SOME PONDERINGS ON A DREARY SATURDAY MORNING

Good morning, Dearies.

I've been thinking a lot about my postings these last few weeks, and for some reason feel compelled to clarify some things and apologize to all of my fellow kidney transplant warriors out there.

You all know me, so you know that I have a pair of rosy colored glasses stapled to my face. I try as hard as I possibly can to be upbeat, positive, and put a Mary Poppins happy spin on everything and view the world from the top of a glitter-covered rainbow.

(At least that's how it goes in my head, anyway.)

But being a kidney patient on dialysis and then a kidney transplant patient is hard.

Excrutiatingly, mind-numbingly, awfully, terribly, ridiculously hard.

If you've read this here blog since 9.30.21 I would imagine that it might have looked like my time here has been one big Indianapolis vacation. I've been super blessed in every way with a fabulous team at IU, my beloved caregivers watching my every move, financial resources (thanks to all of you) that have allowed me to stay here rather than drive back and forth, lots of flitting about and excursions to nail salons, Targets, bookstores, restaurants, etc, and what would appear to be lots of fun.

I've tried to keep this light. And as humorous as one can, given the serious circumstances. (A naked homeless man trying to break into the hotel room window two feet away from me seems funny now, but I can honestly tell you that I have never felt fear like that before in my life).

The pictures of my abdomen cut open are on my phone and in my medical chart and if I happen to catch sight of the early ones, I just about pass out from the horror of them, and the bumps, bruises, and scars I'm sporting from central lines and an inert Buzzy are daily reminders that...yes...something significant really did take place here.

This was not an easy experience in any way. Physically, the pain and discomfort and weakness and general feeling of ugh from all of these new meds knocked me completely out, and I am still fighting brain fog and the feeling that I've been dropped from a semi-tall building. 

Mentally, my tiny little brain seems to have shut itself down, since concentrating on anything harder than opening a bag of pretzels is completely beyond me. I've had entire conversations with Rich or Denise or Cheryl or my sister that I can't remember for the life of me, and the other day it took me a half hour to try to remember why I had walked into the little kitchenette.

I won't even try to explain the emotional toll this has taken, but I promise you that you don't know a sleepless night until you've been presented with the fact that another human person died and you got to live because of that. Or how you replay a nasty conversation you had in which crap comes spewing out of your mouth uncontrollably, while all you can do is sit there and watch it all take place....completely horrified that you have the capacity to be so utterly...mean.

At the moment, the financial impact of this transplant is well over two million dollars. My share of that is significant and I will be paying these bills off for a very long time. The wound vac is approximately $100 per day out of pocket (my portion of insurance), meds are going to be $400 per month for the rest of my life, and the deductibles and out of pocket maximums will be significant. Yes, my kidney fund enabled me to live here in Indy while recovering, but it also covered things like parking at the hospital and gas for caregivers, and meals and groceries, and stupid incidentals like the iron tablets that are a prescription but not covered because they come over the counter, etc. My peace of mind that there was money there to use is a gift that I will be forever grateful for, but this is going to have quite an impact for quite some time.

I'm saying all of this because I realized that it has read like one big crazy adventure that I've stumbled my way through with grit and good humor,  but the truth of the matter is that I honestly don't know how I survived this. Don't misunderstand me, please. I will NEVER be able to find enough humility and gratitude to adequately express in the face of being given a new life, but this is...by far...the hardest thing I have ever done in my life.

On my first clinic visit I met a guy that had seemingly sailed through his transplant, and he was driving and walking and working and living life as though nothing had happened, and I was thoroughly depressed that I was a hot mess of pain and confusion and neediness and couldn't get out of a wheelchair.

I expressed this to one of my nurses...that I felt like a total failure because I was still so incapacitated...and she got about an inch from my face and said "You just had a kidney transplant. We cut you practically in half, tore through muscle and tissue, pulled stuff out of the way, and sewed a new organ into you that your body wants to kill. We are pumping you full of medications that would strip paint off of a semi-truck, are demanding that you drink your body weight in fluid, and are pulling and poking and prodding you to move and come here to this hospital and sit in waiting rooms and doctor's offices when you can barely stand to sit upright. If you don't think this is the hardest thing you will ever do in your life, you have 't been paying attention. Don't you dare compare yourself to another patient. This is your journey and yours alone. Honor it by be honest enough to admit how damn hard it is".

So I guess that's what I want to say. This is a very big, very hard, very scary thing, and like our friend told me when I made light of dialysis....I am a jackass for making light of it. I can be grateful and I can tell you funny stories from my day, or I can do little happy dances over milestones that I'm achieving, but I also need to acknowledge what a huge freaking deal this has been.

I owe that to the doctors and nurses.

I owe that to Rich, Denise, Cheryl, and my sister.

I owe that to every person who has expressed support and love and encouragement.

I owe that to all of you

I owe it to every patient who has survived and fought through recovery from illness and surgery and treatment of any kind.

And, most importantly, I owe it to myself.

Thanks for indulging me, Dearies. I'm going to head down for a little breakfast and het on with my day. It's cold and dreary here in Hoosierville, so methinks it might be a bed coffee and Netflix kind of day. Stay tuned to see what kind of trouble I can get into!