Ober Oberata — “It is done in the doing.”

Alive Again: Celebrating 2 Years of Life, Post-Transplant

I’ve been away from the blog for a while, so apologies to my ones of readers who are, no doubt, scratching their heads and asking, “Who is this “Oberata” and who subscribed me to a stupid blog?”

Regardless, as I approach the 2-year milestone for having had my life-saving kidney transplant, I wanted to give you a good report of my life goings-on, which are the direct-result of receiving the gift of life.  I also wanted to say another epic thank-you to the heroes in the story.

When I tell people about my kidney transplant experience, I make sure to tell them the blunt truth about the year leading up to it: “I was dying.”

But as you might hope, two years later, I’m alive and well.  Since that fateful day on 12/6/11, I have thrived, and it’s all because of some beautiful, selfless people I can hardly repay.

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Here’s my donor, Laura Horelica, and I during the moments leading up to the surgery.  I never, ever saw any fear, hesitation, or doubt in her.  Always laughing and smiling, she told me, “I always knew I’d do something like this!”  She sounded as if she were about to go bungee-jumping.

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Here we have my ‘actual’ donor, Nadia, and her sister, Susan, who received Laura’s kidney.  The swap was done in order to maximize the results for the patients.  Nadia was a better match for me, and Laura was better for Susan.  You can not understand how awesome and beautiful these people are.  So loving and caring and understanding and cool and amazing.  OK, I’m gushing, but come ON.  We’re talking about REMOVING PERFECTLY HEALTHY KIDNEYS FROM THEIR BODIES.

YES, I am alive, alive, alive! The last two years?  Amazing.  Here’s proof:

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I’m teaching high school Spanish full time.  What a blast.  ¡Es fantástico!

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I’m also about to start my 3rd year teaching the varsity tennis team.  Does it get any better?

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I am also feeling well enough to play tennis, and usually get out about twice a week.  Here’s my doubles partner, Tyler Hamel, and I last November.  We won a doubles tournament at our local club, and advanced to Colorado Springs for the 2nd level of the event.  Awesome stuff!

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I went to the US OPEN!!!! Last year, Colleen and I were treated by my mother to these ridiculous court-side seats.  Colleen took the picture from her seat. . . it was right there!  I could have high-fived Djokovic when he came in.  NYC was great.

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I get to enjoy stuff like this!!!

IMG_0574 And this . . . 15 pounder!

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I get to see Josh win district!!

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Did I mention I get to see these munchkins off to another first day of school?

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OH, and most importantly, I get to enjoy life with my beautiful Colleen.  In case my doctors are seeing this, that’s a non-alcoholic Corona.

Speaking of docs, my amazing and comical hematologist  told me recently that, in her circle of medical professionals, they never say, “X patient has died.”  It’s too coarse, I suppose, or maybe too morbid for daily repetition.  She said that, instead, they say, “Mrs. Wilson went to Chicago.” 

Guys, I am NOT going to Chicago.  I am alive, I am here, and I’m fortunate enough to be embracing life and doing what I enjoy.  So if you’re down, or hurt, or suffering for any reason, maybe this can give you a bit of hope, comfort, joy, or strength.

Thanks to all of my loved ones and friends.  Thank you Laura and Nadia.  Onward we go . . .

Doomed

I’m not much of a poetry guy, but my fledgling-poet mom inked some brilliant verse recently.  Inspired by the tree-wrecking drought of 2001, in which Kingwood was hit especially hard, this beautiful poem emerged.   – JT

DOOMED by Patricia Timpanaro

I hoped to live longer

But it was not to be

A woodcutter came by

And put a number on me.

 

At first I was puzzled

What’s a red number for

I do not like labels

It hurt me to the core.

 

I admit I’ve gotten thirsty

In the past year’s drought

My future’s in a fireplace

Of this there is no doubt.

 

I’ve shaded many kids

On their way to school

My large leafy branches

Helped to keep them cool.

 

Around me a yellow ribbon tied

But I didn’t mind at all

It was in memory of a soldier

So I stood proud and tall.

 

Squirrels used to tickle me

As they scampered up my sides

Nesting birds’ songs rang out

Praise to the Lord, they cried.

 

From my highest reaches

Mothers taught their young to fly

I always held my breath

As fledglings soared towards the sky.

 

At night I often gazed

At the stars and sky above

And thought of how our Lord

Had created us with love.

 

Now I’m dead and numbered

The greenbelt won’t be the same

I ask you just to remember

Me and my last name.  Tree #95

14 Insane Valentines by my 2nd grader

Of course he’s nuts.  He’s my kid.

Nonetheless, he still gets to go to school.  So, in early elementary, the kids make Valentines for each other.  Usually moms and dads buy cutesy, pre-fab cards and have their kids scribble their names upon them.  Not my Guthrie.  No, Guthrie, the whacked out book maker, treasures February 14th as a demonstration of the wildest non-Cupid-esque designs ever.  They made me laugh, and they made me a little scared.

These are being delivered to 26 kids as I type this. The first image below looks innocent enough.  The first page of several contain an actual heart, names, etc.  But the spiral is definitely crack-ward from there.  Come along and see.

These days, what says, “BE MINE” more than a carbonated Lymon bath?

Spike’s Peak bouncing.  Very popular February activity in Colorado, I hear.

What a cool Valentine, having the 1st letter of your name torched ablaze by a flame-breathing gecko.  On a ladder.

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Kidney Transplant – By The Numbers

10 . . . years since Lupus diagnosis.

2 . . . years since heart surgery (single bypass) due to Lupus complications, atherosclerosis.

1.5. . . years since my nephrologist said, “It’s time to find a kidney donor.”

42 . . . days since the kidney transplant.

5 . . . average number of days a kidney transplant patient stays at the hospital.

16 . . . days I spent at Methodist Hospital.

>15 . . . . doctors, including 5 nephrologists, a hematologist, an endocrinologist, 2 surgeons, 3 internists, 1 physical therapist, 1 nutritionist, 3 pharmacists, and probably several more I can’t remember.

60 . . . percent . . . damage my new kidney took because my APLA (blood-clotting disorder) went berserk post transplant.  While it’s impossible to determine how long a transplanted kidney will last, it is highly likely that its longevity has been compromised.

30,000 . . . U.S. dollars . . . per dose of Soliris (Euclizamab), a rare drug used to treat my ultra-rare condition.

16 . . . infusions I will receive of this drug.

17 . . . prescription medications I was taking when I returned home from the hospital.

419,528 . . . U.S. dollars . . . for my surgery and hospital stay.  Number does not include my donor’s surgery and hospital stay.  Aetna, O, Aetna, please come through!

3 . . . kidneys in my body.  Just one is working though!

10-15 . . . years . . . average lifespan of a transplanted kidney.

75 . . . years I HOPE my new kidney will last.

3 . . . lifetime friends I have gained . . . my friend and “swap” donor, Laura Horelica, my donor Nadia Salameh, and the other recipient, Susan Mashni.  Wonderful, amazing people all.

 

 

 

 

 

 

A Thank You To My Kidney Donor(s) & Others

What’s kidney failure like?

Depressing answer.  Yet, I’ve been wanting to properly thank the people involved in rescuing me from it, so I felt like I should answer the question.

(deletes two paragraphs) No, I will leave it to your imagination.  It roils me to have written about this calamity so many times.  Kicking up the dust with writing somehow keeps the disease alive, if only mentally.  If you’re really interested in details you can scour my blog archives.  Summary:  it blows (kidney failure, not my blog archives).

Instead – casting Eeyore aside –  I really wanted this to be upbeat and full of hope, because I’m being given a new lease on life.  Being hopeful, I must note, takes an effort.  I wish it didn’t, because I realize the amazing good fortune I have, but when you’ve been down and kicked for so long, you wonder when things will turn around.  It’s not been fun to be in a situation where hope is dangerous . . . and it hasn’t just been the vile disease process, but also the ups and downs of the kidney transplant screening process.  And it’s been the oh-so-fun dialysis in the meantime!

SHIT there I go again.  Back to the hope and the thankfulness!

There’s a host of people I should thank, but the donors are foremost in my heart.  It’s “donors” because there are two people giving up a kidney for me.  Since my donor, Laura, wasn’t an entirely perfect match for me, she’ll be donating to another person needing a kidney, while I will receive one from that person’s donor.  This way, kidney “life” will be optimized for everyone.

Thank you, Laura.  And thank you, Susan.  You are both love in action.  You are heroes and great role models.  You are inspiration to live a great life.  You are saviors.

Laura, you’ve been SO UPBEAT throughout.  I know it’s your personality but you must have not known upfront that the screening process would take forever.  I was careful to NOT tell you so you’d stay, but I know you would have anyway.  You did, and I thank you for your infectious joy in doing this harrowing thing.

I also must thank those who went through screening and didn’t pass.  Mom, Sheri, Lauren, and yes, even you, Jody, even though your silent desertion caused anguish and tribulation.  Your heart was in the right place.  Thanks also to all those who had wanted to be screened – Kristy, Amber, Amber, Wendy, Lori, Jessica, Ellen, Linda, Sue, Rebecca, JB, Danelle, and everyone else I’ve forgotten.  Screw that saying about good intentions.  I was impassioned by your intentions.

By now at the awards show, they’d be cueing up the music.  But I must also thank my family and friends.  I said in an earlier post that I have an embarrassment of riches in this category, and it’s true.  Thank you, everyone, for the support – the meals, the text messages and emails, the cards, the hospital visits, the blog comments, the re-tweets, and the love.

Thanks to Laura’s family, and to the family of my donor.  Your support of all of us . . . it means everything.

For all the dialysis nurses, you were angelic visitors in my crummy world.  Thank you.

Mom, thanks for setting your life aside for us for the last several years.  You’re amazing.

Finally – and I’m tearing up here – to my devoted wife, my everything . . . you have stood by me to hell and back.  I love you more than anything in this world.

As of this writing, it’s 13 days until the transplant.  As we move closer, my hope increases, and it’s all because of you.  Thanks – JT