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.

My Transplant--Part 2

I was diagnosed in July of 1982 and my doctors told my parents that *if* I lived long enough, I *might* be able to receive this operation that was still in its infancy stages that could repair or even replace my damaged heart and lungs. An operation called a heart lung transplant. It was during that time that I was taken off of oxygen because it wasn't helping me (note: my mom remembers me fighting when they were trying to take the o2 off because in my toddler mind, being on oxygen all the time was normal).  

18-months-old and still on oxygen

By the time I was 3 years old, my health was stable enough when my folks started thinking about giving me a brother or sister and by the end of 1983, Mel was a month old and I was a very protective big sister (note: she was the only one who was full term weighing a whopping 9 lbs, 2 oz).

In 1984, I started the year in Boston but ended it in Temple Terrace. Since the winters were so harsh for me, the folks decided to move us all to Florida, thinking the warmer weather would help slow down the deterioration of my health. It did.

Mel and I posing in front of our new house!

Last week of Kindergarten!

Six months after moving to Florida, we moved to a small town called Lutz (rhymes with "fruits") that's within Tampa's city limits. Because of the timing of our move, I was able to have a fairly normal childhood. I went to school, grew up in a great neighborhood with many kids my age, was active in the Girl Scouts, learned how to beat Super Mario Bros in our Nintendo, made the Honor Roll, tormented Melissa, gained another sister and tormented her, etc.

My 8th birthday party.  If the ceiling fan had been turned on, it would've been pandemonium.

First Communion!

About to march in the Gasparilla Parade!

Also, in elementary school, I was constantly teased and bullied over (among other things) my right thumb and the way it looked. I didn't know it then now I understand what was wrong: I was born with something called Poland's Syndrome. In layman's terms, on the 46th day in the womb, the blood flow was cut off between my mother and me (and, more specifically, to my pectoral muscles) and that is why I was born without a knuckle on my right hand thumb, without a couple of ribs in my right side, born with scoliosis (curved spine, one of the main reasons other transplant facilities didn't want to touch me), and why my chest is uneven (which lead to me being sexually harassed in the 5th grade at Maniscalco).

left hand with two knuckles on my thumb

right hand with one knuckle on my thumb

With all that being said, I'm so grateful to my many school and neighborhood friends for giving me a great childhood and not treating me differently just because I had purple lips and couldn't run that fast. I'll never forget it.

My 8th birthday party.  I'm in the middle wearing the green dress and sweater and I'm still friends with Joe, Carrie, Jennifer and Dominica.

My Transplant--Part 1

I just realized I never gave my own story.....in what led me to needing my transplant soooo.......here it is!

I was born at 29w, 2d gestation. It wasn't my fault or my parents faults, stuff just happens. I weighed a tiny 2 lbs, 3 oz but I lost that weight and it took me FOREVER to put it back on.

Itty bitty Kimmy

So tiny

Because of my early arrival, I was born with a multitude of health problems; primarily in my heart and lungs region. Here's the catch: while it was obvious that my lungs were very underdeveloped, it didn't even occur to my doctors that there *might* be something wrong with my heart (remember: it was, literally, late 70s/early 80s thinking when I was born).

I was in the hospital for almost eight months (1/3/80-8/27/80) and would've stayed in there longer if it hadn't been for my mom (she asked the doctor point blank: "what do you have here that we can't bring back with us?" Like any new parent, she wanted her baby home).

As you might imagine, because of my premature birth, I learned how to do many things late; walk, talk, etc.  It's not that I was an idiot, I truly was developmentally delayed. The average five month old baby is held, played with, spoken to, etc but my folks never did that with me and it's not that they didn't want to--they couldn't! I was too busy fighting for my own damn life!

In August of 1980, I was FINALLY released from the hospital but on oxygen 24/7 and needing constant care. As you might imagine, your average almost eight month old was hitting all of the regular baby milestones while I was still at the starting gate. When I was two and a half years old, I was walking, starting to talk, and being a very observant toddler but....I was also still on oxygen around the clock.

Beach baby and on oxygen

My doctors were surprised that my stats/oxygen percentage weren't wasn't as high as expected (considering how much o2 I was on) so I had my first cardiac catherization and that's when it was discovered I had numerous holes in my heart. Holes that were inoperable. I was diagnosed with Eisenmenger's Syndrome. In layman's terms, every time my heart would beat, the oxygenated blood and deoxygenated blood would intertwine, flow and wind up in my already crappy lungs.

She's baaaaack.....

Hi Everyone!

I'm BACK!!  I apologize for taking such a long break!  As you can see, I'm not dead (yay!!).

I've got A LOT of ideas cooking in my mind; not just for this blog but for other things as well, but I can't talk about them.

Thank you ever so much for sticking with me!!