Discharge Day 2/18/16 – Update

2/18/16 Discharge Day From Methodist (Again) With Perks

Sometimes a day is too perfect about which to be written, as the ascription of mere words to it is the same as applying piss to an already healthy plant.

Yet here I type.

It was surreal out today, as a have been many days recently.  The irony of perfectly spun 12-hour cycles by the Creator of This Place (70 degrees, breezy, sunny) is not lost on the one full of purple marks on his arms, with IV holes, shanks, blowouts, and near misses.  The one whose control on all things is gone.  The one whose strength is spent and whose soul is scattered.  The one who’s suffered much.  The irony is not lost.  THE WORLD IS CARRYING ON FINE WITHOUT YOU.  See?  Here’s another perfect day and the firmament stands.  It’s there, through the grimy hospital window.  It’s perfect.

Those of you who know a little bit about what I’m going through, well, it’s still hard.  A hard patch.  Right now I am grappling with not only a challenging set of physical circumstances, but also a difficult hodge-podge of questions, such as,

“How does one deal with the specter of 94 days of hospital visits while avoiding talking with AETNA insurance personnel at all costs?”

“What is the existential meaning of Fat-Free Salad Dressing?”

“How do I look people in the eye, after losing complete control of all the things I used to control?”

“How does one man, while sharing a hospital room with another, need 800 terawatts of volume on his hand-held personal TV audio device, which can easily be placed one millimeter away from his eardrum?”

“How can I explain to my kids that, while life has its imperfections, such as death, taxes, and politicians, that THEIR LIVES will surely be better than mine?”

“Am I going to live until I’m 44?”

There was a funny Twitter post by a friend today which read, “Uh oh, just counted things up in dog years.  I’m already dead.”  I’m not dead yet, although I keep having a recurring phrase or book title – which may already exist – that’s “Hello Mortality – What’s for Breakfast?”  Probably meaningless, but a comical motto to face the day.

My recent hospitalization was for the same reason as the past six: nausea, stomach pain, and intractable vomiting.  Seems to happen a lot when I come home (it’s not the cooking!)  Just can’t seem to survive several weeks without an episode of this happening, and really the only way to get relief is to shuffle back to Methodist, head in hands, begging for the IV so I can get Dilaudid (hospital crack) or Phenergan (less potent hospital crack).  Now everyone recognizes me so I pretty much get what I want.  And it’s always a hoot.  I can just get to the point with the nurse.  “Dilaudid, please.”  “Yes, Mr. Timpanaro.”

The cycle continues.  I’m aglow with steroids.  1 full gram today via drip.  Boom.  Hello weepiness and anger.  I am a walking telenovela in a hurricane.  But if that’s what it takes to get my disease process under control, then so be it.  The PLAN (which is flawless) is for docs to get me well via the correct admixture and prescription of medications.  No easy task, because my symptoms are street-hard.  Toxic, boy!  I can tank like no one.  But once I can stabilize for a while, I’d like to get screened for another kidney transplant.  And there must be hope.  Great, shining, effervescent hope that this will come, because I am once again “a dialysis patient”, which, no matter how many smiling teeth you show when you say it, makes you feel like some being from a tertiary world.  You’re a to-do list item on some nurse’s clipboard three days per week, four and a half hours at a time.  Sit down, hook up, get purged, feel like zombie who’s been somehow bleached from the inside out, go home.  I’m from the planet, “Monday-Wednesday-Friday” and there’s no pride there.  It’s a scourge.

But lo, and behold, today had perks. I am ever aware of an impossible amazing support system of family and friends. There are people loving me and watching over me and hoping good for me and praying God-knows-what-anymore and wondering why God is taking so freaking long to do anything meaningful. YES! Without these people – in myriad roles from near and far – I’m scuffed, I’m scratched. A goner. Indeed, I’ve talked to nurses in the transplant unit who admit, grimly, that there are patients who simply “don’t make it, because there’s no one . . . no one there for them.”

So YES, amid a whirlwind of a happy hospital discharge today, I was visited by the lovely Nadia Salameh, my original kidney donor, along with her sister (and kidney recipient) Susan Mashni.  It was like a scirocco of fresh life force.  Like that extra sprig of cilantro in your mojito!  Yes it was that good.  I hadn’t seen her since the original transplant, so emotions were plain to see.  It was an amazing visit.

 

Nadia, Jeff, Susan

So thanks to all of you, for prayers, for kicking puppies, for shouting and whispering, for tears and for ripped up teddy bears. I feel you. I’m feeling it. Please in your rage, include supplications on behalf of my family, as they are clearly getting the brunt of me at the time being.

The sun has passed on this perfect day, and I didn’t manhandle a single moment of it; rather, I actually enjoyed it. Now. Where’s my medication box? Got to keep this body going.

6 thoughts on “Discharge Day 2/18/16 – Update

  1. Always love your writing. Hate your story and wish for more great Timpanaro tales and I know they will come. Maybe the 4 1/2 hour sessions can be dedicated to your book. Just know that thousands of us out here are thinking of you , pulling and praying for a breakthrough and a recovery to the happier times.

  2. Your wit, eloquence, and seemingly inexhaustable fortitude through all of this is inspiring. I’d say you’re entitled to a bit of weepiness and anger. And extra cilantro on that next mojito!

  3. You are such a gifted writer, Jeff! I pray you have more days like this and everything falls in place in the ways that need to happen for you to be placed on the transplant list quickly. You and your family are steadfastly in my prayers. Warmly, Mary

  4. I think Steve and Joan should write the reviews for your book! I also echo the words they and Mary said. I can’t even imagine what you and your family are going through. You are definitely a gifted writer, and I hope you really will write that book. Your words pierce like a sword through all the superficial and seemingly urgent stuff that goes on in our world and fills our lives and remind us of our mortality. It is a constant struggle since we are wired for eternity. I will continue to pray for you and your family for healing, hope and confidence in knowing you can make a difference in the lives of many with your words of wisdom, even from a dialysis table. Especially from a dialysis table!

  5. Jeff, you blow me away with your words, wisdom, wit, where all and courage! No one should have to go thru what you’re experiencing and it’s SO hard to find the answers to the question of Why??? Stay strong emotionally, spiritually and thru what ever physical strength you have….your “Prayer Warriors” are out in Force For You!!! I’m leading the way….much love to you. Ann

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