Thursday, April 19, 2012

Let's talk

A year ago today, a fabulous lady named Amy, donated her kidney to the mother of someone she knew from the social media community after hearing about her mother's need of a kidney on Twitter and Facebook.

Anu Dwivedi was diagnosed with Chronic Kidney Disease (CKD) 10 years ago. In October 2010, with less than 20% functionality in both kidneys, Anu faced dialysis & a two to six year wait on the transplant list. Her daughter, Kirti, a social media enthusiast, started a Facebook page in October 2010 to help educate people on kidney disease & organ donation, and, hopefully, find a donor match for her mother.

Amy found out about Anu’s struggle from Kirti’s Facebook page in January 2011. Amy herself had suffered the loss of her father years ago (sound familiar?), and she offered to donate her kidney to Anu with no hesitation. "You have one mother; I have 2 kidneys.". 

Amy and I belong to a lot of the same circles in social media land and a couple of groups that relate to living donation. In one of these forums yesterday, she was lamenting how angry she was that more people don't talk about living donation and she doesn't understand why. I don't really have the answer and that kind of bothers me.

Here is what I do know. We need to talk about it. It is going to make some people uncomfortable. There are going to be naysayers, saying that living donation is inherently dangerous, we were born with two kidneys for a reason and so forth. They will cite all the bad news stories they can find where the recipient or donor had a bad experience or worse, died (less than 0.03%!!). There are going to be people who think we, as donors, are just looking for attention from the media, our peers, our communities so that we can be told over an over what a selfless, wonderful thing we did (um, no). Believe me, I am equally uncomfortable with both of those camps of naysayers. But we have to keep talking.

I recently was chatting with a surgeon (in a conversation, not patient kind of way). He told me that until very recently (five to six years ago) while he fully supported directed and deceased donation, he was against non-directed living donation. He said at the time, despite being generally very liberal in thinking, he couldn't understand why someone would do that for a stranger. He said that he assumed there must be ulterior motives or worse, some kind of potential mental health issue that would make people want to donate to a stranger. Then, he had the opportunity to meet some potential non-directed donors. He listened to their whys, they concerns and their beliefs. And he changed his mind on non-directed donors.

What's my point? 

The majority of people don't even know living donation is an option or the fact that as long as you are deemed healthy, it is a fairly low risk procedure. Many people don't understand why someone would step up and give to a stranger or someone they barely know. Sadly, there are people who have close family members who have been on dialysis for years and they won't step forward to be tested for, because they don't know enough about how the process works and are afraid. And as my conversation with the doctor demonstrates, even health care professionals who understand the science/medicine behind transplants, don't fully understand the people side of living donation.

We need to talk about it. Talk about our whys and hows and highs and lows as donors or as people who know donors (I'm good with you sharing my story). Bottom line: living kidney donations save lives. Living kidney donations traditionally last longer than kidneys deceased donors. Oh and for the record? Dialysis is not a cure, making a kidney transplant a "nice to have". People on dialysis have a tough go of it on a daily basis and are some of the bravest, most resilient people as a result. I don't know how they do it.

SO many people need to hear the living donation message over and over at every level until they "get it", from friends, to family to co-workers to health care professionals. We often fear what we don't know or don't understand and it is our job, as donors (or our supporters), to help take some of that fear away by telling our stories. We shouldn't be afraid to talk about it, share our experiences and hopefully encourage others to become donors. Donating is a very personal choice to make. But that doesn't mean we can't talk about it.