Happy New Year!!

For me, it's almost 2016. For you, the new year may have already begun. Here is some great advice for the coming year.

The above is so very true. I greatly apologize for sliding off the rails during the last quarter of 2015. I hope to be more consistent with my writing in the coming year. Here are the blog posts that are in the works for 2016: 

~Transplant and the Media-Part 2 (yes, FINALLY!) 

~Celebrity affected by transplant 

~Transplant recipient at work (what it's like to be immunosuppressed yet still out in the workplace) 

~Weekly Feature (I'd like for this to be weekly or monthly......please message me if you would like your story to be told) 

~20 Years: A Reflection (my 20th transplant anniversary will be in June of 2016....I'd like to write a post reflecting on what I've experienced and learned over these past two decades)

~2016 Transplant Games of America (you know I have to talk about this!)

~New idea: GUEST BLOGGERS!! Thiughts? If you would like to be a guest blogger, please let me know!!!

As I wrap this up, here is one more piece of advice: 

TGA2016 Promo Video1 2 24p

WOO HOO!!  A promo for the upcoming 2016 Transplant Games of America is OUT!!  I'm still blown away that this'll take place during my 20th transplant anniversary.  WOW!!!



Here is the website for more info regarding the games. Transplant Games of America

Sooooo many topics

Hi All!

I haven't dropped off the face of the earth.  I've either been sick (stupid flu shot gave me a cold--go figure!), working, or I just have soooo many blog ideas swirling in my head that I can't sit down and decide what I want to talk about.  In fact, I've now got TWO other topics I would like to discuss here.

1) The various wait list times in other countries

2) The public perception on the national waiting list here in the U.S.  Unfortunately, your average American has no idea what goes into being put on the waiting list and what entails an actual match. I'd like to go more into that and explain the finer details.

Plus, I have other things hatching in my brain.  Stay tuned!

YouTubing?

Earlier this year, I started noodling with the idea about possibly starting a YouTube channel/vlogging for two reasons:

1) To use a different form of social media to educate people about transplantation and whatnot

2) There are NO YouTube channels of any kind from a recipient and showcasing their life and what it's like on a semi-daily basis. I think it would be extremely beneficial to those out there on the waiting list, to truly give them a glimpse on what likes ahead for them.

Great idea, right? Here are the main reasons I've been hesitant:

1) I stutter/stammer up the wazoo.  People tell me I'm not as bad as I think but.....

2) I have a suuuuuuper soft voice (thanks to vocal cord paralysis)

3) I'm incredibly self-conscious OF my stammer AND soft voice.


BUT.....on the other hand.....this idea has been floating around in my head, off and on, for the past few months. I love watching other YouTubers and learning what's going on in their part of the world and I don't know if this is God's way of telling me that I should pursue something like this or if it's just a fleeting idea or what!

Thoughts? Comments?  Thank you!

Decisions decisions!

Okay, so here are the blog post ideas that are swirling in my head:

1) Transplant and the Media--Part 2: I talk about how TV and film have influenced individuals over the years about becoming registered organ donors and how certain plots have affected those already part of the transplant community.

2) Transplant and food: How taste to certain foods change post transplant, what foods are a no-no for certain organs transplanted, how the possibility of donor's food likes influences the recipient, etc.

3) Transplant process in other countries: the difference between the US and other countries that perform organ transplant; the wait, how it's done, etc.

Plus....I had two other ideas but I'm totally brain-farting on them right now. Also, I'd LOVE to bring back my "weekly feature" where I put the spotlight on someone who is either a recipient, donor family, living donor, recipient family member, or on the waiting list.  LET ME KNOW IF YOU WANT TO BE FEATURED!!

Let me know which blog post you think I should tackle first OR if you have a suggestion for a future post, please contact me!!  Thank you!!  

Happy October!!

Happy October/Autumn everyone!

I apologize for the almost-month-long hiatus.  Life got in the way.  As you can see by these pictures, Autumn is my ABSOLUTE FAVORITE SEASON!  Summer is gone (YAY!!), the weather is cool but not cold, you can wear sweaters and boots, eat grilled cheese sandwiches and tomato soup, drink hot cocoa, yummy apples, the holidays are around the corner.....sigh. Total bliss....

Anyway, I've got 5 blog posts swirling in my head.  I'll post them/break them down in a blog in a moment, okay?

Thanks for hanging in there!  

Kim  :-)

14 years ago.....

To commemorate the attacks on American soil that took place 14 years ago today....

Where Were You When The World Stopped Turning~Alan Jackson

A beautiful and touching tribute to those affected by September 11th.

Transplant and the Media--Part 1

Things I love: stories in the media that get people talking about organ donation and transplant.

Things I hate: WHEN THE MEDIA TWISTS THESE STORIES AND MANIPULATES THE PUBLIC!!!

Sigh.  Where do I begin?

Controlling the way the public views transplantation, one story at a time....

Back in 2013, two stories came out regarding two young people (one, an 11 year old girl and the other, a 15-year old boy) who were on the transplant waiting list waiting for lungs and a heart, respectively.  The way that both stories were presented, it made the hospital and/or transplant team look the "bad guys" and the oh-so-innocent families seem like perfect angels (notice sarcasm).

At one point, one of the families pressured the Secretary of the United States Health and Human Services to change the lung transplant law and even she decided not to intervene and not bend the 12-and-under rules. (FYI: the rule is that children 12-and-under cannot receive a LAS (Lung Allocation Score) and are ineligible to be on the adult lung transplant waiting list).

Eventually, a judge came in and briefly changed the law so that the girl could (hopefully) receive adult lungs. She did but almost immediately, there were complications and 72 hours later, she received her second lung transplant, and again, those lungs came from an adult donor.

When she was six months post transplant, articles were published describing how well she was doing but......I've been in that girl's shoes and it was clear that she wasn't doing well.  It bothered me that the media made it seem like she'd made a miraculous recovery when it was clear, to me, she was still struggling. Even now, when the rare story comes out, it's clear that her recovery has been unusually difficult and it makes me sad that she's paraded out.

Things that make you go "hmmm....."

The other story is a bit different.

The way it was portrayed: 15 year old boy needs heart transplant and transplant center turns him down!  BOO!!  They're so mean!!  How could they?!

The reality: 15 year old boy, who already received one heart transplant, has an ankle bracelet and own mother admits she can't take him to his doctor appointments, needs a heart transplant and transplant center turns him down because they know it would be a waste of an organ. IMO, the transplant center wasn't being "mean".....they were doing their job but the media did NOT tell the public the little details I put in bold. How convenient, huh?  **rolls eyes**

After outcry and pressure from the media and public, the hospital reversed their decision and the boy got his transplant.  "YAY" right?  Nope. On April 1, 2015, after a botched robbery, the boy stole an elderly woman's car, crashed and died.

I shit you not. Not even two years after his second heart transplant and the gift is destroyed. Ridiculous....

Sadly, this is so very true....

Yes, I know that there ARE positive stories out there regarding transplantation but, unfortunately, the ones that get the most attention are the ones that are spun a certain way and it frustrates the daylights out of me!!
Sigh....

To end this post on a high note, here is a positive story regarding organ donation:

http://abcnews.go.com/US/ravens-player-maake-kemoeatu-donates-kidney-brother-chris/story?id=25598572

Almost one year ago, this news link was "Liked" 1,000 times and shared 236 times; and on ESPN's news link, it was shared 313k times on Facebook. Now it's stories like that that I would like to see more often!!!


(Part 2 will be regarding transplant on television and on film....I already have some ideas at how I want to write it.)

Organ Donor--Ciaran Martin/Ciaran's Gift

Organ Donor Ciaran Martin passed away on January 5, 2014 after being hit by a car.

Below is a letter written by his mother, Jacquie

Ciaran's Gift
The shock...
of being told that I will never see, touch, smell, hear or hold you again.
The fear...
of living without you.
The grief...
that overtakes my heart, my mind, my soul, my spirit and my body.
The reality...
that you are not just gone, that you are dead!
The regret...
that we never made it to that meditation retreat or learned yoga together, like I promised.
You died too soon.
Your passion...
when we argued, you refused to concede because in truth? You were usually right, but in parenting, my job was to guide you and I did...the best way I knew how and I wouldn't change a thing. 
Your love...
in EVERYTHING...
the world, the universe, the creatures, mankind...every shape colour and size (you could never understand why others at times had differing/negative views)
Your art and drawing...
which literally took my breath away. 
Your love and talent with music and drums...
which left myself and many speechless so often. You made music with everything.
(Spoons, cups, boxes, dashboards, chairs etc)
Then there is the emptiness...
The emptiness that is left after I carried you inside of me for 9 months, gave birth to you, watched you learn to walk, to talk, to build with your mind and your fingers. We shared digging in the dirt for creatures and saving worms, like when I was your age. 
Then the glee...
in watching you learn to live and love the wonder of life, all the while knowing that I created you and could share in that again and again and again .... Always... 
NEVER AGAIN!
The anger...
that you were on that road that day and 
the rage...
that the driver was there at that same time.
The guilt...
Of not being there to save you.
The abandonment...
of being left, left to carry on your dreams, your hopes and your desires, even some of your friendships... Because you're gone and the sheer 
HONOUR...
of being left to do these things because you can't.
The joy...
in feeling your hugs and watching your eyes meet mine in your delight, as I finally understood a quantum physics theory, you had explained to me for oh so long.
The shared passion of road trips... 
You, Climbing into the passenger seat, iPhone in one hand aux cord in the other, Abby in your lap knowing that I would be your sole audience for the duration, knowing in my heart that our hearts connected. 
The disappointment...
when I'm in the dairy aisle and I know I don't need cheese.
The heartbreak...
when I see a scruffy, but content in his own skin (maybe 16 yr old) boy, with long hair and a toque and I want to run to him, to wrap my arms around him and then STOP!
The brokenness...
once again when I learn (almost immediately that it isn't you)
The pride...when I think of those people living everyday with parts of you inside of them. Their gift from you, a stranger to them. 
They're breathing, discovering, learning, loving and living because you gave, you gave so valiantly of yourself and you were always so humble, you didn't even know the power of that decision...
because your recipients' so graciously accepted your gift and nurtured it and loved it ...now your gift to them has become my gift from you and them. I'm both honoured...
and thankful...knowing that someone is still loving you, nurturing you and cradling you, just as I did. And whether they have that gift for a short time (as I had you) or a long time... The gift is no less precious or valuable, as you'll never be any less, because I only had you for 16 years. You're a giver my boy, my giver and I will live in awe of you, in memory of you, in love with everything about you, and will continue to be every minute of every day for the rest of my life. My boy, my lament, my hero, my love.
Love, Mama xo

Handsome young man, taken much too soon, gave the gift of life.

**PHOTOS AND LETTER USED WITH PERMISSION**

Dear Donor Family....

Published in newspapers across the country on June 11, 1996

Over the years, I've attempted contact with my donor family: twice via a letter and once via a card.  I've never received a response but I've always held onto the hope and belief that I'll hear from them and possibly meet them one day.  For now, here's a made-up letter for them that I'm making public...with words I want to say to them, especially things that I'm not allowed to for legal reasons. 

Dear Donor Family,

Almost 20 years, you went through the most difficult experience any human could go through, the loss of a loved one.  Though I can't lessen the pain nor bring her back, I hope you know what your gift has done for my family and me over the years.

I know I've already tried writing to you twice and, for unknown reasons, there has been no reply back. I just wanted to let you know that I'm grateful for now having pink lips, for the ability to walk around all over town without short of breath (unless it's summertime here in Florida), the chance to work for the state government, that I can be a "mom" to my four-legged, Cairn Terrier Mix dog Missy,  to be actively involved within the transplant community and to make an impact and to change the public's perception regarding organ donation. 

But most of all, I hope you know that there isn't a day that goes by that I don't think about your daughter and your family. I pray that, someday, we'll be able to meet face-to-face.

Much Love and Gratitude,

Kimberly Jacques

June 14, 1996

heart/double lung transplant

Transplanted at St. Louis Children's Hospital

Organs were picked up from St. Charles, IL

Transplant Funnies

Enjoy!! 

Great photo for National Donate Life month in April!

Good point, Kermit!

Yes, why not share?

Awwww.....how sweet!!!

Just Like A Pill

Yup, I'm quoting a totally awesome song by Pink for my blog post.

For almost 20 years (aka: more than half my life) I've taken or still take the following anti-rejection or prescribed drugs:

Cyclosporine~anti-rejection, no longer on it, took it for almost 10 years
Imuran~anti-rejection, no longer on it, took it for almost 10 years and was briefly on it last year while recovering from surgery
Prograf~anti-rejection, been on it for just over 9 years
Prednisone~anti-rejection, forever on it hahaha!
Rapamune~anti-rejection, been on it for just over 9 years except for that brief moment when I was back on Imuran
Enalapril~for blood pressure, no longer on it (YAY!!)
Mag-Ox~on it the first few years post-transplant, then taken off, then put back on for almost two years, for low magnesium
Septra/Bactrim~forever on it, to prevent UTIs and infections
Tricor~since....I can't remember, for my Triglycerides because I do enjoy food (no, I'm not a pig but I do enjoy my meals)
Pravachol/Pravastatin~ also for Triglycerides because my numbers can be kinda funky sometimes
Protonix/Pantoprazole~ YAY FOR HAVING ACID REFLUX!!! How many of you are surprised that I have developed this over time?

**crickets chirping quite loudly**

Nobody?  Alrighty then! Onto the rest of the medicine list!

NPH~Insulin that I have to inject (usually my belly) before breakfast and it gives me a MAJOR case of the munchies, like I'm back on a high dose of Prednisone.  WOW does it drive me bonkers sometimes.
NovaLog~Insulin that I inject before lunch. I have to give myself a small dose to keep my blood sugar levels in check.

Out of ALL of these drugs, the ONLY one that hasn't given me a weird reaction (either physical or internal or something else) is Septra/Bactrim.

The one who's given me THE WORST side affects?  PREDNISONE!!

The above image is funny but oh-so-true. I remember when I was still in the hospital  out of the ICU, but still recovering in a room. I had horrendous paranoia and insomnia--lousy combo for someone who has always had an over-active imagination. I wouldn't fall asleep until 2 or 3 in the morning because I saw a skeleton in the corner of my room!!  And to add insult to injury, every few hours a nurse would come for this, that or the other thing. Heck, even now I sleep poorly!!

Another "lovely" side affect from Prednisone is the infamous "moon face".....here are some pictures pre transplant and about a month post-transplant to illustrate my point.

March, 1996~roughly three months pre-transplant.

July, 1996~not even a month post-transplant and I've already got the Prednisone moon face

Thankfully, the doctors tapered the dosage and soon, I went back to being "new normal" Kimmy. Unfortunately, in 2006 (three months shy of my 10-year anniversary), I was diagnosed with rejection and to fight it, the doctors blasted my body with steroids.  Unfortunately, I developed steroid-induced diabetes that wasn't diagnosed until two years later (I think I have a blog post around here mentioning my diabetes...once I find it, I'll link it). 

In January of 2009, I started a nighttime insulin called Lantus. Unfortunately, within six months, my endocrinologist and I discovered that that medicine wasn't working so after a bit of a switch up, we eventually learned what type of insulin works best for me. 

Now, onto another medicine or rather, two meds at once: Cyclosporine vs Prograf! 

Cyclosporine: totally stinks (literally!) BUT one awesome advantage for me was......super curly hair! Growing up, my hair was straight and thin and suddenly, it was thick and curly. The thickness was a pain (as was the access hair growth!) but having curls (like my sisters) was awesome! After being on it for nearly a decade, I had to stop taking it because of the fact that I was now immune to it! (Note: I know there is a picture around here of me with curly hair. I'll find it and upload.)

Prograf: Oh how do I loathe thee? Let me count the ways.... The plus side, is, of course, by the time I experienced rejection, a drug was available for me to take so that my doctors didn't have to scramble around. The downside? Hair loss was the main physical side affect from taking this medicine and while it seems vain, please understand that I went from thick, curly, healthy hair to having to wear wigs due to the severity of the loss of hair on my head. 

While I've been doing a lot of venting (and I mean every word of it), please know I'm eternally grateful to those who created these crazy drugs that've kept my friends and me alive! 

So very true!!

21 Things

21 Things People Don't Tell You About Transplant Surgery

I respectfully disagree with #8 but everything else is true. 😊

Organ Donor--Carrie Boswell

Yeah, I Know I took a brief break.  I was out of town last weekend and only just got a story submission.

Instead of pictures, I have an actual video clip!!

Organ Donor Saves Three Lives

After her untimely death, Carrie Boswell saved three lives through organ donation. I've gotten to know Dave via social media and he's the sweetest, friendliest guy around and I'm so glad I've had the opportunity to "meet" this donor dad!!



***Story and video link used with permission via Carrie's father, Dave Boswell***

**note to recipient Debbie Thompson: If you would like, I would be more than happy to showcase your side of the transplant story as well.  What led you to needing transplant, knowing your donor family, etc.** 

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.