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

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: 

https://www.surveymonkey.com/s/LivingDonor

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

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!

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.