How do you feel about donor/recipient websites?

[MooseMom]

Apparently it is on a regular basis that newish members ask about sites that match potential donors with people needing a transplant.  Okarol was kind enough to post many links to news articles on this subject, but I am interested in the thoughts of IHD members.  I visited a couple of these sites, and I can see the appeal, but at the same time, I feel uneasy trying to sell myself.  If it was a family member that needed a new kidney, I wouldn't hesitate to advocate for them online, but I don't know if I could do it for myself.  On the one hand, sometimes you can't just rely on stupid luck and you have to make your own.  On the other hand, do I really want to "compete" with other needy, sick people?  What happens if I post my profile and, say, a year later, how will I feel if no donor has deemed me worth saving?  With the people who need kidneys growing exponentially, is it wise to leave such an important process solely in the hands of an impersonal transplant unit, or do you put yourself and your pitiful situation out there for others to judge?

What are your thoughts about these sites?  I'd appreciate any feedback/discussion.  After reading page after page of profiles by desperate, sick people...well, it's just massively depressing.  Is it a case of just doing everything/anything you need to do to save your own life?

[Sunny]

I have never posted on those Web sites. How would I make myself stand out from others? What makes me think I, a fifty year old, am going to  have a more compelling story than anyone else posting on the site? I would like to know the statistical success rate of finding donors  from those sites before I consider using them. Plus, I'd worry about getting hit up for money. I'm a skeptic, I admit it.

[okarol]

We met Jenna's donor online in the "looking for" section of www.livingdonorsonline.org - actually, she found us. I am now an admin on the site and have witnessed some truly remarkable people donating to patients thay never knew prior to coming to LDO.
Jenna was told that her transplant center would not accept donors met through matchingdonorsonline.org because a fee is paid to participate on the site. Maybe things are different at your center, I would check if I were you.
I agree, it preferable to have a family member or friend advocate for the patient. Most people are not comfortable with self promotion. There are lots of ways to reach out. Moosemom, you may have already seen this but I wrote it when asked to share what we did. http://www.kidneytimes.com/article.php?id=20090730163148
Of course, there can be many pitfalls along the way, as shown here http://articles.latimes.com/2006/dec/30/local/me-kidney30 - but I would do it again (and may need to, very soon.)

[okarol]

Also, there are a couple threads that aren't news stories:
http://ihatedialysis.com/forum/index.php?topic=15644.0
http://ihatedialysis.com/forum/index.php?topic=1914.0
http://ihatedialysis.com/forum/index.php?topic=3507.0
http://ihatedialysis.com/forum/index.php?topic=12610.0

[tyefly]

  Thx  Karol....  good infomation.....   

[MooseMom]

Okarol, thank you so much for posting those links to past threads.  I had read most of them but had not come across your thread about Stephen.  He illustrates exactly my worries.  I was fascinated to read how he was eager to give a kidney because he felt this "need" to help someone who "deserved" it.  How can he be a religious person yet think he is God?  On one level, I guess I can understand the "It's my organ and I have the right to give it to whomever I please" mindset, and that may work in a situation where the donor wants to give to someone to whom he has an emotional tie, but if you really just want to help someone, anyone, is this mindset truly altruistic or is the height of arrogance and manipulation and self-agrandissment?  What makes anyone think that he/she can judge who is deserving?  I have been thinking along the same lines as Sunny...I, too, am a middle aged woman who does not have a particularly compelling story.  I want a normal, healthy life so that I can take care of my autistic son, my elderly mother and my hard-working husband.  There are thousands upon thousands of women out there just like me who need a kidney.

I've been awake for hours thinking about this.  The emotional upheaval must be tectonic in scope; Okarol, you know what it feels like.  Can you imagine if it were Jenna who was, while ill and on dialysis, subjecting herself to what you've gone through?  You were able to protect her from the psychological ravages.  I don't know if I could subject myself to more emotional savagery.  I don't know if I could put myself in a position in which I had to beg people to deem me "deserving".  But if I'm desperate...   Anyone with any other thoughts?  We have so many new memebers...that's one reason why I wanted to reopen this type of discussion.

[MooseMom]

Seeing as I'm largely having this conversation by myself  I'll just continue with my personal musings.  I have been thinking about the motivation of potential donors who look to websites for potential recipients.  The more I think about it, the more put off I am inclined to be.  Why don't the potential donors just present themselves to their nearest transplant center and inquire about donation protocols?  I know it may be easier to just look at a website, but if convenience is a prime consideration, they shouldn't be even thinking about donation because there is not much that is "convenient" about it.  Looking at a website and reading profiles of desperately ill people and then deciding which profile is most moving seems to me to be a bit mercenary.  I wonder if it is omnipotence tarted up as altruism.

My husband is not a match for me, so during my transplant evaluation, we asked about paired donation.  We were told that Rush has not yet done such a procedure but that they hope to have such a program up and running by the end of the year.  The surgeon then talked about something that really interested me; he said that they had resisted setting up a paired exchange program because as they investigated the possibility of doing it, they realized that even with paired exchanges, some people were not convinced that the exchange was "fair", ie the kidney they would be getting would be older than the one they were offering, that sort of thing. 

[sullidog]

I guess it has it's ups and downs. I would be worried about having a complete stranger online donate to me. I don't know this person at all and don't know if they were playing a game or are serious. Heck they could come and rob me for all I know.
I'd prefer having someone I know donate to me. I'm just shye of strangers.
Troy

[monrein]

I hate the thought of you feeling like you're talking to yourself MM, (not that there's anything wrong with it actually) so I thought I'd throw in an exchange of  experiences here.  When my first trx failed my neph said that he thought I should let everyone in my family know and see if anyone wanted to donate.  I just burst into tears, not what I usually do, and felt horrified at the impossibility of such a thing.
The first time round, in 1980 when I began D at 26, they wouldn't do non-related living donor transplants, so my husband was out.  My brother was very anxious to donate but he was only 16 and so they wouldn't consider him.  My Mum was dead (at 46 from melanoma) and my Dad was an alcoholic with a body that wasn't serving him all that well frankly and he never offered anyway.  My husband approached my sister's husband about my sister donating but he was against the idea and in fact so was I since she had just had her first child and they wanted more and I was too scared for her.  Many years later when she understood all that kidney disease entailed she apologized for her "lack of support" about not donating but I had never viewed it like that and she had absolutely nothing for which to apologize.  As it turns out she wasn't a match anyhow.
So this time I thought I'd go on the list again and wait like I did last time.  I've rarely been so surprised in my life at the things that happened next.  I got a call from a cousin in Florida, much younger than me, who was determined to donate to me.  And then offers began coming out of the woodwork and it freaked me out...still trying to get my head around it actually.  I had 13 in total, several were eliminated pretty quickly because of health issues of their own but the first four (my hospital will do four preliminary work ups at a time and then full work ups one at a time) all matched.  I'm lucky because despite a trx for 23 years I had zero antibodies.  My sister-in-law, was the choice in the end and interestingly her first date with my baby brother was on the day of my first transplant all those years ago.  She said that she'd had goose bumps back then (transplants weren't nearly as common as today) and had just been keeping hers warm for me ever since.
Some of the offers were very surprising...like the receptionist at the dental office who, while my husband was telling her about me being back on D, calmly said she'd like to donate if need be and that she didn't think it was any big deal.  And one very sincere but very funny offer was from my best friend, a guy I've known since I was 18, the most squeamish person around who used to play scrabble with me while I dialyzed but who would have to leave the room occasionally because the sight of blood was getting to him.  He told me that he'd donate but he wasn't coming forward to the front of the line, he'd be hiding in the back of the closet (no, he's not gay) listening and if no one else matched and he was the only one then he would.  I admired his honesty.

All of this to say that when it comes to individual motivations about donation, we just never know who or why.  I think that some people are simply extremely compassionate, they may have heard about or known someone in our predicament and they feel they want to do something meaningful.  I know a young man who donated bone marrow anonymously to a guy in the States but the recipient and his family didn't want to meet him...I think they were worried about his motives and that he might have started asking for money after the fact.  No bother to the donor...he said he felt that saving a life was the most worthwhile thing he could do and therefore that was satisfaction enough.  I also think that one has to be very careful about people out there with weird motivations. 

I would myself find it very difficult to go on to sites and ask on my own behalf about a donor but I'd certainly allow others to do so for me...begging by proxy you could call it.  And I have nothing but admiration for those who can and do advocate for themselves in this way.  I do feel however that I would choose lifelong dialysis or death before going overseas to "buy" a kidney.  I don't trust that potential donors aren't exploited by this and I know that I simply couldn't do it. 

After my transplant last year my husband has talked a lot about donating to a stranger but one of the reasons he wasn't the first choice for me is that at 62 his own kidney function is at about 60 gfr and I would worry about two people with wonky renal function under the same roof.  I'd be fine if he decided to give up some bone marrow however.  Me personally, I'm giving away no body parts until after my death for the same reason I'm not getting any tattoos...enough needles and surgeries to last several lifetimes without choosing any extras for humanitarian or recreational purposes.

[MooseMom]

Oh gosh, Monrein, I don't mind talking to myself!  My reflective postings have helped me crystalize my thoughts on the subject.  I appreciate you sharing your experiences; I enjoy reading your insights into so many things and appreciate you sharing your thoughts.  I guess it is illuminating to watch how different people react to your personal predicament, and I can see how overwhelming it must have been for you to see so many people offering to help you.  I don't have any brothers or sisters myself, but I have a fair amount of cousins; however, since I spent so many years living abroad, I didn't have the opportunity to really connect with them.  I have obliquely told them that I am trying to get on the transplant list, but I don't think they have really thought about it that much.  But I may be surprised one day, just like you were.

I am still of the opinion that if someone was truly altruistic, they would present their offer to a transplant center instead of picking some desperate person out of a virtual lineup.  I suspect that there are too many people who are looking for atonement or validation and want to fulfill some deep emotional need by donating.  I am thinking I might feel more comfortable going down the traditional road and hope that someone I come across in the real world will show me mercy.

[MooseMom]

Okarol, how is Jenna doing?  Do you think you really will go back to the internet to find a new kidney for her?  Oh, the emotional impact must be tremendously hard on you.  How can we best support you?

[paris]

There is a little guy on facebook, Zachary, that is 6 and in desperate need for a second transplant.  In this wonderful age of communication, he has had over 500 people ask to be tested.  Before Facebook, that never would have happened.  I am in the "golden years" BUT if I were a young mother, or in college, I would be doing anything I could to find a kidney donor.   My son joined Livingdonors when he was being tested. He would gladly give to a stranger because he has seen what this disease does.  It is a great site.  I wouldn't join Matchingdonors because of the fee involved --- just be personally.   It is an emotional rollarcoaster no matter where the kidney is coming from.  Every time someone was tested for me, I would get excited then the call would come that it wasn't a match.  After 7 times, I was done emotionally.   None of this is easy, is it?   But, we do what we have to do and just hold on to "hope".    My hope is you can get a new kidney and go on with living.   

[okarol]

I am still of the opinion that if someone was truly altruistic, they would present their offer to a transplant center instead of picking some desperate person out of a virtual lineup.  I suspect that there are too many people who are looking for atonement or validation and want to fulfill some deep emotional need by donating.  I am thinking I might feel more comfortable going down the traditional road and hope that someone I come across in the real world will show me mercy.

I know why people don't just go to a transplant hospital (although many donors do, it's rare.) It's just like doing volunteer work. Sure, you could just mail off a check to the March of Dimes and feel you've helped the world, and that's great. But some people need to see the result of their effort, to know that the directly helped a cause or person, and that it was worthwhile. There's a human connection that is missing when you donate non-directed because the transplant centers often do not let the donor meet the recipient (to avoid any issue of asking for money of favors afterward.) People like to know who they are helping. I know a priest who donated non-directed, has no desire to meet the recipient, and felt he fulfilled a calling, which is great. But he is an unusual case.
If you ever want to read some fascinating stories from the donors perspective, go to the "Experiences" section of LDO: http://www.livingdonorsonline.org/experiences/experiences.htm - there are some truly amazing folks in the world!
As for Jenna, she has to wait 6 months to recover from the brutal anti-rejection drugs (her white blood cell count has been very low) before she can consider a transplant, so dialysis will probably begin before then. I pray for her to get through this, it's been a tough life for her since being diagnosed as a young teenager, and we do the best we can to support her, while still pushing her to be independent. It's a moving target. Thanks for asking.

[MooseMom]

Yes, I can certainly understand how one might like to see the result of their kindness, and I can certainly understand the enjoyment of that special relationship that comes from being in a donor/recipient pairing.  After reading your account regarding Stephen, I honestly admire your courage in pursuing that particular line of enquiry any further, and you and Jenna were greatly rewarded for your bravery.  It must have been so very hard to open yourself up(and Jenna, to a lesser extent) to the prospect of great disappointment, but as they say, "No guts, no glory."  I will certainly read the "Experiences" section as after reading about Stephen, I want to have my faith in people restored.

Do you think you will once again return to the web for a kidney for Jenna?  How does Jenna feel about that?  How do YOU feel about that?  Your family has gone through so much, and I hope that you will very quickly find someone who can help your daughter.  How do your other children cope?

If you don't mind my asking, does Jenna's current donor know about Jenna's condition?  If a donor needs to see that their donation was worthwhile, how does he/she cope when their donated organ is rejected?  I'd be really interested to know how one has this discussion with a donor...
Please keep us posted about Jenna.  I think about the two of you so often.  Thank you for sharing your stories; that's very generous of you.

[okarol]

Jenna's donor has been involved all along - mostly through facebook and emails, but we spoke on the phone the day we found out Jenna was in rejection. Patrice is remarkable, so kind and supportive. She says she does not regret donating even though it's only been 3 years. She's training again for the Boston Marathon in April and we will cheer her on. She's such an inspiration to all of us. And she knows she gave Jenna 3 wonderful years, and knew full well that the kidney might last 15 minutes or 20 years. I imagine there's some loss and sadness on her part, but she has not shown it.

If you hadn't read about Patrice, there are 2 stories http://ihatedialysis.com/forum/index.php?topic=2675.0 and http://ihatedialysis.com/forum/index.php?topic=8775.0 - LIVING DONORS ROCK!

I am following Jenna's lead. I will help her do whatever she wants to do, and for now we are focused on keeping her kidney going as long as we can. I cannot predict what the future will bring. Her 19 year old sister said she wants to be tested to donate. She is a freshman in college in New York, so we'll see how things go here. It's really one day at a time for now.

[monrein]

Karol....these are for you and Jenna...

I think that one of the crucial aspects of donation is the donor's understanding and absolute acceptance of the fact that it is a GIFT.  Once given, it is yours no longer.  If given with any kinds of strings attached, whether emotional or other, then it can be a ball and chain for the recipient.

[MooseMom]

I couldn't quite understand why there was so much emphasis on psychological evaluation of donors.  I figured that if someone wanted to donate, assuming there was no financial reimbursement involved, then it was nobody else's business.  But now I think I more fully appreciate some of the emotional issues involved, and I am glad those safety protocols are in place.  It's important that everyone involved have the same definition of "gift".

Okarol, it looks like you have been so fortunate to have Patrice in your lives for so many different reasons.  I am thankful that she has been so supportive at every step along the way.  I'm sure she does feel sadness but probably not for herself but, rather, for Jenna and for your whole family.  Yes,...one day at a time.  Maybe they should make a TV show about all of us doing just that...