If you are an undesignated donor

[hopingtodonate]

When thinking of undesignated living kidney donation many thoughts and questions to consider.  Wondering if anyone has any feedback about this concept. Someone wants to donate a kidney to anyone in need and let the transplant team do what they do to find your match.  At the risk of sounding like a jerk I am just going with "no such thing as a stupid question" and that honesty is ok. What about the scenario that your future recipient could have kidney failure due to lifestyle issues like obesity or lousy eating habits resulting in diabetes, etc.  Of course one does not want o play judge and in giving something you relinquish control but if one goes through major surgery and recovery (hopefully no long-term complications) would you want to give your kidney to someone that is ill  bc of choices or someone that is ill for reasons not having to do with lifestyle choices? Or does it matter?  Should it matter?  Believe me-I am not perfect and no one is but a few donors or potential donors must have had this thought go through their minds.  This path to potential donation is a process and all of my thoughts and questions are part of it.

thank you

[Fr Pat]

Thoughts:
--- If you donate as a non-directed donor through www.kidneyregistry.org they will try to start a "Chain" with your donation. They would try to select a recipient for you who has a willing but incompatible donor. After you donate, the recipient's incompatible donor would donate to someone else. Again, they would try to choose another recipient who has a willing but incompatible donor who would likewise pass along a kidney to the next person. Your initial donation might result in several otherwise impossible transplants. Even if one or more of the recipients later did not take good care of the donated kidney, most probably would.
--- If you want more assurance that your recipient will take good care of the kidney you could choose your own recipient at such sites as www.matchingsdonors.com and communicate with him/her directly before you decide.
--- Note that many doctors/hospitals may not put a patient on the waiting list if there is clear indication that he/she will not be compliant later with the post-transplant care.
--- I myself opted to just let others do the choosing.
         
     I hope these thoughts may be of some help.
               Fr. Pat

[Clark]

As Fr. Pat suggested, you can increase the utility of a non-directed donation by agreeing to participate in an exchange chain, simultaneously spreading the risk that any one recipient will have post donation behaviors you find regrettable. I was fortunate that I first consider donation as an unrelated directed donor to an individual I had no qualms about. We openly discussed the fortunate happenstance of this mutual respect we had as acquaintances, that has only deepened as we've become close friends, before and since our surgeries. I didn't have to seriously consider the challenging scenario you present due my confidence that her established adult behavior was likely to continue. Not all donor candidates have this confidence, justified or unjustified, and many have grappled with just this issue here both as candidates and after donating.

Many are deeply conflicted by this or other considerations, as you seem to be. Many become donors despite their concerns, some do not. I know of no good studies of this, and few limited ones. Some experience regret or a sense of betrayal after donating as their recipients' risky behaviors either persist, are revealed, or develop for the first time in their lives after surgery. Bear in mind that depression and the effects of depression on behavior are risks you face as a candidate, that the recipient faces while on the waiting list, and that both of you face both in the perioperative period and over the long term. Again, the scientific literature is less robust than we wish it was on this topic, but has confirmed the existence of the risk.

Only you can decide for yourself what the risk/benefit result is for you. Best wishes, and keep asking the hard questions. Both the questions, and your own answers to them, are of deep value to you as you continue on your own path to donation.

[hopingtodonate]

Thank you.  I really appreciate your thoughts, perspectives and the information.  Many things are a leap of faith and trust in those making the decisions such as the transplant team. Included in your replies are ideas along the lines of after a donation and the care the recipient takes of themselves. I would think that a high percentage would do what they could to stay healthy and at that point it is Their kidney. I had been pondering the many causes of end stage renal failure and if some patients, what percentage I don't know, find themselves with this illness due to eating habits, obesity, lack of activity, etc.?  In other words, what percent have these issues that most likely could have been preventable?  Maybe questions that are geared to statistical and medical data.  I guess it would be along the lines that if someone smokes for 40 years and then needs a lung transplant.  Would a perspective donor feel some conflict about that?  Maybe some would and some wouldn't.  I guess if I developed an illness due to my imperfections as a human being and choices I made that were detrimental to my health I wouldn't want to be treated harshly because of that. Thank you!

[WilliamLFreeman]

     A truly "undesignated" or "non-directed" donation is without any conditions about the possible recipient, other than (from what I understand) that:  (1) a transplant center listed the potential recipient on the United Network for Organ Sharing (UNOS) national list of potential recipients; and  (2) by so listing the person, the transplant center has determined that the person is medically able to undergo the transplant surgery and treatment of anti-rejection medicines after the operation; and  (3) (usually, but not always) the recipient has been listed for a longer rather than shorter time.  By law and UNOS regulation, the transplant center does not consider any other factor -- not gender, race, religion, social status or history or “worthiness,” economic status, whether the person’s own behavior “caused” or “contributed to” the renal failure, other behavior, etc.
     That law and those regulations were developed in a widespread revulsion to a practice when dialysis was first developed with a quite limited number of dialysis machine available.  In at least one city, an anonymous committee (called the “God” committee or similar by a Life Magazine article about one such screening committee) included those other factors, not just clear medical factors, to decide who would be put on a dialysis machine -- and those not put on dialysis would die of their renal failure.   (As I would say about all human institutions, I cannot say that EVERY transplant center ALWAYS follows those regulations and NEVER considers those other factors.)
     I was, like Fr. Pat, a non-directed donor.  As a physician, I medically cared for all people who came to me without regard to those other factors.  I also had been (and continue to be) a frequent blood donor, in which my blood is given to people who need it for whatever reason, including (for instance) people attempted suicide by shooting themselves, may be heroin addict or murderer or …, etc.  I explicitly told the center in which I was going to donate a kidney, that I did not care at all who received it so long as the person medically needed it and was a match -- any race, with or without any physical or mental or development disability (e.g., a person with Downs Syndrome), regardless of personal behavior, etc.  I also knew that my donation of one kidney would move everyone on the UNOS recipient list up one notch to receive a kidney.
     As Fr. Pat and Clark pointed out, being a non-directed donor to start a chain initiates several donations, not just one’s own, thus affecting more people than just one recipient.  (I donated before chains really began.)  To be listed as eligible to receive a kidney by a chain, the potential recipient has to have one factor more than the three listed above:  the potential recipient has to have a person who is willing to donate a kidney (and has been found medically healthy enough to donate) but is immunologically incompatible with the intended donor -- and thus will donate her or his kidney to someone else in the chain so that (incompatible) originally-intended recipient receives a kidney by the chain process.
     Also as Clark pointed out, not everyone is willing to be a non-directed donor, and accept that one’s kidney may go to a recipient whose own behavior “contributed to” the recipient’s renal failure, or who may not take as good “care” of the transplanted kidney as the donor would like.  Moreover, as with any person considering being a living organ donor, there is no guarantee that the donated kidney will “take” or function at all, or function for more than a few months to 1-2 years.  And finally, there is no guarantee that the donor will remain healthy and donate without serious, long-term, health complications or even death.  Yes, the majority of us donors do well after donating and a recovery period of variable duration.  But not all of us.
     I wish you the best as you consider all these issues.   
     Those issues  were not easy for any of us -- both directed and non-directed donors -- to consider, either.

[hopingtodonate]

Thank you for your reply.  Many good points were made and lots of food for thought.  I, too, would not want to see anyone judged as being "worthy" of medical care, technology, organs, etc.  I appreciate the feedback and chance to throw questions out there without being considered an ass.  Just lots of thoughts bouncing around and all of the postings here and replies are very educational to me.  If I throw a thought out there it's not a statement of a stance I take---just pondering different things.  I think its all helpful to me as I learn about lkd and proceed on my journey to see if I will be accepted and/or donate.  I really do envision myself doing this if the medical team gives me the ok.  I saw a news piece last night about a dad with a wife and 2 kids that has had kidney disease for many years. Misses out on a lot and spends hours every day on dialysis.      I would love to be able to help someone and be part of them and their families having a better life.

[Fr Pat]

     I have a question in this regard, and perhaps Dr. Bill or others here might clarify it for me. I had read in the past that a patient had to be considered "compliant" in order to be placed on the waiting list for a kidney transplant. For example, if the patient had diabetes but consistently refused to check blood sugar, usually neglected to take prescribed medications, made no effort at diet control or exercise, and thus suffered kidney failure he/she would not even be placed on the waiting list. The reasoning was that it appeared probable that the patient would continue to be "non-compliant" regarding caring for a donated kidney it would be a waste to do a transplant. But if the patient previously had been negligent but now showed genuine signs of a change in conduct for the future, he/she would be approved to receive a transplant. So it was not a judgment on "worthiness", but a medical judgment on the chances of real long-term success of the transplant.
     Does anyone know if this is the current practice or not? Or does it vary from one hospital to another? I would appreciate any up-to-date information on this question. Thanks.
    Fr. Pat

[Clark]

Being labeled non-compliant can happen to any patient at any stage of interaction with any member of the medical establishment. Once it's in a patient's chart, regardless of why, or by whom, it affects all further interactions. When a transplant committee is asked to accept a new patient to their program as a candidate, they see the chart. Each meeting of each committee at each transplant center is a gatekeeper for who gets on the list. As you say, the reasons to refuse a patient as a candidate are ideally evidence based, including both whether or not transplantation is a potentially superior treatment for the would be recipient, as well as whether or not this would be recipient is likely to be a compliant patient once entrusted with the gift of an organ. While the details of how and why a patient gets labeled non-compliant are idiosyncratic, and the members of a responsible transplant team will directly address this to attempt to render a just determination, each one of them has their own views, and each transplant center has their own policies. Clear as mud, sorry.

[Snoopy]

Dear hopingtodonate,
    I think you are right to try to sort through your feelings about taking this fairly big step.  Nothing to apologize for.  You have gotten lots of excellent advice, especially to "keep asking the hard questions".
   As a non-directed donor, I had some of the same questions.  Among my conclusions were that, though I obviously didn't want my donation "wasted", I had no control over the life of my recipient, and that it truly would be his or her kidney, and no longer mine.  Also, as others have mentioned:  there is a risk that your precious gift will be rejected biologically by your recipient's body, that your recipient will still not make a full recovery, that you might suffer some lasting harm (even death), that your recipient will engage in irresponsible or even self-destructive behavior, etc. 
   If this last possibility really freaks you out, you may try to "pick your recipient".  I see no special reason to look down on that approach.  In the end, you have one kidney to give--however you do it--and each donation does bump up everybody else on the list.  And I can't blame you for hoping your donation is not wasted.
  In any case, I wish you the luck I have had with my wonderful (non-directed) recipient, with whom I have become close friends, and who is an amazing person.  Actually, it was worth donating my kidney just to get to know him!
   That said:  I've noticed that there really is quite a lot of "happy talk" that tends to soft-peddle possible unpleasant results of organ donation.  Note: I am not talking about LDO, where people are overwhelmingly sincere and play it straight.  LDO is a goldmine of support, information, and advice.  But, especially in the media and in the literature of certain organizations, there is a tendency to downplay risks and so forth.  And that is why I advise people to take a look at a very different site:  Living Donors are People Too (http://livingdonorsarepeopletoo.com/), run by a women who had a very unpleasant donor experience.  If anything, that site tends to play up the negative side, which--if you put it in perspective--can be a healthy balance to over-optimistic P.R.  Among other things, she highlights limitations in the actual knowledge base on long-term donor health, weaknesses and conflicts-of-interest undermining the mechanisms designed to protect donor welfare, etc.  It can actually get depressing, and I advise using it more as an adjunct to LDO, but I preferred to be aware of the negative side when I was making my decision.
   Good luck to you!
   Snoopy