kindness activist

kindness activist

Thursday, May 12, 2016

Donation Kindness

Oh sure, I am an “organ donor”. I mean, I have the little box checked on the back of my driver’s license, like lots of people do, saying that when I die the doctors are welcome to whatever they can harvest. And that’s all well and good (and I TOTALLY ENCOURAGE EVERYONE to sign up to be an organ donor and make sure your family is aware of your decision).

BUT (and that is a big BUT…) – would I have the courage and kindness to be like Amanda Nicastro and donate an organ while I am still ALIVE?? That, to me, takes the question to a whole other level.

We met Amanda at the Orlando Fringe Festival when she was performing her show “I’m Just Kidneying”. We were lucky enough to see it and it really made me think a lot afterward. When I started this project about Kindness Activists, I knew I wanted to feature Amanda and have her share her story with you, so that you could be inspired like I was.

Amanda performing at the Orlando Fringe Festival
 Here’s the background: Amanda’s little sister has Focal Segmental Glomerulosclerosis (which, since I don’t want to try and spell that again, let’s just call FSGS). The first time she needed a kidney transplant, Amanda learned she was not a good blood match so couldn’t donate. However, their dad DID match so he donated HIS kidney. Unfortunately, 9 years later she needed another transplant.

Well, even though Amanda herself wasn’t a match, she explained to me, “More and more hospitals have started putting together “paired donation programs”. Basically through this program we were paired with another recipient/donor pair and we swapped kidneys. Sometimes the chains of people are very long. In our case it was a direct swap. We actually got to meet the other pair - a husband and wife. The wife and I were matches; she has my kidney. The husband and my sister were matches; she has his kidney.”

Did you follow that??? Amanda donated her kidney to a woman, and that woman’s husband donated HIS kidney to Amanda’s sister! It was like “musical chairs” with kidneys, only the result was good for EVERYONE!! I love it. What a concept!

:) - she is a kidney donor!!
A big piece of Amanda’s show that I took away and considered a lot was her perspective of “not being a hero”. She doesn’t look at what she did as heroic, she looks on it as just helping her sister. She said, “I love my sister. It was always a no brainer for me. It didn't require much contemplation. It was something I always wanted to do from the moment we realized that needing a transplant was in her future at some point. When I found out that I wasn't a match the first time I felt like I had failed her. I knew I really didn't have control over whether I was a correct match or not. But I felt like the one thing she needed the most at the time I couldn't do for her. FSGS sometimes goes into remission after a transplant and sometimes it comes back and affects the new kidney. Ideally, we all would have loved for the first transplant to be the only one she needed. But sadly, we don't have control over that either. Being a part of the transplantation process the second time made me feel like I had more purpose and that I was living up to the responsibilities of being an older sister. It felt really good to help.”

Amanda and her sister - Thing 1 and Thing 2
Now, a lot of us have sisters that we love, but to me THIS is not a “no brainer”! This is serious surgery and Amanda just rolled up her sleeves and jumped right in there! Fine if she doesn’t want to be called a hero, but she is sure as hell is gonna be called a KINDNESS ACTIVIST!!

When I talk with people for this project, I typically ask how they think the recipient of their kindness felt. I like to try and think of it from all angles. Amanda said, “I really don't know exactly how my sister felt. I think she appreciated it and she loves me, too. I remember her saying at one point before surgery she was really happy that through the paired donation program we were also helping someone else and that it wasn't just helping herself. I think the paired donation program is amazing for that dual purpose. Patients are receiving help but they are also making it possible for others to be helped as well. I think my sister is pretty awesome for being able to accept a kidney from a stranger so that someone else is helped by receiving my kidney.”

I agree – the whole thing is awesome. I didn’t know about PAIRED DONATION and I am really glad she explained it to me. It makes perfect sense and definitely seems to be the right way for medicine to move.

You would think a show about donating a kidney would be a serious affair, right? But Amanda’s take on it is funny, refreshing, and educational. I asked her about the show – why/how she wrote it, and how it went over. She said, “Honestly, I decided to write a show about it because a bunch of funny things happened during the evaluation process. One of them being I had to take a cooler full of my own pee on the subway. During evaluation you do a 24 hour urine collection and it has to stay cold until it gets to the lab for testing. I live in New York City and don't own a car so I had to take my cooler with the pee jugs in it on the subway. A stranger on the platform kept asking me what I had in the cooler. I thought it was just too funny of a situation. I wish I could say the main reason I wrote the show was to get the word out about organ donation, but it was more I thought I had a good story to tell that would make people laugh. It wasn't until after I started getting responses from others affected by kidney disease that I really thought about how much good the show could also do outside of just being entertaining.” Side note: I was quite embarrassed after getting this reply from her, because to tell you the truth, we had seen Amanda carrying around a prop for her show (the COOLER) and I remember asking my partner, “I wonder what that girl has in her cooler??”. Yup, I was like the annoying stranger on the subway platform.

And wouldn’t ya know, when I asked if there were other kind things she did, Amanda had more. Not only is she a living organ donor, but she has donated her hair to Locks of Love and has donated both blood and plasma. She said, “I have contemplated being a bone marrow donor. I tried to register online sometime last year but because it hadn't been a year since my last surgery (transplant) and I reported having hip pain (they usually take it from your pelvis) the computer program wouldn't let me sign up. I was a little frustrated but it totally makes sense that they want you to be completely recovered before having more elective surgery and to not possibly aggravate an existing condition. And of course, I'm a registered organ donor. So when I die hopefully my organs and tissue will be viable and I'll be able to help a whole lot more people.”

Amanda is now volunteering with “LiveOnNY”, a non-profit responsible for registering New Yorkers to be organ donors. I think it is so important to register to be an organ donor, and to talk about that decision. Amanda told me, “Oftentimes when I approach people I find that most are in favor of transplantation. But a lot of people, even if they look upon organ donation favorably, still haven't registered as organ donors simply because they don't want to think about their own death. Unfortunately, making the decision about being a registered organ donor does come with thinking about what your legacy will be after you die. I understand the fear and anxiety that surrounds all of that. Nobody wants to die and it can be unpleasant to think about. But I think being kind, living kindly, and doing acts of kindness depends on our ability to look at our lives and make courageous assessments of ourselves and being able to accept the realities of our world. Everyone dies. Everyone at some point is touched by death. Avoiding it might feel good in the short term, but avoiding it doesn't help ourselves and it certainly doesn't help others.”

So well put. So let me ask you, are YOU a registered organ donor? Does your family know that you are?? Please take time to think about it, register, and inform those who love you. You can find more information on organ donation here: here

I wish I could tell you that “I'm Just Kidneying" will be at a theatre near you soon so that you could see it. But Amanda has taken some time off to get married (congratulations!!) and work with her sketch writing partner. She is considering doing another tour of the show, so keep your eyes open for it. You can connect with Amanda on Facebook at , on her website at, or on Twitter @TheLastAmanda

Let’s give Amanda the last word here. “Being kind isn't about lofty ideals or grand gestures. It's simply living in the moment, accepting that the world is sometimes not perfect, and asking yourself, ‘What can I do right now, no matter how small, to make the world a kinder place for others and for myself?’ .”

Thanks Amanda – thanks for being such a force of kindness in this world, for sharing your story, and for working to ensure more people donate organs.

Bonus photo - Amanda getting married.  Congratulations!!

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