Wow, today is an interesting day. I went to the hospital yesterday (june 30th) and had some standard pre-operation appointments. Blood labs drawn, a chest x-ray and an EKG. I have done the preceding stuff so many times that it was no big deal. Then I met with my surgeon. He wanted to start me on my immuno-suppresive drugs today, so at 9am I took my first one. I began to read the warnings that come on the print out from the pharmacy. I was amazed that this is by far the most dangerous prescription I have every taken. But I know it is for the good.
Today it felt real. Today it felt like the surgery is actually happening soon. I am now wearing a bracelet that has a number on it to match with the blood bank, just in case. So I have one more appointment on Friday (july 2nd), and once that is completed I will be waiting for the 6th. I am starting to feel excited about this process. Before it always felt so far away, but now it feels close.
So as I realize that the surgery is coming closer, I have a lot of history to cover.
The last post I had written that a nurse named Kelly had introduced a new modality of dialysis to me. Home dialysis. I didn't know that I could do dialysis at home, but when she began to tell me about what it was like, I wanted to know more. Kelly told me that I would actually move from dialyzing 3 days a week to 6 days a week. But each session would be shorter, around 2-2.5 hours, which essentially came out to be the same amount of time as going 3 days a week for 4-5 hours. She also told me that we would have all the items shipped to our house and loaded by a delivery man and once a month we go into the clinic and meet with the dialysis team and doctor.
The main difference with home dialysis was that there were no nurses around to "do dialysis" for me. My wife and I would have to do everything. Draw our own labs, set up a machine, and what I was most worried about, sticking the needles in my arm. Sarah and I talked about it at home and decided to go to an informational meeting.
We drove over to Home Dialysis Therapies of San Diego (HDT), near Rancho Penasquitos. We met with the director, a very nice woman named Denise. She told us all about the home dialysis, the benefits, the potential issues that can arise, and showed up the machine.
We decided to go for it.
This was possibly the best dialysis decision I ever made. We had to start our training, which meant for 2 weeks going in at 8am and actually learning how to set up the machine, and learning about all the steps of dialysis, while I dialyzed. It makes sense really. I had to sit there for 2 hours on dialysis anyways, might as well learn about it.
I remember feeling like there were 100 steps to follow to set up the machine. But we had a book that laid out every step that we needed to follow and over the 2 weeks we got better and better. We finally graduated from the class. Which meant that we had to move the operation to our home. My brother came over to help set up everything and get us situated. We had to create a place to do dialysis that would keep our 1.5 year old Calvin away from the machine. The first day on our own, our training nurse, June, came over to help us with the first time. I remember feeling encouraged because she had trained us so well that when she came over to watch us set up, instead of watching our every move, she sat and enjoyed a cup of tea while we set up. She basically was saying, "you got it covered, good job."
The last year and a half has been such an improvement for me on dialysis. Because of the frequency of the dialysis, I got to take fewer meds, my diet changed drastically. When I once had to eat low phosphorus and potassium, I was actually once told my dietician Debbie that I needed to eat more potassium. Hallelujah!!! Finally I could eat the tasty stuff again. I remember wanting to eat any vegetable I could because it just tasted so good to have food with potassium in it again. And fruit, yes, the fruit was missed greatly. Today still I just want to eat fruit as my dessert. Goodbye cakes, ice cream, pies....I will take strawberries, blueberries, blackberries, kiwi, or whatever kind of fruit I can get.
Even though home dialysis was better for me and I felt much better, it was still dialysis. Six days a week for 2.5 hours I sit at home on the couch, setting up our machine after we have tucked the boys into bed. Sarah and I try to make the time worthwhile, often beginning the time with a couples devotional together, reading scripture, or praying for the boys and other friends and family. But I would eventually end up watching TV or falling asleep. Thankfully at the end of treatment I would be able to go to bed afterwards and sleep off any of the negative effects that might be caused from the dialysis.
I tried to not really ever think about all the things that I missed in the evenings because of dialysis. On one hand I may miss Padres games with friends, surfing the evening glass off in the summer time, having friends over at night to just talk and grow our friendship...etc, but on the other hand the dialysis is keeping me alive. I am thankful that I was born when I was. Forty-five years ago there was no dialysis and if your kidneys failed, your life was over. So I am thankful, very thankful.
The best long term solution for myself was not dialysis, but a kidney transplant. Science has come a long way in the field of transplants. So the first thing I was told to do was get on the list for kidney donations.
There are two types of transplants I could get. One is called a cadaveric donor, which only comes when a person has died and they are an organ donor. It is a great thing to have the pink sticker on your driver's license, but even so with so many people saying they are willing to donate organs, the wait in San Diego for a cadaveric kidney is 4-5 years. Amazingly, across the U.S. there are 82,000 people waiting for a kidney donation.
The other type of donation is a living donor. This is where someone who is alive decides to donate one of their kidneys. The human body is an amazing thing. Someone once told me that a person with two fully functioning kidneys have 240% of what their body needs in kidney function. So if a donor gives one kidney, they drop to 120% of their body's needs, which is still more than sufficient. My kidneys are at 6% function.
So a couple of months ago, a guy from our church heard my story and decided that he would get tested. I have had multiple people get tested to see if they are a compatible match but for one reason or another no one had been approved to donate. It might have been because of blood types or health reasons of their own, but as a result I never got too excited when someone would get tested in the beginning, because I had expected that they wouldn't be a match.
But that brings me to the present. This guy who was getting tested progressed through the tests relatively quickly. I kept getting reports from him and mutual friends that he had passed another test. It actually began to get exciting to hear about what had happened from the previous week. And now I am just a couple of days away from the actual transplant surgery.
At this point I am happy to have more tests done, and the donor and I actually joke about how many vials of blood we have drawn every time we go to the hospital.
"This time I only had seven." "Oh, that is nothing, yesterday I had fifteen!" We go back and forth and talk about the tests that we each have to do. "I got another EKG today followed by an ultrasound." "oh yeah, I had to go in and have ANOTHER physical, that is my third one." I am thankful for all the testing, it makes sure that the hospital is checking every possible angle, but it is comical at times too.
Well my timer just went off again. A second dose of immune-suppressing drugs coming in. I wonder what my body is really going through with this drug? Is it fighting the effects? Is it trying to stop this drug form doing its job? I bet if my body really knew what was going to happen on July 6th, it would be celebrate. I know I am celebrating.
Showing posts with label mikes kidney story. Show all posts
Showing posts with label mikes kidney story. Show all posts
Thursday, July 1, 2010
Monday, June 21, 2010
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.
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.
Thursday, June 17, 2010
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.
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.
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