Getting the word out

[Jewels]

I am at a loss on how to get the word out that I am set to be a live kidney donor for my sister.  I have been staying close to immediate family and close friends, but I really haven't shared this with many of my extended family and circle of friends.  Part of it is because it has been a "maybe" while I was in the evaluation stage - now, it is finally for real.  It doesn't feel right to just pop a Facebook status out there and say, "can't wait until July 15...donating my kidney."  I am torn between not wanting to be very public and yet wanting my friends to know what I am doing for summer vacation.  I thought about a blog, but again - do I suddenly send it out to my address list?

I am curious how some other donors and donors-to-be have handled getting the word out?  Or maybe not getting it out much at all?

Thanks as always for the feedback!
Julie

[ohtobeahayes]

Hey Julie!
Yes, this was the hardest part for me.  I really wanted to tell EVERYONE, but not so that I would hear how great what I was doing was. I wanted to tell people so they could know what's possible, and who knows...someone else might hear and realize they could do that too, ya know?
I have a blog, so it was in there, but it's my life blog, not just about the donation. I didn't tell as many people as I would have liked to, and people I knew were surprised when they saw it on the news or read it in the paper.  It was just a weird space for me.

So, being on the other side of it now, I say POST IT ON FACEBOOK. Do it. Those people are your friends and family and it's SO okay to be excited to do this and be excited for your sister, and to have the support. Some people might not understand it, so look for opportunities for educating.

After surgery, I posted a picture of my kidney. HAHAH! And of me in the hospital asking if anyone recognized me without my kidney. I will admit to being a total dork though> There are people who never told a soul. EVERYONE IS DIFFERENT and it truly is a chance to show people what is possible in this great big ole world of ours. I think I'd fall over if I heard that someone heard that I did it, and realized they could do and went for it.

Don't be afraid to shine. You know your heart. We even know your heart. Shine on!

Nicki

[Fr Pat]

Dear Julie,
     Congratulations on your great desire to donate! Wonderful!
     Every donor is different, but one thing that you might want to keep in mind is that you are always free to change your mind and back out, right up to the moment of the pre-op "happy drug" injection. At least at my hospital even though I was in my gown and on the gurney they asken me once again if I still wanted to do it. If not, they would "find" a reasonable medical reason to exclude me and send me home without embarassment. It sounds like you are indeed quite sure, but you will still have that option. So while telling everyone in advance has its beauty, I tend to suggest that potential donors just let people know on a "need-to-know" basis ahead of time. There will be plenty of time to share the news afterwards. But that is just my opinion.
     best wishes,
         Fr. Pat (donor, '02)

[Scott337]

Julie,

I would agree with both Nicki and Fr Pat;

On one hand, the emotions you're experiencing need an outlet of some type and sometimes, sharing on a need-to-know and relatively minimal level is not enough to quench the desire.  On the other hand, I was hesitant to share with anyone other than my wife and children (not even my siblings) as I'm a private person and like you, I was uncomfortable with peoples accolades about how noble I was being for a stranger, the gift went much deeper than that for me.  I was also worried about telling several people what I planned on doing and then have the surgery and find out the recipient rejected my kidney or something didn't work right and then having to tell people that.

When it comes down to it, you're the only one who can answer that question for you.  Follow your heart.  You could tell those on a need-to-know basis for now (immediate family, close friends, etc...) and then sometime after your surgery, during recovery, you could tell more.  If you should choose to put something  ;Don social networks, you could tell people you've decided to do something very positive with your life, becoming a living donor and that you've now been given the green-light and you were wanting to notify some of your closest friends and family so they could say a prayer and send a positive wish for both you and your recipient during the process.  This way people feel like they are part of the process with you...and they WILL be interested in supporting you...I guarantee it!

Whatever you decide, follow your heart....it may not always pick the right direction, but it always picks the direction out of love.

Good luck - I wish you peace with your decision - keep us informed friend!   We support you no matter what.

Scott

[treehugger]

I have a slightly different take on this because my husband was the one with end stage renal failure who needed a kidney, and this was a well-known fact by all our friends and family by the time I found out I could donate to him via paired exchange.

So, I started "journaling" about the testing process via a series of group emails as a way to get my thoughts on "paper,"  make sure I remembered all the details, and share our journey with those in our lives who were interested. I didn't worry about collecting accolades because they were easy for me to brush off; of course I would donate to my husband, nothing heroic about that. And truly, we found that people were interested (or they could skim or delete the emails, that was fine, too).

I enlisted my step-dad to send out an email message to my list once Joe and I were out of surgery. He went further than that and sent out updates during and after surgery and when we were released from the hospital. Lots of people mentioned that they really liked getting those messages. Plus, it gave my stepdad something do do. And then a week later when Joe had to go back into the hospital for 9 days, my stepdad started sending updates again. I really appreciated not having to worry about keeping people informed.

I found out later that my close friend at work (who was on my email list) forwarded my stepdad's messages to the entire office. It was fine, but getting all the congrats and "your amazing" comments from people I work with was rather embarrassing. But again, I could deflect a  lot of it and keep the focus on my husband.

By the way, I also posted pictures of my kidney on facebook. But I am only facebook friends with actual friends and family, so I have no problem sharing my insides there.

Ok, lots of thoughts up there, but bottom line, I think people are interested and it's nice to share important things in your life with people who care about you. So, please consider telling others (and don't worry about the how or the why). I think you'll be glad you did.

[Jewels]

Thank you for all the kind words and excellent advice!  Love this forum - best group of people ever!

[lawphi]

I would do a caringbridge page and link it to your FB. 

You will have people try to question your donation.  It is only normal.  The caringbridge will put a face and a reason behind your donation. 

[ars0168]

Hi Julie,

If you want, please read the two blog posts I have included here, that share my experience on this topic. Maybe this will help a little?

http://oksolo.blogspot.com/2010/07/sharing-my-journey.html

http://oksolo.blogspot.com/2010/07/spreadin-word.html

Good luck!!

Angela Stimpson
Non-directed kidney donor 09.22.10

[Jewels]

Thanks for all the great suggestions!  Caringbridge looks like a great idea to start up as we approach surgery.

Angela - I read a lot of your blog; your writing is a joy to read and it brings comfort as a soon to be donor to read your stories...thank you for sharing!

-Julie

[Aries7]

Hi Julie!

I donated to my husband so our families were well aware of his need for a kidney and that I was donating. We each also told our co-workers about a month before the surgery, as they needed to know we would be gone for a while. As far as telling a lot of others, I only told people on an as needed basis. Because there are so many uncertainties right up until the surgery, I didn't want a lot of people to know. My worst fear was that something would go wrong (one of us would get sick, the anitbody match could change, etc) and the surgery would not happen. I did not want a bunch of people unknowingly asking me how the surgery went if for some reason it didn't happen. Once it was over, I was much more relaxed and very happy to tell others about it. I work in a fairly large place, and I when I told my team what was going on (they had no idea that my husband even had a kidney disease until I told them I was donating to him) I also asked my team to kind of keep it under wraps until I got back for the reasons I mentioned. I did find that when I came back, some people from other departments that were aware I was out, but didn't know why, came to see me. I think some of them thought that maybe there was something wrong with me or that I was ill. I felt bad about this, and explained to them why I was gone. I then used these times as an opportunity to teach and educate others. I was able to tell them about my experience and they could see I was totally fine. I told them that I would do this all over again if given the opportunity. I would not change a thing. This is just my "two cents". I hope it helps.

Linda

[Jewels]

Linda - Your response is timely - I am starting to have the same thoughts/fears...what if something goes wrong in the final blood testing and the surgery doesn't happen?  I work remotely from home so have just told the people I work with directly that I will be out so they can be prepared.  The funny thing is I know if you don't tell people why you are going out on medical leave they speculate what could be wrong...most people think "female problems" - not this time!

I am 6 weeks out tomorrow from surgery date...

Thanks again to everyone's comments and feedback.
Julie

[Fr Pat]

     Just a reminder that IF the final cross-match turns out badly and you are not able to donate to your sister, there is still the possibility of a "kidney swap" in which you would give your kidney to someone else, and that person's incompatible donor would donate to your sister. Thanks to the growing number of hospitals that provide data on such cases this is getting easier to arrange.
     Another option that some places offer IF the final cross-match makes you ineligable for your sister is the "list exchange" in which you would donate to whoever the hospital picks from the waiting list, and in return you sister would go to the top of the list for a kidney from the next compatible deceased donor.
     So even IF there is a last-minute matching problem, that does not have to be the end of the line for you.
         best wishes,
            Fr. Pat

[PhilHoover]

Put it on Facebook... you'll be amazed at how warmly it will be received...

[Prelude_Sarah]

I was very hesitant to put an announcement about it up on facebook.  I held off for quite a while, and then about 1 week out from surgery, I just said something like "Ok, here it goes!  ...etc".  Although I felt funny about doing it at the time, I'm really glad that I did.  I had an overwhelming amount of love and support directed my way as a result, and then it was also easier to make posts about the surgery and recovery process afterwards, since everyone was already in the loop.  Hope you're holding up as the date approaches, it's just so crazy how time flies by.  I can't believe I'm already over 4 weeks out from surgery!  You'll be there soon too!

Sarah

[PhilHoover]

from all over the world praying for me, and cheering me on...because of the power of Facebook.  Of course I had done a couple of radio interviews that went nationwide as well.

Praying for you, and cheering you on.