Nearly 50 pounds of gelatinous goo

A week ago I first met my trainer Vicky at the local community center gym.  I was skeptical about the need for a trainer until I realized my Wii Me wasn't getting any smaller.  In fact, it appears that he even got shorter, or perhaps my picture tube is on the fritz.  I could swear he seems a bit rounder.  I'll have to call a t.v. repair technician.  And yes, I do have a picture tube, my Sony is about twenty-five years old.


Adding a trainer to my regiment has been very beneficial.  Since first meeting last Friday, I am proud to announce that after today at 2:00, I will have seen a 100% increase in my gym time this week.  As much as I love my Wii Trainer, her motivational techniques did not come even close to this kind of result.


While the live version of a trainer is much more enjoyable than the virtual one, it appears that they may have undergone similar training.  When Vicky asked me to stand still to check my posture she immediately noticed my lack of balance.  I mentioned to her that was the same thing my Wii Trainer noticed.  Vicky suggested that I buy new shoes because it seems that I have a bowled over second position stance that reeks havoc on my balance and my shoes.  


Which reminded me that on a recent trip to D.C., I arrived wearing my sports coat over a polo shirt since I didn't bring a garment bag on the plane.  I'm on my way back from a briefing before we go to the Hill and I happened to see this fellow in the mirror - I swear it is the spit'n image of Michael Moore - a hunched over tired looking man with an axe to grind wearing an extra large sports coat, ball cap and splayed out flat footed sneakers.  The only thing missing was a camera crew and about twelve inches.

So I tell Vicky that I don't use shoes on the Wii.  "Oh," she said, just like the concerned surprise that the Wii has when I stand on it to get weighed.  "You may still want to get new shoes," she suggests.


Vicky points out that her BMI measurements pretty much approximate those of the Wii.  The main difference is that when she is done she doesn't draw a short plump caricature of me, rather she asks me to look in the mirror.  Which I might say, is much more effective if not a bit depressing.  My Wii Me always seems to be smiling, not so the real me.  Especially after the mirror.  O.k. so we have our work cut out for us - me.


Vicky goes on to suggest, "would you like to try the calipers?"  I ask if most people do this, and she says that most haven't got the fortitude for it.  But she thinks that perhaps I do.  I think about if for a minute.  ". . . and the truth shall set you free," John 8:32.  Of course when I was thinking this through I had no idea that this saying is attributed to Jesus as written down by John - thank you Google, er I mean All Saints Episcopal Church.  Being the truth seeker that I am, I ask Vicky to bring on the calipers.


A big pinch on my arm, a bigger pinch on my side and then the pinch of all pinches, the belly button pinch.  I'm not sure if I was giggling in response to the cold metal on my skin or the unbelievably large amount of skin being pressed between the calipers.  I really should have been crying.


After to doing a few calculations.  Vicky announce that I have 22.6% body fat.  That doesn't sound so bad.  That must mean I have 77.4% muscle, bone, and innards.  Then she lets the hammer drop, "Erich that is 47.46 pounds of fat for your 210 pounds of body weight."  Hmmm, I think to myself.  That is how much my six year-old daughter Antonia weighs.  It seems a bit excessive.  I mean I know she feels pretty heavy when she sits on my shoulders.  Kind of puts it all into perspective.


Nearly 50 pounds of gelatinous goo is weighing me down.  That can't be good.


With that I'm off to the gym to see Vicky for training day number 2.

Resiliency brother, resiliency

Written December 27, 2010


I'm sitting here here at 2:30 this afternoon in my new athletic wear wondering whether if I should go to the gym and exercise or go upstairs and take a short nap.  Andria is going to be late tonight, and I need to be my cheery dad-self when I go to pick up Jacob and Antonia starting at 3:30.  We are planning on seeing Jack Sprat Low Fat World Tour tonight at the Wharton.  You know, Jack Sprout from the mid-seventeenth century English nursery rhyme:

Jack Sprat could eat no fat

His wife could eat no lean

And so betwixt the two of them

They licked the platter clean.

I think going to see a play about eating low fat foods should be considered the equivalent of four sessions of exercise.  I was planning on taking the kids to see 101 Dalmatians but four free tickets came our way, so nutritional theater here we come.

To exercise or to nap?  Feeling fairly tired I'm just not sure if exercise will charge me up or wear me down.  Interestingly, after I pick up Antonia I mention that I'm tired to which she says, "exercise always wakes me up."  Kids what do they know?  Instinctively, I head up for a nap.  Over the past ten years my instincts have evolved to a more protective cocoon like flee response rather than the natural fight instinct I once had.  That may be o.k. since the old instinct often got me in trouble.  I'm at the foot of the stairs about to take the first step and the futuristic electronic synth tone of my phone chimes.  Fifteen minutes earlier, Jacob had called me fifteen asking for clarification on the note of things to turn in and ask his teacher that his mom had placed in this binder this morning.  In case it is him again, I answer.  "Hi, this is Tonya from ATT I am five minutes away and can come fix your problem now."

Resiliency.  To some degree we are all resilient.  It is a very important survival mechanism.  Having been chronically ill for ten years and having dealt with ten years of infertility (I suppose it has been twenty years, though we stopped counting after Jacob was born) I have come to rely on my resiliency.  While it was somewhat of a disappointment when the phone rang, I saw it as a sign the nap was not to be.  Instead, I sat down and started to type since I can't leave to go workout.

The ATT Service Tech Tonya is here because two hours earlier when ATT Service Tech George left after fixing my DSL he forgot to make sure my phone line was good.  It wasn't until I went to make a call that I found out it wasn't.  George was here because on Monday, ATT Service Tech Manny came to upgrade my house to UVERSE which would give my sad little DSL line a heroic boost.  It wasn't until Manny got to the local HUB that he found out that I was a few hundred feet too far for UVERSE.  Everything was working fine when he left until Tuesday.  After some investigation today, George found out the home office forgot to reconnect my DSL.  Tonya just found out that George had inadvertently shorted the phone line.  How do they stay in business?  That was a lot of work to give me the same service I had on Sunday.  The idea did cross my mind to switch to Comcast, but I really like my email address.  Resiliency allows me to see this bungling as a comedy of errors and not a tragic drama.  I was so relieved to get reconnected that I let the frustration of my wasted time drift away.

Andria is also very resilient though her acute instincts remain intact.  Last night Antonia's sighing woke her.  Antonia told her that she had a bloody nose to which Andria asked how do you know as she turned on the light - blood was all over her bedding.  As she was cleaning this up at 3:00 a.m., Jacob who has asthma was coughing and having difficulties.  While she was checking on Jacob my dialysis machine alarmed.  I attended my machine and managed to get to the end of my dialysis run only to have forgotten to clamp my arterial line when I was done.  That is the line that is connected to the top of my fistula which is my bicep via a large needle.  Because of my own rough night tending my alarming machine, I am groggy when I go to disconnect my machine lines from my needle lines in my arm and sure enough blood spills all over the bed from that unclamped arterial line -- another CSI like mess.   I can't really help clean it up because I need to spend the next fifteen minutes pulling the needles from my arm and holding my sites (holes in my arm) until they stop bleeding.  Because of her resiliency, Andria is able to lightly step over to my side of the bed and attend to the mess, before she simply goes about getting ready for her day.  She is probably relieved that our six month old puppy Cassie hasn't barked to go out yet.


There was a time that I fainted at the sight of blood.  Those days are long gone.  Resiliency brother, resiliency.  Now when I am dealing with a spill or a reluctant clot, Jacob and Antonia just watch with curiosity.  Daddy bleeding just doesn't phase them.  Of course, Antonia was none too thrilled with her own bloody nose.  I hope these experiences are fortifying them and not scarring them for life.


To exercise or to nap?  Today it will be neither.  I'll have to make do with a hearty serving of deliciously healthy theater.


Dialyze for the Prize.

Prying my arst out of my seat

How delightful.  The snow is lightly falling.  The children are off to school.  Andria is at work.  And, our Marley like six month Chocolate Lab, Cassie, is getting a bath at the kennel.  Simply, it is just a wonderful time to write.  


Except that I'm writing a blog about getting into shape and I haven't been to the gym since Friday when I met my trainer Nancy (which incidentally is not her real name.  I thought I should use a pseudonym in case things get ugly).


So, I will pry my rather soft comfortable arst out of this chair, put on my boots and trudge to the gym.

Time for the Trainer

Apparently the power walking mama's were too busy power walking to come to the nine o'clock class this morning.  And the AARP set were more content to be down the hall playing pinochle.  


"Herb, it is your bid," Harold says.


"Herb!" says Harold.


"Yeah, yeah, I hear you.   I was just thinking there was some place I was supposed to be.  I bid 250.  Darn, it is right on the tip of my brain.  Florence was saying something the other day about something she signed me up for," says Herb.


"You won the bid.  Are we playing cards or what?" Stan chimes in.


"I can't imagine being anywhere other than here. Hmmm?"  says Herb. 


"You want me to get you some Ex-lax to speed things up, Herb? says Stan.


"Hearts it is," says Herb


Alas my class was cancelled.  What does I guy have to do around here to get in shape?


I decided to take things into my own hands and went to the fitness center.  You sure can get a kink in your neck staring up at the T.V. watching MSNBC while strolling on the treadmill.  I also found it was hard to read the captioning with Patrick Simmons of the Doobie Brothers singing: 


Well, I built me a raft and she's ready for floatin'
Ol' Mississippi, she's callin' my name
Catfish are jumpin'

That paddle wheel thumpin'
Black water keeps rollin' on past just the same

through my Blackberry earphones.  I love that song.  Very appropriate for the Grand River Expedition too.

Thirty-five minutes later I'm off the treadmill and on to something else.  One thing I noticed about the fitness center.  There are a lot of fit people working out here.  Hmmm.

There it is, old faithful, the bench press.  There was a time when I could load a four of the forty-five pounds weights onto the bar and almost press it.  But for today, the forty-five pound bar was more than enough.  Vision's of the old Charles Atlas beach weakling found on the back of Flash Gordon Comic Books flash before me.  Has it really come to this?  I think to myself.  I do two sets of fifteen reps and then sit up to a bit of vertigo.  I know the lactic acid will be screaming through my deeply buried pecs tomorrow.  But, you have to start somewhere.

I grab some dumbells and do ten bicep and ten tricep curls.  I do a few presses and figure I've done enough for the day.  I set the dumbells down and to my surprise the 20 lb mark I was expecting to see reads 10 lbs.  Sheesh.

I realize as I leave the fitness center that it is time to call in a professional.  I had noticed a flyer on the wall next to the bench press - very strategic placement - advertising a personal trainer.  The flyer suggested that the personal trainer can provide an exercise regime tailored to specific needs, including medical concerns.  I grabbed her card at the front desk and called when I got home.

After getting some initial information, Vicky, the professional trainer, asks, "would you like to start tomorrow?"  Hold the boat I think to myself.  I mean I just walked 1.4 miles and benched forty-five pounds.  Today was a huge day for me.  I "Just did it."  I'm not an automaton that can workout every day.  What about my my sure to be searing lactic acid tomorrow?  I didn't say all that.  Roxanne just heard a nervous giggle prior to me saying, "ah, sure."  She then went on to discuss how we would discuss a number of things and assess my strengths and weaknesses.  To which I couldn't help but laugh out loud and say, "shouldn't take long on the strengths."  She didn't say anything and probably just thought, "he won't make it past two sessions."

So tomorrow it truly starts.  I'll be forking over real money to be motivated to exercise and not just collecting Wii coins on my Wii Fit.  I'll let you know how it turns out.

"Dialyze for the Prize."  Erich

Sometimes even Yoda can inspire not. Yeesssssss.

"Just do it"
~ Nike

"Do, or do not. There is no 'try'. "

~ Yoda 

"A journey of a thousand miles begins with a single step."

~ Lao Tzu

"Even if you are on the right track, you will get run over if you just sit there."
~ Will Rogers

"People often say that motivation doesn't last. Well, neither does bathing - that's why we recommend it daily."

~ Zig Ziglar 

Sometimes even the greatest of  motivational phrases aren't enough to overcome anemia.    I started out last week with the best of intentions.  I weighed in to get a baseline with my Wii Fitness Trainer.  The short squat avatar of my Wii Me is now seared onto my frontal lobe.  When I look into a mirror the image I see is a recall of my Wii Me.  The cute little chunky Me is standing there smiling and waving, just waiting to play.  You would think that would be enough to motivate me to jump on the treadmill and run as fast as I can to escape the stare of the happy little hobbit Me.  But alas, even this unbelievable portrayal of how I see myself isn't enough to overcome a low hemoglobin.


Anemia is just one of the comorbidities that people like me who are on dialysis face.  As I undertake the journaling of this journey of Paddling on Dialysis for Kidney Health, I want to ensure that it is kept light hearted and enjoyable to follow.  However, at the root, we are dealing with a serious subject - kidney disease and chronic illness.  While motivational phrases are necessary to stimulate action, it is important that I don't gloss over the real obstacles to achieving success.


I want to step back for a moment to when I proposed this project to my wife, Andria.  At first she was skeptical and as she realized the project was picking up steam, she became worried.  These ten years that I have been on dialysis have not been easy for the four of us and it has been particularly difficult for Andria.  For the first few years we weren't even sure of my survival.  After a worrisome evening she would finally fall asleep beside me not knowing if I would awaken the next morning.  All too often she had to think about raising our son and then our daughter without me.  It was only a year after the last of my failed kidney transplants (she donated her kidney to me for my first) that we began to see some stability in our lives.  The stability became much more consistent when I moved from three times a week in-center hemodialysis to daily short term hemodialysis at home.  It has only improved as I moved to nocturnal daily hemodialysis at home.  


In order for me to do this project, Andria insisted that we make sure my nephrologist was on board.  She didn't want me to die of a heart-attack now that I was going to start a strenuous exercise program.  Of course, the strenuous part of the exercise program hasn't quite started.  Actually the exercise part of the program hasn't started yet either.  But, I did get cleared my nephrologist, Dr. Fareha Kazi.  


A quick note on Dr. Kazi, she was a Fellow at the University of Michigan when I was there as my kidneys were failing and also while I received the gift of life from Andria.  After completing her Fellowship she moved into an existing practice in Lansing.  After my second failed transplant I realized that there were no miracle treatments in my future and that maintenance dialysis was what was left for me.  With no reason to continue at the U of M I sought out a nephrologist in Lansing and to my surprise found Dr. Kazi.  Over the past five years she has been a very progressive and supportive physician as we have worked together to help me have a prolonged and productive life.


With a "clean" bill of health, relatively speaking, Andria came on board realizing that there was no stopping me now.  Of course what seems to be stopping me now is 10.5 hemoglobin.  Back in the day it would be nothing for me to run five miles a day.  Of course, in the day I had a hemoglobin of 14.0.  But thankfully our bodies are resilient.  Even when diseased, we seem to establish a homeostasis or balance with our limitations.  While anemia may be inhibiting me to undertake strenuous exercise, it hasn't stopped me from grocery shopping, seeing to my children's needs, and walking the dog.  Of course, perhaps it is Andria suggests, that I'm just cold and unmotivated, hmmm.  How to discern the difference?

I am getting iron infusions weekly because my iron saturation is low.  This is just one of those things that happens to people on dialysis.  I'm also injecting myself twice weekly with the performance enhancing drug Epogen.  This brings a whole different meaning to the word performance.  While EPO my help Lance Armstrong's cohorts get through Ventoux it often helps dialysis patients just get out of bed.


Last week I did indulge in some Wii yoga.  While my Warrior Pose garnered trainer status, my Palm Tree swayed in the breeze, my Half Moon bayed, and my Tree came crashing down.  I also signed up for two dumbell classes at my local community center.  Unfortunately the one that I would have been at right now didn't have enough participants.  I have no idea why folks aren't available for a 9:00 exercise class.  I see all my grey-haired friends shopping at Meijers at this time, surely some of them could take the time to get their AARP butts over to the gym so that my class can happen.  When you are medically disabled and are on permanent disability you live in a world of stay at home moms and retires during the day.  For me it is like living my life in slow-motion.  It is surreal and often frustrating, but in the final analysis, "it is what it is" and I make do.  Quite frankly I was hopping to lead the curve at my dumbell class, although that was probably wishful thinking.  There are some pretty fit seniors out there, and lets not get started on those power walking mamas.  They haven't cancelled my Thursday class so I will keep my fingers crossed that the class will go.


I am certain that the right combination of iron, EPO and motivational phrases is just around the corner and soon I will be sweating and panting out of breath.  I mean more than when I go down stairs to get the laundry.


When you shoot for the moon and you come up short, you still end up among the stars.
~ Les Brown

What the mind can conceive and believe, it can achieve.
~ Napolean Hill

Go as far as you can see, when you get there you'll see further.
~ Latvian proverb

Good news, my Wii age is 46, but the bad news is. . .

O.k., ever since my chest started sagging past the tip of my sternum I thought perhaps I was getting a little out of shape.  When my son, Jacob said, "perhaps Dad you should consider a man-bra," I refrained from giving him the evil-eye and instead politely responded, "it is just relaxed muscle, see," and proceeded to flex. "Sure Dad, but it stills seems a bit jiggly," Jacob said as he dashed out of the room before I could teach him how to respect his elders.  


The truth of the matter is I'm not in the kind of shape that I once was.  Of course that was twenty-six years ago.  I have only been on dialysis for nine years.  The difference is that before I was on dialysis I at least knew I could get in shape at anytime, if I wanted to.  Now, getting in shape seems to be a very difficult task. To help assess my condition yesterday I consulted our friendly Wii Fit trainer.


The Wii Fit is just a video game and it doesn't have an emotional stake in the game's outcome, however, after the game says, "step on," and I do, it seems to me that the game is genuinely surprised and a bit concerned when it lets out an, "ooh!"  Once I've stepped on the balance board, it takes an inordinate amount of time to calculate my weight.  I stand there and the game just repeats, "measuring, measuring, measuring," all the while I'm hoping the word, "tilt," doesn't appear on my television.  When it is done calculating it shows this:

I'm not sure why the game shows my Wii Me smiling, 214 pounds seems rather heavy for 5'9", even if I do pride myself on having an athletically robust frame.  The one thing about dialysis is that body weight is measured in kilograms, so if your used to the English system like most of us are, then 97 kilograms sounds pretty good.  It can be quite a surprise if you have been spending your time in the metric world and you suddenly have to weigh yourself in the English world, like yesterday.


After coming to grips with my obesity, like that will ever happen, I undertook the Wii age balance testing. To which my emotionally neutral game wryly cracked the quip below.

Perhaps it was just a question, since clearly I can't balance on the game's balance board, but I have no trouble walking, thank you very much.  Though interestingly I do have a problem climbing stairs.  I'm not tripping over myself rather I just find they take a lot of effort.  I know, you are probably saying, "well of course it is hard to get up stairs, your obese."


There it is, at the beginning of my Paddling on Dialysis for Kidney Health project my electronic fitness consultant has laid it out - I'm a 44 year old obese individual who should feel lucky every time his face doesn't hit the pavement when he walks.  I am either going to have to get a bigger canoe or slim down by the time we hit the water.  Not to mention, firm up my man boobies so that I can paddle 225 miles through lengthy backwaters made by the numerous dams along the Grand River.


Dialyze for the Prize!

Today is a good day to begin

2010 will be my tenth year on dialysis.  Ten extra years of life, that is phenomenal.  Not as phenomenal as say twenty years or even twenty five years, but, it sure the heck beats being dead.  I really don't have a good reference for that statement, but I'm o.k. with that.

To mark the occasion I am going to get into shape so that I can join the Grand River Expedition 2010 which will lead scientists, educators, local officials, river enthusiasts and at least one fellow on dialysis from its headwaters near Jackson, Michigan to Lake Michigan at its mouth in Grand Haven 225 miles downstream.  I will also solicit donations for the National Kidney Foundation of Michigan which is the nation's premier organization working to prevent kidney disease and to improve the lives of those who are suffering from kidney disease. 

I'm proud to say that my Mid-Michigan NKFM Walking Team, the Riverdudes, has raised over $54,000 since we started in 2001. 

To celebrate my tenth year on dialysis I pledge to raise $20,000 for NKFM with your help and the help of the Riverdudes.

Prior to having my kidneys suddenly fail I was a watershed management consultant working to protect rivers and the lands that drain to them.  Back then I use to talk about how we needed to preserve wetlands since they were nature's kidneys working to improve water quality and manage flow.  Well now, I'm talking about human kidneys and how we need to protect them for pretty much the same reasons.  the 2010 Grand River Expedition will stop in communities along the way and set up mini-river festivals.  With my friends at NKFM we will join the festivals to encourage people to take good care of their kidneys and to protect wetlands too and to get out and enjoy the river.  For the past ten years, I haven't done any river work, other than paddling with my ten year old son and my six year old daughter, rather I've been working with a number of groups to improve the lives of dialysis patients.   When I first started river work someone who recognized my in a grocery store, shouted, "hey, Riverdude."  The nickname stuck, so I'm proud to say that in 2010, the Riverdude will reenter the waters to once again help protect the river and kidneys too.

I hope you enjoy reading Paddling on Dialysis for Kidney Health where I will be documenting my experiences in undertaking this great project.

Dialyze for the Prize!  Erich