Friday, December 24, 2010

presence - 2011

This is my post from 2010. I told myself when I started this blog that I would not re-post. Guess rules were meant to be broken.  This is one of my favorite posts, and I feel that it's worthy of round two. Have a wonderful holiday everyone...

My memories of Christmas as a child are probably some of the fondest. I love my family and I thank God that I have the most caring, supportive and loving parents anyone could ask for. I can now recognize as an adult just how much effort, love, time and care they put into making Christmas truly special for me, and my siblings (but I know they love me most!) In my opinion, Christmas is for children. It's that one day of the year that is truly magical. Sorry, Disney, but I got one on ya!

I'm an adult now (biologically anyway) and Christmas just isn't the same. The magic is lost. The lights, the music and the spirit is still lingering, but the essence of what it always was as a child is now over. That's ok, and I don't mean that in a 'Debbie Downer' kind of way. I just think that being all grown up changes the perspective and the mystery is now diminished. Unfortunately, it seems that consumerism and a society that thrives on self-entitlement has stolen that beauty of what once was such a meaningful time. I often wonder if the 7-year-olds of today are as mesmerized by the simplicity of a homemade Christmas cookie as much as I was at that age, or those exciting trips to have breakfast with Santa.  Their focus has gone from the wonderment of crafted creations in the kitchen to the possibilities from a click of a button on an electronic device. There is no nostalgia in that, and I believe there never will be. I remember so fondly being at Grandma's house and the ribbon candy and white porcelain Christmas tree that lit up when you plugged it in. That's what sticks to your ribs and becomes a part of who you are. I know I enjoyed the presents, but my memories are more of the presence... of my family.

Christmas now is spent with my immediate family only, and while that has changed over the years, the time sharing laughter, food, drinks and love is still the same as it was when I was five. Sure, the cast is a little different, a bit smaller, a lot older, and much wiser, but the love is still there. My expectations year after year are minimal, but are always met because the most important gift of this holiday is the interaction among my family. Now that, is magical.

I hope that everyone is blessed with the opportunity to share time tomorrow with someone they love. Let's not forget what the day is really about, and how we can continue to give gifts throughout the year that don't come in wrapped packages. Gifts of support, time, care, knowledge, humor, kindness and love. I really have only one wish on my Christmas list - I wish that I might inspire someone to give the gift of life by becoming a living kidney donor. Ok, I lied, I have two wishes and the other one wears a pin-stripe uniform, swings a bat and has a really cute butt. Make the new year for you, the possibility of another year of life for someone else. Donating your kidney might not be for you, but what about donating your tissue and organs when you're deceased?

Create memorable moments tomorrow with the ones you love and enjoy the spirit of what the day is really about... booze! Kidding.

Until next time... Happy Festivus, everyone!

Sunday, December 12, 2010

support, please? - part II

In my lifetime, I've found most often that any support I've needed has come from immediate family members or very close friends. After all, they know me best and the trust and loyalty I need from them has been well established for many years. So, I guess I would say that I would never imagine that I would seek support from someone that I had never met before, yet alone ever spoken to.

As I began my journey of donating my kidney, I found that I didn't have a choice and would need to look elsewhere for this support. I wanted to find others that would be able to give me the knowledge, information, facts and honest opinions to all my questions about kidney donors, and their experience. As much as I love my family and friends, there was no way in hell they would be able to help me with this. They weren't even aware at this stage of my journey, so seeking support from them was out of the question. I needed a new friend and mentor to be there for me when I was 'stuck' with crazy questions about everything ranging from how to successfully accomplish my 24-hour pee tests to filling out the numerous documents required.

I had spent many hours doing research on living kidney donations and at this point I was confident that I had collected all the information I needed to feel comfortable with the actual surgery. What I didn't have was information about the personal and delicate questions that any patient is hesitant to ask of their physician.  I knew there were many tests to come, prior to my surgery, and then I also knew that recovery would be another area I was lacking information about.  When I connected with Harvey Mysel (Living Kidney Donors Network), I asked him if he could possibly provide me with contact information of other living kidney donors. My thought was that if I could talk to others that had been there and done that, I would be able to absorb the entire experience more thoroughly, through their words. Harvey suggested I contact two donors; one was a woman from New Jersey who donated in March of 2010, and the other was a woman living in Chicago that was going to be donating in the upcoming weeks.

I didn't delay the connection I needed with them for even one day. My first phone call was to Hope Preston. Hope lives in NJ and donated her kidney at the same hospital where I would eventually end up having my surgery. She was so kind and helpful, providing me with the answers to the questions I had about Weill-Cornell specifically, and also sending me a copy of a journal that she kept detailing her daily progress before and after her surgery. This was extremely helpful and it really broke down the experience much more clearly for me.

The following day I called Cara Yesawich, the other donor Harvey told me about that was soon to have her surgery. Little did I know just how much this woman would become a part of my life. I new she was someone special after the first phone conversation we shared and I also knew that she would be the mentor and friend that I needed during this inquisitive time for me. Cara provided me with all the answers I needed, even the most embarrassing and personal ones. I felt so comfortable talking with her and never hesitated to ask her something regardless of how stupid I thought it was. I think knowing that she honestly didn't mind helping me was a huge relief. I never once felt as though I was bothering her and got a positive vibe from the beginning, that she truly cared. 

For those that are in the process of becoming a living kidney donor, please request a mentor if you find you need someone that can be there for you who has lived the experience. You will be so relieved and comforted just knowing you can rely on a buddy that will give you guidance as you progress through your journey. I'm persistent when I want results, and I will be assertive to get them. One thing you won't find in all the literature you receive is answers to questions (honest answers) about pain, scarring and digestive difficulties during recovery. Ya know, all the poop questions. What about all the mobility challenges I would encounter after surgery? I never even thought of that. Cara prepared me for the little struggles I would have like preparing meals and getting in and out of bed. I also would have never known if all the weird things spinning in my head immediately before surgery were natural. All these thoughts were so easily dismissed in my mind with a quick phone call or email to Cara. The discharge papers they hand you when you leave the hospital are about as informative as a clue on a scavenger hunt. It's a joke, really, and I can't tell you how much post-op information I got from Cara, daily. She was my angel, and still is.

So, should you be in the beginning stages of your donation, I urge you to find a mentor. The Living Kidney Donors Network, the National Kidney Registry, Living Donors Online, Cara, and myself included, would be more than happy to help you with your questions. We are not doctors, and don't claim to be, but during such an important experience in your life, you have the right to ask virtually anything you want. And, you have the right to get an answer, with a lot of support and care packed into it.

Thank you, Harvey, Cara, Diane, Robyn and all the other donors that were there for me when I needed support - when I needed a friend.

Until next time.... hope you're all enjoying the Christmas spirit.

Saturday, December 4, 2010

support, please? - part I

NOTE:  Until now, this blog served as an online journal for me, and those that chose to follow me. I feel as though I was successful in delivering that content. I will be approaching a 3-month post-surgery date soon and I need to shift my focus now on mentoring. Going forward, my intent is to provide more material to inform & educate donor-wanna-beez. My goal is to give those beginning their journey, the information I felt I needed most when I made the decision to be a living kidney donor. For good measure, I'll toss in a few irrelevant posts for my audience - to some I will humor, others I will bore to tears...

I can clearly recall the night I decided to take the leap to explore living kidney donation. I spent hours online, Googling this and Googling that. I didn't even know there was a term that would describe what would be the experience I would be able to undergo only 6 months later. I was all over the place and eventually got bounced to several sites providing me with scrumptious recipes on kidney bean salads. Ok, so I got a little sidetracked (and felt a little gassy just reading about them.) Anyhow, I was putting a hell of a lot of effort into this research but I didn't really know what it was I should be researching. Good thing I wasn't on a deadline or I would have failed the project.

My brain is a sponge for information. When I'm on a mission to learn something new, I thrive on the minutia. Give me details, please! My research that evening, and many others to follow, provided me with more material on kidney transplants/donations/surgery than I could ever absorb. So, here I am with all this crap and I don't know how to digest it all. Do I begin with educating myself on kidney disease and those who are suffering while waiting for a transplant, or do I jump into the fire and call my local hospital and ask them where I sign to donate my kidney? This was the start of what became my only frustration of this journey... not knowing where to begin, and then how to follow through.

I knew what I needed. I needed support. I needed a 'go to' person, web site, contact, book, video... whatever. I just needed a good solid source that would give me a step-by-step plan to follow. I'm also a teeny-tiny, itsy-bitsy, lil' bit of a perfectionist and thrive on guidelines and rules (except for my sugar intake.) God forbid I make a move forward if I'm not following a proper protocol, especially with something as important as donating my kidney. I couldn't believe how many web sites include 'network', 'organization', 'foundation' or 'association' - preceded by 'kidney'. My attempt to determine which one was more credible than the other failed and I was becoming more frustrated by the moment. I couldn't help but think to myself, if they are all offering equally accurate information, then why can't they all get together and create one giant site called... Nice ring to it, eh?

You'll be shocked to know this, but, I'm impatient. I know, I know, I have a flaw and I can't believe it myself either. I was anxious to kick this up a notch and really make some progress. Don't know how many of you have heard of Facebook, but I decided to give it a shot and post a query on my status update. Bingo! You should try it sometime. Harvey Mysel, president of the Living Kidney Donors Network, was quick to respond to my post and within days we had shared our first phone conversation. Harvey became that source that I was seeking, the support and clarity I needed to move forward hitting fewer roadblocks as I aimlessly surfed the web.

Now I could really get down to bizness! Harvey's guidance was instrumental in my introduction to become a living kidney donor. Armed with more knowledge about the process, and the direction to move forward to yield solid results, I registered online at the National Kidney Registry. I would soon learn that my journey becoming a living kidney donor would give me not only a meaningful experience, but a very special connection to a support system of other living donors.

-  Part II to follow...

Until next time... as you shop for holiday gifts, don't forget about your favorite non-profit organization.