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 2011, 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

Valentine's Cards

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.

Continue reading 14 Insane Valentines by my 2nd grader

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

 

 

 

Just Call Me Jumpy: Dealing With Chronic Jumpinness

So I’m sitting in my bathtub at 5:43 a.m. . . .Wait.  I guess I should first explain why I was in the BATHTUB.

No, the tub wasn’t full of ice and I hadn’t had my kidney stolen by Black Market organ thieves (how f**ing ironic that would be).  Actually, I was in the tub because I’ve had lupus for 10 years which begat kidney failure which begat the need for dialysis which begat a jugular catheter which can’t get wet in a shower.  Hence, the bath.

So I’m sitting there enjoying some quiet.  It should be about an hour until the four kids in the house need to get up.  Then, in a moment that flashed like lightning, all of the following occurred:  (1) my six-year-old daughter appears from behind the towel rack  (2) I jerk like an electrocuted Tasmanian devil  (3) I slam my hand on the corner of the bath tub, and (4) my hand bleeds.

My ninja-like reaction was presumably in preparation to vanquish the morning zombie, who was obviously intelligent because he’d somehow bypassed the house burglar alarm.  After several milliseconds, though, I’d discovered it wasn’t a zombie, but rather my precious little girl at the end of my look.  She’d arisen quite early for school and had ventured downstairs.  Of course, my knee-jerk reaction was to scream.

“PIPPI!  WHAT ON EARTH ARE YOU DOING!?!??!”

And she runs off.  Boo, daddy.

After toweling off, I discover we have run out of regular band-aids.  So I do what anyone would do:  I raid the Barbie band-aids.  Ordeal over, but it’s still a head-scratcher.

You’d think having dealt with bullshit like lupus and heart surgery, maybe I wouldn’t have to deal with any other ticky tack stuff . . . yet, here you are, Chronic Jumpiness.  Amazingly, like lupus, no cure is known. Continue reading Just Call Me Jumpy: Dealing With Chronic Jumpinness