The Great Kidney Adventure

Today marks the 6th anniversary of a kidney donation journey I began in August of 2016, which culminated in a surgery on December 14th.  Shortly after that journey, I decided to write out some notes about my experience.  Enjoy!

Part 1:  The First Steps

Knowledge that Shouldn’t Be There

Prior to all this mess, the only time I got close to a kidney donation was when my buddy Daniel Willing’s dad needed one. Ultimately Dan’s uncle chipped in the needed organ. 

I first heard about Diana’s need for a kidney when my wife saw the Facebook group which was appropriately named, “Find Diana a Kidney.”

An odd thing happened when I saw the group. In some circles it is called a “gift of knowledge”. It is a gift of the Holy Spirit by which you discover knowledge in your head which you have no business having. Like a file on your Desktop which had been hidden until that moment. 

When I saw the group, I knew this was a task I was meant to complete. That included knowledge that I was a match and that there would be no obstructions. All that was needed was paperwork, bloodwork, and will. The knowledge was simply.... there.

That meant when they thought they had found an abnormality in my liver, my response was sheer annoyance. I knew it would be nothing in the end. And it was. Because it had to be.

Taking the Test

So I said to myself, “Eh, what are the odds. I may as well take the compatibility test just to see.”

I took it - and both to my utter surprise (and non-surprise), I was a “good match”. My first reaction was, “Ohhhhh.... shit.”

Well, my wife was on board. So the only question was: Do I do this thing or not?

Now What?

Two processes began. 

First I started seeking out people who had also done this. Did it cripple them? Did they regret it? The best reaction I got was from a gruff woman in the manufacturing department at work. She replied, “Ehh... I didn’t even quit smoking.”

That woman gave up her kidney to an abject stranger who had minimal chances of surviving the surgery. He died 5 years later. Her conclusion: “I gave a man five years. Cost me close to nothing. No regrets.”

The other process was ... talking myself out of it

I thought of roughly a half dozen excuses as to why I really couldn’t or shouldn’t do the Thing. But upon considering, using any of those excuses would require betraying principles which I said I believed in.

So what it ultimately came down to was: “I am afraid of the suffering which would be involved in doing this very good and necessary Thing.”

In other words; old fashioned cowardice. 

The Final Decision:

So in the end I had to ask myself, “In 10 years, I will look at one of two Steve’s in the mirror. The first Steve played it safe and let Diana continue on dialysis toward whatever end awaits her. The other Steve did what that chain-smoking lady was willing to do for a stranger. Which Steve do I want to see in the mirror?”

I’m not a hero. I’m not even a particularly nice person. It would be a remarkable and selfless action, but one undertaken by a rather typical sinner. The people who do this sort of thing are - in fact - normal people. People who let the camel’s nose into the tent and quickly find that denying the rest of the camel would mean denying a part of themselves.

I knew the Steve I wanted to be in 10 years had 1 kidney. 

So that was that.

Afterward:

After it was all over, one of my nurses wanted to know about the decision. I recounted to her about the infused knowledge and how I knew in advance that I was a match, and how the task was meant for me. She looked at me with sincere curiosity, “That’s so weird. What is that?”

At that moment another nurse entered the room and the question went unanswered. It remains unanswered. For her, my story will simply be one of the more bizarre things she’s encountered as a nurse.

As Hamlet said to Horatio: “There are more things in heaven and earth than are dreamed of in your philosophy.”

Part 2:  Getting to the Table

Well, you can’t give away a kidney away on a whim. So what exactly is involved in doing this?

The Camel’s Nose

The first thing you do, as I said last time, is say, “Ehh… what are the odds. I’ll take the test.” It feels like such a small step, but in retrospect it was everything.

It begins with calling up the transplant center and giving them the name of your intended recipient. They send a package to your address with three vials for blood, a return envelope, and a set of instructions. You take these to the local Blood Center. They take care of the rest.

This is the first of many, many times you’ll be giving blood samples.

The three vials are for the three compatibility tests:

• Blood type
• Tissue type
• Blood Interaction test

The latter is the most amusing test to describe. They literally put my blood into a petri dish with hers and see if they try to kill one another.

A couple weeks later I got the results: I was a “Good match” – the best that can be hoped for from a random member of the population.

From there you have a big decision to make. (But we talked about that last time)

Starting a Collection

The next thing they do is mail you an order for a 24-hour urine collection test. The goal here is to see what your kidneys are doing in a standard workday. 

This is a little trickier than it sounds. 

If you work outside the home, chances are your employers will not tolerate you carrying around a jug of your own urine throughout the day. This means you either take a Friday off and turn it into a lab on Saturday morning – or you do it on Sunday and drop it off first thing in the morning on Monday. Either method means burning vacation time to piss into a jar.

Whatever you do, don’t stop at 18 hours like I did. They’ll make you do it again.

The Big Meet and Greet

Now they want to meet you. So prepare to burn more vacation for the BIG EVALUATION DAY AT THE HOSPITAL!! 

I had been warned this would be the most complete physical I’d ever received. They would get to know every inch of your body. 

What I got was… meetings. 

Facts!

For legal reasons, they’ve got to assume you have done no research into donating. That means you are going to sit through hours of informational sessions learning all there is to know about kidney donation. 

Here are three things I learned:

One, kidney donation does not put you into any elevated risk categories for diseases. What it does do is make those diseases more dangerous. So if Type-2 Diabetes was bad before (and it is) having it with one kidney is suicide.

Second, due to the asymmetry of the human body, they prefer to take the left kidney. This one could be done laproscopically, without cutting through any muscle. That means a much easier recovery.

Lastly, even under the best of conditions, Diana would not take my kidney to the grave. On the high side, a donated kidney like mine would last fifteen years before her immune system figures it out and attacks the organ keeping her alive. 

You Will Be.... You will be...

At one point I met with the surgeon – a very skilled man named Dr. Alvin Wee. He walked me through everything that could go wrong during surgery and all the things I would suffer in recovery. At the conclusion he asked me, “Are you nervous?”

“Yes,” I replied.

“Good,” he said. “That means you are paying attention.”

Motivations:

In any event, another purpose of these meetings is to make sure you are not crazy and not being paid. This is less of a concern when someone is donating to a family member, but they are particularly alert when dealing with non-kin donations.

They have seen people doing donations to advance business contacts. People have done it for sexual reasons. Others have done it because they were depressed and wanted to do one good deed before killing themselves. None of those could be allowed.

Thus. I spoke to a social worker for an hour and a half about my life, my motivations, my psychological history, and just about everything. One bizarre question she asked me than once was: “Do you expect you and Diana will be better friends after this donation?”

Think about that question.

If you just say “Yes”, it will sound like you’re doing this for some kind of social reward. But saying “no” would be totally bonkers. OF COURSE you will be better friends after this. I’d be a closer friend with a person if he loaned me his lawnmower. This is a damn kidney! 

So my answer was, “I cannot imagine this making us WORSE friends, but that is not my motivation.”

“Then what is your motivation?”

“To get Diana off dialysis. Period.”

Well, now comes the actual medical part of this medical examination. Chest X-Rays, CT scans, and so on. Apparently 1 in 750 people is born with one kidney and they never know. They had to make sure I wasn’t one of those folks before we could continue. 

Which, of course, I was not.

A Sanity Check

I mentioned before how they are required to be more discerning with non-kin donations. So the last specialist I was scheduled to see was a clinical psychologist. This meant using another day of vacation.

Much to the chagrin of many of my friends, I had never met a psychologist before. I was actually looking forward to whatever insights our conversation would reveal. 

It was the biggest waste of time imaginable. 

The questions began with me matching numbers to letters in sequence. Then the shrink gave me pictures of zoo animals to identify. Then came questions like, “Why is it important to bathe regularly?”

The meeting closed with me filling out a 100-question survey, all meant to establish that I have functional reasoning skills, am not suicidal, and have an optimistic outlook on life. 

This was the one time when I complained to the organ donation people about wasting my time. But they get audited just like everyone else. There was a box that needed to be checked.

A One-Piece Camel

The day of the surgery I arrived at the hospital at 5:45am for check-in. I was answering questions with machine-like efficiency. No jokes. No friendly bits. I was scared, and I needed to shut down that part of my personality to get through this.

They took me to a room by myself and had me get into my gown. I immediately began taking off my clothing with the nurses in the room. 

“You can wait for us to leave!” one said.

“It’s nothing you haven’t seen before,” I replied with all the playfulness of mud brick. 

They inserted my IV lines and gave me about a half hour with my family. Then they came back and began wheeling me off to the operating room.

For months I had been visualizing this moment. I’d wanted to say something memorable and manly before it started. Perhaps a quote from the Bible. Maybe I’d say something about living up to the legendary generosity of my father. 

I had just enough time to recognize the faces in the room when everything. 

went. 

black.

Part #3: This is my Body

This final reflection will be about the aftermath of donation. None of this is to trumpet my own supposed heroism – as my surgery was honestly less grueling than your average C-section. This is, again, just meant to record the experience for myself and anyone else who is interested.

Waking Up:

The surgery was on Wednesday the 14th of December. I needed my digestive system to be totally flushed for the operation, so I had to stop eating at noon on Tuesday. Then I had to take a bunch of harsh laxatives. 

To make THAT more tolerable, I had to cut my diet on Monday down to semi-solids and liquids. This meant on the day of the surgery I had not had a real meal in over 2 days. I was a very, very hungry caterpillar that morning. 

I told my doctor that all I could think about was an Applebee’s cheeseburger. He told me not to worry. The sedation would eliminate all of my appetite. I’d wake up and food would be far from my mind.

Well…. when I awoke at 5pm on Wednesday… the hunger was still there. It was now 36 hours since my last consumed calorie and I was feeling every bit of it. Like a fire burning at the pit of my stomach. The painkillers did nothing to dull it. And they couldn’t feed me because my digestive system was off.

Now, they had also hooked up an alarm to my blood-oxygen levels which erupted whenever they dipped below 70 percent. I could barely relax without the thing politely reminding me to breathe deeper. And it hurt to breath that deeply because my chest was now full of holes. 

So I stayed awake through most of the night doing breathing exercises, accompanied by the burning hunger.

Breathe. Breathe. Breathe. 

The fire burned long into the night.

Systems Offline:

As I mentioned above, one result of the anesthesia was the total shutdown of my digestive system. This meant that despite being hungry, my appetite would only let me have small bites. 

At one point I ordered up a scrambled egg. I worked on that thing for about four hours. One of the nurses had to insist on taking it away from me. The cream of wheat was more of a success.

The other thing was the loss of bladder function. I had been using a catheter for about a day and I guess your body forgets quickly. There are few things more disconcerting than feeling all kinds of pressure in your abdomen, knowing you need to pee, and your body just not responding. 

That system finally came back online – weakly – on Friday morning.

Get Your Move On:

In the surgery they cut you in five places. Four are point incisions. One for a snake-cam. Two for instruments. The last is to insert gas into my abdomen. They literally inflate the abdomen to give the surgeon more room to work. The final cut is a five-inch line at the base of the groin – that’s where they extract the organ.  

The morning after waking up (Thursday), the nurses said they had to get me up moving. That meant leaning forward and using the recently sliced-open abdomen. 

My attending nurse raised the back of my gurney, grabbed me by the hand – and pulled. 

I was not able to get up... but I did let out a great peel of agony which was heard down the hall. 

The nurse opted to give me a little time before we tried again. So as I sat there, bug eyed and panicked from the attempt. I turned to mother (who had been hesitant about the operation all along) and choked out the words, “I did the right thing.”

Eventually they did get me out of bed, but my walking was very shaky and I had to use my IV stand as a support. Over the coming days my main project was to improve upon this.

The Pill Cycle:

I had originally thought my stay in the hospital would be like an extended holiday. All I’d be doing was writing and resting. In retrospect I kept very busy. 

• My activity cycle worked like this:
• Take a pain pill. 
• Go for a walk while it is kicking in. 
• Fall asleep (under influence of pill).
• Wake up and go for a walk before pill wears off.
• Sit down and wrap myself in a blanket as I come down off the pill.
• Repeat.

You may notice that the whole thing is centered on the use of painkillers. Those things were a necessary evil in the early stage of recovery. 

The worst side effect of said pill was the “come-down” period. That was a BAD trip. The pain would come back and it was accompanied by the sensation of freezing cold. I remember one episode in which I was shivering uncontrollably in a chair as Kari held my hand. 

That was my lowest point. It was bad enough to make me say through chattering teeth that I regretted donating the kidney.

Anyway, by Saturday afternoon I was walking (slowly) on my own, peeing on my own, and ready to come home. My father suggested they may grab a wheelchair to take me down to the car. 

But after all of the debilitating things I’d gone through during the previous days, it meant the world to me to walk out of the hospital. I insisted to Dad, “I will not be wheeled out of here. I am going to exit this hospital on my own two feet - like a man.”

As I was checking out they gave me a bottle of the pain pills, which I vowed to never use.

The First Week Home:

I was told beforehand that after 3 days I’d be back at 50%, and after a week I’d be at 75%. After having gone through it myself, I have no idea what those estimates even mean.

When I came home I felt like someone had inflated an inner-tube around my waste, I was eating small bites and feeling stuffed for hours, and I was walking with the assistance of a cane. What percentage would you call that?

Over the next few days the inner tube shrunk to a baseball and the cane ceased to be necessary. My appetite returned after a week. At that point it had been 10 days since I’d eaten a normal meal. I had lost 15 pounds. Ten percent of me was gone. I’m still trying to figure out what to do about that. Perhaps most of it will return in time. 

Except for a certain half a pound. That last bit was working hard elsewhere. 

Speaking of organs, I had never been so aware of my internal organs as I was in the first 1.5 weeks after surgery. Whatever spiderwebbing keeps those things in place seemed to be gone. I could feel them swaying like a bunch of grapes dangling on a vine. That phenomenon was what made it difficult to sleep or ride in a car in the first week. I couldn’t lay on my side without feeling like I poured out a basket of fruit inside myself.

Lastly, I mentioned above how they inflated my abdomen during the surgery. That gas gradually dissipated over the course of the first week. I was told it would be painful, but it wasn’t. No… it was more … alarming. To put it mildly, the dissipation of that gas led to new experiences which I did not know were anatomically possible.

You really don’t want to know. 

The Road Back to Normal:

The second week after coming home could be best summarized as: “Surgery is not a massage”.

Most of the unique side-effects of the kidney donation surgery were over. All that remained was cramping in my sides and pain from the incisions. The remedy for that was walking – and lots of it.

And that’s roughly where things stand today. I’m still a bit sluggish, a bit sore, sleeping is still weird, and I have not gone on a run since before the surgery. But it’s only a matter of time.

A Journey, Considered

Looking back, I have to ask… what has this really cost me?

In a few months the discomfort of the surgery will be just a memory. Beyond that, I’ve lost 30% of my kidney function. I can never take ibuprofen again. I’ve got to drink more water than I did before. And certain conditions – should I get them – will be more dangerous. 

But what did I give? Diana is doing well. Lefty is working hard for her. She’s looking healthier, eating certain foods again, and sleeping well for the first time in a year. She has her life back.

Only a madman laughs in the face of danger. A sane man looks at danger and wishes the cup would pass from him. But when there are no other options, a man looks at danger and says, “This is my body - given for you.” I wanted to be that sort of man.

Sometimes the possibility of losing my remaining kidney keeps me awake at night. Will I someday find myself on a donor list? If that happens, what will have become of all the prayers of my well-wishers?

But if I have learned anything from this experience, it is two things: First, how innately skeptical I am of prayer. And second, how utterly reliant I am upon it.

All told, I’d do it all again.