how do you ask?

[Psim]

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.

[oswald]

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.           

[kimcanada]

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

[KT0930]

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.

[Chicken Little]

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.           

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.   

[stauffenberg]

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.

[livecam]

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. 

[kellyt]

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.     

[goofynina]

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    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 

[kellyt]

Oh Goofynina - he sounds wonderful!  Send him a nice Christmas card!

[angela515]

I never had to ask for my first transplant, my mom demanded to donate, and she did. 

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.

 

[goofynina]

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   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 

[xtrememoosetrax]

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."  

*****************************
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

[angela515]

Dunno about research but my mom is doing fantastic and has been since day one of donating. 

[KT0930]

Both my parents donated to me - Mom 26 years ago, Dad 5.5 years ago - and both are in fantastic health. 

[Psim]

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?

[sisterdonor]

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.  

[xtrememoosetrax]

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. 

[xtrememoosetrax]

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.

[okarol]

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?

[thegrammalady]

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.

[George Jung]

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!!!

[Psim]

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.  

[KT0930]

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.

[Psim]

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.