Non-directed Donor-just accepted

[Turnerjam]

Just accepted as a non- directed donor.  I feel great and am excited about the opportunity to help someone live a better life.  However, I have been shocked at some of the negative comments or general disagreement with my decision.  I have Found myself defending myself a lot recently.  My spouse is "supportive" but I even sense some resentment recently.  Any suggestions?

[Anonymous]

I just barely contacted my local donation representative (is that what she's called?), but have been thinking about donating for a long time. Worrying about what my family or friends will say is a main reason I have decided to not tell anyone about my decision to be a donor, before or after the surgery (if it happens). I've only told a friend about but it was a mistake and she promised not to tell anyone. I know I have to tell someone eventually so I can get home from the hospital, but I still want the fewest amount of people possible to know.

If I were to tell my family I can think of a few siblings who would be quite negative and try to talk me out of it. In response to them I would probably tell them their negative opinion has been noted and does not need to be repeated.

I would love to hear more on how you deal with the criticism, so please keep us updated, thanks!

[Turnerjam]

So far my response has been "what if someone I loved needed a kidney.....how could I ask such a thing, yet not be willing to do it myself".  My other response has been "what would you do if you saw a burning car and a woman yelling help me....would you drive by or stop?"  Most people would say they would stop.  I then explain, for me, this is no different.  Someone out there needs me to "pull them out of the fire".....this is bigger than me, and I prayed that God direct me if there was something bigger that I was supposed to do.  I slowed Down and listened to His signs.  This is where he led me.  Lastly, I have simply said to some "what would Jesus WANT me to do....be selfish because of the what-ifs in life....or trust that he will be there with me".

I have two children, so people say what if he need a kidney someday.  My response.....no guarantee I'm a match, maybe this is my pay it forward in advance, lastly, what if they never need my kidney and I missed a chance to help someone!  I think I would feel bad about keeping my spare because of a " what if".

[shoopies]

I was approved about a month ago as a non-directed donor and will be donating my kidney in June. Same thing here - I've been surprised at the lack of support by those who are closest to me (namely, immediate family). It honestly makes me feel a bit resentful, because I am proud to be doing this. But at the end of the day, I need to do what I feel is right. I'm lucky that I am single and so my immediate family is my sisters and parents. I can't imagine the difficulty of having a spouse be not supportive.

[Anonymous]

I really like the "person in a burning car" scenario, cause they really are the same, but the person that is in the burning car scenrio just looks scarier.

All your answers are good and I'd think as time goes on theyll eventually share your sentiment that this is bigger than you and you're simply helping someone that desperately needs it. That's how I feel as well.

[elephant]

Dear Turnerjam,

How fortunate you are to be able to donate!  And to have a loving spouse who is, naturally, concerned about your welfare.  My husband was worried about me too, so I tried to be especially attentive to him and not say anything negative.  Everything worked out great in the end.

Love, elephant

[Turnerjam]

I have just decided to be careful who I tell.  My surgery is scheduled for the middle of June!  In the meantime, the week before I am hosting a huge fundraiser for my friends mom, who has ovarian cancer.  I am 100X more stressed about getting sponsors, securing silent auction items, and selling tickets for the fund raiser than I am the donation.  Last night I was thinking....I feel like I am in this all alone....to which I thought long and hard and realized, I AM!

[Mizchelle]

During this time whether it is a week or a year before donation, unsolicited stress should be kept at bay.

I suggest telling only the closest people to you before surgery that may need to care for you right after surgery.

People usually respond negatively due to concern, fear or lack of knowledge. Let everyone else find out on their own (and they will), and the best part about that is that people are most positive, understanding and compassionate "after" the surgery.

I've learned that my means and understanding of helping to save/extend another's life may seem like just plain common sense, where others can't even comprehend it..and that's "their" journey.

Some friends comments set my ears on fire, my family became distant and my sister (for her reasons) didn't bring the subject up and wouldn't get tested to see if she was a possible match.  I donated to a complete stranger, which I understand is doing quite well now, and it made a way possible for my Mom who was no longer thriving on dialysis, to receive a matching kidney.

For me personally, all that chatter created stress, false doubt and fear. I realize now that the roads less traveled are done by the feet of some pretty humble but amazing people in the world.

Living Donors are some pretty Amazing People. 

[/b]

[Turnerjam]

Well, I heard from my the person who is helping with the chain through the NKR today.   I am a possible match for someone out there.  I will get a package for some testing to have done tomorrow and sent back.  I discussed everything with my boss yesterday and she is very supportive, as is my company HR dept.  I can take up to 90 days full pay, full benefits, full everything!  Then 70% for another 180 days if needed.  GOOD LORD, I shouldn't need more than 45 days off!  I did tell one coworker and she is very supportive.  she was asking me when I was going to tell the others and i replied that I may not.  She too was floored when I told her the general negative response I have had.  She said that I am "I have absolutely lost my mind for doing this....in every GOOD way imaginable".  I have a few cheerleaders!

In deed it is a road less traveled!

[Karol]

I think anyone who is willing to take a risk to save another person is a special individual. The improvement that a transplant can make in someone's life is HUGE. Many people cannot understand it because they would probably never do it, especially for a stranger! I hope all goes well for you. Good luck!

[MrMike66]

Turnerjam,

Great minds think alike.  I used the child in a burning car scenario myself when explaining to people about my decision to donate.  I donated as an altruistic donor to the paired exchange program.  My chain had 6 people that all got kidneys. 

I told select people at work because I had to work through having time off etc.  I did not tell my close family members until the week before surgery (they live far away).  I didnt tell most friends at all until after.  The few people that I did tell were either very supportive or very negative.  Its something to prepare yourself for.  I agree with some other posts that its mostly fear and lack of understanding.  I think code for they love you and are worried about you.  You should feel all the stronger because you have the courage to do something most will not.  The more I educated the skeptics with real facts the more they came around.

It all comes down to your becoming comfortable with your own decision, irrespective of what others might think.  I feel tremendous satisfaction that I told the few people I did, had the surgery, recovered well, and know in my heart that I helped several people live a better life.

WE can all be your cheerleaders too.

[Fr Pat]

     I suppose that if someone offers a negative comment about one's decision to donate, a helpful response might be: "If YOUR child or YOUR spouse needed a transplant and you could not donate, would you turn down my offer to donate to them, or discourage me?"
I think that people's responses change a lot when they FEEL what it is like to need a transplant.
     Fr. Pat

[Turnerjam]

Well, I have slowly told a few more people and I have slowly I am getting less negative responses.  I think it's partly because I have a surgery date and people know my decision is made.  I have had am opportunity to educate some people and I think some people have even started questioning their ability to give such a gift.

There is a big part of me that doesn't want to be silent on the "front end" of this process....because there are valuable lessons before and after the operation.  If we truly want people to understand this process, I think it's important for me to BE BOLD and stand tall in this process.  As I tell people I say "some people think I'm crazy....and I'm fine with that?  Maybe I should have been more crazy (and selfless) a long time ago!"

[Turnerjam]

Everything is a go for June 14th.  I do have pre-op appointments on the 12th, so assuming all is well there then the 14th is a go.  I'm a non-directed donor, and the chain will allow for 3 people to receive new kidneys.  Any words of advice between now and June 14th?

[Fr Pat]

     If you have not already sen them, you might like to read the "helpful hints" that the National Kidney Foundation collected from past donors:
www.kidney.org/transplantation/livingdonors/infotips.cfm
       Fr. Pat