Life & Death--Part 2

As I mentioned in a previous blog (Transplant Games--Part 1) I met Anabel (Ana) Stenzel at the 2002 Transplant Games and we quickly became friends.  Two years later, I learned (the hard way) that Ana had an identical twin sister named Isabel (Isa) Stenzel Byrnes.  Since then, I've gotten to know the girls and learned that they both have Cystic Fibrosis, both received double lung transplants (in fact, Ana got re-transplanted in July of 2007) and both of their parents are from foreign countries (their mom is from Japan and their father's native country is Germany).

They also wrote a book called The Power of Two: A Twin Triumph over Cystic Fibrosis--a great read, in my opinion, that chronicles the girls lives and what lead to transplant. Lastly, Ana and Isa starred in a documentary film of the same name (The Power of Two Movie) explaining their lives with CF and transplant and also showcasing the transplant system in their mother's native country, which is drastically different from ours. These women helped change the transplant law in Japan!

Ana was always an amazing athlete at the games, both in the swimming pool and on the field. She won numerous awards at various games and via the CF community. Sadly, in 2011, she was diagnosed with CF-related small bowel cancer and, like always, fought very very hard but, unfortunately, less than a year before the 2014 Transplant Games, the transplant and cystic fibrosis communities lost an amazing woman who didn't let her CF, transplants OR cancer slow her down. She passed away on September 22, 2013 at the age of 41.

L-R: Isa, Ana and me at the 2008 U.S. Transplant Games in Pittsburgh, PA. Ana was nearly 1 year post re-transplant!! 

L-R: Ana and Isa at the 2012 Transplant Games of America in Grand Rapids, MI! They ended their speech with, "Live as if your donor is watching." by fellow lung recipient, Dottie Lessard!

At the 2010 Games, in Madison, Wisconsin, I was at the pre-opening ceremony dinner social. I was walking around, reuniting with old friends and making new ones.  I was minding my own business when, out of nowhere, someone came at me with the biggest hug and, though in my life for a short time, would make quite an impact.  Someone named Stephanie Wetzel from Team Illinois.

Stephanie received a life-saving kidney transplant via her brother in 2000 but, by the time I met her, she was now on dialysis waiting for her second kidney. We were at the same hotel  and, during the next few days, I learned why one of my closest transplant friends (Jennifer Klouse) considered Stephanie to be one of her closest transplant friends. Stephanie was sweet, funny, caring, upbeat, positive....just an all-around awesome person! 

Towards the end of the games, we exchanged numbers and addresses. A few weeks after Madison, I went to my very first nephrologist appointment (thanks to being on so many drugs for so many years, my kidneys had started to go kaput on me) and I was nervous so, being the sweetheart that she was, Stephanie sent me a card with hand-written words of encouragement. That was so thoughtful and meant the world to me!

On December 31, 2010, she received "The Call" and underwent her second kidney transplant on January 1, 2011 (yes, 1/1/11). Unfortunately, there were complications from the start and though she fought tooth and nail (like all of us within the transplant community) I received a phone call in the middle of the night, right around midnight of April 21, 2013, of a crying Jen telling me that our beloved Stephanie had passed away an hour before, passing away on April 20th at the age of 40.

July, 2010: meeting Stephanie for the first time yet acting as if we'd been best buds for YEARS!!

Though each of my friends' deaths scare me, they also motivate me.  After my donor and donor family, THEY are the reason why I keep pushing, keep me moving; they remind me that while they're no longer here, I sure as heck am and will continue spreading organ donation awareness as long as there's breath in my body.

Life & Death--Part 1

Jennifer, Jessica, Blair, Amanda, Tim W., Chad, Erik, Meghann (not even a year post transplant), Katie K.-S., Megan H. (Team IL), Stephanie W. (also Team IL) and Ana S. (from Team NorCal)

I'm only 35 and I know too many people who have died young.  Jennifer was the first one to go from my St. Louis group of 1996.  She was 18 months post lung transplant and died on Erik's (yes, the same person mentioned above...I'll get to him later) 1 year anniversary.  It was Saturday, September 6, 1997, the same day as Diana, Princess of Wales' funeral (hence why I remember the date) and I remember talking to Erik's mom on the phone.  We were discussing the sudden deaths of Diana and Mother Teresa.  Right before ending the conversation with Deon, my big mouth had to say, "First Princess Diana, now Mother Teresa.  Who's next?" and hung up.  Before I could remove my hand from the phone after putting it down, it rang.  It was Jennifer's mom, Jane, telling us that their daughter had died only 30 minutes earlier.  It took me a long time to not feel guilty over my oddly-timed statement.

March, 1997~ Top: Mom & Jennifer, bottom: me and Jennifer's mom, Jane.

As I mentioned in a previous blog post (Transplant Games--Part 1), I lost track of my St. Louis friends but over the years learned of the passings of Amanda, Tim and Chad via the internet.  Erik's was different.  He and I were the only heart/double lung recipients of 1996 at St. Louis Children's Hospital.  We were one of the few who didn't/don't have CF, so our families very much stayed in touch over the years, even after we stopped going to St. Louis.  I always received the "Weekly Wentzel" via my e-mail so, over time, I learned that Erik was not doing well.  I knew he received a living donor lung transplant (via his dad and cousin) in 2004 but still wasn't doing well and was hospitalized often. 

December, 2001~Erik and me.  This would be the last time I would see him alive.

In April of 2007 Erik was hospitalized (again) and was planning his own funeral.  Even then, he was able to be funny (he wanted to be tossed into the ground in a sack!) though the morning of his death, I was still devastated. 

The way I learned of Katie K.'s passing was a bit unusual.  She and I stayed in touch over the years via e-mail, AOL messenger, MySpace and then Facebook.  In fact, it's through her that I got in touch with the other Katie from our group.  For three years, us three (who were transplanted within days of each other) were the only ones left from our group.  

September 10, 1996~L-R: Katie J from Rhode Island, Katie K from Illinois and me. It was a triple going away party for the three of us.  For three years (April, 2007-May, 2010) the three of us were the only ones left from our group

I would go on Katie K's Facebook page occasionally. I was able to see her wedding photos and  over time, see for myself as to how she was doing. I found out she'd died when I saw that a friend of hers left a message on her page saying that they'd miss her.  WHAT?!?!?!  I was stunned!  I went to her page, hoping I'd misinterpreted.  Sadly, I hadn't.  She had passed away just hours earlier.  I felt like someone had knocked the wind out of me.  I sent a private message to Katie J (so that she wouldn't find out the way I had) and when I made reference to it (which was only days after Meghann's death) she made a comment that she and I were the only ones left.  That left me scared..... 

July, 1996~a month post-transplant for the both of us!  Katie K and me

June, 2001~In Chicago, visiting Katie K. while celebrating her 5 year post-transplant lungiversary! A close-up of her sweet face.