Thursday, April 17, 2014

The Million Dollar Work-Up

After a year of testing, the curious doctors at UPMC probably have more of my DNA than I do.
by Shawn K. Inlow

Part 2 of a series on living kidney donation.

Most people get a check-up when they turn 50.  Usually this includes a cursory visit to your regular doctor and they tell you to cut down on salt and get some exercise.  If you have a health care plan, you probably go and get a colonoscopy, that pleasant rite of passage into your golden years.

For me, it was different.  My brother, Chuck, who you may have met in the last post, was getting to the point in his life where he would need dialysis.  A medication he'd relied on most of his adult life was known to damage his kidneys over time.  So a little over a year ago, my siblings (I'm number 6 of 7.) began getting blood tests to see who among us might be a suitable match to donate a kidney.

So my check-up, then at the age of 51, was possibly going to be a little more extensive.

When you first get the idea that you might have to become what they call a "living donor," you have a little trepidation.  It's the part of the movie where everyone is drawing straws and you kind of hope you don't draw the short straw but you have to man up and pick.

I had to go and get a preliminary blood draw on the same day that my brother did and the samples were to be sent off to the lab at UPMC Montifiore in Pittsburgh.  My preliminary match was good and this began a process that I and others in my family would begin together, but that only I would complete.

I was in contact with a living donor coordinator by the name of Mary Gorinski and she was to be my tether to the whole process.  We'll talk about Mary more later, but your donor coordinator becomes a pretty important person when you are thinking about donating an organ.  And I began to learn from her that just being a match wasn't necessarily good enough to become a donor.

I received in the mail a medical card so I wouldn't have to pay for the kinds of lab work that would follow.  I was to present this card to providers wherever I sought to get testing done, etc.  This was, ostensibly, to make the testing more convenient for me.

A letter accompanying all the scripts I'd receive tried to explain to the rural Pennsylvania providers that I was not to pay for any of these tests, but the billing was to be through the account on the medical card.  Well.  Billing is apparently complicated and I'd gotten more than a few oddball looks at the inpatient desks while staff tried to figure out what numbers to punch into what computer.

Suffice to say, it did not go well.  Some of the stuff, like a blood draw (there were many of those), were pretty straight forward and the staff at the local health care facilities genuinely wanted to be of help...

... When you are donating a kidney, people think you are an ok guy and it is humbling to be looked at in that way or to be told you are doing something wonderful...

But when it comes to collecting jugs of your own urine and storing them in the fridge?  That really slowed me down.  First off, I went and got the proper containers - big orange things - from Geisinger in Philipsburg.  But when I got home and read the instructions I found out I couldn't just take a leak into the container.  I had to get ANOTHER container and pee in it first and then pour it all ("every drop") into the big orange container and then I had to put that in the fridge.  Gross.

So I'm lookin' around my house for a piece of expendable Tupperware or something that I can piss in without spilling any and I finally had to go and buy a Tupperware that seemed to suit.  And I collected every drop of my urine for a day or two.

I guess this was all to test my "flow."  Not my badass rhymes, oh-no.  This was all about the total volume of urine I produced in an exactly measured amount of time.  I had an awesome flow.  I was a beer drinker at the time (more on that later) and I had some heavy orange jugs at the end of two days that I turned in at the local lab.

But the pure prospect of keeping jugs of piss in the fridge really slowed me down.  This was not because I was hoping my oldest sister, Punky, would hurry up and match first.  This was because putting piss in the fridge is weird.  But I did it.

In April of 2013 I went and got my own colonoscopy because I didn't want this hassle of going through getting one "for free" with my new medical card.  And I have to say, despite the "prep work," I rather enjoyed the colonoscopy.  It was probably the best day of rest I've had over the remainder of the intervening year and I woke up refreshed, if a little squishy in the boot.

The nice thing about this process is they really, really wanna make sure you don't have any form of cancer.  So.  Y'know.  Whoo!

After a few back and forths with Mary where I asked if I could just come down to Pittsburgh for a day or two and do all the tests they wanted, UPMC actually changed their protocol to try to do just that.  So after months of farting around, I was scheduled in September of 2013 to spend two days in the Oakland section of Pittsburgh for testing.

I didn't stay at the hospital.  I stayed at this charming thing called "Family House."  More on that later.

In this process, you begin to really evaluate yourself.  The doctors are looking at you right side up, up side down, inside out and every which way.  These facts.  These scans.  These measurements.  They make you feel like you aren't good enough.  And you begin to wonder.  You begin to hope that you are indeed good enough.  At first, I wasn't good enough.

Walking into these tests, I weighed about 215 pounds and stood just a little taller than 5' 7".  I was fat.  Oh, I still am, but I've lost 23 pounds in the four weeks since the operation... More on THAT later.  In my defense, I AM big boned.  For real.  My chiropractor once took a look at my x-rays and told me my bones were about 10% bigger than normal.  It makes me kind of thick for as short as I am.

When I was 30, I was called into the doctor's office at Fort Indiantown Gap during my cadet days in the Pennsylvania State Police because my weight, 174, was too heavy for my height on the chart.  Back then, if you were a fatty, they'd just boot you out of the six month training program.  The doc there took one look at the chart and one look at me and told me to go back to training.  There wasn't an ounce of fat on me.  Like I said... I'm big boned.

But the discovery of alcohol in college, beering myself through the hair-band 80's, and two decades of heavy self-medication as a State Trooper had done it's best to destroy what was left of a once supremely fit college soccer player.

The two-day testing process checked everything.  I walked back and forth from Family House to UPMC and was taken in and glided from test to test.

First it was height and weight and vitals.  Then the first of crazy amounts of blood draws all put into tubes with different colored caps.  Then it was off to a stress test where they made my fat ass run uphill at full-tilt-boogie with wires hanging offa me and my right arm extended straight out to the side with a blood pressure cuff.  It sucked, but I used to run a lot so, I guess it was okay.

Then there were ultrasounds of my torso.  Then they stuck me in a donut that imaged my torso completely.  I so wanted the pictures.  Then more blood draws.

Then there was this battery of interviews.  Met the guy, Doctor Tevar, who might do the cutting.  He told me that, you know, with any surgery you can die.  He told me that if I needed a reason to be rejected as a donor, he'd give me one.  Said I could stop the process the whole way up to the moment of the operation.  Met an "advocate" who wanted to make sure I was not being coerced into donation or that I was not getting paid (More on THAT later.  It is illegal to sell your organs.)  Someone else told me I could no longer play ice hockey and stuff.  Someone told me I had gallstones but they weren't getting in the way of anything so they'd just leave 'em be.

My favorite was probably the psychologist.  No, really.  They wanna know what's in the head of people donating organs.

"Why do you want to donate your kidney," she asked me.

"I don't want to donate my kidney," I said.  "Who wants to donate their kidney?"  I explained to her that any good person who could help another person should help that person.  It was more a moral compulsion.  I had to ask myself, what kind of person would leave his brother hanging?  I didn't want to donate my kidney, I had to.  There was no choice in the matter.

I was pronounced the pillar of mental health.  And let me tell ya, that was a load off my mind.

And they presented me to the transplant team to donate my kidney and this team went over my entire medical record line by line.  I flunked.

They had concerns.  They told me that there were two things.

One was that I was a fatty.  One of the things that raises a red flag is that you can't have a person with one kidney becoming pre-diabetic as diabetes really can hurt your kidneys.  So it wouldn't do anyone any good for me to donate a kidney and then need to receive a kidney myself.  Plus, my organs had fat deposits in them.  I had a fatty kidney.

The other thing was that they detected an abnormal amount of iron pooling in my liver.  When you're talking about donating a part of the organs that filter your blood (Think of a car's air and oil filters.  When they clog up, things go wrong with the car.) you need all of your filters working well.  And this unusual pooling of iron - They described it as the opposite of anemia.  My blood was really rich. - could be genetic or something else and they needed to know what.

It was explained that this pooling of iron would have otherwise never been detected until it killed me.  A treatment for the condition is to simply donate blood regularly, so my body would have to use up the iron to make more blood.

The cause, sometimes, is alcoholism.  They tried to be nice about it and say some north-western European cultures (read: Irish, which I am) tended to have this genetic predisposition.  But they wanted to get to the bottom of this condition.

This made me feel lousy.  I felt like I'd failed.  I wasn't good enough.  And, worse, that the bad decisions I'd made my whole life, drinking too much and overeating, had robbed me of the chance to help my brother.

So in November of 2013 I underwent a liver biopsy to get to the bottom of this condition.  It turns out I did not have this genetic predisposition.  So it was something else.  They said, despite my other "numbers" (you know, cholesterol, blood pressure, all that) being good, this was a worry and I was denied a second time to be a donor.

So they put me on the wagon.  No alcohol for three months.  A prick's trick, to be sure just before Thanksgiving and covering both Christmas and New Years.  And if I came back in three months with no alcohol and I was improved, maybe then I could donate.

This past winter was a hard one.  It wasn't that I'd given up drinking.  Somehow over time the television commercials convince you that you love beer.  I found giving it up was easy.  The hard thing was the walking.

I decided I'd walk three to six miles every day all winter long until this next test.  Weirdly, I didn't lose any weight.  And it got cold this winter.  And every day I'd look at the thermometer and look outside and ask myself the same question:  "Do you love your brother?"  And I would leave my house wrapped in infinite layers regardless of the conditions because the answer to the question was easy.

And man, I was strong on my pegs by the end of it.  Even at 215 pounds, I felt like a new person.  I could run with the indoor soccer kids for the first time in years.  And I went back for more testing.

On February 18th of 2014 - three months to the day from my last refusal by the transplant committee - I went back and my numbers were spectacular.  I was pitched to the committee a third time and was accepted.  All that remained was a final (blood) cross-match, which came back good.

From the date I was told the final match was good to the time of the transplant was three weeks.  It could have been sooner, but it was a matter of personal schedules.  And on March 13, 2014, my big brother and I went down to UPMC Montefiore and shared an operating theater.

We are about a month or more post-op now, and I want to tell you that Chuck and I are doing pretty well.  He came home only two days after I did and he has not been to the dialysis center since.  But there was so much more to this experience I want to share with you.

Next time, we'll talk about the wonderful "Family House" set-up they have at UPMC and I'll want to introduce you to the amazaing community of people there; people whose stories make mine pale in comparison.

I'm also planning posts on the procedure itself and the recovery.  But for now, I want to leave you with this:  This Million Dollar Work-Up has been the most comprehensive 50 year old checkup anyone could possibly imagine.  I have discovered health issues that could have killed me, but that now I can do something about before it's too late.

So, while I did not "sell" my kidney, I did get paid.  I have never received such royal treatment in any healthcare scenario nor have I ever learned more about myself.

And I think back to my visit with Chuck at the dialysis clinic on Turnpike Avenue in Clearfield, Pa.  And I think of all those other people who were there and I wonder how they are.  Have they been as lucky as me and my brother?

And I think to myself: shouldn't everyone of that certain age around 50, when you're going to get that checkup... Shouldn't everyone consider contacting a donation coordinator and beginning the evaluation process?  Your road will probably be less complicated than mine.  And you will get the most thorough checkup of your life.  Maybe you donate your kidney to a stranger and become what they call an "altruistic donor," but how lovely is that?  You can save someone.  At the very minimum, you are doing at least one truly good thing with your life.  In the final accounting, you will have helped someone else.

You do get paid.  In ways that are far richer than you might think.

So if you're one of those people of a certain age whose reckless days are maybe behind you;  if you need to go and get that 50 year old check-up and don't have the kind of health care plan that will do you much good; if you know someone who needs help, be it liver or kidney donation perhaps, or better still even if you don't... I can tell you there are a lot of souls waiting for help...  then I offer you this phone number:  1-412-647-5800.

When you call the Thomas E. Starzl Transplant Clinic, you get one of those messages about pressing 1 or pressing 2, but all you have to do is wait it out.  They don't have an option for "Person who wants to donate a kidney."  So you wait it out and a real person answers and you tell 'em you'd like to become a living donor.

When you meet Mary Gorinski or one of the other donor coordinators, you will be better for the experience and, likely, so will someone else.

Now Hear THIS!!