how do you ask?

[okarol]

In 2006, more than 6,000 transplant candidates - one person every 90 minutes - died while awaiting transplantation. Right now, 18 people die every day waiting for a transplant. Many of these patients may have lived if the families of every medically suitable potential donor had said "yes" to donation. According to the United Network for Organ Sharing (UNOS), across the country there are currently nearly 100,000 individuals waiting for a life-saving organ transplant. As of February 2007, about 20% of the waiting list are children younger than 18 years of age. The need for kidneys tops the list, followed by liver and heart. Transplant hospitals place individuals on the national waiting list after they are given careful medical evaluations. Each month, approximately 500 people in the United States are added to the national waiting list.

Each year in the United States, approximately 15,000 people die under conditions that make them medically suitable potential organ donors. However, approximately one-third of those who died in 2006 became organ donors. This translates to an estimated 20,000 Americans (about 55 each day) receive organ transplants each year.

SOURCE: http://www.ctdn.org/resources_public.php California Transplant Donor Network

[xtrememoosetrax]

Don't want to monopolize the thread here, but I had another thought on this. 

Since you have some living relatives, casual friends and acquaintances who know you have ESRD but don't know much more about your story may be ASSUMING that your family members will be taking care of you by donating, not knowing that your sibs are incompatible.  In preparing to be a donor, I have more than once encountered the assumption that the person's family "should" be taking care of it.  Example:  My mom: "blah blah, I am opposed to your donating a kidney, *SURELY* there is someone in her family who can donate."  Me:  "Well actually, Mom, there's not."  Mom: "Oh."  (even this did not entirely change her mind at first, I'm sorry to say .  Not sure how she feels about it now, as we're avoiding the subject, but I'm pretty sure she'll be behind me in the end).

So if you do send out an email, you may want to clarify this.  For example, "My mom and dad have each already donated a kidney to me, my sibs have been declined on medical grounds, my 4 adult children have been found to be incompatible due to my high PRA levels, and now I'm hoping for a miracle!"  Or, if you don't want to go into detail on your family situation, you could just say, "Unfortunately, my family members are unable to donate." 

Just a suggestion -- hope it's helpful.

[paris]

That was a good way to say it, xtreme.  I may use it myself.

[Psim]

Good point, xtreme! I should know how easy it is to assume the family will deal with it -- my brother and sister (my only living relatives) both offered as soon as I was diagnosed. We all just assumed one of them would be a match. Ah well, life has a way of throwing us the curve balls!

[paris]

Psim, I am sick of the curve balls   Couldn't someone throw one slow, right over the base?   

[st789]

No one in my family is willingly to step up.  They are so private about my conditions. 

[Psim]

No one in my family is willingly to step up.  They are so private about my conditions. 

I'm sorry you have to deal with this. Sometimes families can hurt like nothing else.  I didn't exactly luck out in the Perfect Family Sweepstakes either -- my dad was a violent alcoholic -- but it made all us kids very close and into looking out for each other. Clouds don't always have silver linings, but when they do you gotta love it.

[boxman55]

No one in my family is willingly to step up.  They are so private about my conditions. 

I have (6) brothers and sisters (14) close cousins, when I sent an e-mail out letting them all know I was added to the transplant waiting list the responses that I got back was "congratulations we are praying for you.. Not one offered or inquired. I don't need the prayers I need the kidney...Boxman

[okarol]

Boxman,
Do you have someone who could email everyone on your behalf?
The next email could say, "As you know (insert name) has been waitlisted for __ months/years and is still on dialysis, waiting for a kidney from a non-living donor.  Since the wait time in our state is currently __ years, it has been recommended that (insert name) seek a living donor to donate. I have offered to help him with this as I am not suitable as a donor for him."

Create a caringbridge site - it's easy, it's free, and just tell your story. Have the email direct folks to the caringbridge page.

This is what I posted on the xanga site I made for Jenna (I had 2 sites going at once) -

People often ask how they can help.  We hope someone will consider donating a kidney so she can get off dialysis. If you need to know more about the transplant process itself, we can email you information. Please contact us at the following email address: kidney4jenna@yahoo.com.  The donor must be blood type O (positive or negative) - between the ages of 18 and 65 and in good health. Any other medical conditions such as hypertension, diabetes, or any other medical problems could exclude someone from the donor process. Jenna's Transplant Coordinator will ask you some health questions to begin the evaluation process. She can also answer any questions you may have. Any communication or results with the transplant team is completely confidential.

The National Kidney Foundation has an online resource for living donation at http://www.kidney.org/recips/livingdonors/index.cfm. Whether you are a living donor, potential donor, recipient, family member or friend, you'll find many different resources here. You can also learn about living kidney donation from Living Donors Online at http://www.livingdonorsonline.org/kidney/kidney.htm. An updated blog about Jenna is at http://www.caringbridge.org/visit/jennafranks - please sign the guest book there!
Thank you for your prayers and good wishes. Please spread the word and pass this site on to your friends and family. 

[boxman55]

Thanks Okarol, I pasted this to a word document to ponder tomorrow it's past my bedtime tonight. You are very kind...Boxman

[kellyt]

Psim, I am sick of the curve balls   Couldn't someone throw one slow, right over the base?   

I prefer "T-ball", myself.   Guaranteed hit!   

[George Jung]

I have (6) brothers and sisters (14) close cousins, when I sent an e-mail out letting them all know I was added to the transplant waiting list the responses that I got back was "congratulations we are praying for you.. Not one offered or inquired. I don't need the prayers I need the kidney...Boxman

I cannot remember if I shared this anywhere else but it is part of an attempt to get people into action.  Boxman, your response prompted me to post.  The end is the direct relation to boxman's quote.

Before Thanksgiving gets too far behind us, I want to pause a moment and share some thoughts/reflections with you.
While it was truly great that those of us who came together were all ABLE to come together and the comparative thoughts of last Thanksgiving were silently in the forefront of everyone's mind, there was a bit of sorrow when anticipated joy of an announcement that Joan had been successfully qualified as a Kidney donor for George never happened.

However, as I heard many times throughout the weekend, I guess it was God's will.
Reflecting for a moment, I find that to be a very interesting phrase… God's Will….   What exactly does that mean???      Why are we so quick to classify moments of sorrow or feelings of helpless or times when we are unable to find the good/positive as "God's Will"?

Is it truly God's will that two motorcyclists were killed instantly while enjoying there Thanksgiving holiday?     It is truly Gods will that the lady had a seizure at the parade?      Is truly God's will that Joan was eliminated as a donor candidate for George?     Is it truly God's will that there are NO other donor candidates?

If these things are God's will, then does it follow that God's will for George (and thousands more in his situation) is to die slowly while the thousands who can help go about their day-to-day holiday preparations sweeping guilt under the carpet or writing off the sadness as Gods will?

Was it God's will that a team of specialists who are paid a human salary to protect an institution from a potential legal recourse have denied Joan the right to save her son's life. Are these specialists doing God's will?

IIs it God's will that I do not offer my own kidney because there is a potential that Alan, or Christy or Gabby may need it one day?
(Perhaps if I truly believed in God's will, I wouldn't worry so much about what can potentially happen but rather allow the future to be "God's will".)  Is it God's will that NO ONE other than George's own mother even so much as contacted UNC requesting more information??

Could it not be God's will that we all have TWO kidneys but only NEED one so that we can give life to our brother and sisters.
While we all giving our thanks to God this holiday season, I wonder why is it that each one of us is aggressively focused on, and actively involved the things that matter on an individual level - why can't we be more passive about those items? It the ultimate outcome not God's will?  When you take a step back and honestly take a look at it, it seems to me that we pick and choose the situations in which we will actively immerse ourselves in and those that we passively write off as God's will. Perhaps it is God's will that we humans are able to use the term "Gods will" to make ourselves feel better when confronted with an soul shaking, heart wrenching situation.

Please... don't misunderstand….   I am as much a believer in "God's will be done" as the rest of us. But, since we're on a religious path here, let me remind you of our beloved St. Francis of Assisi. St Francis never, looked a beggar or a leper and said "your plight is God's will"!   Francis ALWAYS found a way to help (often at great personal sacrifice, which, by the way, included imprisonment). (if you look) You will often hear St.Francis praying "God make me your instrument to do your will".

Now, it seems to me that there is an obvious and distinct difference between ACTIVELY DOING God's will and PASSIVELY accepting things as God's will. And without dispute, we can all agree that we as humans have the ability to determine when to be active and when to be passive. That is a personal choice. It is a choice we are confronted with on a daily basis. So Today, while we are all giving thanks to God for all he has given us, I ask that each of you consider that perhaps God is calling us to do his will. Perhaps God is using George as his communication to each of us that His Will is for us to get out of our comfort zone, focus on a greater cause and make a difference. ………Surely something to think about……

Perhaps next year, when we gather around the table, we have something much deeper to be thankful for.
If this email challenges your foundation or makes you feel a sadness or anger then I accomplished my goal. But rest assured, I am just doing God's will and praying that you will too. With all of my heart, I believe that our future is truly in Gods hands and none of us know what tomorrow holds. Today is His gift - an opportunity for us to be His instrument - tomorrow is promised to noone. Please allow Him to work His will though you.

Please… Stop praying for George. Stop asking God to save George's life. Those prayers have been heard a hundred times over. Instead offer yourself as His instrument and ask Him to energize you to do His Will - whatever that may be.With love and respect,
…Al

[kimcanada]

George...

Thank You, I loved every word

Kim

[okarol]

I am not sure I would ask people to stop praying. One of the potential donors for Jenna, after being turned down due to discovering she had medulllary kidney disease in the process, asked if she could continue to pray. Kimberley's response was so inspiring! She said, 'I sincerely wish things had worked out. If it is ok with you, I would like to add Jenna to my church prayer list. The added prayers can never hurt, as well as the spreading of her need. You never know who might respond. I will continue to pray for all of your family. You are such an amazing mom and are such an asset to Jenna as she deals with everything. I continue to be inspired by your relentless pursuit to help Jenna. I know that God has a plan for you and Jenna. It is so hard to wait on God's perfect timing, but when it does happen I know that it will be beautiful. I will always be happy to be a shoulder to listen when you feel frustration over this difficult journey!'

I truly believe that Kimberley's prayers, and all the prayers from our friends and family brought us to meeting her ultimate donor.

[George Jung]

Please… Stop praying for George. Stop asking God to save George's life. Those prayers have been heard a hundred times over. Instead offer yourself as His instrument and ask Him to energize you to do His Will - whatever that may be.With love and respect,[/size]…Al

If you listen closely to what is being said, all my Uncle intended to convey/suggest is for those who are praying to DO more, to think about how they can help other than praying, like getting blood typed, learning about ESRD and transplantation.  We all know these people are not going to stop praying but we also want them to know that they can physically help too, if only they can find the time to stop worrying about their holiday season and how they have not had time to do this and that, along with other insignificant, trivial worries that people consume themselves with to keep their head buried in the sand.  We would like them to be more like you Karol.

*Growing up I thought we always prayed when things were out of our control not when we became too scared to do something ourselves, in which case we would then pray for ourself and for the strength to accomplish what it is we set out to accomplish.  Your friend Karol (Kimberly), asked if she could continue to pray after doing everything in her power to help Jenna on her own free will.  The intended audience of the post from my Uncle has done (seemingly) nothing.

[okarol]

Yeah George, I understand what your uncle was trying to say.
I am just looking at it from the perspective of the person reading a plea for help.
I think I would say "In addition to sending prayers, please consider taking the next step... be tested as a kidney donor."
But I try to brief and direct, it's a personal choice. I am sure he will make people think.
Has your uncle gotten any responses?

[kellyt]

A man stranded on a deserted island prays to the Lord to deliver him to safety.  A few days later a man on a boat arrives and tells the stranded man to get in and he will take him home.  The stranded man adamantly says "No. The Lord will provide!".  And the man on the boat leaves.  The man continues to pray.  A few days pass and an airplane lands on the island and a woman says "Get on, I'll fly you home."  "No.  The Lord will provide!".  The man continues to pray.  Several more days pass and then a cruise ship docks and the crew instructs the man to get on board so they can take him home.  Again, "No.  The Lord will provide!"

One week later the man dies of starvation (or kidney failure).  When he arrives in heaven he asked the Lord "Why did you forsake me?  Why did you not save me from death?"  The Lord replied "Are you kidding?  I sent you a boat, an airplane and a cruise ship?"

Don't only pray for the Lord to "heal" me or to send me the perfect kidney.  Pray that he will show YOU how you can help me and many others.

That's my interpretation, anyway.   

[Kidneygirl]

Dear Boxman,

Six siblings and not one of them offered a kidney? Shame on them. My sister got tested, is a good match and then backed out. I will never be able to forgive her.

[angela515]

Dear Boxman,

Six siblings and not one of them offered a kidney? Shame on them. My sister got tested, is a good match and then backed out. I will never be able to forgive her.

At least she offered. I have 2 of my 3 brother's who didn't offer, however I love them no less and wouldn't ever hold it against them even though I would not hesitate to offer to them. Life is to short to hold grudges... it isn't worth it. Your heart and soul deserve happiness, and I don't think you can get total happiness with unforgiveness in your heart. 

[paris]

Several people have tested for me, no transplant.  Just being tested is a huge step for someone and if in the end they feel they can't do it, we have to accept that answer and still love the person. I can honestly say that before I was diagnosed, it never crossed my mind to be a living donor.  I wanted to donate after death, but never thought about helping save a life by being a living donor.  Now, that I have better knowledge, I hope I would make a good choice and donate.  I can understand why people are concerned about giving away a body part--it is scary.  I have a large family, lots of neices and nephews, couisins,etc.  A couple said "you can have one of my kidneys" but then did nothing to start the process.  My husband is always praising these people for their offer, but to me it is an empty offer if they don't contact the transplant center to be tested.    I don't know---it is all so complicated. And it should be so easy.

[boxman55]

Don't get me wrong I am not hateful because no one stepped up yet. I guess I could go down the list and come up with medical or physical reasons why they wouldn't be allowed to donate or don't want to because they have kids of their own, and I know they have thought about it because I sent an e-mail out and all responded back with congrats and prayers for getting on the list but that was it...So here I sit going.. do I stay on dialysis for the rest of my life or do I accept a transplant (living or cadaver) knowing full well that there is no guarantee that it will last for any length of time then back to dialysis to start the wait again. If I had a wish for Christmas it would be for me to come to a decision on which road I want to go down, because it is driving me nuts...Boxman

[paris]

Boxman, I agree, it is so hard to decide. One minute I know what I want and the next, I change my mind.  I think I am at the point that I accept today for today---and will worry about tomorrow, well, tomorrow!   I just don't want to think about it anymore.   

[thegrammalady]

as we travel through life we sow seeds. some we hope fall on fertile soil, some may fall on areas where we don't think anything can grow. the point is you never know what may grow, or from where that growth might come. we also don't know what those seeds might produce, beautiful flowers or noxious weeds. no matter how beautiful the growth we may never know what those seeds produced or how they were used. FAITH PROCEDES THE MIRACLE.

[sisterdonor]

Do you think a lot of the people who might be live donors take the cadaver list and dialysis for granted thinking that all will be OK whether or not they would donate?

Are the educational things you show or send them explaining things as well as they should or could?

[George Jung]

Has your uncle gotten any responses?

He got two responses, both of which were defending their faith with biblical quotes.  Seemed to me the people were feeling a bit guilty or feeling bad/helpless and that was the only ground they had to stand on.  I have sent numerous e-mails many of which are articles from IHD that I think are relative, educational, and inspirational and I NEVER get any response, not ONE.  I don't even get any "nice to hear from you" responses.  I only hope that they are being read and someone is learning something.  If they don't want to help me that is fine but I sure hope they are influenced in some way to help someone, sometime.  No one has asked to be taken off of the distribution list so I will continue my mission to raise awareness.

Do you think a lot of the people who might be live donors take the cadaver list and dialysis for granted thinking that all will be OK whether or not they would donate?

Are the educational things you show or send them explaining things as well as they should or could?

YES.  I have tried to make a clear point that dialysis is temporary (I know transplants are too.....Life is temporary!) and often post articles with statistics proving so.

YES.  I think a major issue is geographic location (in my case) and most are at a safe distance to aide in denial.  Those directly involved in my life (family, not so much friends) are much more aware and willing to do whatever they can.