Tag Archives: kidney donor

Day 7: We made it a week so far!

I told myself that I would blog every day, as we travel. Well, that obviously didn’t work out. We’ve been pretty exhausted once we get to whatever hotel we are staying at every night. We aren’t pushing ourselves too much, and most days the driving is 8 hours or less. Thankfully, we are in Minneapolis right now, and go to Chicago tomorrow. After that, the daily drives are all 6 hours or less.
We had an AWESOME time in Salt Lake City, interviewing Tori. I didn’t realize how similar our stories are! Her mother died of cancer, as did my father. It really hit me when she said that, which was in front of the local ABC affiliate’s camera. (You can watch that interview here: ABC4 in Salt Lake City ). Her recipient, John, was also there. We didn’t tell people they had to have their recipient there, but they really want to get involved. We had such a great time that I didn’t want to leave. Tori had gotten us rooms at the Peery Hotel. It was haunted! I had a nightmare that night that I walked into my room and saw a blond lady ghost sitting across the end of my bed. I’m not even afraid of ghosts. It was definitely the most comfortable bed of the trip! I loved meeting her family, and her husband has an awesome sense of humor.

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Then, we headed to Denver on Sunday. Talk about a brutal drive! Not only was it cloudy and windy, but we had to drive through Wyoming. I am never going to that state again as long as I live! There was absolutely nothing to look at! We had a nightmare of a stop at a truck stop, where it took us 15 minutes to get two cheese burritos from the Taco Bell. It’s a story I’d be happy to tell on camera! When we finally reached the state line to Colorado, our moods lifted. We checked in, slept, and got up yesterday morning to meet Laura in the park. Her recipient, Al, was also joining us. He took a 8-hour train ride to get there! Laura and I both had a lot of drama to deal with for our testing. We both have a really snarky sense of humor, too. Seeing their relationship as donor/recipient reminded me a lot of me and TinyMom.

Me and Laura

Every time we leave one of the donors, I get a little sad. I wish I had more time with each of them. On the other hand, I have places to visit people and more people to have in Phoenix!

#KidneyChat tripled last night!

Last night was the third week for #KidneyChat. I started it hoping to just talk with other donors and have people who were thinking about donating, have a place to openly ask questions.
Every week, there have been more donors who I don’t know jumping in.
Every week, there are more people who have begun testing to donate jumping in.
Every week, there are more people who are friends and loved ones of donors and kidney patients jumping in.

Every week, our reach has tripled over the last week. On last Monday, #KidneyChat trended nationally OVER The Biggest Loser. Last night we were the 4th highest trending topic on Twitter in Phoenix.

People want to talk about this. People NEED to talk about this. People ARE talking about this.

Twitter Reach Report Results for  kidneychat   TweetReach

I never knew this would be so much work!!! Love it, though.

This whole concept for this film was created on a ride to a gig (I’ve been a comedian for ten years) with two others in the comedy circle. I offhandedly mentioned making a documentary with a cross-country trip. Then a few ideas got shot around. I was going to the Ice House that night, where I bumped into Jimmy Piertragallo. I had known him for about 8 or 9 years, but I hadn’t seen him for 7. His wife had a baby, so his job was to be there for his family. He came back out last Spring to do comedy again. I was so excited to see him!

So, We were sitting on a bench outside the show and I started telling him about it. I don’t think I even got through the whole explanation when he said “I’ll do it!”

That conversation was in August. Since then, we’ve met at least once a month, but usually it’s twice, to get the wheels in motion. We had to come up with not only a name for the film, but a name for us as a company. I then had to come up with an itinerary.

That was the tough part: Choosing which donors I would visit. Since this whole kidney crusade started with a tweet, Social Media played a big part in it. I’m in a couple living donor groups on Facebook. I’ve become friends with some of them and some are even on Twitter. I’ve spoken to a few on the phone. They are my friends. My kidney sisters. (there aren’t a lot of men who are active in the groups for some reason.)

We finally started to raise funds at the beginning of the year. We had comedy shows. We had shirts made. (http://socialmediastolemykidney.com/donatebuy-a-shirt/) I’ve made a trip to the post office every day this week! They are really awesome and you should buy one, too. Everyone loves them and I wore mine every day last week. I wear it everywhere, because I need to spread the word!

It’s coming together. It’s becoming real. I just wish it were May 1st already! I’m working 20 hours a week on this, plus running my own business and attempting to have a life. I’m so glad, though, that we started everything 6 months ago. I like that I can have the time to think things through while working on it. I’m getting a LOT of help from a couple of people. I’m posting this page EVERYWHERE.

It’s happening. Soon!!!

 

Nervous, excited, scared, humbled

The past week or so has really sucked. On Friday the 21st of December, I woke up with a sore throat. I went out to a comedy show that night, and didn’t feel sick. I just had a sore throat. I woke up the next day with the full-blown flu.

My parents were already at my sister’s house in Orange County, and I was to drive there the 23rd or 24th. It never happened, as the flu got worse. I felt like I had been run over by a steam roller. I was just exhausted and my neck hurt for a day. I took really good care of myself by sleeping a lot. I had an appetite, so I just kept eating. I used my neti pot every day and gargled with warm salt water. I think all of that is what helped me. Though I was sick for 7 days, I didn’t feel like I was on death’s door. I was just SO tired and a little weak. I missed Xmas with my family, which sucked. I love my niece, Olivia, so much! She’s almost 10 now and she stayed with me for a week this past summer. It’s the first time she’s ever flown here by herself and came to stay with me. We had a blast and it just broke my heart that I couldn’t be there. The drive would have killed me.

I woke up the other day to a comment on one of my posts here. Someone else is offering us a place to stay on our trip. I do not know this person, and she is the second one to offer. I’m so touched! Every day I see more and more likes on the Facebook page  (https://www.facebook.com/SocialMediaStoleMyKidney) and I got messages the past few days from people I don’t even know. The other donors are incredibly supportive and they comment and share some of my posts. As a Social Media person, this page is doing what it’s supposed to!

Some time this week, I get to talk to firemen in NYC. A friend of mine told me about a kidney donation between them and knows a couple of the guys. How cool would it be to sneak in some NYC firemen???!!! That’s America right there! My father was a volunteer firemen, so it will be pretty cool to see them. I will, of course, get pics with them because we all know how sexy they are. Hahaha!

Tomorrow, Jimmy and I work on the script. I’ve got a meeting on Wednesday with Dr. Jean Robey. She is TinyMom’s doctor and has given me a lot of advice, feedback, and motivation the past few weeks. I definitely need it!

I’m a bit overwhelmed, but I’m ok.

I’m a bit nervous, but I’m ok.

I’m excited, too, to share all of these stories with everyone.

Most of all, though, I’m humbled beyond words at the help and support I am getting.

This guy donated in 1980!

Word has been spreading about our documentary. Today, I logged into the email account I set up for it, and caught up on the emails. One of them was about a woman’s uncle who donated to her father (donor’s brother) in 1980. His name is Guy and he is now 72 years old. He was 40 when he donated, just like me!

Sadly, though the surgery was a success, his brother’s PKD didn’t take too kindly to the new kidney. He never made it out of intensive care and died right away. As he told me this, I broke down on the phone. I took a couple deep breaths, because I didn’t want him to hear me upset. Here’s a 72-year old man, who just got home for the day, talking to a stranger on the phone about something he did over 30 years ago.

I asked him some basic questions about the surgery. He was in the hospital for 2 to 3 weeks. WEEKS! I was only there for 2 DAYS! He’s also got a pretty big scar. They used to take the kidney right out of your back, and the scar cut across the ribs. The healing from that was pretty brutal. He was back to work right when he left the hospital, but his soreness lingered for several months.

He’s not comfortable being filmed, and I’m ok with that. It was, however, great to talk to someone who had donated so long ago and is still living a happy, healthy life. He’s had one kidney since 1980.

People ask me a lot how I would have felt if TinyMom never went home after the surgery. I can’t bear to think about it. It’s not that I would think my kidney was wasted, which people ask me about a lot. It’s just that she’s my mom and I wouldn’t want to think anything badly about the donation process. I guess we were pretty lucky, but these surgeries are successful every day.

Don’t be scared. Guy’s 72!