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...  everythingaboutkidneydonations.com. 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.

Thursday, November 25, 2010

thanksgiving

Since I've been an adult, Thanksgiving has always been my favorite holiday. I love the anticipation of knowing exactly what the day is going to be like, and never being disappointed. It's an easy holiday. Easy, because there is nothing superficial about it and people have little to no expectations from others. It requires little effort and lots of love. Sure, preparing the meal requires time and hard work but something tells me that those who volunteer to serve up the goods, are just as happy to share their labor of love with you as you are to savor it. Plus, it's my annual tradition to watch 'Planes, Trains and Automobiles', and laugh my a** off again and again at the same stupid scenes.

This Thanksgiving will be special to me because I will be participating in my first 5K race since my surgery. I ran the local Turkey Trot 5K last year on Thanksgiving and really enjoyed the energy and stimulus of the crowd. This year I decided I would participate in the Cardiac Classic 5K, here in Schenectady's Central Park. Truth be told, I'm terrified - not of the race, but of the temperature right now. Mr. Weatherman says it's at around 22 degrees. Scorcher, eh?  I will look like the Michelin Man, with my 5 layers of clothing, but I don't care. This is a big day for me, and I don't expect anyone to understand, but...  I'm running a 5K  two months after I donated my kidney!

I have been dedicated to my training since I was given the green light by my doctor to start running again on October 22nd. I am still slow, I'm winded a bit, and I still have small and short stabbing pains in my abdomen that come quickly but leave just as fast. I'm just now beginning to get back to my goals at the gym with my strength training, and hopefully soon will be much stronger. See, I find this all fascinating. It blows my mind that a person can donate their organ, recover, and then feel as though nothing really happened only two months later, and then have the ability to run a road race. I'm dreading the cold temperatures but very excited to participate. My goal is to finish (before Christmas). I don't care how long it takes me (yes I do), and I'm sure this is not going to be one of my better races, but, it's a huge accomplishment for me.

For today's race I posted this sign on the back of my Michelin Man outfit...
I'll be wearing it proudly.


Perhaps some of you readers would consider donating your kidney but are concerned about your ability to successfully continue your physically challenging activities long after your surgery. You should be concerned, just as I was. Because just as fitness is the balance in my life, I know that many others have prioritized activities in their lives too. I'm here to tell you that you will not lose that ability. Please don't let that fear hinder your decision to become a living kidney donor.  You will recover. You will get your strength back. You will feel fantastic. I do!

This year, as I reflect on what I'm thankful for, among all the elements I have in my life that make me feel blessed, I'm most thankful for my health. Look where it took me, look at who received it, and look where it's going...  today.

Have a wonderful Thanksgiving everyone,  and I hope that I might inspire somebody today to take the path I chose and be a living kidney donor. The journey will be uniquely yours, but you will have me and many other donors, behind you and supporting you every step of the way.

Until next time... for today  -  eat lots, love your family and friends, and never take your health for granted.

Saturday, November 13, 2010

the dash

On Sunday, November 7, 2010, I had the pleasure (sad pleasure, but meaningful nonetheless) to attend a donor memorial, presented by the good people who work for The Center for Donation and Transplant (CDT), here in Albany, NY. My friend, Jen, is an organ procurement specialist for CDT and was kind enough to ask me if I would be interested in joining her. My immediate response was, ‘Sure, I’ll go, will there be any cake served?” Because it’s all about the sugar, really.

So, on Sunday afternoon, I put on my dress-up ‘girly’ clothes and off we went. Mistake #1 was not asking enough questions about exactly what this event entailed. Mistake #2 was neglecting to tote a large box of Kleenex with me. All I remember Jen mentioning was that there was going to be a guest speaker representing the transplant program at Albany Medical Hospital. I was intrigued by this and knew that I would walk away learning something about organ transplants, so I was game. What Jen didn’t tell me was just how sad, touching and heart-wrenching this ceremony would be.

This memorial is an annual event that pays tribute to all those beautiful people who have lost their lives, and donated their organs. Family members and loved ones of the donors were there to represent them and remind us all just how special they were and how special they continue to be, by giving the gift of life to someone else. Jeffrey Orlowski, CEO for CDT gave a beautiful opening speech, followed by a reading given by the parents of a donor. This poem is called, "The Dash". I was so moved by these words that I felt I should share them with you all. As I’ve said before, I understand that organ donation is not for everyone, and I can appreciate this. It’s a very personal decision. I do believe though, that anyone that reads this poem will for even a moment, think twice about how precious our lives are.

The Dash
by Linda Ellis

I read of a reverend who stood to speak
at the funeral of his friend.
He referred to the dates on her tombstone
from the beginning...to the end.
He noted that first came the date of her birth
and spoke of the following date with tears,
but he said what mattered most of all
was the dash between those years.

For that dash represents all the time
that she spent alive on earth…
and now only those who loved her
know what that little line is worth.

For it matters not, how much we own;
the cars…the house…the cash.
What matters is how we live and love
and how we spend our dash.

So think about this long and hard…
are there things you’d like to change?
For you never know how much time is left.
(You could be at “dash mid-range.”)

If we could just slow down enough
to consider what’s true and real,
and always try to understand
the way other people feel.

And be less quick to anger,
and show appreciation more
and love the people in our lives
like we’ve never loved before.

If we treat each other with respect,
and more often wear a smile…
remembering that this special dash
might only last a little while.

So, when your eulogy’s being read
with your life’s actions to rehash...
would you be proud of the things they say
about how you spent your dash?


See, I wasn’t kiddin’ ya, was I? Wow, talk about rippin’ your heart out. After I abused the hell out of a box of tissues, it was time to strike up the band for more grief and misery. Why not add to the despondency in the room by inviting a musical trio to share a dirge or two with the crowd as the family members were invited to come to the front of the room to announce the name of the donor, and light a candle in their honor? There were 42 families invited, so I only tore up 42 tissues in the second half of this somber ceremony. I don’t remember the last time I felt so emotionally exhausted and torn up. While I would never volunteer to subject myself to this afternoon of torture again, I will never forget the meaning and acknowledgement shown toward so many deceased people that have given a new lease on life to so many others.

This event was important to me because it reminded me how much the gift of an organ, cadaverous or living, means to someone who’s life is diminished without it. For those that can’t go forward with the decision to be a living kidney donor, please don’t forget that you can still donate life by registering to be an organ, eye and tissue donor upon your death. How wonderful to be able to let your memory live on in the body of someone else, long after you’re gone.

I never got my cake at the memorial service, but I did get the opportunity to be among so many others that can appreciate and honor the meaning of organ donation.

Until next time... register to be an organ donor  today!

Sunday, October 31, 2010

scar(y) - boo!


WARNING: Post contains graphic photos, but it's Halloween so suck it up!

I’ll be honest here, I have contemplated sharing this post for some time and it’s all because of my fear of posting these photos. But, this blog is for future donor-wanna-beez, and I’ve decided it’s very important to reveal the incision pics. After all, this is the most important part of the procedure really. This is where it all happened, and it's a mark I will wear proudly, forever.

When I was conducting research about living kidney donors, I can only recall locating one image of a donor’s scar from the surgery. Hey, I’m curious, just like anyone else would be, right? Now, I’m not a narcissist and I’m not terribly vain, but if there’s one part of my body I feel pleased to be genetically blessed with, it’s my waist and belly button. I have a relatively flat stomach, no muffin-top yet, but I’ll never be Jillian Michaels either. I’m healthy, I can complete 100 sit-ups with little effort and thanks to my genes, I just naturally have a small waist. God gave me child-bearing, disproportionately large hips instead. 

Yes, I’ll admit it, I did have concerns as to what my scar would look like 6 months after surgery. I also came to terms that I might not like the results of how it healed, or the shape, or the color. Considering the gift I was going to give, I told myself that this was all irrelevant in the long run. And it is.

So, here ya go... BOO!


Before...

This photo taken September 20, 2010 - 2 days before surgery.







12 days post-surgery...

This photo taken October 4, 2010 - 12 days after surgery.
Steri-strips still intact, belly still swollen.


5+ weeks after surgery...

This photo taken October 31, 2010 - 39 days after surgery. Scar getting lighter daily.

So, there ya go... kinda creepy, eh? Kidding. It's not creepy, it's science and as far as I'm concerned it's a medical miracle. I can't believe that they pulled an organ the size of a computer mouse out of that tiny little space. I gotta say, doc did a fantastic job and it's still not healed completely. I know and have learned, it will fade more and not be as tough as it is now. I'm tending to it daily with Vitamin E oil and have been very fortunate that I had no infections during the healing process.

I have had many donor-wanna-beez ask me about the incision.. How big is it? ... Does it hurt? ... How many do you have? Well, every donor is going to heal differently, primarily because we all have different surgeons and they all perform using different techniques. Because my surgery was performed laparoscopically, I was fortunate to have only one incision, some donors will need to have additional incisions based on their situation. Yes, it still hurts, but I'm not in pain. It's more like a hard pinch, and still sensitive around that area. It's getting better every day and I even started doing abs again at the gym. It's hard work, it's uncomfortable to say the least and feels weird (and I know I look weird doing them), but I'm getting there.

My purpose in this post is to convey yet again the simplicity of this experience. Look and see for yourself, I truly don't think that this scar is really that bad. I would do it again tomorrow if I knew I had to live with another one next to it. Hey, it's far less offensive and much more attractive than some of the tattoos I've seen, and this scar saved a life!

Until next time... To all the donor-wanna-beez, keep the emails coming - I have lots to share with you all so don't be shy:   ars0168@yahoo.com

Tuesday, October 26, 2010

2,861 miles away and alive, in julia

My physical recovery from my surgery has been going so smoothly, and improving at a much faster rate than I had anticipated. I'm still feeling lethargic, but it's not stopping me from pushing forward. I'm running again - well, skipping/shuffling/scooting, is more like it. It's coming back, but I am taking it easy and only increasing my time/pace minimally to avoid any setbacks.

My emotional state since my donation has been better than expected as well. I feel fantastic, and probably more alive than ever. I feel like my spirit is lifted, my heart and soul is fulfilled. To be honest, I never really felt like this surgery was a 'big deal'. Yes, it was a pain in the a** getting stuck with a needle a thousand times, and all the emails, phone calls and organization of the logistics during this journey was quite honestly, just annoying. But that's it. No. Big. Deal. I hopped on the table in the O.R. for my surgery, I awoke hours later, I rested for a week and now I'm at close to 100%, or at least I feel like I am.

The past week or so I have been thinking more about my recipient. Wondering...How she was doing? Was she healing, or was she suffering setbacks? What about her new New York kidney - was it living up to its expectations, or was it checking out once in a while for a Pinot Grigio and a glance at Derek suffering the loss during his last game of the season? I have heard nothing from her transplant coordinator and decided that I would give her a call in about two weeks to see if she could 'check in' on my lil' kidney. She mentioned to me in a phone call the day after my surgery, that the recipient wanted to contact me and would do so by letter. Just like my grandmother waiting for her TV Guide Magazine, I sprinted to the mailbox daily, with hopes of seeing an envelope postmarked with a big "CA". I truly felt like I would never hear from her, and had pretty much accepted that, sadly, but never regretting once my decision to donate. Everything happens for a reason and I felt that if she didn't want to reach out to me, she had her good reasons, and that's ok.

On Saturday, October 23rd, I pulled an envelope from my mailbox, postmarked from Bakersfield, CA. I barely had a moment to retrieve it from the box before my heart and eyes poured tears of joy. My hands shaking, my eyes crying and my heart filling with purpose. I haven't cried that hard since Ricky Martin came out of the closet. It was ridiculous and had I been in front of an audience, I would have died of embarrassment. It took about 3 minutes before I could even open it, I was admiring her handwriting and my mind was buzzing with curiosity as to what was inside. Quite honestly, I didn't care. She could have inserted a coupon for a free car wash and signed her name and I would have been satisfied. Just the very thought of receiving contact from her was very emotional for me. I had been waiting and wanting, but truly feeling like it might not ever happen.

I pulled out the notebook paper folded neatly inside and out popped a small photo of her taken with her husband and daughter. So, again, the tears were flowing like a river and I'm gasping for air. Look! - it's my recipient, there she is with my kidney inside of her!  She's real, and that's her family right there in front of my eyes! I can't believe it's real and that this is the person that is living freely with my crazy little bean inside of her. Unbelievable!

Her letter so beautifully scripted, so precise and elegant, so gracious and kind, thoughtful and caring. It was so much more than I ever had expected.

             "...you donating your healthy kidney to me has given me 
              a second chance at living a longer, more healthy, and 
              more fulfilled life. You, Angela are my 'Angel' and I 
              will always hold on to that."


              "...recovery for me has been going well. My labs have
               been great and the doctors are happy with my new 
               kidney function."


               "...know how grateful and thankful I am for the best 
               gift I could receive... your donation was the beginning 
               of a chain that will save so many other lives - may 
               God bless you abundantly for your act of kindess."


Two pages of sincere gratitude and honest thoughts that mean more to me than I ever imagined. After reading this, I now know that this was a big deal -  a very big deal. It's really real and I am amazed that I am sitting here today in New York, and my kidney is 2,861 miles on the other side of this country providing a new lease on life inside a woman that I have never met. It has finally hit me and this entire journey that all along seemed so simple is now so much more. I am thrilled and filled, with emotion. I am blessed and proud to have given this gift. I am so very excited to begin a beautiful connection with this woman that will forever be a part of me, this woman named Julia.

Again I am asking you, the reader, to please just entertain the thought for a moment as to how easy and possible it is to donate your healthy kidney to another that so desperately needs it.  I encourage you all to at the very least consider the conversation with yourself. You can't imagine how meaningful this experience is, and how little sacrifice you are making to provide someone with a much deserved quality of life that most of us take for granted. Ask me how you can become a non-directed kidney donor - how you can save a life.

Until next time... Happy Halloween!