Showing posts with label Kidney Disease. Show all posts
Showing posts with label Kidney Disease. Show all posts

Saturday, March 11, 2017

Living with Kidney Disease Like You're Judd Nelson



My new pulmonary doctor is located at the Lewis Cancer Research Pavilion off of Reynolds. After
my doctor’s appointment I was walking out to my car when I saw this in the lobby and it grabbed my attention. I read the placard and was moved by what it said:

Ring this bell                 
Three times all’s well
 It’s toll to clearly say
My Treatments done
Or a milestone won
And I am on my way 


            I don’t have cancer and somehow felt like it wasn’t my place to even consider ringing this bell. I wanted to show respect to the people who had fought and earned that right because I can sympathize. I did take that picture because I knew I’d want to remember this moment.
As I walked out to my car I remembered the past eleven years of living with kidney disease and dialysis. The number of ways it’s impacted my life to trying to just live normally overwhelmed me:  Lugging that damn cycler on vacations and trips for NxStage, not being able to camp for more than two nights. having to stick myself with damn buttonhole needles nightly, the pain from that, not being able to make love to wife when the urge hits us while hooked to my dialysis machine, labs, fatigue, maintaining a fulltime teaching gig, missing tour guiding were just a few of the thought going through my head as I fumbled for my keys to unlock the Falcon.
The key was in my hand when that line hit me. “Or a milestone won”
Getting on the Transplant List for a kidney has got to count for something and it's a milestone for me. ......
I walked back and rang the hell out of that bell and I walked out like Judd Nelson at the end of The Breakfast Club.
Screw you, kidney disease

Cue Simple Minds song....

March is National Kidney Month. Love your kidneys. Trust me, it's a divorce you don't want....



Sunday, March 5, 2017

Doubts? Oh, I've Got a Few.

            Anybody who knows me will tell you I am a veritable fountain of ideas but always have a hard time following through. It’s something I have really tried hard to work on over the past few years. So much in fact, that I haven’t even mentioned to anyone I am writing daily as my form of Lent. Frankly, I am worried I’ll stop in about a week or so. (I already missed Fri so I’m trying to make up with three posts today. This is the make up one) But I am really trying to focus and do this. I want to write and discipline is the key. My dozens of short stories, novellas, and graphic novels fighting for my attention on my hard drive are the proof I need to work harder.
            I am working on ideas constantly. It’s looking like we are narrowing it down to getting Luke to do a show out in Fort Worth, something up in YHC, and the tee shirts. I’d  really love to focus here in Savannah but the money just isn’t here. Kim covers dozens of articles weekly in her freelance career regarding fundraisers but they just don’t pull in the type of bucks I’m going to need. Savannah is the epitome of the model for the 1% and I just don’t see that circle helping a teacher/tour-giude  out.
So I got to figure out to get the biggest bang for my buck. One thing I learned from my days as social chairman for my frat was the bigger the net, the larger batch of fishes that come to the party. The American Kidney fund will match me up to twenty thousand dollars so that is my goal. 20 gs. I’d break that down further into the “how many quarters, dimes, and nickels but I suck at math.
Twenty thousand is nearly half my yearly pay and for some reason I honestly have this notion that I’ve got this. It’s comparable to the sword and the stone and I am the young Arthur. It’s overwhelming. It’s daunting and there is absolutely no reason whatsoever that I can do this. Others have attempted to pull the proverbial sword form the stone so why do I think I can raise “Excalibur?” I have no idea except for this:
There are a handful of lessons I’ve learned over the years and the biggest is to listen to my inner voice. It’s that little nudging I’ve cultivated from a whisper to a more conversational tone since my younger years. And you know what? My little voice is saying to me in very calm voice, “Robby, you’ve got this.”
I can assure you there is no swagger in any of this like in my Baby Rich college days. That voice is not arrogant and I’ve come to realize it’s not even mine but it’s that of the Big Guy’s trying to reassure me.
Now let me get this straight before we go any further. I do not honestly believe the voice of my long dead father is speaking to me from the Great Beyond. I am not lucky enough to have my Dad be my own personal Obi Wan Kenobi.
I just feel like when my subconscious wants be to take things seriously, it knows to speak to me I the tone of the Big Guy. It never failed to get my attention in the past so why wouldn’t my brain know to use this to drive point home?
The Big Guy taught me and my sister that in order to be successful, you’ve got to have a plan and that involves preparation. It’s the beginning stages but I am prepping like crazy. This week I am meeting with my social worker with a list of questions in hand. I’ve reached out to Harvey who is my friend from NxStage who has been through all this. Harv is working on a list to let me know everything he wished he knew going into this. Timelines are being formulated for me to start setting and meeting goals to get that kidney. And I have a secret weapon:
Kim.
My personal bias on the abilities of my wife knows no bounds but I also am well aware I am married to not only a professional writer but someone who is an expert in public relations, has a background in fundraising from her army wife days, and next to my sister, is the best person in the world who can keep my off-the-wall ideas in check with some sense of reality in mind.
Then I look a little further among my friends and family and it’s insane at the number of talented and resourceful people I’ve got to be able to beg and borrow from. There’s librarians, DJs, nurses, salespeople, artists, musicians, scientists, comedians, teachers, actors, preachers, camp counselors, computer people, and just a general gaggle of amazing people I’ve gotten to know and become friends with over the years.
So when I have these moments, and trust me, they happen several times daily when I begin to sweat how I’m giving up six months of my life to recover. Six months where I can’t draw a paycheck form teaching. Six months where I won’t be able to drive the back and forth from Savannah to Atlanta for weekly doctor checkups at Piedmont. Thirty-six months where afterwards Medicare will no longer pay for the immunity suppressant meds that cost over a grand a month. A swirl of how will I pay for this? How can I support my family? How can keep from being a burden on Kim?
“Stop.” I hear myself say firmly inside of my head. “Take a deep breath. Breathe in, breathe out.”
An overwhelming feeling of peace washes over me and it’s as if I feel that giant hand slowly grasp my shoulder which recognize since childhood and I hear it.
“You’ve got this.”

Damn straight I do. Let’s get a kidney. Who’s with me?  

Thursday, March 2, 2017

A Teachable Moment.....

3/2/2017
            It has now been officially one week since I was told I would be listed. It’s been nice. I honestly do not have the right word to describe it. Ok, maybe overwhelming. But still nice. I’ve noticed that every night when I sit down ot stick myself, I find myself wondering how many more times will this be now that I know this will a process with a finite number. Somehow that makes the sting seem a little easier.
            Had a funny moment in class yesterday during my Am Lit. Voshawn came up and asked how I was feeling.
            “I’m fine, Thank you for asking but where is this coming from. Very out of the blue.” I responded.
            Oh, well, Voshawn stumbling over his words in a very surprised manner. ”I thought you got a kidney over the weekend. I wanted to make sure you were ok.”
            Aww, man, thanks, I smiled and I said to him. “That is really cool you’d ask but it doesn’t quite work like that. I then proceeded to explain the process in a very quick manner which would keep a 17 yr old’s attention.
A couple of other kids began to listen because it was getting them out of doing vocabulary work. Suddenly the back part of the classroom became an infomercial on Kidney transplant. Not on the lesson plans but I guess we’re ok.
I don’t blame them for the questions and it has never bothered me. Frankly, I keep wondering if there is some way to tie in informing folks on this in a non-preachy, boring manner and where I could profit form writing. I guess that is one of the reasons I’ve started writing daily about all this. Maybe this will be my rough draft for something good.

#Fingers crossed

Thursday, November 17, 2011

Thankful


I’m getting my catheter removed so around 7am Friday morning, I’ll no longer be a human bagpipe. Needless to say, I am psyched. Having kidney disease sucks but I hated having a tube run out of my body. It made me feel like a frickin’ droid and not in the cool way.
As I was leaving the hospital for my Pre-Op, I ran into this lady who was the spitting image of the mother from the Walking Dead who has the missing kid. She had short cropped, blonde hair and I could tell at one point she was a looker but sickness has aged her. She was walking very slowly like each step was painful and I noticed her angles were swollen with edema. She brought a lit cigarette to her lips as we passed.
She said to me with a sad smile and low voice, “Good to know that I am not alone,” as I hobbled by her.
Spitting image, just needs a cigarette.

My heart was hurting for her because I know how she feels but I couldn’t relate to her at that moment. Truth be known, it kind of pissed me off. I feel good. I feel real good almost like I used. I don’t walk very well anymore but I have boatloads of energy compared to Robby 2 years ago. I am not in pain anymore. I don’t feel sick all the time or weak. I am also happy.
Thanksgiving is a week away. I am very excited because I am spending it with my new family and my old family. I am thankful to have these people in my life and I hope they know I am proud to be in theirs.
I am sure at the dinner table on Thursday; we’ll go around and share what we’re thankful for. I know that I am going to say something about having my Mom and Kim and the kids at my table and I am going to mean every word. Deep down, I have already given thanks that I do not feel one little bit like that lady I passed yesterday. I apologize for my selfishness but it’s a good feeling to wake up and realize that I am going to make it through the day without being exhausted or hurting or depressed. I guess being thankful just doesn’t cover thinking of other people and appreciating them but also being a bit selfish from time to time.

Sorry being so serious. I just needed to get this off my chest. It has been haunting me since yesterday. I originally planned a Thanksgiving sort of blog because of a picture I found. Over the next week, I am going to try get a few fun T-day stories in but I love this picture. It is cracking me up and is over on the Star Wars blog. If you get a chance, read the T-day Holiday special idea pitched to them regarding Wookies and  a Turkey based Jedi. Priceless.