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.

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.

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.

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!

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