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.