Psst....

Guess who's creative juices are coming back?  Yup, MINE!!

The "body image" post I've been working on for eons is driving me nuts but  for some reason, the words for my "transplant friendships" blog are coming to me, bit by bit.  YAY!!!!   I hope to have it up within the next week or two.  :-)

BIG ANNOUNCEMENT!!!

THE TRANSPLANT GAMES OF AMERICA ARE COMING!!!


Who: YOU!! If you're a recipient, donor family, living donor, medical professional, or supporter...you need to be there!!!!

What: The Transplant Games of America

When: July 28-31, 2012

Where: Grand Rapids, Michigan

Why: Raise awareness on the need for more organ donors and to show that transplantation WORKS!!


Here is the official press release:

http://www.mlive.com/sports/grand-rapids/index.ssf/2011/08/grand_rapids_to_host_transplan.html


Here is the official games website: Transplant Games of America

Update....

Alright, so I've been a crappy blog mistress.  Sue me.  I haven't forgotten my previous post (friendships vs. body image) and I'd actually been working on them.  Then, life got in the way.  Translation: I got a promotion and have been working my adorable patootie off lately. 

I haven't forgotten but give me a few weeks so that I can catch my breath and get my creative juices flowing again.  Thanks.  :-)

Body Image vs. Friendships

As usual, I can't make up my mind.  Right now I'm working on two future blog posts.  One is about body image/women's issues.  The other is about transplant friendships and how they've shaped me and helped me over the years.

Which one would you rather read about first? 



15 years ago...

My heart and lungs are celebrating their quinceanera!

In just a few hours, I’ll be celebrating 15 years since receiving my heart/double lung transplant.  In that time span, I’ve graduated high school and college, welcomed numerous family members and said my good-byes to others.  I’ve lost many of my original set of transplant friends but gained an amazing second family via the U.S. Transplant Games. 

For my family and friends, it’s a happy occasion but for my donor family it is a somber day.  Another year has passed without their daughter/sister/niece.  Every year, on the eve of my anniversary, I’m able to remember how I sick I was and where I was when I got the call that changed my life.

What you’re about to read is a chapter of my story; something I wrote a long time ago hoping it will be published one day. 



May, 1996.
L-R: a transplant coordinator, Donna; MY transplant coordinator, Pegi; Dr. Cohen (pulmonologist) and Dr. Mallory (my other pulmonologist at the time).  Up front: me



About a month pre-transplant, my body let me know that I was running out of time.  My eyes started to look blood shot and tired. When I asked my dad why I looked like this, he told me it was because I was dying. My breathing was so shallow that I constantly sounded as if I had just run a marathon. I now required more than 12 hours of sleep a day though I wasn’t on any oxygen.  (The holes in my heart ruined any chance of it having a positive effect on my lungs.) We had to get a permanent wheelchair that I used whenever my family and I went anywhere for long periods of time (such as the museums or zoo…though I usually fell asleep).  I couldn’t walk around the supermarket with our family when we would do our weekly shopping.  I had to either sit under the cart (yes, I was that small) or stay in the magazine section.

I remember experiencing a frightening fainting spell in the library due to the lack of oxygen to my brain.  One minute I was going through the books, the next I was holding on to a rack passed out.  I came back within a minute or so but something was very wrong. I remember gasping for for my mom, desperately trying to take one small breath.  The following Monday at clinic, my doctor told me point-blank that if I ever had another fainting spell like that again, I'd have to be admitted and wait for my transplant in the hospital.  My body learned it's lesson and I didn't have anymore fainting spells.

Another time, I got tired just by walking across the street from the parking garage to the hospital for a regular clinic visit and physical therapy.  As soon as I walked through the revolving door, I had to sit down and rest for 20 minutes.  Even after I had caught my breath, I had to use a wheelchair to take me up to my check-ups.

Yet I never gave up.  I just knew I’d get the transplant time. I didn’t think God would do something stupid and let me go through all of this and not survive. I don’t know where that 16 year old girl found her inner strength…. 

                Tuesday, June 11, 1996, was like any other pre-transplant morning for me.  I read the comics like always but on that particular day the strip, Family Circus, stood out.  It showed an operation being performed on the television with only daughter, Dolly, watching. She pointed at the screen telling Mommy and Daddy, “The heart of a donor must already be full of love.” After reading this my parents jokingly said to me, “Maybe this is means that you’re going to get your transplant soon.”  How were they to know that in less than 72 hours, they’d be eerily right?



15 years ago, on June 11, 1996 this comic strip was published in newspapers across the nation. I've always wondered if this strip caught either the eye of my donor or donor family and maybe nudged them in the direction of organ donation. 

At this stage of my life, I didn’t care about my appearance.  I was used to getting zits and blackheads, having greasy hair, and unshaven legs.  It was a very big deal if I took “half a bath” (washed from the neck down) three times in a week.  I rarely showered but during the afternoon of Thursday, June 13^th, Mom nagged me to the point where I dragged myself to the bathroom and washed my hair with some shampoo and conditioner and scrubbed some good ole’ soap on my body.  She was also on my case because Father’s Day was right around the corner and I still hadn’t “made” anything for Dad.  While everyone else was getting ready to go out to dinner, I grudgingly plopped myself in front of the computer and made a card/letter for my father.  While my computerized letter was coming out of the printer I thought, “What’s the big deal?  I could’ve made this tomorrow or Saturday and given it to Dad on Sunday.”  Let’s just say that Mom’s peskiness would turn out to be a couple of blessings in disguise.

Jennifer and her family were scheduled to return to Muncie, Indiana the following morning and we (five families, 17 people) threw her a going away party with food and outdoor fun. We first went to Lone-Star Restaurant and I ordered a HUGE stack of baby-back ribs with a side of fries and a Sprite to drink. Since I was on a small dosage of Prednisone, and already had the increased appetite, I ate all of my ribs, a quarter of my fries and drank about half of my soda. How was I to know that that meal had to last me for a few days? 

Afterwards, we went to Swing-A-Round Fun Town. It has bumper boats, a batting cage, go-carts, etc. Once we got there, my dad offered me my wheelchair (which we now brought with us everywhere “just in case”) but I declined since I knew I wouldn’t be running around like everyone else.  I missed the height requirements for the go-carts by mere inches so I asked for some money to play Skee-Ball. After a few rounds (and winning quite a few tickets) I wandered outside and sat on a bench to observe my surroundings.



Swing-A-Round: where my beeper went off!



Just before 9 p.m., my sisters were in line for another turn at the go-carts and Jennifer’s family was trying to get the five of us together for a family photo.  They were going to put the picture in the scrapbook they were making in memory of Jennifer’s transplant journey. My sisters never got that second ride and that picture was never taken. 

One minute I was staring out into space. The next, I heard this noise out of thin air.  I got my dad’s attention and asked him, “Isn’t that the beeper?”  He immediately stopped what he was doing, recognized the number, and confirmed that it was hospital. My reaction?  I started running like Forest Gump! Where was I going? To the hospital!  In my naïve way of thinking, I assumed I’d just run to the hospital all by myself. Dad yelled, “STOP!” and I froze, literally vibrating with excitement.  Dad said, “Calm down.  Let me call the hospital to see what’s up.”  We had to find out if this was a mistake or a real possibility.  When my mom and sisters learned that the beeper had gone off they began to cry!  Our friends tried to calm them down explaining that the hospital wouldn’t have called if they didn’t think good organs had become available. What was I doing? Laughing!  I’ll be the first to admit that when I’m nervous, I’ll crack jokes and laugh inappropriately and that night was no exception. 

Those who were at Swing-A-Round but weren’t part of our group just stared at the commotion we were causing.  I’m sure they were wondering why some people were crying, others were getting agitated at the pay phone, and one person in particular was (literally) cracking up.

Eventually, we learned from a coordinator that this was the real deal (so far) and we had to get to the hospital ASAP.  We hugged everyone good-bye, piled into the van and drove in silence.  My mom and sisters had finally stopped crying but at one point, it was my turn to get scared.  I confided to my father about these second thoughts that I was having but he assured me that God wouldn’t have allowed me to receive this call if He didn’t think it was the right time.  This helped calm my nerves and by the time we pulled up to the front of the hospital, I was ready for whatever was in store.

We had no idea where to go when we first arrived and at one point my dad had to exclaim to my mom, “Yolanda, stop!”  She was running around like a mad woman trying to find help.  Finally, someone came with a wheelchair and took me to the seventh floor to prep me for surgery.  While boarding the elevator two nurses exited and saw me.  My parents told them that I’d gotten paged for a transplant and they wished me good luck.  I’d be the first heart/lung recipient of 1996 for St. Louis Children’s Hospital!

My poor parents were beyond scared and my sisters were exhausted.  I immediately changed into my hospital gown and the nurses started looking for the perfect vein to insert my IV.   They knew I was going to be a hard person to stick so they asked for a particular nurse who was excellent at getting patients on the first try.  After a tight knot on my arm from the tourniquet and a few slaps on my hand and arm to make the vein “pop up,” the IV went thru without a hitch.



my hospital bracelet



For the next few hours, tests were being done on the organs and me that would eventually enter my body.  Tests on me to make sure I didn’t have a cold or flu or anything of the sort.  Tests on the organs to make sure they hadn’t been damaged in any way during the flight from one hospital to the other. 

False alarms or “dry runs” are common, especially for lung recipients.  Why?  1.) The lungs are one of the largest organs to transplant; they are also the most fragile.  There is a better chance of them becoming damaged (either during impact of said incident or between hospitals) more than any other organ. The lungs have to literally deflate before they can be transplanted. 2.) (This is where “medical politics” comes into play.) Let’s say that a set of heart and lungs have arrived and are intact.  On the one hand, you can keep the organs together and give them to one person.  On the other hand, you can spread the wealth and give the heart to someone with a virus and the lungs to someone else battling a disease or give one lung to two people.  It’s because of these scenarios that heart/lung transplants are so rare. 

Around 1:30 a.m., on June 14^th, a nurse came to my room with a wheelchair.  It was time.  I asked if I could use the bathroom and she said yes.  I also needed to get my weight checked one more time.  I did my business and then stepped on the scale.  My last pre-transplant weight was eighty-eight pounds.  Afterwards the five of us went down to the 4^th Floor—Operating Rooms.  We were put in a small “waiting room” while the surgeon and nurses did last minute prep work to get ready. Just before I was wheeled away from my family (and since we had our camera with us), my dad asked a nurse if she could take a couple of pictures of the five of us….just in case.  Years later, and I’m amazed.  My parents and sisters had sad tears in their eyes and weak smiles on their faces. My eyes were bright, clear, and excited; the smile on my purple lips showed only happiness.  I was ready.



"My eyes were bright, clear and excited; the smile on my purple lips showed only happiness. I was ready."

A nurse then started wheeling me to the O.R.  I looked over my shoulder, waved to everyone one last time and (with an eager smile on my face) said to my family, “Bye guys!  See you in a few hours!”   I was wheeled into the room and asked to step on a stool to get on the operating table.  After being strapped down, someone placed a mask over my face.  I was asked to count backwards starting at one hundred….I didn’t even get to ninety-five.

End of chapter.

Since then, I’ve thought of my donor and her family often.  I know that my organs came from an 11-year old girl in a suburb of Chicago (okay, so I do know the city but I’d rather not publicize that) and she had the same blood type as me but over the years I’ve wondered about her and her family. What she was like, what her name is, how she died and how her parents came to that difficult (but life-saving) decision.

I’ve written twice, doing my best at expressing my utmost gratitude for what they’ve done for my loved ones and me.   They’ve given me more than just “years”; they’ve given me memories and moments that will last a lifetime.



Thanksgiving, 2010



You've gotta have FAITH!!

When I was 16, I just knew I'd get my transplant in time.  I didn't think God would so something stupid and le me die after going through so much.  The 31 year old "talking" to you is scratching her head wondering how that teenager found the faith, courage, and confidence to believe in a Higher Being.

When I was a kid, I LOVED listening to this Saturday morning radio show, Kids Kingdom. I liked the music (some religious, some from old Disney films) and they would insert various biblical lessons throughout the program.  My sister and I enjoyed it so much that our parents would record it off of the radio and then play it during long family road trips during the summer.  Also, during the school year I would attend CCD (Confraternity of Christian Doctrine) classes at my parish center.  In laymen terms, CCD classes are where I'd learn basic teachings of the Catholic Church. 



I still remember The Prodigal Son and it's because of those CCD classes.  Also, I went to CCD to receive the sacraments of the Church: Reconciliation (yup, the infamous "confession" thing that Catholics are known for and I'm still bad at going) and First Holy Communion.  After my elementary years, I then graduated to youth group.  The lessons were getting harder and were prepairing me for Confirmation (which I would receive in high school) yet the environment  as a whole was a bit more relaxed.  Our youth leader (Kevin) knew that we were in our adolescence and needed fun church-related games as well as nothing-to-do-with church activities.  (The lock-in at the parish center when I was in 6th grade comes to mind. :-))  I enjoyed youth group but when I was in 8th grade something happened--Kevin changed parishes.  Many of us were very sad at this news.

The new leader for our youth group was someone I had known for a long time; in fact, I was friends with two of her daughters.  Unfortunately, youth group was no longer "fun" and the people in my group just went through the motions. 

Also around that time I was asking myself the all important questions but from a slightly different angle: Why am I here?  Why was I born with so many health problems?  What did I do to deserve this?  Am I being punished?

So with a bad combo of slowly deteriorating health and now boring youth group you now had a 15 year old girl who was very much questioning her faith and why she was even on this Earth.

Around the time of Easter of 1996 my family and me went to a church's production of Jesus' life leading up to Easter Sunday.  Many scenes featured Jesus's miracles (turning water into wine, the leper is clean, casting out the devil in a blind and dumb man, etc.) and it was in that moment that I was overcome with emotion and thought 'Okay, God and Jesus MUST have a purpose for me--but what is it?!'  In a way, I think that belief helped me during those last few months pre-transplant.

By the time we moved to St. Louis in mid-April I knew that I needed the transplant but I was still scared.  By late May/early June I thought, How long do I have to wait?! and wanted to throw the beeper up against the wall.   I was just sick and tired of BEING sick and tired.

During the late hours of June 13th, while driving to the hospital, I had some last minute fears. Dad assured me that I wouldn't have gotten beeped if God didn't think it was my time.  This helped put me at ease.  The moment that I walked through the door, I was ready for whatever was in store.  We had two pictures taken of the five of us right before I was wheeled into the O.R.; I was the only one smiling.  I just KNEW God/Jesus/my donor/SOMEONE was watching over me.  Also, it turned out I was receiving my transplant the Feast of the Sacred Heart!  Seriously! Feast of the Sacred Heart is a religious devotion to Jesus' physical heart as the representation of His divine love for Humanity.  (Description from Wikipedia)

 

 

During my late teens/early 20s we had some changes within the parish I attended--mainly, a new priest that I REALLY didn't like.  He started trying to do things differently and for some reason, that shook me and turned me off from the church for a while.  Oh I still attended but I only went through the motions. 

When I moved to Tallahassee in December 2007 I was in a bad place spiritually.  I had lost many transplant friends, had gone through a bad case of chronic rejection less than two years ago, and was just angry at God in general.

Fast forward over two years later I thought, You know what?  Maybe I could start going back to church again. After going online to Google I found out that the closest church was about a 15 minute walk for me.

Okay.....I can do this.  I walked and did the sign of the cross like always and started going through the choral mistal.  I then went through the misalette, remembering the stories I had learned when I went to CCD.

I liked the church but it wasn't until this past Spring I took a giant step~I attended a CRHP (pronounced 'chirp') weekend.  CRHP stands for Christ Renews His Parish.  I'd heard about these weekends a couple of times every six months during mass but I never went.  In March, I approached the sign up sheet.  Afterwards I thought what have I gotten into?! but as soon as I walked through the doors of the retreat, I knew I'd be okay.

I met many women from different backgrounds, ages, life experiences, etc. but we all shared the same common faith.  I was learning a lot more about my Catholic faith (still am!) after that weekend I knew I had to be apart of it.  I now attend weekly CRHP meetings in preperation for the next retreat (which is in September) and for my witness which is (approporiately) New Life in Christ.   :-)

I'M NOT DEAD!!!



I'm sooooo sorry I haven't posted in almost two months.  Unfortunately, for these nearly two months, I've been in a bad funk.  I swear, I'll post ALL of my "Transplantation Education" here soon (HOPEFULLY later today).   Funny enough, I posted them EVERY DAY during the month of April....I just forgot to post them here too.  OOPS!!

Anyway, I'm cyber-back and sadly, have lost some transplant friends since them.  Interestingly, their deaths have inspired a blog post in me.  I hope to post about it during either June or July.

And I have a totally awesome blog post coming in a couple of weeks regarding my "transplant birthday" which I'll be celebrating in 15 days!!  WOO HOO!!

Hugs and Love to my followers   :-)

APRIL IS NATIONAL DONATE LIFE MONTH!

Here is my first "Did you know?"

DID YOU KNOW.....

that as of 5:45 a.m. (EDT) there are 110,605 people on the national waiting list?  That's 88,112 for a kidney, 1,380 for a pancreas, 2,232 for kidney/pancreas combo, 16,154 waiting for a liver, 264 for an intestine, 3,168 for a heart, 1,754 for lungs (single or double), and 65 waiting for heart/lung combo.

Those may look like just numbers to you but they're not.  They're PEOPLE!  Remember: 15 years ago I was part of that number!

You know you're a lung transplant patient when.....

I got this from The Power of Two's (Ana & Isa's) blog. I hope they don't mind my posting it. :-)

You know you’re a lung transplant patient when:

You have pills, masks and antibacterial hand gel in your pocket or purse <----to quote Meatloaf: Two outta three ain't bad.....(I don't carry masks)

 

Your signature looks like you used an Etch-A-Sketch to sign, because of drug induced tremors <---my handwriting naturually sucks anyway. Glad to know I now have a legitimate excuse! ;-)

You know your creatinine, lung function, white cell count, and prograf level intimately. <---*nods* yep

You talk to your healthcare providers like they are friends (or enemies?). <---more like enemies

You frequently spout out four letter words <----oh-so-true ;-)

Your cough-sniffle radar is on high alert in public places and you run away in hysterical paranoia when someone sneezes or coughs near you <----YES!!!

Your diabetes is a piece of cake compared to everything else you’ve been through <----another "yes"

Any day above ground is a good day <----hahahaha.....very true!

You honor and appreciate your donor family with all your heart (or lungs) <----very much so :-)

You freak out with any fever, wheeze, phlegm, shortness of breath, or pain in your lungs <---totally :-(

You are terrified of children because of their germs <----nope, I just use common sense

 

Your insurance company hates you. <---we have a love/hate relationship

You are an “inspiration”. <----I've been told this **blushes**

You have an excuse to weasel out of the dirty housework and gardening. <----yep, though I DO enjoy cleaning the kitchen

You love the wrinkles you see on your face and welcome every birthday. <----welcome a birthday? of course! the wrinkles? ....not so much ;-)

Your mind wants to do more than your body can. <--sadly true :-(

You keep your hospital in business. <---Yes and I'm not proud of that! :-(

You can drive to your hospital with your eyes closed <----LOL! Not literally but yes my sense of direction IS amazing. :-)

You have felt like hell and hated your body at some point <-----every day

You have felt wonderful and loved your body at some point. <----every day

Rejection This!

Five years ago tomorrow, I was diagnosed with chronic rejection in my lungs.  For many recipients, especially those who have received a lung transplant, this is an experience that almost as bad as end-stage disease.  In early 2006, I was obese for my height and my lung function was dropping at a fast and sudden rate.  A disasterious biopsy didn't help and my doctors were still stumped. 

After going to Tampa General Hospital on March 20, 2006, for a check-up (and more blood work) and lung function still decreasing the doctors sent me home still confused.  The very next afternoon, my co-ordinator called me and said in an excited voice, "Kim!  We know what's wrong! You're going thru rejection!"  I sarcastically thought to myself, "Great..." but inside, I was devastated and started to beat myself up. 

I was hoping to be one of the first ever heart/double lung transplant recipients who would coast on by, not experincing rejection OR infection.  Alas, that was not meant to be.  Though the next day was my sister's 18th birthday (yes, it's also why I can remember the dates so well) my doctors wanted me back on the transplant floor early the next morning to start IV treatment.  They had me on Solumedrol (via an IV that had to stay in my arm for 4-5 days) and increased my Prednisone--by A LOT.  From 5 mg daily to 40 mg, my body went haywire!  I was now very swollen, very hungry, and a bit of an insomniac!  Not only that, but I was now taken off of Cylosporine and Imuran (two anti rejection drugs) and put on Prograf, Rapamune and Zithromicin (Zithromax). 

After an intense year, I lost weight, was weened off the high Prednisone, adapted to Prograf, Zithromax and Rapamune and....brought my lung function back up to a stable percentage.  :-)

It has been almost five years since that diagnosis.  For some, it can be a grim time; sometimes leading to re-transplantation.  Me?  So far, not so!  I continue to keep my lungs at a stable area and keep on working on my weight. I guess there's not much else for me to say except......



REJECTION THIS!!

FUTURE BLOG POSTS

Here are the blog posts I've either already started writing or are forming in my mind:

• Life & Death~yes, it's what you think it's about
• We're All In This Together~different transplants, but still a family
• Hi-Ho~Transplant via the work place perspective
• Body Image~self-explanitory
• "The Call"~won't be posted until June  ;-)
• "Did You Know...?"~throughout the month of April
• Religion/Fath~yes, I'm still working on it

If you can think of any other topics you'd like for me to tackle, PLEASE let me know!!  Thanks!  :-)

30 years ago....

Photo of the first successful heart lung transplant being performed by Dr. Bruce Reitz at Stanford University

I'd like to take a moment and reflect on the 30th anniversary of the world's first heart lung transplant. It was performed by Drs. Bruce Reitz and Norman Shumway at Stanford University. The patient was Mary Gohlke, she lived for five years (an amazing accomplishment considering the time), and wrote a book about her experience.

Thank you to those pioneers for without them, I wouldn't be here right now. 

Doing my happy dance, Snoopy-style!



The U.S. Transplant Games--Part 3

Right after I got home from the 2006 U.S. Transplant Games, I sought relief from the swelling I was experiencing in my body.  A member of Team Philadelphia kept on wondering why I wasn’t on a water retention pill.  I remember thinking, what is she talking about?  But when she brought up the drug Lasix something clicked.  I remembered that I had been on that drug immediately post-transplant to balance out the onset side effects of high doses of Prednisone. 

When I got back to Tampa, I contacted my doctors and brought up the medicine and asked if I could be put on it.  My coordinator brushed off my complaints and simply asked me questions like, “are you keeping your legs up?”  I was furious!  I’d had a miserable time in Louisville walking all over the place feeling like a penguin and needed help!  After back and forth phone conversations, my doctor caved in and prescribed the medication.  (Side note: this was the ONLY time I was ever a “brat” patient and I still stand behind my decision of wanting to be placed on that particular medicine.)

Within a few months, I started being able to move my body again but something was still wrong.  I was constantly going to the bathroom, extremely thirsty, and losing weight rapidly. (I certainly didn’t mind that last part at all!)  I would occasionally ask myself DO I have diabetes.   I kept on pushing the thought away; afraid of the possibility that I just might be medically ill.  Though I knew what the classic symptoms were and had a feeling I was showing them, I figured that if I did have diabetes, my doctors would’ve noticed it in my blood.  Let’s just say I wound up being very mistaken…

Not only was I going through a lot of changes medically, my work was also being altered.  In September of 2006 I learned that the Tampa Field Office for my department would be closing the following July.  I had to either find a new job locally or accept the offer of a job transfer—to Tallahassee.  While the thought of moving so far from everything and everyone I’ve ever known frightened me, I secretly looked forward to the possibility of being very independent and on my own.  I applied for whatever state job I could find, went on numerous interviews and I still couldn’t get an offer.  After being able to post-pone the move by a few months, I moved to Florida’s state capital just 11 days before Christmas of 2007.

I was officially on my own but that first year or so of being an independent woman took a toll on me.  I suddenly had bills to pay, keep my place clean on my own, etc.  During that first year in Tallahassee, the 2008 U.S. Transplant Games took place in Pittsburgh, PA, July 11-16.  I’d lost weight and decided to stick with the 1500m race-walk as well as add 3-on-3 co-ed basketball as my events.  I didn’t want to do too much and just wanted to socialize.  On the months leading up to my trip to “Steel City”, I’d joined various transplant-related websites and message boards.  I was re-connecting with people I’d met via the Team Florida MySpace page I’d created as well as meeting new people who said they’d be at the games for the first time.  I was excited at meeting my new friends face-to-face. 

Jen (from Team Illinois) and me.  We "met" via the Team Florida MySpace page I'd created and meeting her was a higlight for me.

Right before I left for Pittsburgh, I sent up a small prayer to my donor, giving her thanks for having another opportunity at competition and making new friends and asked for some help at the events I’d be participating in. 

I arrived with a new packet of business cards (some of my info had changed between 2006 and 2008) and excitement vibrating inside of me.  I also arrived with a bit of an entourage; my parents were coming!

At previous games, I went by myself.  No friends or family to cheer me on and in all honesty, I didn’t mind.  I liked being on my own and having to take care of myself.  Some people were shocked at how independent I was; others seemed to feel sorry for me.  My parents had heard about the games over the years and decided to finally see what it was all about.  I was actually scared!  My parents are coming?!  Invading MY personal space?? I wasn’t too sure how I felt about it.  When they got there (a day or so after me) they came with a surprise: Nana!  Nana had decided to come too!  I was stunned and so happy to see her!

When I went to team practice for basketball, my first thought was what have I gotten myself into?!  I’m so vertically challenged it’s not even funny and I’ve NEVER competed in any type team sport.  OY!  Let’s just say that I ended up being very grateful for that team practice!  I learned to not be afraid of the ball, how to dribble, what type of shooter I am (I’m a lefty!), etc.  It also gave me a chance to get to know more people on Team Florida!  We played against Team Liberty (NYC and Northern NJ) and lost spectacularly but it was still fun being part of a team.

The sun was shining when I went down to the field on the morning of track and field events.  Unfortunately, I did exactly what I told myself not to do: I went too fast, too soon.   In other words, for the first few minutes when I was ahead of everyone in my age group, but I soon ended up being behind a couple of girls and stayed there.  I crossed the finish line third and thought Alright, I’m a bronze chick again. Imagine my shock when the announcer said that the girl who I thought won gold (and crossed the finish line first) was actually in the 17 and under category.  WHAT?!  That meant that I actually wasn’t third—I was second for my age group!  I won the silver!  And the girl who won the gold in our age bracket (18-29) only beat me by 18 seconds!!  I was stunned and so happy!

Laura (from Team Wisconsin) and me with our medals!

Pittsburgh was a dream but it also gave me a bit of a nudge.  During each game, I’d always wonder, Is my donor family here too?  Are they searching for me?  Do they even know that I’m still alive?  Do they even care? While in Pennsylvania, another member of Team Florida met her donor family for the first time—24 years after her liver transplant!  That meeting motivated me. 

Immediately post transplant (barely a month) my parents wrote a thank you letter to my donor family.  We never heard back though in hindsight, I’m guessing it was just too soon for them.  After those 2008 games, I was now wanting to know who my donor was, the family, the story—I was finally ready to know who saved my life and how it all came to be. 

In December of 2008, I mailed off my first thank you letter to my donor family.  I purposely had low expectations; it had been over a decade since their daughter had died and knowing my luck, my letter would most likely bring back painful memories instead of making them happy that a part of their loved one was still living in someone else.  In mid-January of 2009, I heard back from the transplant organization in St. Louis telling me that my letter had been forwarded to my donor family.  Ho hum.  I had vivid dreams about my donor and donor family around that time.  I’d love to know if some of the dreams were right.  I wrote another letter right after the 2010 Transplant Games but alas, never heard back from anyone.

The time between 2008 and 2010 was great.  I was becoming more stable financially (2008 was rough, to say the least), finally making friends in my new town, and going back to church.  I also celebrated a big birthday: the big 3-0!  When getting ready for Madison, Wisconsin (which is where the 2010 U.S. Transplant Games were held), I tried to lose weight to get ready for my events but in all honesty, I kept my expectations low.  Why?  I was now going from being in one of the smallest age bracket to one of the largest.  I knew I didn’t stand a chance at winning a medal so I just went in there looking forward at seeing everyone, making more friends and handing out new business cards.

Somehow, Madison topped Pittsburgh.  The weather was perfect, I was happy at seeing my old friends, ecstatic at meeting my online ones face-to-face, and was just on an emotional (and spiritual) high that whole week.  It’s sometimes hard to come back down to earth! Unfortunately, no one knows where the 2012 games will be held but rumors are definitely swirling.  I hope the NKF tells us soon so that my friends and I can start fundraising and training! 

If you’re post-transplant and have never been to the Games, I highly suggest you attend and meet others who are just like you.  If you’re a donor family and still need healing, please go to these games and meet thousands of people who are grateful for what you’ve done for us.  If you’re a living donor, go and be honored for what you’ve done to save a loved one or total stranger.  If you’re a medical professional, you’ll be reminded why you put your own blood, sweat and tears into caring for people like me.  If you’re simply a supporter, go and cheer on your loved one while they’re showing the world what they can do with this precious gift.  If you don’t fit into any of these categories, just go…..and be amazed. 



UPDATE

Hi All!
Just a quick note to let you know that I haven't fallen off of the face of the earth. I've just been really tired lately due to work (last month's busy-ness is finally catching up with me!).  I have about 3 blog posts drafted, Part 3 regarding the Transplant Games is being written (I'm in "stuck" mode right now) and I have another blog post being formed in my mind as we speak.

Also, I have great things in store.  Remember earlier in the year when I said I'd like to feature either a recipient, donor family, living donor, or someone on the waiting list?  I still mean it!  So please leave me suggestions in the comment box as to who you think I should feature first.  Yourself?  Someone you know?  Let me know who and why you think they should get the spotlight!  

Since April is "National Donate Life Month" I thought it'd be cool to do a daily "Did You Know?"   Every day I could post a little bit of transplant trivia and post it here (and the link on my Facebook) to educate people about transplants and the different organs. 

One last thing: I just thought of another idea.  Maybe I could also feature specific transplant centers.  How long they've been doing transplants?  What their specialties are? Etc.  What do you think?  Is this a good idea or should I nix it?

I LOVE comments and suggestions so keep 'em coming!  ~  Kim, Transplant This! creator   :-)



The U.S. Transplant Games--Part 2

Soon after the 2002 U.S. Transplant Games, I knew I had to find a way to attend (and participate in) the next games.  While attending the games as a spectator was enjoyable, I’d heard from countless people that being in the games and competing made it more fun.  One problem: the word “athletic” was not one of the Top 10 adjectives to describe me. 

I joined the Team Florida e-mail listserv and I learned the where (Minneapolis, Minnesota) and when (July 28^th-August 1^st) of the 2004 U.S. Transplant Games. 

After many months of fundraising (via corvette raffle tickets), I finally registered and booked my flight (just under $240 roundtrip!).  For my first games, I decided give Bowling and Table Tennis a shot as my “sports.”  I practiced for months on my bowling but forgot to do ping-pong—oops!  I created business cards with my info (name, team, type of transplant, e-mail address, etc.) and with plans to hand them out.

These are the pins I collected during the 2004 U.S. Transplant Games

I arrived to Minneapolis a bit of a novice.  I didn’t know anyone on my team except for the few I met at the uniform party in Tampa.  I figured winning a medal would be easy since my age group (18-29) had one of the smallest numbers of participants.  I forgot to consider the fact that many people had been to these games before me or they’d been in great physical shape even before their respective transplants.  Let’s just say I wound up learning a very humbling lesson. 

What was especially moving was that 2004 was the 50th anniversary of the very first (successful) organ transplant.  Dr. Joseph Murray (who performed said transplant--kidney) and Ronald Herrick (the living donor to his identical twin, Richard) spoke at, and were honored, at the Opening Ceremony.  Another highlight of the ceremony was watching the donor families enter the stadium with the donor quilts and hearing a donor mom speak.

Like I said in my previous post, it wasn’t until the games that I had any idea as to what my donor family had gone through at the time of their loved one’s death and their feelings in the transplant spectrum.  On the days leading up to (and on) my anniversary my family and I are joyous that I have survived another year post-transplant. For my donor family it is a somber occasion. Another year has gone by without their daughter who should be an adult.

Team Florida's sign: "We Will Rock You Like A Hurricane....And Yes We're On Steroids."  At the time, I wasn't a fan of the slogan but now I think it's hilarious.

While in Minneapolis, I finally attended the Lung Gathering I mentioned earlier.  I got to meet so many lung recipients (most of them due to Cystic Fibrosis) including my new friend, Ana, who I had met at the last games.  When I first saw her I waved but she looked at me funny, as if she didn’t know me.  I thought, why doesn’t she remember me?  While leaving, I saw Ana again but with another person. It eventually dawned on me that Ana is a twin!  That was my first encounter with the Stenzel twins and the one who looked at me funny wasn’t Ana at all but her (very identical) twin sister, Isa.  Over the years, I’ve gotten to know both women and admire them for their desire to live life to the fullest. 

It was almost immediately after these games that I took a big step towards independence: I got a full-time job.  Between the 2004 and 2006 games, I started working for the state.  I was making money, paying my parents rent, purchasing things on my own dime, traveling, etc.  Three months before I was supposed to leave for Louisville, Kentucky (the location for the 2006 games), I experienced something I never thought I would: chronic rejection in my lungs. 

For the first nine years and nine months post-transplant, I was the “ideal advertisement” for organ transplantation except for one little problem: I abused the “increased appetite” side affect from Prednisone.  I’m not flat-out saying that the chronic rejection was specifically due to my weight gain but I’d be very surprised if the extra weight I was carrying around didn’t play some part in the damage that had been done to my lungs.  

I was diagnosed with chronic rejection on March 21, 2006, the day before my youngest sister’s 18^th birthday. 

I had to go to the hospital the very next morning to start IV treatments of Solumedrol, receive a sudden increase in my Prednisone (from 5 mg daily to 40 mg daily), and a big change in my main anti-rejection medicines.  From Cyclosporine and Imuran to Prograf and Rapamune.   I became very swollen, very quickly.  My legs were shiny, I couldn’t move my ankles or wiggle my toes and I had to buy new shoes, pants and tops.  I went from having thick, dark, curly hair (that I was just starting to manage!) to having my hair become very thin and falling out in clumps.  As you might imagine, this change in my appearance had in affect in my experience at the 2006 U.S. Transplant Games (June 16-June 21) but I’ll get to that in a moment.

June, 2006: actor Larry Hagman and me.  You can tell how bloated I was at the time.

Two days after my 10 year anniversary, I arrived in Louisville, Kentucky swollen but excited at seeing my old friends and making new ones.  I had leftover business cards from the last games to distribute and decided to “tweak” my events.  I discarded bowling (I ended up in last place though I still think those lanes were rigged ;-)) and added track and field.  The 1500m race-walk to be specific.  Why? I’m still not sure but I figured that walking for a sporting event couldn’t be all that bad. 

While in The Bluegrass State, I slept more (due to the pain I experienced while walking on my puffed-up legs) and accidently missed the chance to compete in table tennis.  No joke!  I took a morning nap, walked up to the check-in table during the afternoon, and learned that I’d been disqualified because I wasn’t there for the preliminary trials earlier that day.  I don’t even think the term “oops” describes this big goof of mine.  At first I was angry but within moments, I was literally laughing off the moment.    

While the sporting events are fun, one of my favorite things about the games are those little moments that make these gatherings so memorable.  A conversation with a donor family, meeting someone who had the same doctor you once had, being reunited with a friend from previous games, cheering on a teammate.  During the 2006 games, I vividly recall becoming friendly with a donor family.  The mother and daughter had come all the way from Fairbanks, Alaska and felt bad that I still didn’t know my donor family.  So much so, that the mother practically adopted me as her recipient daughter!  Though we did not keep in touch, I hope to run into her again at future games.   

These are the pins I collected during the 2006 U.S. Transplant Games.  You can see Team FL, Team Rocky Mountain, Team New Mexico, and others.

The morning of Track & Field I awoke with a big knot in my stomach.  I’d never done something like this before and was scared at how I’d perform.  I was very tempted to chicken out but I plucked up the courage and walked out onto the field.  I was able to stretch and warm up before my age group had to compete.  As soon the gun went off, I started walking very fast.  Or at least, as fast as my swollen legs would take me.  Whenever I’d race-walk towards where the restroom was, I was extremely close to walking in that direction instead of finishing the race.  That’s how nervous I was!

But I didn’t change my route. I walked around that track like I was supposed to and since I was the last person in my age group to finish, I got the loudest cheers.  I’d forgotten one of the main themes of the games: you’re already a winner just by being there.  Surprisingly, I did win a medal—bronze!  Though technically by default, I won the bronze medal in the 1500m race-walk in the 18-29 age group for women.  I was floored and was so happy to win.  While winning a medal isn’t the end-all-be-all of these Olympic-type events, it’s still nice to receive the recognition.  

Swollen, acne-ridden me with my bronze medal.  If I ever meet my donor family, I'll give this to them.

The time between the 2006 U.S. Transplant Games and the 2008 U.S. Transplant Games (which would be held in Pittsburgh, Pennsylvania, July 11-16) was an era of highs and lows.  The highs were awesome but the lows were difficult for me.

Mini Update

I know, I know.  I said I'd have Part 2 about the Transplant Games up by the weekend and the weekend has already come and gone.  Sue me.  Anyway, the good news is that I'm working on it as I type this message.  The bad news?  It looks like my two-part blog series about the Transplant Games will turn into a triple-hitter.  Yep, three parts. 

You've been warned.  :-)

**************************************************************************

UPDATE AT 3:19 P.M. EST:

I finished the blog post and just like I'd predicted, there will be a part 3.  It looks like I'll be able to post part 2 later this evening.  YAY!!  :-)

The U.S. Transplant Games--Part 1

“Let the games begin!”

Even before those words are spoken at the Opening Ceremony, I know I’m where I belong.

In 1990, the very first U.S. Transplant Games were held in Indianapolis, Indiana where just a few hundred organ recipients gathered together for one common goal: to show that transplantation does work.  The games are a place where transplant recipients of different ages, transplants, and corners of the nation gather to compete in a variety of Olympic-style sporting events.  It doesn’t matter if you received your transplant 20 + years ago or are a new member of the club—we’re all in this together. 

After the inaugural games, word spread throughout various transplant centers and the core group of athletes about this new event; a place where organ recipients could come together and meet like-minded (or organed ;-)) recipients.  For the first time, you’re surrounded by others who’ve had the exact same transplant as you (a rarity for me), received it the same year or their transplant was done on the exact same day as yours!  It’s a great feeling when you meet someone and find out they were either transplanted on June 14^th just like you or also received a heart/double lung transplant.  You discover that you aren’t alone in this world!
   

This bi-annual event has grown to include donor families, living donors, medical professionals, and “supporters” or family members/friends of recipients or donor families.  It’s a way for donor families to see that while their initial decision to donate a loved ones organs might’ve been painful; their choice gave people like me a chance to improve their quality of life.  It's because of them that my friends and I are still here. Sometimes, these games have given donor family and recipient the opportunity to meet. For living donors, it is a chance for them to be honored for their good deed.  They are a special group of ordinary people who have done extraordinary things!   

Those who work in the medical field are reminded why they do what they do.  Though they may have one recipient whose transplant is not successful, they see countless others who are still thriving.  

My introduction to the National Kidney Foundation’s U.S. Transplant Games happened not even two months post-transplant.  It was the summer of 1996 and while my parents (along with others) were in a meeting with a psychologist, four of us (Erik, Amanda, Blair and I) were with the social worker putting together our own Q & A “newsletter” that was to be printed and placed on the waiting room tables for those who were either pre or post lung transplant.  The very last page of the newsletter had an advertisement for the (then) upcoming 1996 U.S. Transplant Games which were to be held in Salt Lake City, Utah.   While I did take a glance and skimmed over the information about this event, I honestly didn’t care; I was too excited at reading my answers in the newsletter.  (I now cringe with embarrassment.) 

How was I to know that this advertisement was going to change my life?  BTW, the answer to the question about Dwayne?  He smiled MANY times throughout the day!  :-)

As soon as I moved back to Tampa in September of 1996, I lost touch with some of the friends I made during my time in St. Louis.  In the year 2000, I decided to attempt contact with The Katie’s.  I immediately heard from Katie K. and found out she had JUST been in my state!  Why?  To compete in the 2000 U.S. Transplant Games which were held in Orlando!  Damn!  Not only did I miss a chance at seeing my friend, but the opportunity to experience my first games had slipped thru my fingers. 

Between the 2000 and 2002 games, I started to learn what they were all about.  I found out that the 2002 games would (again) be held in Orlando.  If I wanted to compete, I’d be in the 18-29 age group.  I learned that the team you were on was based on where you lived, not where you received your transplant. I found out that you didn’t have to be in top physical condition; as long as your transplant doctor signs your medical waiver, you were good to go! 

While at a lung gathering in Tampa, I learned that my friend, Janet, would be attending (and competing in) the games and asked me if I’d like to go with her and her family.  I said yes but was still apprehensive; would I like it? Would the people like me?  Would I like them?  What event could I do?

The 2002 U.S. Transplant Games were held June 25-29 at the Walt Disney World Wide World of Sports.  I tagged along with Janet and her family (husband Mike and daughter Meredith) as a spectator.  I didn’t want to jump head first and compete just in case I ended up not liking the games.  Little did I know how wrong I’d be. 

While my friend was busy checking-in and all of that, I observed my surroundings.  I wish I could tell you I remember everything in detail but alas, my first games were a bit of a blur.  I brought a cheap disposable camera but didn’t take many pictures.  I was still able to attend the Team Florida welcoming party (though since I wasn’t a competitor, I wasn’t able to brag about the fact that I was then-six years post heart/double lung transplant) and purchase a team t-shirt (a cartoon-ish looking “sunshine”). 

I then went with Mike and Meredith to sit in the bleachers to watch the Opening Ceremony.  I silently kicked myself for not registering as an athlete and thinking, I wish our seats were better!  During the ceremony, the Phil Collins song Two Worlds from the animated film, Tarzan was performed.  At the time I thought, Oh my God!  I never thought about it like that before! It was truly the first time that I’d ever thought of the transplant process from a donor family’s perspective.  I was overcome with guilt for not having realized it before.   Of course, I cheered extra loud for Team Florida but for the most part, I observed my surroundings. 

I noticed a lot of people (both athletes and supporters) were wearing pins from the various teams.  I soon figured out that “pin trading” was created so that recipients can trade their own with others and (in addition) make a new friend and meet someone from another state.  It is a great way to break the ice.  I could walk up to a total stranger from another team and say “Do you have Team Florida yet? Well, here you go!”  Pin trading is so popular that a separate event should be created just for the exchange—people are that into it!   While I didn’t have any Team Florida pins with me but I did have some generic green ribbon pins back in Tampa.  Hmmm…..

Some of my pins from my very first Transplant Games.  Yes, that is Team Florida's pin! 

After the ceremony, we all met up together and Janet wanted me to attend something called a Lung Gathering that was created by Joanne Schum from Team Upstate New York.  Sadly, since it was so late in the day, Janet and I had to get back to Tampa before the Lung Gathering began.  Janet wasn’t doing her bowling event until the day after the next but by that time, I knew what to do to interact with my fellow recipients.

I got to the bowling alley wearing my Team Florida shirt with my organ donation green ribbon pins in my purse.  At first glance, people would say to me, “Oh, I’m sorry.  I already have Team Florida…” but then I’d immediately show them the pins I had and they would give me a second look.  While Janet was preparing for her turn to bowl, I was socializing and learning the Ins and Outs of pin trading and the games in general.  I learned that Team Hawaii is a hard pin to get because the team is usually small, Team Philadelphia is always HUGE, and the host team usually has a large group as well (hence why people would initially shy away from me when I’d try to trade pins).  I also found out that you truly don't have to be an "athlete" to compete; you're already a winner just by being the games.  I learned that in order to keep in touch with your new friends, it would be wise to create some sort of business card with your info (name, team, type of transplant, etc.) to hand out.  Business cards another great ice-breaker.

Some more of my pins from the 2002 Transplant Games and no, they aren't yellow from the flash; they really HAVE aged!  :-)

Later that evening, I was walking across a large parking lot to attend a social gathering when a car suddenly pulled up beside me. The couple inside explained that they were in the Transplant Games and asked where the gathering would take place.  I pointed in the direction I was going and they offered me a ride. Once I got in their car, I learned that they were from Team Northern California and their names were Ana and Rob. I discovered that Ana had received a double-lung transplant on....wait for it....June 14th!  My jaw dropped!  I'd never known anyone who'd also received their transplant on that day!  While my transplant happened in 1996, hers was in 2000 and when she and Rob found out what type of transplant I received, they were in shock and congratulated me on my success.  I blushed and modestly accepting their compliments.

During those first few years post-transplant, I tried to either hide the transplant recpient in me and pretend I was your typical 90s teenager or I'd talk all transplant at the most awkward and weird times.  While at the games, I realized I didn't have to hide the fact that I'd received a transplant and I could still showcase the "none-transplant" side of my personality as well.   I'd found my people.  Now all I needed to do was find a way to raise the money for the 2004 U.S. Transplant Games, find out where those games would take place, and what sporting event I wanted to compete in....

P.S.  I hope to have Part 2 published by this weekend.