Starting Place for Non-Directed Donation?

[JulieT01]

I'm not really in the business of playing God and assessing the worthiness of possible recipients.   So, having decided that I'd like to pursue living donation, comfortable with my homework done, my health, and my resources to do it, I can't seem to figure out a starting place for a non-directed donation.

I can go through matchingdonors.com but as I said, I don't really like the sense of "picking" someone.   I have emailed the major transplant centers in my state (there are three) regarding my interest, my general health, my blood type.   Complete and total blowoff.   

In my perfect world, I'd express interest, they'd do the full work-up/eval, HLA typing etc., and let me know if they need me/want me/have a match.   But this does not seem to be systematized, or at least I'm making my contacts in the wrong way.   I can go directly to the website and make contact with folks in my state seeking an A- donor, but kind of wanted to leave the "selection" process in the hands of the universe (if that makes sense). 

[Michael]

The National Kidney Registry might be an option for you: http://www.kidneyregistry.org/?cookie=1

Let us know how things go.

[Clark]

  Best wishes on your journey to donation! If you're interested in the possiblity of your donation starting a chain of paired donations, please consider talking to the manager of the OPTN/UNOS National Kidney Paired Donation Project, Ruthanne Leishman Hanto at 804-782-4770. The web site is http://optn.transplant.hrsa.gov/resources/KPDPP.asp .

[hannah_92190]

I was having the same issue. I had no idea where to start. I have done my research and am set on becoming a donor as well.

I however went the route of finding someone to offer to. Not so much in the way of playing God, but more of just finding someone with the same blood type and moving forward. Kind of on a "first come, first serve" basis. If it were as simple as putting a billboard up saying "I have a kidney, let me save your life", I would do it. 

Having said that, I have started the process with the first step of registering as a potential donor for said individual. For me, it seems simpler because I'm certain my potential recipient is not going to let me go unseen, forget to call me, or forget to let his medical team know that I am here and willing to give. Strength in numbers!

[Fr Pat]

Dear Julie,
    Hi. Although non-directed organ donation (in which the organ is not "directed" to any particular person, but will be given to the best match the program finds) has become more common, some hospitals are still not used to dealing with it. So a potential non-directed donor has to be patient and firmly persevering. Some hospitals presume (based on sad experiences) that someone who makes such an offer is probably mentally unbalanced, so don't consider it worth the time to even start an evaluation. So you have to plug away and SHOW that you are sane and serious.
     I would like to support the suggestion that you try the www.kidneyregistry.org site or the UNOS project mentioned in the earlier postings. They offer two advantages:
--- they will try to match you with a recipient who has a willing but incompatible donor. You donate to that person, and then that person's incompatible donor gives a kidney to someone else. Again, they look for a "someone else" who likewise has a willing but incompatible donor, and so on down the line. Your non-directed donation could start off a "chain" of otherwise impossible transplants. And every successful living donation takes one more patient off the waiting list for organs from deceased donors, moving everyone else higher on the list.
--- Since these programs are accustomed to evaluating non-directed donors they may be able to direct you to the nearest transplant hospital that DOES welcome non-directed donors.

     But, be patient. I may be a short road, but it will probably be a long one with assorted obstacles to overcome. But it is well worth it.
            best wishes,
              Fr. Pat

[WilliamLFreeman]

Julie,

I appreciate very much your desire to donate while not "playing God."   

I agree with Michael, Clark, & Fr. Pat.  In addition, you can contact a transplant center near you, and first ask them if they do non-directed donations.  If yes, and if you pass the work-up, the center can find the best match for you among their patients awaiting a transplant.  (That is what I did.  I did so before "chains" such a NKR were developed.  If NKR had been available when I donated, I probably would have applied to NKR.  However, I am *HIGHLY* satisfied with my donation done by & in my Center.)

In addition, LDO has several posters who were/are non-directed donors.  Some may respond to you here.  You can also message me & others to perhaps set up a time top talk by phone.  I have contact info for other non-directed donors.

Bill

[JulieT01]

Thanks.   You all have been a great resource.  I will follow a variety of these leads.   I feel like now I should insert a joke affirming my sanity but it may be misunderstood!

[pkoke]

Call UAB University of Alabama at Birmingham.  They take it from there!  1-888-822-7892

[jstx]

I believe Johns Hopkins will as well. I know someone who donated there as a non-directed donor. I didn't know my recipient at the time that I began the testing process but I had found a recipient with a compatible blood type to mine (no small feat really since I'm AB) so the center was A LITTLE less hesitant. However I did still have to prove my "sanity". I do joke that I made it through the psych eval! They could see I was sane....just quirky! It was a very worthwhile process & I wish I could do it again. Good luck in your journey!

[KatieF]

Julie,
Have you inquired or registered with kidneyregistry.org yet? I too am in the very preliminary phases of wanting to become a non-directed donor. My husband and I have had several discussions, however, I don't want to register yet because I don't know if this means it is an official commitment. I e-mailed and I'm hoping to hear back from them. I'd be curious to know what you've heard thus far.

Thanks,
Katie

[jstx]

Katie, these are only my thoughts because I did not go through kidneyregistry.org but donors can back out up until the moment they take you into the operating room. They will give you a "medical" out for it. I would say do your research which it sounds like you are, discuss with your husband and then decide. But nobody will force you to follow through if you change your mind. It's a big deal and major surgery. While the majority of outcomes are good, there have been some donors who experience short-term and/or long-term complications. I had a wonderful experience and would gladly donate again if I could. But not everybody feels that way. Good luck with making your decision. Keep us posted!

[KatieF]

Thanks for the quick response JSTX!

Kidney donation is something I've been contemplating "seriously" for more than a month. This week I finally worked up the courage to discuss with my husband, I was afraid he might think it was a weird idea, but he didn't at all. We discussed our personal/family situation, the research I'd done on it, and we watched the TakePart documentary that involved a chain that Karen in LA initiated. My husband was very open-minded and encouraged me to continue gathering info, and we will continue to have more discussion. There are a lot of things that we need to learn more about (long-term risks, my family history, etc..). From the initial research we've done, we see it as a real possibility, and something we could both commit to from a mental, physical and financial perspective.

I will keep you posted on how it progresses if we decide to proceed.

[PTurner]

Thanks for the great resource.

[jennybebopper]

Nondirected donation is a particular sweet spot for me.  UNOS actually publishes these numbers when I did a little research, found that you can use the numbers to track down centers who are more likely to hear you out.

Unos website: unos.org
I am looking for: Data Forms
View Data Reports
I did regional data, this might be best to find a few options in your area before narrowing it down
Category: Transplant
Living Donor Transplants by Donor Relation

If I described this correctly you should be looking at some data, and can add a row by Transplant Center. There is a column for "nonbiologic, unrelated: anonymous" so you can see which centers have already done a couple (or many, as is the case for certain centers).  I would love to see all centers encourage nondirected donors but that's not the case yet; but if you decide if is something you want to pursue, there are plenty of safe centers out there willing to help out if you do your research.