Sunday, December 11, 2011

the search and the gift

John Tait, a student at Columbia College Chicago, has completed this video on the recipient/donor experience. I don't know much about John, but I wanted to share this with my readers, as I thought he did a great job conveying the emotions of both parties through their journeys.


Great job, John.
Enjoy...
The Search and the Gift

Monday, November 28, 2011

survey: donor follow-up care

Hello, fellow donors!

We invite you to take a moment to participate in this survey. It was created out of a very real need for accurate data on the follow-up contact and care that does (and often does not) happen post-donation. The living kidney donor community has learned that UNOS (United Network for Organ Sharing) is trying to pass protocol (#9), that would make it mandatory for transplant centers to follow-up with their donors. However, once pressed for records of follow-up attempts, many centers have responded with the claim that donors do not wish to be contacted after their surgery for follow-up questioning and care.


In an effort to present sound proof and representative data to the transplant community to back up our sentiments that donors do typically want some form of follow-up, we decided to reach out to the donor community via this questionnaire. Your participation gives voice to this very important cause, and we thank you for speaking up on behalf of those donors who cannot do so themselves.

On behalf of the living kidney donor community at large, thank you for agreeing to take part in the survey.

To participate, please click on this link:   https://www.surveymonkey.com/s/follow-up_care


Thank you!

Thursday, November 24, 2011

giving thanks


Thanksgiving is my favorite holiday. What more fun could anyone possibly ask for in one day? Plenty of adult beverages, food, family and football. I loooooove Thanksgiving.


Naturally, there are endless things I'm thankful for... like water, shelter, employment, friends and family. But, there are many other elements of my day-to-day life that I just couldn't live without, and I'm going to name just a few...

HAIR PRODUCTS
Because without them, I could easily be mistaken for him.

COFFEE
Because without this, I feel like her.

PILLOW
I can't believe that I spent $44 on a piece of foam. Until 2 weeks ago, I had been using a stack of maxi-pads. I feel like I've died and gone to heaven.

SIRIUS RADIO
I rarely treat myself to luxury, but when I purchased my car 5 years ago, I also bought a lifetime subscription to Sirius. Makes my 30-minute commute to hell work, not so painful and now I have a lifetime of jazz that follows me wherever I go.

HEATED SEATS
The butt burners in my vehicle make it the only place I'm guaranteed to be warm.

RUNNING SNEAKERS
Provides me balance in my life. Never dreamed they could mean so much to me.

MOM
My hero.

CAT
She's been with me for 3 years now, and still has no name. I don't know what I'd do without her.

HEALTH
I've been blessed, and not a day goes by that I don't thank God for giving me the ability to move my body every day.

REALITY TV
Because as long as this mindless crap exists, I'll never forget just how real my life really is.

MEN
I'll be boy-crazy until the day I die. Love me some men!

That's it. For now.
Wishing all my readers a day of love, food, laughter and tummy aches.

Until next time... Enjoy the holiday season. It's here!

Saturday, November 19, 2011

free beer and hot wings... thank you

I'm not talking about the feast of hops and fat. I'm talking about the men I wake up with every weekday morning - my radio guys, the Free Beer and Hot Wings morning show.

This syndicated, morning talk show has been my daily happy pill since Howard Stern left our local radio station for satellite. I remember tuning in that first morning they took over, and as soon as I heard the name I was turned off. I'm glad I gave them a chance, because after enduring their stupidity for about two weeks, they really grew on me. I know it sounds ridiculous, but I feel like these guys are a part of my family. I've been with them through their ups and downs, the births of their children, their personal accomplishments off the air, etc... and they've been with me through mine. Right.


They stop in Albany for live remotes about once a year and you can guarantee that regardless of what watering hole they show up in, I'm there. I've met them countless times and they are always kind, considerate and willing to take the time to chat with all their fans. I. Love. Them.

And I'm sure they love me. Like me? Maybe. I tune them in as soon as I hit my car in the a.m. for my dreaded trip to hell the office. I wait in the parking lot until the commercial break, then run into the office, pop open the laptop and continue to stream them until the show ends at 10am. Then I pout.

I'm particularly attracted to their show because of the wide range of current events they cover. They are all bright and humorous men, but their commentary is always fair, honest and very real. They have this ability to speak their minds without creating a partisan fog attached to their brand. I don't always agree with their social and political views, but they have a brilliant way of speaking their minds without pissing off the natives. Stay with me because I do have a point here. I'm just being selfish because these guys mean so much to me, I feel the need to brag about them.

Eric Zane, of (FBHW) and I
Summer 2010, Ravenswood Pub

This Wednesday morning, they updated the audience on the story of Marine Cpl. Kelsey De Santis' date with Justin Timberlake. I won't bore you with the details, but the premise of the story led them to the topic of emotional blackmail, and how these type of requests from us 'little' people to celebrities could easily get out of hand, and where do you draw the line? Agreed. 

It was then that the guys read an email from a listener whose mother was in need of a kidney transplant. This woman asked Eric Zane if she would go on a date with her mother, to raise awareness of her mother's need for a kidney. And he jumped all over that and said, "Of course... not." In a few short minutes, the conversation quickly transitioned into kidney donation, and that's when I got a little bit excited.

I have their call-in number on my phone, for that one time in my life that I think I'm actually going to have the balls to call in and spew my opinion to the national audience about flatulence, pornography, animal abuse, or any number of the intelligent topics they cover. I took a deep breath, hit the call button and prayed they wouldn't pick up. They picked up, and then I peed my pants. 

Within 15 seconds I was on the air. Honestly, I don't even remember too much of what I said, and I'm thankful that I will never have the opportunity to hear myself. I do remember expressing my thoughts on being a living kidney donor and sharing with them the opportunity that I was blessed with and how easy this is for the healthy segment of this population to consider being a part of.  I explained that I was a non-directed donor, that I recently met my recipient (btw, that blog post is around the corner), and how terrific and healthy I still feel.

Producer Joe, Free Beer, Eric Zane, Hot Wings and Steve

And so, within a minute I was on and off the radio. This made my day. For two reasons: I got to talk to my radio guys, and, they let me share my story and bring this very important issue to the airways. You can't imagine how much this meant to me. Best part of all is that they were nice to me. I expected them to deliver sarcasm at their best. Nope. See, they do like me. 

The conversation continued for a short bit, and they took several more calls on this. I was so happy that this was being discussed on national radio. But, I was even happier to see the positive feedback offered by their listening audience. They were as surprised as I was, getting a slew of emails from listeners expressing genuine interest in being a candidate to donate their kidney to Kelley's mom. Success!

Much to my surprise, Thursday brought even more interest in the topic, and again, my guys delivered. More listeners called in to express interest in the show then added Kelley's blog link to their site, for those that were requesting more information on the recipient's story. I quickly shot an email to the show and added that they need to explain to the listeners the seriousness of this process and that's it not to be taken lightly. Free Beer read my email on the show and pointed the listeners to the National Kidney Registry, should they want to learn more about how to become a donor. Once again, I peed my pants. Success, part deux!

I think I'm still riding on the high of this experience. Never in a million years did I imagine that two of my favorite things in the world would come together as one. I have since emailed Kelley, and shared with her my own personal journey, and promised her I would contact her again soon to give her some contacts. Kelley's story is just one of 80,000+ right now. 

What I found to be surprising about this conversation on the air, was the overwhelming and sincere response of listeners that were actually interested in pursuing this. I still think that if we could have more opportunities to spread the word and bring awareness of living kidney donation, the misconceptions of surgery could be dramatically reduced. I'm also convinced that the media outlet to share this information needs to be re-thought. Why do we need to limit our conversation and exposure to health fairs and expos only? Why can't our voices be heard more on the radio and TV? The general public needs to be informed more often, from us donors. We've been on this journey to save a life. We continue our adventure, with only one kidney, as living proof that it can be done.

Until next time... please tune in to hear my radio guys. I guarantee you will be insulted, shocked, humored and even impressed. 

Sunday, November 13, 2011

deepak and the kidney

I'm a huge fan of Huffington Post, specifically, their Healthy Living features. I stumbled on a great piece written by Deepak Chopra, on kidneys. I found this blog post to be extremely educational, simple and easy to comprehend. I know I learned something when I read it, and I hope you do, too.

Deepak Chopra

For those of you not familiar with Deepak Chopra, I encourage you to do some research on his teachings and philosophy. He's a great speaker and if you ever get a chance to attend one of his lectures, jump all over that. Plus, he's a hottie. Intelligence is sexy!

I hope you enjoy his post, and please leave a comment if you have other articles you feel might be beneficial to my readers.

Happy, healthy kidneys!

Sunday, October 16, 2011

inspiration - pt. 2

Catch up with 'inspiration - pt. 1', here.

My other inspiration to reach my goal, and reach it in Californ-I-A, is my recipient. I chose this particular race in L.A., for an opportunity to visit my kidney. My right kidney is feeling lonely and needs a hug, so, I decided to reach out to my recipient and ask her if she would be open to meeting me. I got an enthusiastic text message reply from her... "Yes, yes, yes!"

Visiting California, participating in my first half marathon and giving myself a much overdue vacation were all part of my plan. As joyful and exciting as it would be to meet my recipient for the first time, I didn't want that possibility to interfere with my goal. It had crossed my mind that Julia would not be receptive to me throwing myself at her (now who could deny me?) and cashing in on my visitation right. I didn't want to plan my trip to L.A. contingent upon her acceptance or rejection of my request to meet her.  So, I waited 2 days after I registered to reach out to her, and I'm glad I did. For the last 3 months my focus has been on my training, not on meeting her. It's not healthy for me emotionally, to have expectations in my life that I have no control over.

There's still a chance that Julia will not want to, or be able, to meet me. Many donors never get this opportunity. Some simply don't want to know or connect with their recipients. Some are promised a contact and then the recipient never follows through with the connection. Others still just can't make it happen because of the distance between them. I decided that it's now or never for me. As much as I love to travel, I don't have available vacation time, and my income is tied up in wine, Starbucks and athletic wear. I mean, a girl's gotta live, right? I need this time, for me. Plus, I love my job so much I know I won't want to take another vacation for at least 3 years.

My training has been going so well, I almost feel like I'm jinxing myself saying this out loud. I'm not denying that it has been hard, damn hard, but I feel so good about my progress. I think that following my plan precisely and maintaining some discipline with my nutrition has led me to successful preparation. I haven't been logging my pace - honestly, I could care less how long it takes me to finish. I've never been competitive, and my goal is to finish with a smile on my face. I fight my fatigue daily, and there have been times that I came so close to going straight home after work instead of hitting the park to run, but I can't let my fatigue beat me.

Simmer down, it's a temp. 

There's no doubt that my recipient has been a significant inspiration to me. Some might think that it's absurd to have someone you don't know be such a motivator for an accomplishment. Every run I take, thoughts of her come to my mind. I think of how amazing it is that the human body is capable of giving up a functioning organ, and yet still able to function. I am more fit now that I was in the weeks leading up to my donation. I remember feeling so focused on my health prior to that surgery and now I feel like it's even more important to maintain that.

I was running for my recipient before my kidney was gone, and now I'm running for all recipients that have yet to find a donor. I'm living proof to everyone capable of donating their kidney, that you will continue to live a full life and thrive in your fitness goals. I couldn't run more than 5 miles before I donated. I ran 10 miles yesterday. If there are skeptics that doubt the well-being of donors, I hope they can see the reality of not only maintaining their health, but improving upon it, after donation.

I'm not nervous for October 30th - I'm excited! I've enjoyed my journey in preparation of my big day. I've learned a lot about myself and I've learned that you don't really have to know someone to be inspired by them. I hope I can inspire others to take the initiative to entertain the option to be a donor, and register to give the gift of life.

Until next time... I'll be putting in my final miles, and still giving lots of smiles!

Thursday, September 29, 2011

OPTN/UNOS policy proposal for public comment



UNOS/OPTN distributed electronically, September 16, 2011.

[ The proposed policies from the Living Donor Committee, and likely to be of more interest to living kidney donors: #8, #9, #10, #31, #42, #43 & #50. ]

This document contains fourteen policy proposals being offered for public comment. These proposals were developed by OPTN/UNOS committees. When the public comment period ends on December 23, 2011, each sponsoring committee will review the feedback they receive and consider modifications to the original proposals. The OPTN/UNOS Board of Directors may then review and vote on these proposals at its meeting on Juney 25-26, 2012.

We welcome your feedback on this policy proposal and other aspects of the public comment process as we continue to improve the way that we communicate with the community. Please note that all exhibits and appendices to these proposals can be found on the OPTN website via the link below. Please click on this link to provide your comments on these proposals.

You may also send general feedback to: publiccomment@unos.org.

Please submit all comments no later than December 23, 2011. For questions about the proposal, please contact your Regional Administrator at (804) 782-4800.

Thank you in advance for your careful review and feed back on this proposal.



For information on OPTN: 




For information on UNOS: 



Thursday, September 22, 2011

one year. one kidney

Happy Anniversary, to me. A Starbucks skinny vanilla latte is helping me celebrate. Yum.

One year ago today, September 22, 2010, I donated my kidney to an unknown recipient.  I remember waking up from the anesthesia and whispering to my mother, "I'm so happy I did this." And I still am.

I would do it again tomorrow, but I can't. I recall going into surgery early that morning feeling remarkably calm as I laid down on the operating table. My last thought before being put under was how unfortunate it was that I was going to miss the moment that I had been anticipating for 6 months. Bam! It's over, and I have nothing to show for it, but my scar. It's a constant reminder, and a good one.  I think doc did a damn fine job.

September 20, 2010

October 31, 2010

September 22, 2011

My left kidney is now in the body of a beautiful 29-year old woman in Bakersfield, CA. And I wish I was there with it. Hello, sunshine!! Last I heard, she is doing fantastic. Her doctor has given her the go-ahead to have another baby, and she is thrilled to be working once again, going to school, and enjoying the wonderful life that for so long she had been stripped of.  I don't have much contact with her, but a warm text message pops up once every few months with an update on her health. You can't imagine how relieved I am when I hear of this good news. I still think about her every day.

I often get questioned about my health since that big day. (Physical, not mental, cuz they all know I'm a freak.) Friends still ask me how I'm feeling, and what changes I may have noticed since the donation. Honestly, I feel great. No pain, anywhere. As you can see from the crappy iPhone pics, my incision scar has healed beautifully and I am still shocked that they pulled anything larger than an M&M out of that. And there would be gobs of them... peanut, coconut, peanut butter...

There is one side effect from my surgery that has not diminished. Fatigue. Boo hoo. It's bad and it's not getting better. I hate to admit it, because outside of this one issue, I'm exactly the same person I was on September 21, 2010. The fatigue was expected early on in my recovery, and I was aware that I would have to work through it over time. Well, it's been a year now, and it's not any better than it was the day after my surgery. 

I am a very busy chick, and I do push myself, but I know my body and I know that I feel different now. I believe that fatigue is manageable. It's not pain, it's an inconvenience. I work through it, but it's hard as hell. Some days I feel like I could fall asleep standing up. Even when I'm in the middle of the most exciting and stimulating adventure with friends, I feel tired. All. The. Time. It never goes away and I am having a hard time tolerating it. But, I will. I do.

There are donors that have experienced this long-term fatigue, as I have been doing some research online to find suggestions as to how they cope with it. I know there are prospective donors that read my blog, and I mention all this because I think it's important to be honest in sharing my experience. I do want to be clear though that not all donors suffer from this particular side effect. I want to reiterate that every single donor has a unique experience - before, during and after surgery. Some donors have suggested that maybe I am still not healed and that the fatigue will slowly go away. That would be great and I am anxiously awaiting that possibility. 

The goal with my blog was to inspire and motivate just one individual to donate their kidney. That hasn't happened yet. However, I have met some amazing donors that I have had the pleasure of mentoring over this past year, and that's a huge achievement in my heart. I hope that I can continue to educate, inspire and be a friend to those that are beginning their donation journey. I know I had a wonderful mentor when I began mine and I want to continue to help others in the same way that Cara helped me.

I am so fortunate to have the ability to do what I did. I enjoyed the process, the research, the knowledge I  gained, and more than anything, I have enjoyed knowing that I have given new life to a woman, her husband, and her daughter.

For those interested in learning more about becoming a living kidney donor, please visit the following organizations online to get more information. Take the opportunity to have the most meaningful experience of your life - donate your kidney.

National Kidney Registry
• Living Kidney Donors Network
National Kidney Foundation
United Network for Organ Sharing

Until next time... It's getting cold in NY, I've released the wool and down comforter - hibernation has begun. Not happy.

Sunday, September 11, 2011

UNOS region 9 meeting

Living kidney donors, listen up!

UNOS (United Network for Organ Sharing) is holding a conference at which they will be forming transplantation and donation policies that could affect current and future donors - and they are doing so without the representation of the donor community.

We need your voice! Please help protect our rights by attending their Region 9 conference with us.



Wednesday, October 12th, 2011
10am-3pm
189 Wolf Road, Albany, NY

If you are interested in joining forces with other living kidney donors who want to be heard, please send us an email: lkdalliance@gmail.com

I encourage you to get involved in UNOS through attending this upcoming regional meeting and participating in the policy making process.

Would love to have this opportunity to meet other living donors, and share our experiences!

See you there!

Monday, August 15, 2011

please participate in a donor survey


I'm reposting this one more time, kids...


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

Summer will be gone soon (boo-freaking-hoo), so soak up the sun and enjoy the final month of my favorite season!

Smiles...
Angela

Tuesday, July 26, 2011

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!

Friday, July 22, 2011

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

Monday, June 20, 2011

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!

Sunday, May 22, 2011

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!

Saturday, April 23, 2011

survey


I am proud to be part of a group of living kidney donors whom, collaboratively, have created a survey in the link below. We're hoping that this is the beginning of what might someday become a much larger project that will identify the challenges that some living kidney donors face and how we might find solutions to these. We're asking you might take a few minutes of your time to complete the survey - it's very short and direct.

The purpose of this survey is to find out how living donors prioritize possible financial assistance for items such as travel, lost wages, childcare and medical care, post-donation. Your answers will be treated in confidence and will help to plan discussions with transplant programs, legislators, HRSA and insurance carriers. This survey should take no more than 5 minutes to complete. 

Should you decide to complete this survey, I would very much appreciate if you could send me an email at ars0168@yahoo.com,  simply to confirm your completion of the survey and any thoughts you might have to add to it.  If you are residing outside the United States, please indicate this in the email. Again, no personal contact information will be shared with anyone.

PLEASE take a moment to forward this email to any living kidney donor that you might know. Our goal is to collect a total of 300 completed surveys. We encourage you to share this link on your blogs, social media sites, or emails. 

Please click on the following link to direct you to the survey: 


We thank you for your time and consideration and we look forward to hearing from you!

Thursday, April 21, 2011

donating blood - 101

Ok class, listen up. I know most of you are not ready to take the leap and donate your kidney, so I thought we might take a little baby step together and allow me to show you (got lots of pics) just how easy it is to donate your blood. I've been a committed blood donor now for about 4 years and it's easy-peezy. I too am terrified of needles, so I'm not going to listen to the excuses from everyone about how scared they are of the long prong (ooh, does that sound right?) Yes, it's creepy and pointy and sharp and cold, but so was my 10th grade Spanish teacher and I recovered from that trauma. 

Go to the American Red Cross website and locate your local blood donation center and schedule an appointment. All you need is one hour of time to draw the blood and all the other clinical mandatory crap they ask you to complete. They will ask you to confirm your name about 10 times and honestly, if you can tolerate that, you can tolerate the needle.

So, let's get started, shall we?

First step is getting through this manual. 

They will ask you to take one of these books and read through it. 
It's riveting.

It's filled with bunch of legal-schmeegal stuff.

They will call your name and escort you into a very small room filled with snakes. Kidding. The room is really tiny though and it makes me nervous. Don't know why, just does. Anyhow, they begin the 'name game' at this point and within 2 minutes, they've already asked you your name 3 times. Before they can move on to the next step, they have to prick your finger and take a small blood sample to see if your iron count is high enough for them to let you donate. Tonight was my third visit within the last 3 weeks to donate because the last two times I attempted, my iron was too low. Apparently runners are often rejected (story of my life) because the running bounces around your blood cells and affects your iron count. Sounds like a bunch of hooey to me. I ate about 10 lbs. of spinach this past week and evidently the stuff really does boost your iron count. I was good to go!

Finger is pricked with a very small needle and your iron is tested.

If you pass the iron test, they give you a badge. No they don't but I think after what I have been through these past few weeks, I deserve one. They set you up in front of laptop, they exit out the Alice in Wonderland door from the tiny room, and you have to complete the questionnaire provided. They ask you all these crazy questions about illnesses, surgeries, diseases, prison sex, body piercings, etc. This takes only about 4 minutes or so, unless you need more time to think about the prison sex one. 

Let's all be honest now...

Now you're ready for the big-people room and you park your rump in this nice pleather La-Z-Boy and the foot massage begins. 


I have one just like this at home.

The phlebotomist then gathers her tools and preps for the blood draw. She then asks you your name, again. And again, and again.

Tubes and bags and electronic devices and paperwork...
I really don't know what all this stuff is but it looks important, doesn't it?

They wrap a giant rubberband around your arm and give you a squish ball to squeeze. Your veins pop out like worms and she marks the juiciest one she can find.

Vein is marked, and do I have nice ones! Or so I'm told.

After it's marked, they rub this really dark tanning lotion all over it. Guess it not only sanitizes the area, but gives you that savage tan you want.

She cleans your needle-poking spot, for what seems to be forever.

GRAPHIC PHOTO WARNING:  She inserts the needle, I let out this chirpy, squeelie sound like a little baby and within 30 seconds, the creepiness is over.

I look like I have Popeye arms here. Must have been all that spinach.


At the end of the draw, vials are collected in addition to the pints, for testing.

The needle is removed and they bandage you up. All done!

I have oompa loompa arm now.

Blood all packed up neatly and ready to be sent off to my favorite vampire, Count Chocula.

Happy blood.

Total blood draw time was 13 minutes. This figure will vary, depending on how quickly or slowly, your blood flows. This is why they give you a squish ball to squeeze on and off while your'e donating, it gets the blood flowing faster.

The bonus to every blood donation is of course the buffet that is served immediately after. Looks nutritional too, eh?

Dinner.

Now see, that wasn't so bad now was it? My total time invested was 45 minutes from the time I walked in the door until I exited the building. I remember I was terrified my first time, the needle is so intimidating but honestly, you don't really feel it after the first 30 seconds. It's all well worth it and I would encourage all of my readers to please consider taking an hour of your day to save a life.

A few facts from the American Red Cross about why your donation is so important...
  • Nearly every 2 seconds of every day, someone needs blood.
  • If everyone donated blood just one more time each year, there would be no shortages.
  • Your one donation can help save the lives of as many as three hospital patients.
  • Only 5% of people who are eligible actually donate blood.
Until next time... if you schedule an appointment during the month of April (and we only have several days left), they give you a nice, red t-shirt!

Tuesday, March 22, 2011

6 months flying solo

Happy Anniversary to me!

Today marks 6 months to the day of my surgery, and what feels like the longest winter on record. Go away, snow. On September 22, 2010, I made the best decision of my life and donated my kidney to what was at that time, a complete stranger. She is no longer a stranger, but someone that will forever be a part of my life, forever be someone that changed my life.

I didn't know who would receive my kidney. I didn't know their gender, age, religious affiliation, lifestyle, marital status, career, where they lived, or the specifics of their medical condition that had brought them to a life on dialysis. What I did know is that there was someone out there that desperately needed a kidney that would provide them the quality of life they so much deserved. My kidney could have gone to virtually anyone, and I knew when I started this journey that I wanted to let this decision be in God's hands. There was no way I could possibly hand-pick a recipient from this unfortunately large pool of candidates. Can you imagine... eenie, meenie, miney, moe...?  I was confident and very comfortable knowing that my recipient would be selected by the only one, in my opinion, capable of making that difficult decision. I thank God that he has brought Julia to me in this very non-conventional way, and given me a purpose in my life.

I've learned so much about myself these past 6 months, and I am grateful for this growth. My physical recovery from the surgery is long over, and with the exception of a minor struggle with fatigue, I feel fantastic. My health over the winter has been superb - not even a cold! My fitness goals and accomplishments are greater and more challenging than before the surgery, and my heart and soul have found a sense of peace and immeasurable fulfillment. My active involvement in the living kidney donor community is now a priority in my life (move over Jeter) and I take great pride and pleasure in being a part of this. Never did I dream that my passion for donor awareness would continue after the transplant surgery was over. Not only has it maintained it's presence in my life, I have found that it has become a new direction for me to explore much further. My desire to gain knowledge and deeper understanding of the challenges of donor/recipient matches and paired exchanges continues to intrigue me and I have become somewhat of a 'kidney news' junkie.

In these six months, not a day has gone by that I have not thought about my recipient, Julia. I think about her health and her well-being, and pray that she continues to feel great (because I don't have room for it now if she wants to give it back). Our correspondence is minimal but I did recently receive a text message from her, and my heart was filled with joy when I saw my phone light up her name. She wanted to share some wonderful news with me...her nephrologist has given her the thumbs-up to have another child. If she has a girl I think 'Angela' has a nice ring to it. Naturally, she expressed immense gratitude to me for making this happen and shared some comments to me regarding the option of endless possibilities in her life that she now has, and didn't before. I am so happy for her and her opportunities to live such a rewarding life now. When I'm having an off moment, or I'm feeling a little blue, I think of her and my day seems so much brighter.

Other donors that I have formed relationships with say that the memory of the donation fades over time. Maybe so for them, but I'm pretty sure that this is one Kodak moment that I will never forget.

Until next time... I encourage anyone that has even the slightest interest in exploring the option of becoming a living kidney donor to contact me, or use the resources I've included on my blog list. Educate yourself on the possibility of giving the gift of life.

Sunday, February 27, 2011

my body, my mind... take it all

my body, my mind... take it all
I received some great news on Friday... Somebody actually wants me for my mind instead of my body. Shocking, I know.

Georgetown University researchers in the Laboratory of Social and Affective Neuroscience are seeking adults that have volunteered to donate a kidney, and I am the chosen one (of many).  I have no idea what those smartie-pants people do, but I do know that I volunteered to donate a kidney, so sign me up. I love to have my brain picked. It was such a memorable experience to have my internal goodies poked at, I can only imagine how exciting it will be to have them study my gray matter. Boy, are they in for a disappointment surprise.

I've been told that my participation may involve behavioral observation, brain imaging (MRI scans), and psychological interviews. As long as they're not observing me on a Saturday night in mid-August at a bar in Saratoga, I think they will be satisfied with their subject. Or bored out of their minds.

Anyhow, I'm excited. Very excited. I participated in the initial online testing about 3 weeks ago. They warned the participants that the test would take about 90 minutes and fortunately I was allowed to stop periodically so I could pick it up again if I was interrupted. Thank goodness because you know how Derek is such an attention whore and can't possibly be without my presence for more than 15 minutes... ugh, so needy. The test was divided into several sections, covering everything from image perception to ethics. I love this stuff. I find human behavior to be so intriguing, and am fascinated at the statistics that doctors and scientists are able to collect just by asking questions.

I passed the online test and qualified for more. So much so, that they need me to travel to D.C. to spend a weekend with them. Apparently I have fans all over. They're footin' the bill, so away I will go. The dates have not yet been confirmed, but I'm looking forward to this and I feel good knowing that in some small way, I'm helping the living kidney donor community.

Since my surgery, I have tried my best to keep current with all the news and information in the living donor community. I have set up feeds on my email to alert me with stories, news and medical breakthroughs that continue to grow. This is good thing. It's also a bad thing, at times. Sometimes I think  I read too much. I see tragic stories daily, of patients living with kidney disease that can't find a donor, or the transplant was not successful and their donated kidney was rejected. This is why I didn't hesitate to participate in this study. My presence in the donor community did not end the day I gave my kidney to my recipient, if anything, I feel as though it's stronger. Because I want it to be.

I have also been invited to attend a conference May 2-3,1011, with the National Kidney Registry. Details are still not solid yet, but I know that this opportunity is not to be missed. I will continue to embrace any chance I have to better myself as a mentor for other living donors. As I've mentioned in past posts, this is a huge part of my life and I'm lucky to be there for others that are beginning their journey. With time, patience and education, I know I can provide the proper support to other donors - much like the support that was given to me.

Until next time... this thing called snow - I'm done with it.