The preparation for a good change.

Something I had to figure out when I had dialysis at the clinic was scheduling. Everyone wants dialysis to work with their schedule, but sometimes that doesn't happen. One thing I had going for me was that I was one of the few people who actually worked a full time job, which meant that I got to pick the time that best suited me. So I chose the earliest shift possible, which meant arriving at 5:45am. It was always so quiet on the freeway at that time, most people just waking up, but none of the "good" radio shows were on at that time. They all started at 6.

When I walked into the clinic I sat in the waiting room and waited patiently for the nurses to open up the doors for the morning shift. Small conversations took place, but nothing really of importance. Glances were exchanged between people, and if the nurses were late we all would shake our heads as if to say, "What is taking them so long?" We would all hear and watch as medical transport vehicles would pull up and drop off patients. I guess some patients were unable to drive, in a wheel chair, or didn't have someone to drive them. I remember being thankful that I could drive myself and that I had people at home and at work that asked how I was doing, unlike the number of people who only left their nursing home once a day, to go to the dialysis clinic.

When I finally got to go in, I had a routine that I followed every time. I would walk through the door and look at the pictures displayed up on the wall that were supposed to encourage us as patients. The pictures were usually of an event that had been held at the dialysis center, or of a holiday. I understand that the center was trying to help, but I never enjoyed seeing pictures of patients on dialysis while nurses stood behind them dressed up for Halloween. After the pictures I would look at the Kt/v chart. I still don't know what Kt/v stands for, but I know it measures how well you dialyze. They only posted results once a month, but I still looked everytime to see if there were new results. I wanted my Kt/v to be higher, but it never really rose. When you have a low Kt/v, there are a couple different elements the doctor can change to make it better: a different filter and extended time on the machine. I started out at 3 hours on the machine, and once a month the doctor would come in, look at my results, and increase the time on the machine. I remember feeling crushed every time he would raise it by 15 minutes. It felt like a defeat every time. I ended up at 4 hours, which translates into 5 hours by the time I got hooked up and unhooked from the machine.

The other part of my routine was to weigh myself before the treatment. Since one of the functions of dialysis is to remove excess fluid from your blood, everyone tries to find their "dry weight." The dry weight is how much you weigh without any excess fluid in your body. Once you find the dry weight, every dialysis session tries to get you back to the dry weight. Every thing is done in kilograms, and for a guy who grew up learning about pounds, kilos made no sense at first. It was common, especially on a Monday, to be 4 kilos over the dry weight, which meant that over the next four hours, 8.8 pounds would be taken out of my body. Trust me, that is no picnic. You feel pretty horrible after losing that much fluid, and your blood pressure, heart rate and even the size of your blood vessels go through some dramatic changes as a result. I would try to be as light as possible during the weigh-in, taking off my shoes, sweatshirt, and emptying my pockets to get the weight down.

Everyone passes the time differently while they sit on the machine. Most watch TV or sleep. I tried reading and it worked for awhile, but eventually I would end up watching TV too. My favorite channel was the NFL channel, especially during football season. Replays of games and highlights seemed to pass the time quickly. But when it was not football season, I could only take so much of training camp or reports about rumors of trade talks or hold outs.

Each person is supposed to bring headphones to listen to their TVs, but rarely did anyone bring them. Which meant there was a small audio war constantly going on in the center, with each person turning their volume up to avoid hearing other programs. Thankfully there was a small volume controller that was wired to each chair that had a speaker on it to listen to your show. Most people kept the controller near their chair and had their volume turned up all the way. I found that if I put the controller on my shoulder, I could keep the volume at a low level and still hear the TV. However, no one else did the same thing.

There was one gentleman who had the same TV routine everyday. I have no clue what he did for the first 3 hours, but the last hour was reserved for watching "The View," and falling asleep with the volume still very loud. I couldn't stand it, and believe me I am a very patient guy, but that I couldn't take. A happy moment was when I found out that my TV remote actually worked on his TV, and I would slowly turn his volume down while he slept. I tried to never turn it down too much at one time, but rather do it in small increments so he wouldn't notice. Eventually he would wake up and wonder why he couldn't hear his show. He would turn it right back up. All my hard work, reversed. I would have to wait for my next opportunity to start the process all over again. He caught me once or twice turning his volume down. I wondered if he knew I was doing it on purpose, though I shrugged it off as an accidental TV remote misfire.

I remember all the people who came and visited me while I was on dialysis. My brothers both came a couple of times, Eileen the High School Director from the church where I work, and my dad. I specifically asked my wife not to come because I didn't want our son Calvin to be in an environment where infection and sickness seemed to be frequent. My dad was the most frequent visitor, every Friday at 8am. He would stop at Carl's Jr to pick up a coffee and then sit next to me. Visiting a dialysis center can be awkward with all the machines, tubes, blood and noise in the room. My dad was always a welcomed visit. He would just sit with me and talk about what was going on and didn't seem to mind all the chaos around us. He would tell me what poetry he was working on, and we would talk about what was happening at the church. I was always amazed that every time he came he sat on a small stool for 2 hours. It looked to me to be about the most uncomfortable seat in the world, but he did it every Friday. Most visits were easy. I did my time on the machine, and we would go out to breakfast afterwards.

I recall one visit that I know he didn't like, and I didn't like it either. When you remove fluid from the body, it is possible to go too low, or too dry. When this happens, your blood pressure can drop and you can pass out. One Friday I had started cramping, which was the usual signal that I'd had too much fluid removed. The cramping is horrible. It is one thing to get a cramp in your calf, because you can stretch it out, even though it hurts like crazy. But it is a whole other thing when you try to stretch your leg and you cramp on the front side of your leg and the backside. There is no way to stretch your muscle, so you just sit there in intense pain. So there I was on the machine with my legs cramping severely. However, I knew it was trouble when my peripheral vision started to go dark. I don't know what my dad was saying, but I remember interrupting him and telling him to get the nurse. He must not have heard me very well, because he asked me what I said. I could feel my body getting ready to pass out and felt really hot, sweating even. "Get the nurse, QUICK!!" He heard me that time and then maybe noticed that I looked pretty bad. In previous visits I had told him to ignore my cramping and just let me deal with it, but this was different. I know my dad didn't like seeing the nurses come running and start doing things. Really all they do is put your feet up and add some fluid from a saline bag attached to the tubes. Instant relief. It is quite strange to be that close to passing out and then feel better with a little fluid. But to see your son in such a place must feel horrible too. With two little boys of my own, I hope never to have to witness that. Sorry, Dad.

At one of my dialysis sessions, the nurse started talking to me about getting another type of dialysis. The port that I had in my chest would eventually have to come out because the chance of infection was too high. There were two types of dialysis I could choose from. One was called peritoneal dialysis and the other was to continue with hemo-dialysis. Peritoneal dialysis is where they insert a tube into your abdomen, and your peritoneal sack, which holds all your organs together, is filled with a fluid that dialyzes your blood from the inside. Or I could continue with hemo-dialysis. After some research, I decided to go with the hemo-dialysis, mostly because I didn't want a tube permanently sticking out of my belly.

In order to stick with hemo-dialysis, I had to have surgery to create a fistula in my left forearm. This was a weird experience. I had to get an ultrasound of my left arm to measure how wide each vein was. They wrote with a Sharpie all up and down my arm with little numbers to indicate how wide the vein was, in millimeters. The surgery involved redirecting one of two arteries in my arm near my wrist, making it do a "u-turn" into my vein. Usually the arteries run into your hands, and then once the blood is used by your hands it returns through the veins back to your heart. By creating the fistula, I would have only one artery running to my hand. The other would begin to increase the size of the vein so that it would be big enough to insert needles into my arm for dialysis. When I had dialysis now, needles would be inserted into my arm in the same place every time to create a "button hole." The dialysis machine would hook up to these needles instead of the port in my chest. I like to think of the button hole being similar to a pierced ear. By inserting the needle in the same spot and the same way, it creates a tunnel of scar tissue which the needle travels down and goes into the vein. After the button hole is established, a dull needle is used instead of sharp, and it is surprisingly easy to get the needles in.

After my button holes were established, I met a nurse named Kelly who would change my life for the better.

New things to me

My new diet was odd. The diet that I was put on, the kidney diet, I was told is the second most difficult medical diet to maintain, only the diabetic kidney diet is more difficult. I had to eat low levels of phosphorus, potassium and fluid. The kidney is an amazing organ, it takes minerals and maintains the correct level you body needs. When you kidney doesn’t work, many minerals that your body needs can become toxic if you get too much of them. Phosphorus is in almost everything you eat, but it is a big molecule and science has created a pill that bonds to the phosphorus molecule, making it too big for your body to absorb. Potassium is critical to heart function, but too much of it can either speed up the heart too much or slow it down too much. I learned that potassium is one of the things they inject when they give a lethal injection, which makes you really want to watch the level of potassium you eat! But there is no pill to prevent potassium from being absorbed into your body, so you must control it with diet. Basically, it means eating nothing healthy…wheat bread, gone. Vegetables, gone. Fruit, gone. However, I could eat unlimited fats and sugars. Great, unlimited mayonnaise and jelly beans (this is why the diabetic kidney diet is so hard, you can’t have the sugars). The third restriction was fluid. The kidney, as we all know, processes any fluid we drink and whatever the body doesn’t need, it passes to the bladder. I was told to only drink 50 ounces of fluid per day, this includes anything you drink, ice, watermelon…anything that has fluid in it. I ate a lot of plain chicken and white rice at this time in my life, but eating the same thing over and over again gets tiring. The doctors are afraid that on this diet you won’t get enough calories, so you eat sweets to get your calorie count up. This sounds awesome, but trust me you get really tired of eating sweets all the time. My personal favorite was smarties, a small chalky candy that comes in a roll with about twenty little flavored round pieces. However, I quickly got tired of smarties too. I wondered what the dentist would say?

My new schedule was odd. Monday, Wednesday and Friday I would wake up at 6am to drive to the dialysis clinic where I would sit for three hours. I was joined by about 40 people each day that had the same schedule as I did. Most of them spoke Spanish, which made conversation difficult. Como se dicen “dialysis” en Espanol?

Although no one really feels like talking, anyway. Even though you are in a “community” room, you just want to sit in your chair with your TV remote or books and live in your own personal space for three hours. I found that most people sleep, however after experiencing the effects of dialysis on the body, most people don’t choose to sleep, they are exhausted and must sleep.

I had decided that I wanted to be productive with the time I had to sit there. However, not being able to move my left arm made simple tasks like reading, working on a laptop, or writing an arduous task.

I stole glimpses at the tired Hispanic man to my right who only had one leg, wondering what had happened to the other. I watched the African-American woman across from me get hooked up the dialysis machine from a port in her leg. She seemed to reject the idea that she needed dialysis, often coming into the center with a 42-ounce Coke from McDonalds. Although the coke looked good, I knew there were extremely high levels of phosphorus and 42 ounces in one shot? That is almost 90% of my daily fluid total!

I quickly learned most people in the dialysis center were there as a result of diabetes. Really? I knew nothing about diabetes. I just thought you had that if you ate too much sugar as a kid, and I didn’t know what it really meant if you had it. But I soon saw the effects of untreated diabetes. The disease attacks the kidneys, which results in the need for dialysis, and if it continues, it literally begins to eat away at the body. As I looked around, there were many people who had different amputations, mostly the toes, feet or legs, from what I saw. Thank you, God, that I don’t have diabetes, but, God, I pray for those that do.

The strange thing about dialysis is that you could drive past a dialysis clinic and never know. They always give the name of the building something like “DaVita” or “medical center.” They also keep the blinds drawn all the time, which makes looking out of them very difficult. I never knew which was worse, having people walk by looking in at you on a machine, or not being able to look out a window and see what the rest of the “normal” world was doing.

I learned what a nephrologist was: a kidney doctor. I had an Indian doctor who was very difficult to understand. Hearing medical terms in that thick foreign accent made it even harder to learn what he wanted me to do. I remember wanting to record the conversations so I could go home and listen to them again and try to decipher what he was saying. Thankfully, I had a very nice nurse who would come and translate the orders that were written down so I knew what was coming next.

The doctor prescribed several things while I was in the dialysis center. The first was Epogen, a synthetic hormone that produces red blood cells, a normal function of your kidneys which I no longer had enough of. One problem though, Epogen is on the list of banned substances for the NFL, so my chances of playing profession ball went from “fat chance” to “fatter chance.”

The other new prescription was iron. I remember this one because when they injected it into my body through the machine, I could instantly taste and smell it. It reminded me of black licorice in a way but also had a metallic sensation too. The syringe looked like it was full of crude oil and seemed thick, although it wasn’t.

At the same time as all this was going on, I accepted a call (Presbyterian for “job” that God has called you to) at a church in San Diego. Of course I had told them about my medical situation and that part of the deal was that they would have to accept that I went to a dialysis clinic three days a week. They were thankfully willing to partner with me and I accepted the position.

It seems that when you are married and have a child that moving becomes a much larger task than it used to be when I was single. I used to just throw everything in the back of the car as many times as I needed to and drove it to the new place. With a wife and a little baby boy, we rented the biggest U-haul you could get and took half the day to load our tiny apartment into the truck. Then we drove, caravan style from Pasadena to San Diego. I was so thankful to be back in my home town, it was just one thing that I knew and felt comfortable with in an uncomfortable and unknown life.

Dialysis Began.

In May 2007 I was working in Los Angeles and knew that there was something wrong. I had terrible headaches, my heart would race with light activity, my ankles were swollen, and then there was a dark spot in my vision.

I remember going to the doctor, a doctor that I had never seen before and picked at random, and getting my blood pressure taken. The doctor looked nervous, and that is never a good thing when your doctor looks nervous! He sent me the emergency room at Huntington Hospital in Pasadena, a busy Los Angeles hospital that had 24 hour police dogs to smell drugs and explosives. I had neither. I had expected to sit in the waiting room for awhile, after all I wasn't in critical condition. Or so I thought. After telling the triage nurse why I had come in, another nurse took my blood pressure.

Nurse: "Do you mind if I take your blood pressure in your other arm?"
Me: "Sure, no problem."

Then the nurse picked up the phone and started telling someone on the other end of the line my information.

Nurse: "We have a 33 year old male with BP of 260 over 180 in both arms"....pause....Room 1. You got it."
Nurse: "Come with me sir."

This is when I knew that something was really wrong. You don't go to the front of the line in a busy hospital for nothing. Suddenly a team of doctors, nurses, machines, and needles descended on me. A bombardment of questions and health history.

Doctor: "What drugs are you on?"
Me: "I am not on any drugs."
Doctor: "Seriously, what drugs have you taken?"
Me: "I am not on any drugs, I am studying to be a pastor."

Well, it was only a matter of time before the blood that had been drawn made it to the laboratory, the lab techs did whatever they do, and the results came back to my curtained "room" with a doctor telling me he had "bad news."
I had hoped to never hear those words from a doctor. But I just did.

Doctor: "Your kidneys are failing."
Me: "What does that mean? How did that happen? What could have caused that?"

No matter how many questions I asked, how many answers I heard, it couldn't bring any change to the sinking feeling I had in my heart and stomach. It is a horrible feeling to know nothing of what is going on and what is going to happen.

I was brought to the ICU. Over the next six days I was visited by my wife, family, and friends. I had pictures of newborn Calvin taped to the walls. I learned about Immuno-globulin A Nephropathy, or IGAN. I had a port-catheter inserted into my chest that had a tube near my heart. I had a kidney biopsy. I didn't know where this was going.

Me: "Lord, why is this happening to me? I am just getting ready to start my ministry as a new pastor. I have a 6 week old son. Why is this happening to ME?"
Lord: ".........."

It is interesting how sometimes the Lord appears not to answer. I wanted a voice to say, "oh, I made a mistake. I will now heal you." But that answer did not appear. What did appear was lots of prayer asking for that answer to be healing.

I went home with prescriptions I couldn't read and started a life I knew nothing about. One morning I got up at 7am and drove to a place I didn't know existed. I walked into a waiting room full of people I didn't know. I was escorted to a recliner with a machine I had never seen before.

Dialysis began.