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. 😊