inspiration - pt. I

The Yankees are on and it's actually being broadcast on a station that I get with my 'Poor Girl's Cable Package'. Options also include: Public Access, HSN, C-SPAN and TV Guide Channel. Hell of a selection, isn't it?  Anyhow, I'm a little distracted because I have to look up at my 10" TV every time my boyfriend's at bat. I couldn't wait until tomorrow night to share my news, so as scattered as this post may be, here goes...

I pulled the trigger. Not on a gun because I don't like guns.  I guess what I mean is that in a moment of confusion, anxiety and immense motivation to reach a goal I had set to achieve this year, I registered today for the L.A. Rock 'n' Roll Half Marathon, on October 30, 2011.

This is a big, f*ckin' deal, folks! Why? Because I can't run. I shuffle, I skip, I scoot, and when I'm frustrated, I stomp. Not to mention that I'm out $100 if I break a leg, or need a kidney, or have PMS.

[They're winning. Top of the 7th, 3-0. Don't ask who they're playing because it doesn't really matter.]

As disappointed as I have been with my running performance lately, I was determined to push forward. The frustrations started to increase about 2 months ago, after I completed my first 10K race. I did great at that race, but ever since then, I seemed to be getting slower, and sloooower. I struggled with as little as a 3-mile run and couldn't seem to get anything to feel right. My energy was down, my body felt  heavy and tight, and I my breathing became increasingly difficult. My peers in the running community continued to make progress, increasing their distance, and here I was moving backwards. Everything I was doing, I was doing wrong. Depressing. I began to read more in search of tips and suggestions or even answers that could serve as a diagnosis of sorts to make me feel better about my crappy performance. I got nothing.

[Rain delay, bottom of the 7th.]

I decided to reach out and touch someone for help, because I was a little pissed, to be honest. I follow a local blog here, called How 2 Run Fast and emailed the blogger, Mike. I asked if he might know of a local running coach and he was kind enough to put a post about my inquiry on another local blog he writes for, The Times Union Runners Blog. Readers provided some suggestions and comments, but the best reply came from a woman that would be my inspiration to kick this struggle into full gear and move forward. Her name is Mary Ibbetson.

[Top of the 8th, Yankees still winning. Rain still falling.]

Mary reached out and offered to help me. Poor woman. After a few email exchanges, we chatted on the phone and by the end of the conversation, I already started feeling motivated to make some changes. What an amazing woman! (Please take a moment and get to know Mary.) With her inspiration, coaching and torture, I know that I can reach my goal now. As she says, the work is 90% mental. Why then does it feel like it's 90% hell? With the help of her presence in my life, for however long or short it may be, I made a decision to register for my first half marathon. Thank you, Mary.

[Now it's really pouring, still 3-0 and the fans are slowly trickling out.]

I have done a heck of a lot of pokin' around the internet to find the perfect race for my first half marathon. I have reviewed countless options - everything from locations, to themes, to fundraising partners, dates and registration rules. I was shocked as to how many are out there, but also excited that I would even have that many options.

[Home run, Mark Teixeira! Now the Yankees lead 4-1, bottom of the 8th.]

It's strongly suggested that when you create a running goal such as the one I have, you need to make the commitment and register for that big race, whether it's your first 5K, or your 6th marathon. I needed to do that, and I needed to do it now. It will hold me accountable and I'm the type that once I set my mind to something, I will do everything in my power to follow-thru because the one person I never want to disappoint, is me.

[Game over and the Yankees win!]

I have 13 weeks to train for this. For some reason, the training program I have to follow does not include:  Sal's mojitos at Hattie's, the yummy Death by Chocolate ice cream from Stewart's, Jimbos at Bomber's, Chocolate Peanut Butter Pie at The Lighthouse, and my Friday night bag 'o pork rinds in bed. It should. Guess I'll need to make some minor modifications.

My brother and I enjoying what I now know was my last mojito for the summer. Boo hoo.

So, I've started my training, I'm excited and proud of my decision to register.  More importantly, I know I can do this.

Oh, and there's one more reason why I selected this half marathon in Los Angeles...



Until next time... I'm counting the days until the Runyon 5K at Yankee Stadium!

survey #2: transplant centers and care

This post is for all my fellow kidney donors, both directed and non-directed.

I am working with a group of donors and we have created another survey that we are asking you to participate in. If you missed the opportunity to take our first survey, you can go here, to complete that one as well.

The purpose of this particular survey is to find out what improvements could be made in the living donor community, specifically with the pre and post-op care from your center in which you donated. Your answers will be treated in confidence and will help to plan discussions with transplant programs, legistlators, HRSA and insurance carriers.

Please take a moment to forward this email to any living kidney donor that you might know. This survey can be directed to both altruistic donors, and designated donors. Our goal is to collect 300 completed surveys. We encourage you to share this link on your blogs, social media sites, or emails.

We thank you for your time and consideration and we look forward to hearing from you! If anyone has questions or comments, please contact me directly by emailing me at: ars0168@yahoo.com

Please click on the following link to direct you to the survey:   https://www.surveymonkey.com/s/9WVJLSY

Hope everyone is enjoying their summer!

Smiles...
Angela

living donors doin' D.C.

It's gonna be another long one kids, so grab a PBR, sitchurass down and read yourself to sleep...

Back in February, I volunteered to take an online test for the Department of Psychology at Georgetown University.  This 90 minute test featured several visual tasks and questions that would determine if I would eventually be eligible to be a participant in their Social Behavior Study on Altruistic Living Donors. Because my brain is flawless (duh), I was selected to be a participant and invited to spend a weekend held against my will, in a dark and cold science building on the beautiful campus at Georgetown University. Dr. Abigail Marsh,  and her adorable assistants (beautiful and smart - I hate them all) arranged for the testing on Saturday, June 4th.

As many of my readers know, I have made a special bond with my donor mentor, Cara Yesawich, since first being introduced to her last spring. As luck would have it, Cara was selected to be a part of this study too. A little organized planning, with the help of Georgetown University and Cara, we scheduled our testing on the same weekend so that we could finally meet in person. I don't know if I was more anxious to meet Cara, or have my brain picked. My anticipation for this weekend was killing me leading up to it and I feel so fortunate that this opportunity came my way. Cara and I decided to add an extra day to the weekend so that we could tear up the town Saturday night and leave our mark in D.C. We succeeded and I must say that I have found a friend for life that totally 'gets me', fills my heart with joy and enjoys wine equally as much as I do.

Kidney sisters, for life...
Cara and I enjoying dinner and drinks, and drinks, and drinks.

We were told very little about the purpose of this study. We knew only that the day would entail a series of tests, an MRI and an interview by Dr. Marsh. Considering the battery of medical and psychological tests that we both went through to become a donor, we knew we could handle pretty much anything they would throw at us. 

Our arrival at the CFMI (Center for Molecular Imaging) was at 10am, and in we strolled hungover, still up from the night before, and stinky. Kidding. Kinda. No, I'm kidding, we were clean and sober, greeted by Dr. Marsh and her assistants, and given our itinerary for the day.

Our first item on the agenda was to meet privately with Dr. Marsh and her team and sign our life away, again, on all kinds of paperwork. Since I was having an fMRI scan, a pregnancy test was required, just to confirm that I was safe with no bun in the oven. Now, I have never selectively taken a pregnancy test in my life. I'm not sure if that's a good thing, or a bad thing, but it's the truth. I don't even know how they work, to be honest. The assistant gives me the test and tells me to dip the strip in the urine sample and then watch for the results. I have no reason to believe that I would be pregnant, unfortunately, but I was more terrified of that test than I was donating my kidney. I don't know what it was, but I was a nervous wreck watching the strip slooooowly reveal the results. I couldn't help but think, what would I have done if it showed up positive? Probably have many regrets about the night before.

I want to know what exactly does 'invalid' imply?

So that drama scene ended quickly and they shuffle me off to begin the fMRI. What is an fMRI, you ask? Well let me tell you. 

Functional Magnetic Resonance Imaging (fMRI), is a technique for measuring brain activity. It works by detecting the changes in blood oxygenation and flow that occur in response to neural activity. Get it?

In I go through the tube with this giant contraption thingy attached to my head. I look into the headpiece they place over my eyes and inside is a view of the desktop of a computer monitor. I'm not liking it already. I thought I was going to be able to sleep for 90 minutes and dream of an island adventure with Derek, now I'm being told I have to think. They put a clicker device in my hand with buttons that correlate to numbered answers of the 750 questions that I think I had to answer. I can't divulge the details of the test, but let's just say that I was a little creeped out. Between the repetitive banging noise and the rapid flashing of a million black and white photos, I couldn't stop thinking of "1984". The movie, not the year.

"1984" with John Hurt and Richard Burton
This was me, only they were kind enough to let me lie down.

It was all very surreal, slightly uncomfortable, and too damn hard for 11am on a Saturday morning. I was equally fascinated though. The tests were very interesting and left no time for you to think about an answer. You had to think quickly and accurately and go with your gut. Speaking of gut, mine was getting grumbly and after the 90-minute fMRI exam, I was free to roam the compound in search of food and beverage as long as I kept my ankle bracelet on.

This is some glamour shot, isn't it? Smokin' hot!

They provided us with lunch, so I loaded up from their 450 item salad bar and sat outside to eat since I would not be seeing daylight again for another 5 hours. The one day that I am required to be indoors and I think it could have quite possibly been the most beautiful day of the year.

I think it was about 1:30 after I finished lunch and I was expected at White-Gravenor Building for more computer tasks. If you have never been to the Georgetown  campus, you don't know what you're missing. It's absolutely beautiful and the architecture is stunning.

White-Gravenor Building, where we remained for the remainder of our study.

Elise Cardinale and Alissa Mrazek were the two lovely assistants that conducted most of the exams that day. I wanted to adopt them. Beautiful and smart as I mentioned, but they could not have been kinder and more accommodating the entire day. Poor Alissa must have drawn the short straw because she had the pleasure of monitoring me the rest of the day while I took all my tests. I can't share too much information about the nature of the tests, or the brain police will come after me. As much as I would like to provide details on the specifics of the tests, I would not want to compromise their study. They have put so much time and hard work into this program and as important as it is to them, it's just as important to me. Any efforts that are given towards the study of altruistic living donors is applauded by me and I can't thank them enough for this opportunity to help them with their research program. 

What I can tell you is that there were several visual challenges. Remember when you were a child and the teacher would give you a word, like 'wet', and then you were given images to select from and had to choose one that would best represent that word, like 'pond'. Well, that's kinda the nature of these tests. Sounds easy, doesn't it? Of course it is, for the first 15 words, then she's shouting out vocabulary with no vowels, showing me photos of world maps and asking me to match them up. Not good. I was hoping for a stack of Rorschachs thrown at me. I'm an artist, not Magellan. I felt like I was 12 again. No, like I was 6 again. It was horrible and did wonders for my already diminished self-esteem.

We moved on to some short answers, fill in the blanks and multiple choice. Now we're talking.

Personality and character questions - the easy stuff, finally.

These were relatively simple, but still had you thinking hard at times. Let's just say, a lot of the material was based on morality, character and values. That's pretty obvious though, since the study is about our emotions, personal choices and why we make the decisions we do. 

We finished up all the computer and paper testing and my final portion of the day's itinerary was to meet with Dr. Marsh for an interview. The interview was conducted in her office and 2 other team members involved with the study were present to observe. She asked if she could film me and I told her only if she got my good side. She drilled me with questions that are pretty typical of those that I have already been asked by others in my life:

Was there a life-changing event that motivated you to donate your kidney? No. I was bored and needed some downtime.

How did your family react when you told them of your decision?  "You'll do anything to lose 5 lbs., won't ya?"

How has this experience changed you?  I walk a little lopsided now.

You get the point. And the questions continued for about an hour or so. I lost track of time, as this was probably the most interesting portion of the study for me. I enjoy talking intimating about my experience and I rarely get an opportunity to do so, freely, without being judged or sometimes even ignored. I suppose that one of the joys of my trip to D.C. was because of the lengthy conversations Cara and I had about our journey - comparing notes, laughing and reminiscing about the day of our surgery.

My day wrapped up around 6pm and although both Cara and I were mentally drained, we had just enough energy left in us to hit the town for a cocktail and a nice dinner. This night was especially enjoyable for me because of our conversation about the day's events.  A perfect ending to a perfect weekend.

I don't know the duration of this study and although I have been given some information regarding the purpose of it, it's not for me to share. I will say that it was an honor to play such an important role in the gathering of neurological data that can be derived from living kidney donors. I learned a lot, and I finally had the chance to meet my mentor... my friend, Cara.

Until next time... this girl is lovin' every minute of the sun and sweat in NY!

national kidney registry... thank you!

On the weekend of May 1, 2011, the 11th Annual Meeting of the American Society of Tranplant Surgeons and The American Society of Transplantation, met in Philadelphia, PA for the 2011 American Transplant Conference. The word 'American' is used way too many times in that sentence. The National Kidney Registry (NKR) was a participant. I can only assume that there is a tremendous amount of scientific and clinical information regarding solid organ and tissue transplantation exchanged and discussed among some of the top surgeons and scientists in the world. Yawn. As interesting as I'm sure the presentations were, I would imagine it would all sound Greek to me. I am intrigued (for the obvious reasons) by this area of study, but know I would last all of 5 minutes as an audience member.

NKR, specifically Diane Zocchia (my transplant coordinator), was kind enough to invite me to attend a reception at this event on the evening of May 2nd. I was thrilled at this opportunity to mingle with the rich and famous NKR Management Team and other transplant center medical staff, but even more excited when she told me that I would be meeting 10-12 living donors. Since my surgery, I have not yet met another altruistic donor and the thought of being able to share stories amongst other donors was very exciting to me. Diane told me I could bring a guest that was with me during my donation experience. Since Derek was knee deep in season, I chose my mom. What a trade-off, eh? Off we go in the Jetta - me, mom and Xanax, on our little roadtrip to Philly, adding a few days to make it a mini vacation. Wow.

Monday's agenda started with a small donor meeting in our hotel so we could all be introduced to each other. What a wonderful group of people, but then again I expected nothing less. Diane asked if we could attend a press conference at City Hall to help publicize the National Kidney Registry. Sure, why not. What we didn't know then is that we would all be asked to speak at the press conference. Thank God for the Xanax. Although I was terrified to speak in front a crowd full of cameras, it was a great experience and I was honored and proud to be there to represent NKR. State representative Robert W. Godshall of PA was in attendance as well to receive a Political Action Award for introducing ground breaking legislation in the Organ and Bone Marrow Act.

(L to R) Lynne Samson, director of the National Transplant Foundation, State Representative and bone marrow recipient Robert W. Godshall (R) Montgomery County Pennsylvania, Gary LeBlanc, director of education and outreach for the National Kidney Registry, Janele Guzik, donor from CA, Judith Pasquarella, donor from MI, Daryl Julich, donor from IA, Hope Preston, donor from NJ, Angela Stimpson from NY and Chris Pricco, COO for OptumHealth Care Solutions (Photo courtesy of AP).

That evening, NKR hosted the 3rd Annual Awards Reception, honoring the achievements of the American Transplant Community. All 11 of the altruistic donors were invited. What we didn't know until that day is that we were all being honored with the American Hero Award. Had I known, I would have upgraded my consignment shop ensemble for something that cost more than a meal deal at McDonald's. Oh, how I wished I had worn my cha-cha heels. I had the opportunity to meet my recipient's coordinator, out of the UCLA transplant center, and also chatted with my coordinator from Weill-Cornell.

Garet Hill, the Founder and President of NKR,  gave a beautiful speech that featured just one of the many success stories of transplants that NKR has facilitated.

Garet Hill (center), pictured here with eight of the donors.

Award presentations followed, recognizing individuals and organizations exhibiting an extraordinary commitment to saving and improving the lives of those suffering from kideny failure through paired exchange. I just plagerized that entirely from the program. Last but not least, all the donors were honored with the American Hero Award. Woo hoo! Check it out, it's actually aesthetically pleasing, unlike the slew of bowling trophies lining my mantle.

All 11 donors were presented with this award. 

I was so moved, and felt touched that the NKR recognized us for what I feel is not an achievement, but an opportunity. Not everyone is blessed with a clean bill of health that would allow them this experience. The National Kidney Registry was a significant factor in the seamless process of my donation experience. Diane's presence in my life before, during and after my donation made for a beautiful experience that isn't always the case with a lot of kidney donations. NKR is an informative, organized and passionate organization that has facilitated 276 transplants since the program started in 2008. I urge anyone that is considering being a donor to make their first step a visit online to their website and register.

Thank you, National Kidney Registry, for this beautiful award but more importantly, thank you for being there for me during my donation.

Until next time... The monsoon seems to be over and summer is just around the corner. Happy girl!

happy easter