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!!

Maybe Baby

No, I'm not but it does bring up an idea for a blog post.

I've been reading friends' statuses or their comments in message forums and I just wanted to say thank you!  Many times, people (doctors, others in the medical field) are STUNNED when we female recipients bring up the desire to have a child of our own.  They go, "you WANT to have a biological child?!"

They just assume that because of what we went thru, our urge to have children must automatically go away. Um.....that's not exactly how it works.

You can ask my sisters, I've ALWAYS been a "mini-mom" and I started babysitting since I was 11 years old.  Heck, around my dog I refer to myself as "mama" or "mommy"--hello?!  Could I make myself any more clearer?

While I haven't seen the specialist around here just yet, I'm almost positive that bearing children, who will carry my DNA, is nearly impossible due to all the crapolita my body and I have been through plus, the drugs that I'm on doesn't help.  Does it make me sad?  Yes!  Does it provoke a twinge of jealousy whenever a friend becomes pregnant with their X child?  Absolutely.

(And for those who are reading this, yes, I *do* have moments like that but as long as you're not being abusive and cherish each child, I won't become crazy psycho jealous.)

I happen to have two cousins who happen to be adopted (in fact, one is turning 16 today! YIKES!). Do I see them as my *adopted* cousins? NO!!!  They're my cousins who happen to have different biological mothers and have slightly different bent branches in my family tree.  They're STILL family, just coming into our lives in another way.

I'm not an idiot and know I'm not any younger.  If I'm called to adopt, I understand and I'm all for it!  Who wants my short stature DNA anyway?  ;-)

So yes, I still 'pin' ideas in my 'when I'm a mommy...' board in Pintrest an still hope that I earn the title of  "mother" and will be able to leave a legacy in my child(ren) some day.  Hopefully, 'maybe baby' will become 'hello baby!'   :-)

What is courage?

 

 

According to Merriam-Webster Dictonary online, this is the definition of the word "courage."

cour·age

noun \ˈkər-ij, ˈkə-rij\

Definition of COURAGE

: mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty.

 

 

 

Over the years, I've had MANY people tell me that I'm so couragous and brave because of what I've gone thru.  While I'm flattered, I'm always taken aback.  On the one hand, I see their point.  Yes, I've been able to persevere and do insanely well over the years but then I think, I'm not brave! That praise belongs to my donor family. They were the ones who said 'yes' when they could've easily said no. 

 

I'm flattered by the comments but.....all I'm trying to do is to remind people that, once upon a time, there was a little girl who lived on this Earth.  She had a family that loved her, friends and all of that but sadly, she was taken away from her loved ones much too soon in a cruel way.  I'm just trying to remind people that through me, a part of my donor is still very much alive , I'm busting my patootie to make sure her death was not in vain and that there was a purpose to her existence. I wish people would consider that when they hear my story. 

 

 

(Just something I wanted to get off my chest.) 





Survey Time!

I'm conducing a survey (see left side) of what transplant topic my readers would like for me to tackle next.  If you have a totally different idea than the suggestions I made, please leave your comments here.  Thanks!