntly because to be honest they are all clueless (well most of them), out of sight out of mind i guess (i live about 6 miles away from them all)...
I ended up breaking down and through sobs i told them that i didn't just need a kidney, i needed emotional support also. Even just a phone call to see if I'm doing OK. " I cant do this alone" i sobbed " You wont have to " my step mum said ......
I then gave them all leaflets about live donation and the transplant co coordinator's contact details and told them that if they were willing to get tested they needed to make the first move and contact her!

An aunt, who was going to adopt me as a baby, (long story) said to me " I cant give you a kidney, i couldn't take that much time off work " " I cant come over and see you you live too far away " .....  :(

An uncle, who gave a speech at my wedding said " So are you going to sort all this out for us then?" ... " erm No you need to contact her"

"when do you NEED a kidney" " NOW... but when they can get it all sorted, that will prob take up to if not more than 6 months"....

.... Then my dad turned up after dropping his grandson off to my sisters house...( she didn't bother to show up ) Never said a word about why we were all gathered together...He hasn't even mentioned that i am ill.  :stressed;

Now, fast forward a couple of months and I have found a potential donor  :yahoo; He is a 3/6 match and is currently waiting to have a scan on his kidneys. He is also a distant cousin whom i hardly ever see, but have always got on really well with. He sent me an email, as soon as he heard that i would need a transplant offering his! Within an hour of him getting the call to say he was a match he has sorted things with work as to when he will need time off and is currently getting into shape for the op  :bow;

My family? I haven't heard a single peep out of them, They haven't even text me to see if I'm doing OK, even when i got admitted to hospital to get a neckline put in to start dialysis they never rang, text or visited... Oh my stepmum text me to say they were working and then going away for awhile they will see me when they get back... I'm still waiting!

So yeah Families suck!
I'm just thankful that i have my darling husband who supports me on his own and does a wonderful job!

Claire x
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IgA Nepropathy  - May 2010
In-centre Hemodialysis - July 2011
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