So long, #kidneychat! It’s been real. February 8, 2015

Last week was the last formal #kidneychat. After two years, I feel it’s run its course. But, real life is a priority right now, and I have a few businesses to run.

Over the past two years, I’ve met some awesome people! I’ve seen people get kidneys. I’ve seen people donate. And, most of all, I’ve seen a culture of kidney people, with an outlet to communicate, learn about each other and make new friends.

People have stumbled on #kidneychat from all over the world! Some don’t even have anything to do with kidneys, but they still show up because that’s what Social Media is all about.

Make friends. Build relationships. Learn about people.

It’s been real, folks! You know how to stay in touch. 🙂

“A tank of gas…and a sandwich.” April 28, 2013

My mom donated $100 to the documentary the other day. $50 of that was from her neighbor, LaVon. A couple days later, I got this awesome card in the mail. I bawled like a baby when I read it. A future donor donated (again) today, and her comment for her donation was “For a tank of gas and a sandwich,” because she had seen the card when I posted it on Facebook. So, it’s been kind of a motto the past few days.
LaVon is 82. She took the time to send this to me. I hope you enjoy it as much as I did!

 

Community. August 13, 2011

The past few days, I’ve seen some things said about community. Or lack of it. People who don’t feel a sense of community are usually those who don’t deserve it. You have to be a good person for a community to envelope you. You have to GIVE to get.

Living in CenPho for 6 years now, I’ve always felt a sense of community. Familiar faces in the grocery store, the cashier at the local mini-mart, and groups like Yelp have shown me what community it. Out of that, I’ve become involved in branches that stem off everything else.

In comedy, there are a few different communities. There is a LOT of drama, but I’ve found a niche of people I enjoy performing with/for and I consider that a community.

Yelp has to be the first real community I have become involved in since moving to Phoenix 9 years ago. I’ve been a Yelper for 5 years now and have met some amazing people. During the kidney testing & surgery, Yelpers who I had never met came to fundraisers. The Community Managers showed support by helping to promote our events. Why? Because it’s a great community. Sure, there are assholes in that community, but does 1% really matter against 99%? Nope.

Facebook has shown me community as well. I’ve been getting friend requests from other kidney donors for the past several months. We’ve built a community by sharing ideas on aftercare, things to be aware of, and giving each other a pat on the back. It wasn’t an easy thing to do, but to have support from perfect strangers with the bond of saving another life built another community.

I’ve never been to India and I am not a religious person, but thoughts and prayers were sent my way. Hinduism is a very spiritual religion and I felt it, from a billion people, from half a planet away. Community.

And then there’s the monster community-builder for me: Twitter. Getting messages & follows from people around the world who heard our story, just because they wanted to show support to a stranger who did a good deed. You don’t have to donate money to our cause to show support. Showing up at a fundraiser and enjoying good food & entertainment are support enough. Believe me, seeing a friendly face made me get through terrible days more than once. Random, anonymous donations came in. How could it NOT be a community???

And then, there is Phoenix, and most importantly, the group of food enthusiasts & restaurant owners who came out in droves to show what community is. A restaurant I had never eaten at brought me food the day after I got out of the hospital. Three restaurants donated proceeds to our cause, and they didn’t have to. It’s a tough economy and the F & B industry is suffering, yet these people felt they had to do something. Countless products & gift certificates have been donated. By people I don’t even know personally.

As I write this, I am crying so hard I can barely see the screen. If it weren’t for ALL the communities I am so freaking lucky to be a part of, I wouldn’t have gotten through everything. It was an incredibly tough journey & I had to hide a lot of the pain so that my new brown family didn’t have to feel badly. My healing process was cut very short because of one thing: community.

So, if you feel there is no sense of community out there, you need to take a look at yourself. Blaming the outside world, constantly, is just proof that you have no idea what community is and you probably don’t deserve to be a part of it.

Community.

A week of huge highs, but the deepest low… May 21, 2011

I’d been soooo excited for weeks about speaking to 9th graders as a school in Scottsdale. Sometimes I miss being in the classroom (I taught middle & high school for 6 years) but I doubt I would ever go back to teaching. They kids were great and seemed to actually pay attention. I was hoping for more questions, but they were probably shy. Or shocked.

As I was getting ready to drive up there, though, I got a call from my mom. My parents are in NY right now on vacation visiting friends and relatives from my hometown. I rarely listen to her voicemail; I just call her back as soon as I get a chance. It’s a voicemail I will now never, ever erase.

She told me that the night before, my cousin Sara was found hanging in her closet. She had had a fight with her boyfriend (who I told her to ditch 6 months ago) and luckily, he called my aunt to have her go check on Sara. My aunt got there and found Sara. She had hung herself. Her heart wasn’t beating & she wasn’t breathing. My aunt performed CPR, got her breathing, but she stopped again and was revived when the paramedics got there. Once at the hospital, they induced her into a coma & put her body on ice. I guess lowering the temperature is done often, but I am not really sure why. She is not breathing on her own. She also had a heart attack. When they tried raising her body temperature, she started having seizures, so they are gradually lowering her medications. I am not entirely clear on all the details.

Sara is not even 25 yet. I remember the day she was born. My grandmother used to sing this song “Sara” to her by Jefferson Airplane, or whatever their name was at the time. I’m so sad. My family is very small. My father had no brothers or sisters. Sara is the daughter of my mom’s younger brother. In all, there are only 8 of us cousins in the family. There were 9, but my cousin David died almost 20 years ago when he was struck by lightning playing golf.

I am trying not to find blame, and I have a lot of it I *could* use. Right now, I feel a rock in my stomach and I haven’t stopped crying, except for when I had to present last night. It’s been tough. I keep going to her Facebook page and seeing the postings from her friends. I so want her to be ok, but I am trying to prepare myself for the worst. I can’t.

Sara was a really shy kid. We called her “Sara Loo-hoo” because she looked just like one of the kids in the Grinch cartoon. I so wanted to hold her when she was little! She was definitely the darling of the family!

I want nothing more than for her to be ok and get the help that she so desperately needs. I’m angry, too. I am trying to put that aside, though, and send positive vibes. It’s killing me. I don’t know the last time I felt such sadness. I don’t get sad often, but this is hitting me pretty hard.

My Friday started on another emotional note: Our story was featured on The Today Show. They flew out a couple weeks before the surgery and they were present at Mayo the day of & the day after the surgery. Seeing the story on TV brought on the waterworks. Donating has been the biggest thing in my life! The support from the airing was IMMENSE! I’ve gotten messages on Facebook & Twitter from perfect strangers, all positive. I just hope that our story inspires others to do the same. I never knew how much live organ donations were needed. This whole experience has been amazing!

I presented at Ignite Phoenix last night. Holding my emotions in, I did a pretty good job. I had been wanting to present for a couple years and I finally got the opportunity to present on the kidney transplant. It was only 5 minutes, but from the feedback I got, it really impacted a lot of people. One girl came up to me after and told me her father had gotten a kidney (cadaver) 22 years ago! He’s the 2nd longest living recipient from the hospital where he had the surgery. I’m amazed!

The support & love I’ve gotten from everyone from friends to strangers has been overwhelming. I don’t know how I would have gotten through all of it without all the special people out there. I am truly lucky!

So, it’s been a crazy week. I plan on staying in tonight, keeping busy with housework and regular work. I need an Amy day. And I’m hoping I don’t get the dreaded phone call with really bad news from my mother.

I love you, Sara. Stay strong. We’ll all be here for you!!!

Update: My mother just called, and Sara passed away. They have decided to donate all her organs…because of me donating my kidney. In some small way, what I’ve done will save more lives than just TinyMom’s.

RIP, Sara. I will miss you so very, very much.

My grandmother started singing this, we all followed:

A month after surgery & I feel great! May 19, 2011

I would say I am about 85% recovered from the surgery. My laproscopy scars are almost all healed. The incision where they took the kidney out has no more scabbing, but it’s still numb and a bit swollen. It doesn’t hurt anymore, though, to get up and down like it did at first.

I am walking a couple miles a day. I even did some lunges & calf raises the other day. I have yet to attempt yoga, because I can’t do any twisting yet, but I will try some light yoga tonight or tomorrow. I am eating normally. I do get tired, though, once a day. It’s enough that I need a nap. It hits me like a ton of bricks, too. Hey, I’ve always loved naps! Now I have a valid excuse to do it any time I want.

I am back to working full-time, too. The best part about my (new) job is that I work from home and I pretty much work my own hours. I do social media, so it’s not a 9-5 job, that’s for sure. I’m learning a lot and working a lot, but it’s what I love to do! The people I work for have been awesome and so supportive.

I am still a bit limited in the wardrobe, since my stomach is still a bit swollen and sometimes underwear is really uncomfortable. I really don’t worry about anyone saying anything about wearing the same thing they saw me in a week ago. I mean, come on. I donated a kidney!

I am speaking at a high school tomorrow about the transplant process. I am also presenting at Ignite Phoenix on Friday. If you’re not going, or haven’t even heard of it, it will stream live online at ignitephoenix.com starting at 6:30pm PST Friday. I don’t know what time I go on, but you will love the other presenters as well. I’ve also been asked to speak at other conferences/gatherings of surgeons and organizations about being a live donor. Some are even paid, which is pretty cool!

So, it’s been a month. A really incredible month! No more appointments for about 6 months. I’ve only been to visit TinyMom (my recipient) once since we got out of the hospital. Mostly because she’s still pretty tired and the last time I went out there I was pretty wiped out. I’ll try again this weekend or Memorial weekend.

I’ll be performing again starting next week. I’m getting back into the swing of things. The social aspect is a bit challenging for me because I really don’t last out in public for too long. I get tired. But, guess what that means? A nap!

How can anyone say or think this was done…for publicity??? May 5, 2011

It saddens me that people think I donated my kidney for attention. It’s been over two weeks since the transplant surgery, yet I still see it being said. Wait. This doesn’t sadden me. It hurts. It hurts really badly that anyone could think this. It also makes me extremely angry that anyone could say such a thing. Obviously, they are people that don’t know me (or Kirti) at ALL. Yeah, we’re shameless in promoting our cause. But that shame has already found a kidney for someone else…that we don’t even know. We’ve had so many people asking us both questions about the surgery, and that is what makes it all worthwhile.

For publicity???? Let’s get something straight here: I donated my kidney to a friend’s mom because there was a need that ANYONE could fulfill. Guess what? I’m not the type of person to stand by and not at least TRY to do something. I would have been CRUSHED if I hadn’t been a match and had to sit by waiting for someone else to step forward. Yeah, I guess I’m a gutsy broad but I’m also a nice, gutsy broad who would do ANYTHING for the people in my life who mean so much to me.

For publicity???? For 4 months I have physically and emotionally suffered through all of this. Actually, almost 5 months. I have been poked for blood over a dozen times. Though I have to have a yearly blood test anyway, the feel of a needle going into my arm every 3 hours was NOT pleasant. Could you do it? I’d gone through 8 weeks of testing (I could have done it all in 3 days, but I was afraid to lose time from work. See where THAT thinking got me???) that I did ALONE. I was terrified during the CT scan. I had never had health issues in my life and here I was, having iodine shot into my body. But as I lay there, all I kept thinking was “TinyMom hasn’t had pizza in 10 years. I can do this.” I went in for what I thought was a simple blood test one Saturday and was checked into a hospital room, because it was a 3-hour test. I had no idea it was going to take that long. I broke down in front of the nurse and told her “Just get it over with. I need this done for TinyMom.” Those were my exact words. And I cried. Alone. In a hospital room. For 3 hours on the day of my birthday dinner and FnB fundraiser. I couldn’t really enjoy either celebration because I was still in pain from the testing that day.

My testing wasn’t even done yet when I lost my job. There are several reasons surrounding that, but the testing was so stressful and time-consuming, I couldn’t concentrate at work. I am 40 years old and I was unemployed. Not only that, but I had to go on-camera for a few news stations and talk about it. I had to hold in my emotions, even though I wanted to break down and scream and kick and cry, to get the word out AGAIN about kidney disease. I do not like the publicity which everyone seems to think is the driving factor in all this. I may be a performer, but once there’s no mic in my hand, I am an introvert. I have to recharge by being alone at home quite often. Every time we were on the news, I watched. And cringed. The attention wasn’t always welcome. My phone, Twitter and Facebook blew up and I couldn’t keep up with it. I wasn’t taking care of myself in order to answer everyone else. I didn’t sleep or eat or shower or leave the house for 2 days after I was fired. Does that sound like I did all of this for publicity???? (By the way, the “publicity” got me an awesome job, doing what I love, because of someone following me on Twitter.)

For publicity????? For 5 days after my surgery, I didn’t shit. That’s right. I didn’t take a shit because of the pain killers I had been on. My stomach was bloated as if I were 3 months pregnant. I couldn’t stand up straight and it hurt to sit down. I also got my period, after it had JUST ended 5 days prior. So, as I am bloated, swollen and in pain from not shitting, I got to attempt to change my tampons. Once I finally got my body going (I mean ONCE I TOOK A SHIT), the pain started to subside. I had to take two stool softeners a day, drink Miralax AND shove a suppository up my ass. I did THAT for publicity, mind you.

I have a 4-inch scar that is still healing, in my PUBES. That means I can’t shave “down there” for quite awhile. I have 4 laproscopy scars on my stomach, with scabs the size of nickles and dimes. That itch. That hurt when I bend over. The incision below is still swollen and I have just now begun to wear underwear because it’s been too swollen & uncomfortable. I am finally weening myself off the Vicodin, which I hate taking. I can’t wear any of my normal clothes yet because of the swelling.

I get really tired still, which is normal because my remaining kidney is growing. I can only go out in public for about an hour at a time and need a nap right after. This means I’m missing out on a LOT of comedy (which has been my life for 8 years), birthday parties, going-away parties and social functions. I am lucky to have the friends that I do and I get visitors, but it’s not the same as being surrounded by people.

My sleep patterns are completely fucked-up. Because I have to nap a couple times a day, I rarely get to sleep at night before 3am.I have a job to do. I have an Ignite presentation to do. I have Dexter to take care of. I have laundry to do. I HAVE to make myself get up, often after only a few hours of sleep, because life goes on.

The word “altruism” has been shoved around a lot the past few months, in regards to me donating my kidney. Here is the definition of altruism, from dictionary.com:

“–noun

1.

the principle or practice of unselfish concern for or devotion to the welfare of others ( opposed to egoism).”

As the oldest in my family, I’ve always taken care of those around me. I was the oldest being raised by a single mom. So, for about 33 years, I *have* been altruistic. And damn fucking straight I donated my kidney because I’m altruistic. I happen to care about others. I have often put others’ welfare before mine. I’m not a saint. I’m not forgetting myself. I’m wanting the people around me to be happy. As happy as I am. Yes, I am an extremely happy person with an amazing life. Even more amazing now.

So, for those of you who don’t realize WHO I am and spew your ignorance about doing things for publicity, or thinking I did this for any reason OTHER than wanting to help someone else:

FUCK YOU. You’re ignorant. You don’t know me OR Kirti. And you can suck my fucking left one. ALL of you who have said it. Eat a fucking bag of dicks, as my friend Arik has said. EABOD. And choke.

Kidney donation recovery May 1, 2011

Well, it’s been 11 days since I donated my kidney to TinyMom. I am finally moving around better. For the first time in 11 days, I wore underwear yesterday. I couldn’t wear it until now, because my belly was so swollen from the incision they made to pull my kidney out. I’ve got 4 laproscopy scars on my stomach/rib area which still have the meditape on them, though one fell off finally today. Everything is itching. The scabs from the laproscopy are about the size of a dime. The incision down in my pubes is about 3 or 4 inches across. It’s like a mini c-section. It hurts a little still, but I am only taking pain pills at night for it. There are yellowish bruises around it. The stitches are dissolving, thankfully.

I went out yesterday for lunch for Yelp Office Hours. I was only out for 90 minutes, but it pretty much drained me. Because my remaining kidney is growing to compensate for losing the other one, I get tired easily. I also went to dinner with Kirti and that pretty much did me in. We went early, 5pm, and I was home early, but I was exhausted. It’s really hard for me to NOT go out and do social things, especially since I am not really driving much yet. That’s been the hardest part: not driving. I’m single, I live alone, and I’m extremely independent. Relying on others has been tough, but I am so thankful for my friends and neighbors who have been carting my ass around.

My neighbor Nancy took me to Whitfill today to get some plants for my patio and apartment. That’s about all I could do today. I napped for 2 hours this afternoon and that NEVER happens. I love naps, but I rarely sleep for more than an hour.

I have to step back and try not to push myself the next week or so and be thankful that I have the opportunity to relax.

I’ve been working everyday, which I do from home on my laptop, so that’s been pretty easy to get back into. My job is not a 9-5, M-F. I work whenever I can. I’m grateful for my job and I love what I do, so it’s easy to get back into it.

The support I’ve gotten from people is just amazing! Then again, there are some people I thought were truly my best friends that I haven’t heard from once since deciding almost 4 months ago to donate my kidney. I guess I am realizing who the really, truly genuine people are in my life and who the flakes are. Maybe some people aren’t comfortable with the subject, but no matter what, I would support my friends in something this big. It hurts that I haven’t gotten that back from some. Oh well, right?

I am still sooooooo happy with the decision I made and I am glad to be bouncing back. The pain is almost gone and I can deal with being tired by sleeping. Would I do it again? Yes, but, thankfully, I only have one kidney and can’t. Hahaha!

My kidney’s gone! My kidney’s gone! Where’s the tub of ice??? April 23, 2011

It is Friday, the 22nd of April. I donated my kidney this past Tuesday, the 19th, to a friend’s mom. More than anything, I want people to see that I am alive and functioning!

My belly is still sore. They did 4 laproscopic incisions around my rib area, and pulled the kidney out below my belly button. I think it’s pretty much the same as a C-section, just not as big. I am bloated as fuck, because it’s Friday and I haven’t taken a shit since Monday. I’ve been trying to RECTIFY (hahaha like rectum hahahaha) it all day. I am walking around, putting pills in my ass, drinking fluids and taking pills, but nothing has “broken the seal” yet. That is the only thing making me so uncomfortable right now.

I am sleeping a lot. I’m on Vicodin for the pain, but once I actually take a dump, I am guessing the pain will be a lot less and I can stop taking pain pills. I don’t like them. They knock me out within a few moments of taking them.

My mother, who is AMAZING, has been with me since Monday. At this moment, she is driving back from the airport with my sister, Lisa, who is staying until Monday so Mom can have a break. I’ve had several friends come by to see me and I am so thankful for that. I guess it makes it easy that I don’t look weird or anything. I am just moving a little slowly.

Petite Maison brought me 6 pints of soup today! 3 different kinds. I have never met them. I have never eaten there. BUT, because of my Twitter circles, we *do* know each other and it means the world that they cared enough to do something for me – and my mom.

I’ll be writing more in a day or two. I am fading pretty quickly right now, but I wanted to get something done for people to read.

I’m ok. I feel great (except for the whole intestinal thing) and I am soooooo happy for my friends!

Uh, yeah, I take responsibility – enough to try to change March 30, 2011

Going through all the tests to donate my kidney has been brutal. I know people see me with a smile on my face & always being positive, but that’s in public. The testing was BRUTAL. I spent 10 hours in the hospital on Valentine’s Day. My 40th birthday was spent on the phone with Mayo, scheduling more tests. I have a mammogram done, which showed a lump. I had to wait a week before I could get in to have another one done, just to make sure I was ok. I spent a week worrying about breast cancer. I’ve cried more in the past 2 months than I have in two years. Alone.

To think that people assume I am doing all of this for publicity – for myself – is more than ignorant. I cannot believe the things people are saying about ME. I go home from work everyday, exhausted from the mental stress and anguish over when I’m going through. For over two months now, I looked at my job as a retreat from everything – but it kept following me. Something this huge (And, yes, it IS huge) is hard to put out of my mind. I missed a lot of work and was distracted much of the time.

The funny thing is, the job I was doing wasn’t even what I wanted to do. But, I was told during my interview that the company was growing & there would be a lot of opportunities in the near future. I was encouraged to take the job because of what the future would hold. So, I learned, I worked, I took feedback and tried my best to do well. Sometimes, things aren’t a fit, so I spoke up a few weeks ago and went to our recruiter. People were being hired from outside the company for the positions I really wanted to do, but nothing was ever posted. I never applied for anything else because I didn’t know about them. I did what I thought I should and took initiative. I am not the type of person to just sit back and think I will be noticed and picked out of a crowd without some sort of signal. You will never get anywhere in this world by sitting back and waiting. I was extremely frustrated, to be honest.

My distraction, time out and frustration of trying to do what I wasn’t best at caused me to fail for 2 months. I failed. I am not used to failing. It’s not a word I use OR take lightly. But, I tried to do better and show that I was eager to try new thing.

Never have I NOT taken responsibility for my actions. I say this because I read what people are saying about me. Their ignorance of the true story and FACTS mars my reputation and skirts the TRUTH.

There has been a lot of publicity, especially since I was fired yesterday, but it hasn’t been done or said by me. I cannot control what others say, but I will not be the person to cause a scene. Was it a bad play on their part with everything going on to fire me instead of try to find that niche for an employee who obviously loved the company? Hell yeah. Have I personally raised a stink about it? Not yet.

I feel that I hadn’t gotten much support from the company, besides fellow employees and a couple managers. Not once was I asked if I was doing ok. Fine, it’s a business.  But, that business is run by…people.

I am disappointed in myself for not saying something sooner about wanting to change departments. I wanted to be appreciated for who I was and what I could truly bring.

What everyone else says is their business. Nowhere have I bashed anyone or the company I worked for. Nowhere have I placed any blame on anyone else but myself.

So, as you read this, and know that I’ve remained completely professional from the day I volunteered to donate my kidney to a friend’s mom until 30 seconds ago while writing this. So, as you spew your opinions without even ASKING about the truth, you make yourself look like a jackass.

I’ve met some great people face-to-face, finally, the past several weeks. I’ve also learned that the word “friend” sorely needs to be redefined.

Emotionally drained, the hardest part is over…finally! March 16, 2011

Yesterday was a pretty emotional day.  After a month of really grueling testing to donate my kidney, I finally got word that I have been approved for the surgery.  I sat at my desk and cried for a few moments.  I don’t think I’ve ever felt such relief!  I’ve been to both campuses of the Mayo Clinic about a dozen times.  I’ve been poked with needles, prodded by random hands, peed in I don’t know HOW many cups and given enough blood to save a third-world country.  I’m exhausted.  But, life has to go on and I have a day job that I have to concentrate on.  The support has been overwhelming and I feel that if I don’t keep up with thanking everyone, I will look like a jerk.  I feel like nobody understands all that I’m going through.  I am extremely thankful for all the support, but it’s also been all-encompassing lately and I have to shut it off for a bit.

There are times that I feel really alone, even though I know there are a lot of people thinking about me.  There are some that I expected to get more from in my personal life and there’s nothing there.  Like none of this matters to the people I’ve called “friends.”  I know everyone has their own life to deal with, their own daily struggles, but I know I would be there for them and show support.  I feel hurt and drained.

I scheduled the surgery for April 19th, which is the first date available.  I had hoped for a couple weeks earlier, but I am glad that there are others out there giving up part of their body for someone else.  The Mayo Clinic said they do about 5 transplants a week.  That might not seem like a lot, and it’s just a drop in the bucket, but at least it’s something.  I wish more people would do it.  I know it will be all worth it in the end.

I just have to get there.