Donor
Donors - how do we ask someone to donate an organ?
November 23, 2020
in Donor
What do you prefer - straight out asking the question or a more indirect way of pointing to the need and hoping for you to step fwd?
1 - 15 of 15 Replies
This is definitely a difficult and delicate situation. I was fortunate enough to have people step up to be tested without having to be asked, but knowing that it can sometimes take testing multiple people to find a perfect match, I also made a general post on Instagram explaining my situation and need for donors. By taking this indirect approach I was shocked by how many strangers/people from my past came forward in addition to close family and friends!
From a donor perspective I think there needs to be a LOT more education/information about living donor programs. I think there are a lot more people like me who would gladly step up if they knew how easy it is to start the process, how much control they can have, and that there are financial resources to make it possible.
Transplant Patient
Let us create that awareness! I am sure my sisters and father would love to be part of that too @Lisa_Hehenberger @Iris8324 @mhehen
Transplant Patient
I took a really direct approach and just started asking everybody their blood type. @Jacob_Hiebert how did I convince you to give me your liver?
Indeed @DeAnna_S Lots of groups, but it's a great question. My first two transplants came from deceased donors. The third is from a living donor. The American Living Organ Donor Fund exists as just one group to help living donors. A lot of groups have initiatives to help people ask someone to be a donor or to try to help them find a donor. Some groups exists to convince people to become living donors. I can tell you that one of the biggest challenges that the ALODF group faces is convincing people to donate money to essentially care that living donors might need financial help or someone to look out for them in another way. I don't know a lot about fundraising, but it always seems easier to get people to write checks or open up their pockets when appealing to them about someone who is sick (like I was for many years) rather than healthy. I also always find it hard to ask people to get involved. But, that's just my opinion. Take it for what it's worth!
In my experience, I found it unfortunate the need/process for living donors was not really “advertised”, along similar ways blood product needs/donors are solicited from the eligible public. I had to research & pursue the kidney donation process on my own, & even after connecting with a Donation Center & Donor coordinator, I had to convince them this is something I wanted to do. It requires determination, effort & continued follow up by the donor to get: physically evaluated, matched & scheduled. It is worth the pursuit, but the pursuit did not come from the donor Center, rather the effort was up to the living donor to pursue & advance the steps until finally ready to schedule the donation procedure.
I made a FB post and some family members started to get tested. I didn't realize how hard it would be to match me, so I was bumped to the top of the list when a match came up for me (I was 99% sensitized). I had no idea what that meant at the time and didn't fully understand it until after my transplant when doctors kept remarking on how amazing it was that they'd found a match for me. They told me that if that deceased donor hadn't worked out, that it likely would be another decade before I'd find another match.
I have seen a lot of approaches to this. VInyl on trucks asking for a donor. Ads on the radio. Word or mouth and social media.
When it was time for our family to list our infant son so many people approached me to ask about living donation. I think this is easier to approach when the person who is sick is young and hasn't had a chance to live a full life yet. No one wants to see a baby sick, in the hospital, or pass away.
And it really brought a community together in the process.
In that process I couldn't even think of asking someone directly. Still can't.
Actually, I did send an email to our children (who were all married with kids) to present the situation in case they were able to. No pressure.
But for me, it was getting the word out on social media and email. I have an extensive network and ended up with 20 potential donors. That was whittled down to three and ended up with a young lady who used to hang out with our family when she attended college locally. (Long story)
Here is the blog I kept through the process: https://mikeyskidney.wordpress.com/
And here is the entire donating process and the chain it created: https://mikeyskidney.wordpress.com/2016/01/06/a-chain-of-love-or-how-to-save-five-lives/
I don't really feel that "asking" is always the right way to go about it. In my opinion, it puts people in a corner to basically say yes or no. My approach has always been to share my personal experiences especially how my life has changed and further educate people and the general public on organ donation. There are a lot of myths/stigmas and unanswered questions floating around in the realm of donating an organ. The more I shared ME and my journey and the more I provided resources and education, the more people expressed their interest in donating (whether it was to me or not) because through the resources and education, they felt more confident in the whole process and quite frankly empowered them.
I am in the middle of the Bible Belt and it sometimes makes it hard and sometimes makes it simple. Obviously, some of the myths within the religious community can be a deterrent when discussing organ donation. However, once you can overcome that, you will have a captive audience. I usually leave the conversation with, "just read about it, talk about it and pray about it." I'm still kinda new at discussing donation since in less than 7 months post TP, but I feel as though this allows them the ability to make an informed decision. I think if they have the facts, they will be more likely to donate.
Transplant Patient
@ole_ball_coach i agree that giving facts and then letting them read and absorb before asking is the right approach
Transplant Patient
I think, being direct and doing it without delay is the best approach. I feel that the minute, Kidney & Liver patients find out they need to be transplanted - the discussions should begin. Share your story and make the plea to as many people as possible, starting with adult family members and friends to strangers even (church, work places, community groups etc).
Of course, "the big ask" is never easy - but, time is of the essence. Most of us know that "preemptive transplants" yield better outcomes. As do organs from a living donor, with minimal risks to the hero donor's health.
Best of luck to all who are waiting for a life-saving organ. 👍
Kinda off the subject but is about donating organs, I was contacted today and located my donor's family. We exchanged emails, and she is suppose to call me. I think that she is as excited as I am. It is a little scary, but after 8 months of wondering...I really can't wait to talk.
Has anyone on here met an unknown donor family? I know that many had family and friends as living donors.