I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Psim on December 09, 2007, 11:11:21 AM
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When I was first diagnosed with kidney failure, my brother and sister both offered to be donors. I was so disappointed when we found out we had incompatible blood types (I am the dreaded type O!). A few other people have offered since then and are being tested.
The social worker at the kidney clinic recently suggested I send an email to everyone I know, saying I need a transplant and asking anyone who's interested to call the donor nurse. She says you never know who might be up for it (I know this is true ? one of the people who's being tested now is someone I don't even know that well).
I feel very awkward about doing this ? I soooooo don't want anyone to feel pressured. Has anyone here ever written something like that? Would you be willing to share what you wrote? I'd also love to hear any suggestions for how to not feel so weird/awkward/awful about discussing the subject with people. Thank you so much.
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the question for me was how to tell friends and family that i didn't want them to donate. the reason was because they all have kids and what if something happened where one of their kids needs a kidney. that would make me feel like poop if they couldn't help their own kids. ive never been in your situation but i wish you the best. :) :christmastree;
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I have been in your situation, and believe me anyone that has, has thought about taking someones kidney. We trust in the system that doctors have set up to ensure that only people that can donate with little risk do....
As for asking , I think that you just be as matter of factly as possible in the initial letter, then anyone that is interested will contact you. Just think of it as that, a letter of request, also so many people don't realize that anyone can be a donor, in my case people here thought it was just family members.
Best of Luck
Keep us posted
KimCanada
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I was lucky because my husband took it upon himself to write such a letter. I didn't find out he was doing it until I received a copy of it in my email. He sent it to nearly 100 people, and three (two of whom were his ex-girlfriends!) came forward. Unfortunately, due to high PRA, none of them matched.
He gave them a very short lesson on my medical history, reminded them how long it had taken him to find me (we got married when he was 34), and told them a little bit about the process. He also mentioned paired donations, so if they knew someone else who needed a kidney whom they did not match, perhaps we could arrange a swap (my brother had already been tested and denied for not matching).
That was nearly a year ago, and I've been going over and over in my mind how to find more people willing to be tested, and I find it nearly impossible. I even have one friend at work who told me he has what the Red Cross calls "baby blood" because he's missing certain antigens that most people have...I drool every time I see him now (oh wait, that's because he's really cute, but too young and taken). I did post this article http://ihatedialysis.com/forum/index.php?topic=4358.0 on the bulletin board at work, just so people would have some idea of what I'm facing.
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the question for me was how to tell friends and family that i didn't want them to donate. the reason was because they all have kids and what if something happened where one of their kids needs a kidney. that would make me feel like poop if they couldn't help their own kids. ive never been in your situation but i wish you the best. :) :christmastree;
That was my issue as well. It was an overwhelming factor in why I chose to go for a pancreas/kidney, where the organs have to come from a cadaver. I was so touched that people offered, but it's not a gift I could accept.
Psim - Maybe the social worker has letters or ideas from other patients she has helped with this. Best wishes. :cuddle;
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The statistics of kidney donors' health after the donation have been extensively studied, and not only do they have no clinically significant negative effects from the transplant, but as a group, they live longer than the average person! So this is one of the many cases in medicine where the common sense assumption that you would be injuring someone by taking a kidney from them is just not scientifically true -- at least for those whose health qualifies them to donate.
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In the beginning I was told by my transplant center that it was highly unethical to ask anyone to donate. On the other hand they strong armed us at the private evaluation for my wife to donate as part of their first four way swap which didn't actually happen at that center until some 8 years after my initial evaluation.
For a time I was content to get listed and hope for a cadaveric kidney. As time went on the uncertainty of the list began to get to me and I started looking at other options. I looked into a foreign transplant briefly but decided that with the risks and overall uncertainty of that it wasn't worth proceeding with.
My mom had been discussing the matter within the family so at one point I asked her to mention the possibility of someone becoming a living donor if they wished. Several family members wanted to do it. My mom, my aunt Alice, and my cousin Gallee all offered. I didn't like the idea of any of them becoming a donor because of age, the fact that one was a young mother, and just overall risk so I didn't let it go any further.
From casual conversations at work two coworkers came forward and were tested. I believe both were matches and know for sure that one was. His wife vetoed it for whatever reasons she had and that didn't happen. The other possible donor was inquiring about time off for the surgery and recovery so I assume she was a match as well. I think she had a change of heart so that was the end of that.
In answer to your question you can let it be known in your family in a non coercive way what your condition is and what someone might be able to do to help. The same goes for your friends and associates. The key is to just let the information be known and then let those who want to come forward on their own without actually being asked.
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I haven't asked anyone right out. I have just mentioned in casual converation that I need one and most, not all, have said they would give me their kidney. Now... I know that not all will be tested. But it was nice for them to say they would. Who knows how it will all turn out.
Good Luck. :2thumbsup;
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It just sickens me that anyone would have to ask in the first place, you would think that by now, people would be informed of what is happening to people waiting for a transplant and be willing to donate (especially family members) When my friends hubby offered (and he has been tested) i asked him why would he want to do that for ME, he simply said, "What would Jesus do" i thought that was the most perfect answer :clap; That was nearly 4 years ago that he was tested and he is still waiting for me to tell him when its gonna happen, i just love that guy :bow;
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Oh Goofynina - he sounds wonderful! Send him a nice Christmas card!
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I never had to ask for my first transplant, my mom demanded to donate, and she did. 8)
As for my second transplant, my oldest brother stepped up and got tested, and matched but unfortunately couldn't donate due to a vien. As for me spreading the news, I posted a blog on my myspace page and let everyone in the world know about it. I also sent a mass email to all friends and family and did not feel bad about it one bit. It is *MY* life and I will make sure everyone knows that I need a hero to live off of dialysis, and if anyone feels upset because I sent the email to inform them, they can suck it up and deal with it.
:P :P
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Good for you Angela, I think I am a somewhat private person when it comes to my disease but if you wanna talk about ANYTHING else ;) ;) I am an open book, lol, I just think that most people dont really care to hear how we really are, they just ask to be nice :P :P But back to topic, i still think it sucks that you even have to inform them, family and friends should be close enough that they know when something is wrong and they should know to "round up the possee" and see who can help, ya know what i mean :2thumbsup;
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The statistics of kidney donors' health after the donation have been extensively studied, and not only do they have no clinically significant negative effects from the transplant, but as a group, they live longer than the average person!
In fact, it is my understanding that, far being "extensively studied," the long-term health of living kidney donors has not been particularly well researched; see the following article. I have read a number of accounts by living donors in which they indicate that their post-op follow-up has been pretty minimal, with 2 years being the absolute maximum and much less being far more common. This is why there is now a movement afoot to create a registry of living donors that would track outcomes long-term so that there will be real data to support the generally accepted but as yet unproven statement that, "it’s generally felt that being a donor is safe and donors have a normal lifespan."
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STUDY TO HELP ENSURE GOOD HEALTH OF KIDNEY DONORS
[bold and italics added by me]
(HealthNewsDigest.com) - COLUMBUS, Ohio – With the availability of more advanced drugs that reduce the potential for organ rejection, it’s now possible for a larger segment of the population to become kidney donors. While it’s no longer necessary for those in need of a kidney to depend on a perfect match, more attention is being turned to the health of the donor.
Ohio State University Medical Center and a handful of the nation’s leading transplant centers are in the midst of a study that will help determine how donors’ physical health is impacted after a transplant.
For up to three years, researchers will be monitoring 200 kidney donors and recording their kidney function and risk factors for heart disease and strokes. Smaller, retrospective studies have shown about 30 percent of donors will develop high blood pressure.
“This is the first, large prospective study looking at donors for an extended period,” said Dr. Todd Pesavento, medical director of kidney transplantation and principal investigator for the study at OSU Medical Center.
“We really don’t have any scientific, prospective, longterm studies that show donors lead healthy lives, although it’s generally felt that being a donor is safe and donors have a normal lifespan,” said Pesavento. “This study will give us a good indication of how kidney donation affects the donors’ physical health and if there are any steps we need to take to make sure donors live healthy lives with good kidney function.”
Each of the 200 study participants will be partnered with a sibling, spouse or friend who will act as a normal control for comparison during the study. Over the course of three years, the pairs will receive medical check-ups and screenings to help detect any medical changes.
Pesavento said immunosuppressive drugs have reduced organ rejection rates from 40-50 percent 10 years ago to about 5 percent today. “That’s good because it allows more people to become eligible donors.”
Approximately 70,000 people are waiting for a kidney transplant, according to Pesavento, and about 17,000 transplants are performed each year in the United States. “Even if we added no new patients to the waiting list, it would take four to five years for those patients to be transplanted,” he said. “Donors greatly improve the lives of the recipients. We want to ensure it’s a good long-term experience for the donor as well.”
The study is funded by the National Institutes of Health.
www.HealthNewsDigest.com
URL http://www.healthnewsdigest.com/news/Research_270/Study_to_Help_Ensure_Good_Health_of_Kidney_Donors.shtml
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Dunno about research but my mom is doing fantastic and has been since day one of donating. :thumbup;
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Both my parents donated to me - Mom 26 years ago, Dad 5.5 years ago - and both are in fantastic health. :beer1;
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Thanks for all the replies -- you folks are the greatest! It really helps to hear all the different takes on this.It makes me feel like it's ok that I'm hesitant to bring it up, and it would be ok if I got a little bolder as well. I do like the email idea -- it would give people a chance to think about it (and to realize that it's not just close family that are eligible) without being put on the spot. I'll work on an email and maybe post it here before I send it out into the world.
One question I have from the article that KT0930 (do you have another name? Do we call you KT for short, or 930? :)) posted -- it said, "A brief surf on the Web tells me 40 percent of people waiting for a kidney die after two years, and 60 percent are dead after four years... Most die before they ever get a kidney." Is this *true*? It seems a lot worse than what I've heard. If it's not accurate, does anyone have the right numbers?
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As an upcoming donor I have to chime in here with my opinion.
I think it is not a good thing for those with kidney disease to try to discern who might be a good candidate and who might not be. Let your friends and family try to help you. Let them begin the educational process and then, once fully informed and willing, to go thru the testing process.
Also, just because someone has kids is not all that valid, in my opinion, of a reason to tell them they can't help you. Let them decide - give them that much respect. Also, try not to see the population of the world as kidney failure waiting to happen. It is very rare and I think you know that but forget sometimes. The odds of someone's child needing a kidney that they gave to you is ridiculously slim. Besides, there are usually other siblings and relatives if that were the case and in fact, the person who has children who may want to give you a kidney when he or she is 30 or 40 may be too old (over 60) by the time their child, if in the rare occassion it happened, needed theirs.
I have more to say on the subject but I'll just leave it there. My point is to educate friends, family, colleagues and their network of friends and family and let it flourish from there. No one is going to do this without giving it serious thought and weighing all the risks. They just won't so it's not your place to do that for them. Don't put the brakes on it or you'll never get to have your transplant.
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I agree with sisterdonor. Just making your situation known is not pressuring anyone; then people can make their own decisions.
I don't have kids, but when I first started thinking about donating, several people said to me "What about your sister?" --- i.e., what if my sister were to need a kidney down the road sometime and I had already given my "spare" to someone else? Well, first, as sisterdonor points out, the odds of this are pretty low, especially in light of the fact that we have no family history of diabetes, hypertension, etc. (something that is scrutinized closely during the donor workup). Secondly, what if I "save" my kidney for my sister and it turns out that she never needs it? That seems like a tragic waste, especially given that someone else needs one RIGHT NOW. My other thought is that by being a living donor myself, I will be modeling this behavior for others who didn't know it was possible, making other folks aware that this is a doable thing, and thus hopefully increasing the chances that, if my sister were to eventually need a kidney, someone else would be willing to step up to help her.
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You might want to take a look at this news article posted by okarol:
http://ihatedialysis.com/forum/index.php?topic=6167.0
The headline says "kidney donors make it easier for recipients when they step forward on their own," which almost makes it sound like you shouldn't ask, but I think the real point is that people are not going to step forward if they don't know that there is a need, so it's important to get the word out.
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Here are a couple related threads:
http://ihatedialysis.com/forum/index.php?topic=1914.0 Asking for a kidney...?
http://ihatedialysis.com/forum/index.php?topic=3113.0 looking for donors?
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i have 4 kids. one of them is incapable of donating, but the other three have all said they would. if fact they are rather angry with me for not wanting a transplant. (but i may be changing my mind, i haven't decided yet) my mothers brother-in-law has 6 kids. his opinion is that all 6 of them should have their hands in the air to donate. needless to say, none of them have, but then i haven't asked either. the e-mail idea is great. something similar to what my niece sends when sh goes overseas on one of her missionary trips. "i'm doing this and need support, if you can, great and thanks." that way no one feels pressured. there are doner websites, talk to okarol, that's where they found a doner for jenna. okarol is a mine of information, we couldn't do without her and are so lucky she's here. you'll figure it all out.
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Personally, even if it was allowed to come right out and ask I could never do it. I do feel a sort of responsibility, because of the group of people I belong to (everyone with kidney disease), that it is my duty to educate the uninformed though. There have been a series of e-mails sent either by me directly or my number one advocate (my Uncle) with my personal story in order to bring the subject home and hope that it makes a connection. If someone were to come forward I would be ..............?? ?? I don't know the words to explain how I would be. However, it goes far beyond that, I want to make a difference even if not for myself. I want everyone to know the importance of organ and tissue donation, I want people to know that making their wishes be know is critical and I want them to know about all the possibilities of making a living donation as well. I send out articles that okarol post (from IHD) to keep people involved and I have also recruited family members to help me build a web site (which is coming along nicely). I want people to know that even if donating is not something they feel good about they can still aide in my cause. Inform, inform, inform!!!
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you'll figure it all out.
Thanks. I can't tell you all how much it helps to have a site like this where I can ask questions and get support. When I was first getting more symptoms, I knew I needed something beyond what my doctors (excellent as they are) could give me. I did an internet search and found: sites run by dialysis machine companies, sites run by nurses, sites run by foundations with long names... and then down at the bottom, I saw something called ihatedialysis.com. And I thought, "Yes! That is my place -- the site where they have a sense of humour and don't shy away from hard truths." So thank you thank you thank you for being here. :bow;
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One question I have from the article that KT0930 (do you have another name? Do we call you KT for short, or 930? :)) posted -- it said, "A brief surf on the Web tells me 40 percent of people waiting for a kidney die after two years, and 60 percent are dead after four years... Most die before they ever get a kidney." Is this *true*? It seems a lot worse than what I've heard. If it's not accurate, does anyone have the right numbers?
I'm sorry, I didn't write the article, so I can't attest to the accuracy of the numbers in it. I know in the US 14 people die every year waiting for a transplant. What you need to take into account, though, is that includes very sick people, very old people, and people who just aren't doing well, medically, on dialysis. There are many factors to consider, so don't think of this as a death sentence or anything like that.
My name is Katie, feel free to call me that or KT for short-hand.
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so don't think of this as a death sentence or anything like that.
Whew, thanks, KT. BTW, I didn't mean to sound like you were responsible for any mistakes in the article -- just checking on some pretty scary numbers.
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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
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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.
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That was a good way to say it, xtreme. I may use it myself.
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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!
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Psim, I am sick of the curve balls :rofl; Couldn't someone throw one slow, right over the base?
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No one in my family is willingly to step up. They are so private about my conditions.
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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. :cuddle; 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.
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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
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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.
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Thanks Okarol, I pasted this to a word document to ponder tomorrow it's past my bedtime tonight. You are very kind...Boxman
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Psim, I am sick of the curve balls :rofl; Couldn't someone throw one slow, right over the base?
I prefer "T-ball", myself. Guaranteed hit! :lol;
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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
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George...
Thank You, I loved every word
Kim
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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.
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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.
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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?
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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. :cuddle;
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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.
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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. :cuddle;
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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.
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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
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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.
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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.
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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?
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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.
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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. :cuddle;
And that was the author's intended message. Thank you.
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It's such a difficult topic! I too never gave it a second thought before I had ESRD. I like to think that if a friend or relative had needed a transplant, I would have come forward. I really think I would, but I'll never know for sure. The people who have come forward are not who I would have expected -- one is a person I barely know.
When I told my best friend (who's also type O) that my brother and sister were not a match, she got really quiet, and then blurted out that she would give me a kidney if it was life or death, but she didn't want to have a big operation, so I should try to find someone else. Then she changed the subject. I felt hurt and angry -- I wished she had asked me questions and got more info about my situation. But I don't actually think her response was unreasonable. I think my hurt and anger were unreasonable -- but understandable. I've been giving her more info on what my options are and what life on dialysis involves, bit by bit. Yesterday she told me she scared to face the reality of aging, sickness and death for herself or any of her friends. I appreciated that she could be so honest.
These things are so full of conflicting emotions and so potentially hard on our relationships. It's really helpful to hear everyone talk about this subject. There are no easy answers, eh?
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If you haven't read these news stories - the first was what I experienced - and the second came out this week - I would recommend them. They give a pretty accurate account of what it's like to go through finding a donor.
http://ihatedialysis.com/forum/index.php?topic=2167.0 A test of faith in strangers
http://ihatedialysis.com/forum/index.php?topic=6232.0 Desperately Seeking a Kidney
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WOW is all I can say, On 12/16/07 I posted about not having any body in my family come forward to offer to donate after 16 months of dialysis. To nite I came home and there was a note on my cell that my sister called from Minnesota. I called her back and when I did she said she has been thinking about and researching the possibility of getting tested to donate her kidney to me. (She is O+ as am I and she is one year older) I am sitting here crying my eyes out while I type this, it is so unbelievable and overwhelming. Tomorrow she told me to call my transplant coord. to start the process. Please wish us luck...Boxman
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boxman, i'm thrilled for you hun. :grouphug; I wish you all the luck in the world and i'll be praying it all goes well and can happen for you. :grouphug;
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I am so so so happy for you Boxman.
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Wow. What a difference a day can make. That's wonderful news, Boxman. Good luck.
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Excellent! Nothing but good vibes and luck thrown your way! :thumbup;
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that is so awesome.. :2thumbsup; :2thumbsup; :2thumbsup; :clap; :snowman; :santahat; :christmastree; :rudolph;
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OMG what great news. thats just awesome. i can't be more happy for you. i hope and pray everything goes allright with the testing. :grouphug; you can't tell me there ain't no GOD. with news like that, santa came early for you. :santahat;
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Your sister is an :angel;. She cares enough to research the possibility of donating and is willing to take it a step further.
I wish you both luck :grouphug;
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OMG what great news. thats just awesome. i can't be more happy for you. i hope and pray everything goes allright with the testing. :grouphug; you can't tell me there ain't no GOD. with news like that, Santa came early for you. :santahat;
She will be in town on Saturday with her husband and three sons for our family Christmas get together I won't know how to act in front of her. A million things go through your mind, for 16 months all you think about is dialysis, now the possibility of a transplant and all the pros and cons that could come with that. I tried to laid down to go to sleep but my mind is just spinning. I know it's very early in the process but it really makes your head spin...Boxman----Thanks for all the kind words!
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Made me cry to hear it Boxman. You never know where these things will lead, but it's great feeling to know someone is even considering such a gift. I was always cautiously optimistic with each potential donor. I am so happy your sister reached out to you.
xoxoxox :cuddle;
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Boxman, that's absolutely wonderful news!!! I'm so happy to hear it! You know we're all hoping and praying the testing goes well. Merry Christmas! :rudolph;
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Boxman, how amazing is the timing! We are discussing pros and cons about relatives and friends donating and your lovely sister had already been researching donation. I am so thrilled for you; just to have some hope that a transplant may happen. HOPE--my favorite word! We are all praying this will work out well. Have a great family gathering. :grouphug;
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Oh Boxman, this is fabulous news!!! :yahoo; I so hope that the next stages will all go smoothly, but however things work out, you will always know that she cares enough to come forward! I'm so happy for you!!!!
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That is great. I hope it will all work out for you boxman :thumbup;
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what fantastic news boxman good luck to you both :2thumbsup;
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My sister Lynn was in town with her husband and two of their three sons. She said it was okay to let everyone know that she will be tested. I got to make the annoucement at our family Christmas get together. I am really proud of her and the cool thing is I had the chance to bring the awareness of donation back up with that annoucement and the e-mail I sent out. People are talking about it again...Boxman
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:2thumbsup; Bless your sister. She is an inspiration! :cuddle;
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Thats AWSOME and so is your sister :angel;
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Boxman, i dont know how i missed this thread but this is the first i have heard and let me tell you how extremely HAPPY :yahoo; i am for you my friend, Good luck to the both of you, i'll be sending good thoughts and prayers your way :cuddle;
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I got to make the annoucement at our family Christmas get together. I am really proud of her and the cool thing is I had the chance to bring the awareness of donation back up
Yay Boxman!!! :bandance;
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Boxman - what ever happened? Sorry I missed it.
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Hi Kidney4traci, well my sister was found to have an auto immune disease so she was disqualified. It was disappointing to say the leaset.
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:'( boxman, I'm so sorry. Are you still on transplant list? If you are I hope you get that call quickly. Take care.
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Sorry Boxman. But it was somethignto see she stepped up, right? More than I can say for my family. Blessings to you, hope you do find a match soon.
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Sorry Boxman. But it was somethignto see she stepped up, right? More than I can say for my family. Blessings to you, hope you do find a match soon.
You never know about people. I waited over 16 months before I had someone at least try to see if they where able. But it is just one more thing to drive you nuts...Boxman
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You don't ask, that's how. I was told by everyone I know that you don't dare ask someone to donate an organ to you. It is extremely rude and pushy to do so and puts people in a very bad spot if they can't or simply don't want to. I could see if we had no other lifesaving measure, but we do and we must be grateful for it. Be glad it's not the 1960's where dialysis was rationed. I have had no one step forward to offer me squat and not one call from the transplant center in 3 1/2 years, and if I have to be on dialysis the rest of my life, it is what it is and I'll have to deal.
You're not owed a kidney, no one is. Be glad you're healthy enough to be transplanted, most of the people at the dialysis center I go to except for me don't even have that.
Or maybe you'd like to be like this young man with Autism that goes to my center whose mother is his legal guardian? Dialysis is the only place other than the sheltered workshop he goes to that his mother allows him to go to without her or his sister. Oh, by the way he can't even get on the list.
In short, asking someone to take an organ out of themself to give to you is nervy and yes, even a white trash thing to do.
Don't do it.
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Maybe coming out and asking someone to donate a kidney is something that I wouldn't do, but I did have my sister send a letter to family members telling everyone what I needed. If that is rude, oh well so sad... I would rather be rude then be in need and not have anyone know what I need!
I think that just about everyone in here is grateful for dialysis, but this isn't the 60's, times they do change, and having your personal view on this topic is fine, but calling people that don't share your view "trash" is trashy in itself isn't it?
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No, because asking completely puts people on the spot and that's a horrible thing to do. I have a real problem with it. What makes a family member or a friend any different than a stranger in this case? If I was the one with healthy kidneys and I had been planning to test for someone and they asked me to, I'd tell them no and not do it. Nerviness like that need not be rewarded. Again, we are owed nothing but life-sustaining therapy in this case. Anything else is out of the kindness of someone's heart. No exception.
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We will then agree to disagree, I would never miss an opportunity to let people know what I need in the chance that they might be able to help. OF coarse the ultimate choice is theirs. I have one sister that was tested and one that hasn't brought it up, the sister that offered is ticked at the other one, I on the other hand understand that its her kidney and her choice, but not to say anything with the hopes that they "know" screams passive aggressive
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wow- saying its a trashy thing to do is incredibly harsh. Its too bad you're convinced its so wrong. I prefer to think- if you have to ask- its because the person is A. uninformed about donating or B. a little afraid of the process. So many people don't know they can donate at all....it never hurts to ask....and if just asking hurts your relationship, then maybe you didn't have as great of a relationship as you thought. Look at all the lucky people who asked....and someone said yes.
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I question whether it really should be part of a healthy person's autonomy right to be allowed to keep two kidneys when he only needs one to continue living a perfectly healthy life, while his selfishness in keeping a spare for himself means the person next to him, who has no kidney, will be condemned to an earlier death because he does not receive that organ for transplant. If a fascist state were to invade your country with the intention of killing off all the minorities in some racist social mission, then your country would draft everyone to resist the invader, although the invasion would not equally threaten everyone. If you are drafted to fight in a war to save someone else's life, your chances of death or injury are infinitely higher than they would be if you were drafted to save someone else's life by giving them a transplant, so why is there a right to refuse to donate a spare kidney but not a right to refuse to defend your country?
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Me, I would NEVER ask someone to donate a kidney. I do not feel I am owed anybody's extra parts. But then, I do not view having two kidneys as
extra parts either. Taking someone's kidney puts that person at risk, whether we are willing to admit it or not. Someone should be willing to do this
of their own volition, not forced and not asked.
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Letting friends and family know that you need a kidney transplant is a reasonable thing to do.
Directly asking someone to donate puts pressure on them (just like asking for money!) so I agree, get the word out and let people decide for themselves.
Living donors are undergoing surgery, which is always a risk. It should be their idea and decision without feeling obligated or guilted into it.
People who donate kidneys are remarkable people. I hope someone willing comes into your life, if it's something you want.
If you want to wait for a deceased donor, or stay on dialysis, that is your right too.
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If you are drafted to fight in a war to save someone else's life, your chances of death or injury are infinitely higher than they would be if you were drafted to save someone else's life by giving them a transplant, so why is there a right to refuse to donate a spare kidney but not a right to refuse to defend your country?
Why should your dream society stop with a person's "spare" kidney? How about lopping off a piece of liver for a transplant, since it will grow back in time. And take a person's blood, bone marrow, a vein or two, and some skin while you're at it.
What a wonderful society it would truly be. stauffenberg, you have an interesting concept of human liberty.
8)
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I've been on the list since June 2005. I started dialysis in January 07. Ever since my physical decline became noticeable fatigue, less "spark", nausea - much to my surgeon's horror, I've had to have discussions with a few people about why I don't want their kidneys.
Now, this is my personal POV (I support all transplants) For me, I consider cadaver kidneys to be the only "spare parts" that I want. Part of me would die if someone I loved suffered complications from donation, or if I rejected their kidney. And truthfully, dialysis isn't so bad. Even though I know that it is just a matter of time until I get "the call" even if it doesn't work out or if there are complications, I'll be ok.
It is a very humbling and amazing moment when someone offers a kidney. When my ex offered, I cried. I said no, but the offer really touched me. (I have no doubt that I'd reject his kidney, after all, we had trouble just being together - I really do think that it was at a cellular level!) The same with others who have stepped up. My usual reply is no thank you, and that I need them to stay as healthy as possible. (I know that there is only a slight health risk with donation - but still, I am a pessimist)
On the inverse, I really, really, really dislike the head of my school. And on a regular basis, when he really annoys me, I'll exclaim "from him, I'll take a kidney".
So, that is my experience so far. Waiting on a deceased donor, and touched by those who offer.
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To me it's sad to hear that outlook on it. I would never go back and not take my mother's kidney even knowing it only lasted 5 years. My mother would never go back either and she actually wants to put it in her will if I am on dialysis that her kidney be given to me. It's the greatest feeling/gift and I am glad their are people out there who know they do not need both kidneys to live normally.
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This is how it worked for us:
My husband received a transplant on My 14th. The kidney was donated by my sister's husband.
My husband is otherwise very healthy and with a transplant we are hopeful that he will be able to to continue to do what he does well. His work as a musician involves traveling many weeks each year, including at least a few overseas trips. I was willing to donate to from day 1, but was told that I was not a suitable match. We also considered the paired donation option, but since my husband is an O that didn't appear to be a highly viable option. The last option was for me to donate to the list so that Stephen would have higher priority for a cadaveric kidney. I reviewed the available information and talked to the doctors and nurses one on one. I came to the conclusion that donation would not pose much of a risk for a healthy person other than the risk of surgery, which we might face for any number of ailments. I also came across the statistics that show that living donor kidneys typically do better statistically than cadaveric kidneys, particularly if the antigen match is not high. Based on all of this, I became convinced that a living donor kidney would be the best option for my husband. Unfortunately, there were no suitable family members. My husband comes from a PKD family and 2/3 of his siblings have PKD. The other sibling has health limitations. His cousins are either adopted or have health issues of their own. After being strongly encouraged by a dear friend, I decided to ask our friends to consider being tested as a possible kidney donor for my husband (with his consent, of course).
I made the request via an e-mail. We arranged in advance with the transplant clinic to keep the testing anonymous from us. A risk with this approach is that the decision-making process of who to ask can go out of your personal control, but it also means that no one need feel any pressure.
Everyone needs to decide what's right for their particular situation. Until a year ago I understood relatively little about the realities of ESRD, dialysis and transplants. After my request, numerous friends told me that they knew little about kidney donation until we started trying to find a donor for my husband. They started doing their own research and paying attention when there was a news story of one sort or another that was relevant. Some friends let us know that they were the wrong blood type. Some let us know that they could not handle the idea of being a living donor, but that they had decided to fill out a donor card for the first time. Not one of our friends expressed any resentment to us about being asked to consider donation.
In the end my sister's husband became Stephen's donor. We had no idea he was being tested until near the end of the process. The donor who was ranked number 2 by the surgeon has told us that she will be there for Stephen in the future if he needs another kidney and she is still healthy enough to be a donor.
Now that Stephen has received a kidney from Michael, I have a much deeper appreciation of what it means to be given this gift. It is truly something to cherish. My brother-in-law thinks that more people would be willing to donate if they knew more about it how kidney donation works.
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Wow... Just found this thread. I'm in support of any transplant you can get. Every ESRD patient for themselves! However you get a kidney, by someone graciously offering, asking for yourself (which is not trashy), waiting for a cadaver kidney, or paying for a bulletin board on a major highway (I've seen this) transplants are a wonderful thing! Everyone deserves the best health they can have. Not only does the patient deserve this, but their family and friends that care about them as well.