Organ Donor--Jonathan Paul Kuzminski

Organ donor and hero!

Jonathon Paul Kuzminski was born to Paul and Crystal Kuzminski in September of 2009.  Jonathan was also the grandson of Barbara Pedone Kuzminski. On May 10, 2011, at the age of 20 months, he suffered a traumatic brain injury and passed away three days later.Throughout that difficult week in 2011, the New Jersey Sharing Network was a rock for the Kuzmenskis. Here is their website if you would like more information: NJ Sharing Network

A rose dedicated to Jonathon's memory at the Tournament of Roses Parade, Donate Life Float

His parents were brave enough to say YES to organ donation and their son's kidney saved a 16 year old girl from dialysis and his liver went to then-two-year-old Wyatt.

Since then, Wyatt and his family have met the Kumzmenskis after reached out to them, wanting to thank them for what young Jonathon did for their son. Four years later, Wyatt is still in remission and still healthy thanks to Jonathon.

****PHOTOS AND STORY USED WITH PERMISSION***

In Sickness and In Health: Part Tres

A few years ago, I wrote two blog posts regarding relationships (first one is here: In Sickness and In Health).  One of the reasons I took some lengthy breaks?  Guess who was in a relationship?  Yup, ME and it was awesome while it lasted but please notice the key phrase: while it lasted.

Unfortunately, I was dumped in March of last year and in a shitty way (long story short: bastard dumped me by unfriending me on Facebook less than a week after I'd gotten home from having gallbladder surgery and...oh yeah, a sudden move!).  On top of that, I found out a few months ago that my ex-boyfriend was also....drum roll please.....MARRIED TOO!! UGH!!  At 34 years old, he wasn't man-enough to tell me the truth!!

So.....I'm back at square one, at 35 years old.  It. Is. SO. HARD!

Still looking for Mr. Right

Not only am I a transplant recipient with quite a bit of medical baggage, I'm also your classic introvert.  In the past, whenever I would attend a social gathering, I would be coiled tighter than a snake and, unfortunately, people would mistaken my shyness (or, feeling uncomfortable) as snottiness. Thankfully, the transplant games have helped me loosen up A TON; so much so, that my transplant friends have a hard time believing that out-going Kim is really super awkward on her home turf.

I've tried dating websites (oh, where do I begin?) and have gone on the occasional date with said guy but as soon as he finds out about my transplant (either via Google or my own big mouth) he automatically assumes I'm untouchable, freezes and doesn't speak to me again. It really sucks that ,the guys I've come across, can't seem to see past that.  

I just want a caring, sweet, attractive (in my eyes), funny, smart (but not so smart that he makes me feel like a dope), family-oriented man.....who is brave enough to take me on and doesn't freak out over my scars--the physical and otherwise.

Are you brave enough to help me unpack my baggage?

Living Liver Donor--Becky Waller Bausman

IN HER WORDS:

Trying to encapsulate the story of my family’s journey with PSC and living donation in one short story is like trying to describe every wave in an ocean.  The following is just a piece of it, written from my perspective 30 months after the surgery and updated two years later. 

L-R: liver recipient, Joe and his sister, Becky, living liver donor!

This is not at all my story — it’s our story — my whole family’s.  It begins with an ache in my younger brother Joe’s abdomen in the early 1990s. From there it proceeds through a decade of worsening symptoms, invasive tests, misdiagnoses, ineffective treatments, and frustration — I’ll spare you those details — to bring us to the end of the beginning, his diagnosis of Primary Sclerosing Cholangitis, or PSC, in the early 2000s. The story moves then through Joe’s coexistence with that rare disease for a few years as it weakened his biliary ducts, wore down his resistance, yellowed his skin, emaciated him, made sleep impossible, and finally robbed him of being able to work. And then the story halts just long enough for a phone call with my parents on a lousy and overwhelming day in August 2005. 

Joe was waiting — had been waiting — on the long national transplant waiting list for a cadaveric liver donation.  He was waiting with more than 15,000 other critically ill and anxious people who needed a liver, and only about a third of them would ever get the call, due to a shortage of donor organs.  His disease, with all its cruelty, had the additionally terrible characteristic of allowing his MELD scores to stay relatively low, reducing his chance that he’d ever be high enough on the list to get a liver.   Our bright, funny, loving, and accomplished Joe, the tenacious young man who had achieved a master’s degree and his medical degree and fought through his first year of residency until forced home by his illness, was suffering and dying in front of us, and there was so little we could do.

On that phone call that day, I confirmed with Joe that there was something monumental that I could do. I could donate a portion of my liver. I knew in my heart that it should be me.  I had a clean bill of health and was single. I was financially stable and my employer was prepared to support me with time off and benefits. Above all, I wanted it. In my gut, in every cell, with urgency and passion.  
Then began the next chapter, that nerve-wracking and mettle-testing one called “Waiting.”  I had to clear the decision with my family. Our parents had to come to terms with risking the health and safety of their daughter to save their son.  Joe had to make the same decision about his sister, weighing his likelihood of getting a cadaver donor organ in time against his feelings of guilt and fear for my well-being.  And the doctors? They had quite a bit of deciding to do as well.  Was I fit and healthy enough? Was I match, and did my antigens line up well enough? Was I psychologically prepared? Was I sufficiently altruistic in my motives?  Was that gray fleck on my MRI scans a fatty liver parcel that would eliminate me from consideration, or just a blur in the image?  Everyone but me had questions. It all took time.  Six months of time, of itching and pain and anxiety and waiting.

On January 18, 2006, the waiting ended.  Surgeons Alan Koffron and Michael Abecassis wheeled Joe and me into side-by-side rooms at Northwestern Memorial Hospital  early in the morning.  Koffron inserted a scope through my belly button to cut out the larger of my two liver lobes laparoscopically — the first time that had ever been done on a living liver donor in the world — and then made a four-inch straight-line incision down my chest, which was left open just long enough for them to reach in and remove Joe’s piece.  Meanwhile, Abecassis had removed Joe’s angry and embattled organ, and began stitching my healthy tissue into its place.

Before removing part of Becky's liver

After removing part of Becky's liver!

My recovery was a blur, and in hindsight it went remarkably swiftly.  The first four days were far worse than my imagination had anticipated — more painful, more awkward, more rife with side effects like bloating and malaise and nausea, more anxiety.  But everything after that was much, much easier than I had guessed it would be.  Once I started healing, I healed quickly. (A great Mom and Dad, a Pilates-strong set of abs, and a restful three months of medical leave all contributed to that, no doubt.)  I had an MRI done about nine weeks after surgery showing that my liver had almost fully regrown to its original size. By one month out I was going on long walks, having dinner out with friends, and getting in some light exercise. By two months out I was capable of returning to work without much limitation except the occasional energy drain and some lingering soreness. After that, I was golden. Today, just the thin four-inch scar remains as bodily proof that any of it even happened. The emotional joy has never left me.

Joe’s recovery was not so smooth, not by any means.  Although he didn’t reject the organ, he had several battles with stenosis, strictures, infections, and other demons major and minor. It was nearly a year before he could return to work. Once he did, it was an ongoing fight to maintain his energy level and stay healthy, especially because he was working as a first-year medical resident.  Over time, though, the strictures and other issues faded away, and he resumed a fairly normal life.  Within months of returning to work, he decided to make a dramatic life change.  He left his residency in Chicago to take a job as a transplant procurement coordinator in the Pacific Northwest, a job that called on both his medical knowledge and his personal experience as a transplant recipient. 

On the two-year anniversary of our transplant in 2008, Joe had a minor episode of rejection for the first time.  We were all terrified.  By 2010, he needed a second transplant, this time receiving it from a high-risk cadaver donor, an ex-convict.  He made it through and is feeling healthy again. As his health returned, so did his ambitions to become a doctor. He completed medical school and his residency, and as of 2015 he’s now a practicing radiation oncologist in Kansas City. He works frequently with patients who have terminal diagnoses, and his peers and patients tell him he is wonderful with the toughest conversations about death and illness. Is it any wonder?

We will have ongoing health scares. We will experience sadness and stress and pain and joy together.  All of this, every moment, is a privilege.  We are lucky for every day, every moment, every emotion.  We are blessed to have our Joe.


***NOTE FROM KIM***

Becky, thank you ever-so-much for sharing your family's story!!  I met Becky and her family at the 2008 Transplant Games in Pittsburgh and we've since kept in touch over the years!! I hope to see the Wallers at another transplant Games in the future! 

At the 2010 U.S. Transplant Games in Madison, Wisconsin and yes, she's as adorable in person as she is in pictures. She's happily married with a six-month-old baby boy!!

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.

Brooks & Dunn - Only In America

Happy 4th of July!!

God Bless the USA

Heart Transplant Recipient, Brittney Moreno

Happy family!  Brittney, Marcos and Benjamin (who was not looking at the camera ;-) )

(In her own words)

My name is Brittney Moreno. I'm 24 years old and I was born with hypoplastic left heart syndrome. This is where the whole left side of the heart is underdeveloped. I was in need of a new heart to save my life. My doctors sent me home with my parents to let nature take its course because, here in Denver in 1990, they were not doing heart transplants. Three months later, I was still holding on to life and in need of a miracle. Loma Linda, in Southern California, was my chance. I was air lifted by Angel Flight and immediately put on the transplant list. That weekend, a heart became available but it wasn't the right size or the right blood type. I was in such dire need of a heart that we prayed for a miracle. Within hours of a successful surgery, I was already thriving. It was the first time my parents actually had seen my cheeks pink and a smile on my face. It was truly a miracle.

We later found out that my donor was a little, 20 month old toddler boy. In his parents time of grief, they thought about others and I can't thank them enough for their difficult decision that day. That decision would forever change my life.

I am now 24 and living life to the fullest. Still with that same heart that saved my life that day. Because of Danny, my donor, and his family, I was able to have a second chance at life. I met the love of my life, Marcos Moreno, and we got married September 5, 2014 and just had our little boy on April 16, 2015.

All because one family said "YES" to organ donation.

Brittney and baby Benjamin

**Note from Kim: I would love to turn this into a weekly feature.  If you're a recipient (pre or post), donor family member, or living donor, I would LOVE to feature you!  Just give me your name, how you're connected to organ transplant, and some pics!  You can either write it yourself (like Brittney has done) or ask me to phrase it.  Please submit it by Friday at 7 PM (ET).  Thanks and thank you Brittney for being my first feature!

Also, I know Brittney via the Transplant Games. She is on Team Rocky Mountain and has won numerous medals over the years!  :-D

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.

My Transplant--Part 3

Growing up in Florida was a huge blessing because I didn't grow up with the mindset of a "sick kid."  Yes, I saw a cardiologist annually (and didn't know that other kids didn't see a special heart doctor until I was 10!) and had a nebulizer (which I didn't really use until I hit my teens) and had to stop taking PE classes by 5th grade but.....it never bothered me. It never occurred to me that I was different from everyone else.

During late elementary school, something happened that my parents didn't think ever would take place: adolescence! They didn't expect me to go through the changes other girls did but behold, puberty reared its ugly head and I experienced all of the lovely things that go with becoming a woman and when I say lovely I say crappy.  ;-)

May, 1993~Last night of Youth Group and in the middle of a whipped cream fight! With our youth leader, Kevin

My teenage years had now arrived; I was awkward as hell and finishing middle school.  It was the first day of summer vacation and I was scheduled to see my cardiologist for my annual check-up. In my 14-year-old mind, I thought I would just go in, get checked and go on with my summer.

That's not what happened.

I had my usual echo cardiogram but not my usual doctor. Without the introductions barely out of the way, Dr. Edwards said to my dad and me: "I've just gone over the results of Kimberly's echo cardiogram, let's talk transplant centers!"

In my mind I screamed: "TRANSWHAT?!"  I faced my dad, hoping he'd tell me this was a joke or I'd misunderstood but the expression on his face said : 'I'm sorry Kim, but I didn't want you to find out this way'

Unfortunately, Dr. Edwards just wouldn't shut up and because of the shitty way I found out how sick I truly was, it sped up the deterioration of my health.

In December of 1994, all five of us went to St. Louis so that I could have a week long evaluation to see if I was even a candidate for a transplant. The original plan was to repair my heart and just give me lungs. After my second ever cardiac catherization, it was deemed I couldn't receive one organ without the other, that's how bad a shape my organs were in. A holey (hehe) heart and lungs worn out like leather. Because I was their first patient with Eisenmenger's Syndrome, I became their guinea pig hence why I had to go there every six months, even before my transplant.

December, 1994~Dad liked how Christmasy I looked. A week or so later, we were in St. Louis for my evaluation.

I was on the waiting list for 17 months total (two active) and that's very short for my kind of transplant. I was very lucky because the first call was the real deal (no false alarms and that's very common for lung recipients) and extremely successful (though I still felt like first-class shit when I was recovering).

That summer was wonderful because I was surrounded by other kids who understood me. Coming back to Florida (and going back to school) was hard because I just couldn't relate to the students. I felt both older AND younger at the same time. Older because of what I'd gone thru and thought everyone was superficial but also younger because they were driving and dating and I just wasn't into that (thanks to my meds, I was hormonally shut off the first few years post-transplant plus, I had no interest to drive). On top of that, I was incredibly envious because they had the luxury to be so carefree about school dances and football games and, oddly enough, I felt like I didn't deserve (or wasn't allowed) to be so happy-go-lucky.  High school just wasn't a fun time for me and now you know why.

My senior pictures. I was supposed to graduate high school in 1998 but, for obvious medical reasons, I missed a year of school.