Well it has been 2 months since my kidney transplant. Since then I have had my first of three scheduled biopsies, many, many, many doctor's appointments, and returned to work.
The best part is that everything is looking great. My creatinine is down to 1.7 and has slowly been getting lower and lower. All my other numbers look great too.
Still take 20 pills at 9am, 2 pills at noon, 3 pills at 6pm, and 7 at 9pm, for a grand total of 32 pills. It really isn't bad at all. Also I still drink 3 liters of water everyday, but even that is easier.
So I guess I will come back and update this blog, but will probably have some big pauses in between posts.
If you ever have questions for me, please contact me and ask. Especially if you are a person with Chronic Kidney Disease.
Blessings,
Mike.
Monday, November 15, 2010
Saturday, October 2, 2010
Life with a new kidney
First of all let me say this...Life without dialysis is GREAT!
I could really finish the post with that one phrase but I thought I would let you in on some of the specifics that have made it great.
My kidney transplant surgery was on September the 14th, 2010. That means that it has been 2 1/2 weeks since the surgery. And 2 weeks and 1 day since I was released from the hospital's care and went home.
I remember coming home and every little bump in the road was pretty uncomfortable, but we made it. When we got home I saw my neighbors Howard and Barbara. They greeted me and helped me to the front door. I told Howard that I was so thankful that he had installed an elevator in the building 30 years ago. I was glad to be home.
The first week felt much like the hospital. Laying in bed, and when I had to get up to go walking or do something, there was always a creative approach to getting up with the least amount of pain. I figured out that if I kept my right leg as straight as possible and rolled over on my side, I could use my arms to push me up without using my stomach muscles too much. It must have been quite a sight.
The interesting part is that besides my incision pain and discomfort, I felt great. I really wanted to get up and do something, but the pain limited me for awhile. It also didn't help that one of our boys, Duncan, had a cold. And with my suppressed immune system at its lowest, I needed to keep my distance, which meant being confine to my room.
I asked the Dr. on one of my many follow up visits, twice a week for about 3+ hours, what my immune system was in a percentage and what it would be in 6 months. He told me that you really can't measure your immune system, but he could give an estimate about what it should be. He said that at my lowest it was around 30% , which isn't a lot. But after 6 months he estimated that it would be at around 75-80%. The funny thing is that I don't feel like I have an suppressed immune system, it just feels like normal. Which makes taking precautions something that I have to be constantly thinking about. I figure between the 4 of us in our family, we probably wash our hands about 100 times per day. This doesn't include anti-bacterial gel that we keep handy as well.
When I had the surgery done, I woke up to find a row of about 20 staples over the incision site. I do have pictures of them, but trust me you don't want to see them. Quite revealing. A day under 2 weeks from surgery I went into my bi-weekly appointment and the doctor said it would be okay to remove them. Most of the pain was completely gone, but those pesky staples were really quite uncomfortable. I was glad to get them removed. They were replaced by some tape that was supposed to last about a week. But the tape didn't keep things as secure as the tape, which introduced a new kind of pain, as my new skin and scar were getting used to holding everything in without the staple support. I started with 12 pieces of tape and I am down to three. The remaining will probably come off in a day or two.
So here is why life without dialysis is great. First of all, NO DIALYSIS!! Although there have been several times that both Sarah and I have slipped back into our old routine of putting the boys down and thinking we had to come and set up the machine, only to realize a second later that we didn't have to. Each time that has happened, we rejoice.
Sarah and I used to think when we didn't have dialysis anymore that we would have so much time to do all these great things. Projects around the house, painting (one of Sarah's great gifts), and anything else we could think up. But so far we have just enjoyed being able to go to bed early and actually get 8 hours of sleep. I am sure in time we will give way to other ambitions and start doing things that we have missed out on for the last 2 years. But it is wonderful.
Also on Thursday I was cleared to drive! That felt like restored freedom. Although I didn't have anywhere to drive to except the doctor's office. But tonight I made my maiden voyage with my new kidney. It wasn't too exciting, I went to Target. The doctor wanted me to drink 3 liters of water everyday to see if I can get my Creatinine down. It is just a tad higher than he would like. Creatinine is a natural product of your body that is produced from your muscles when they are used. One of the many functions of the kidney is to remove the buildup from your body. A normal guy's creatinine should be between .6 and 1.2. Different for women. The day I went into the hospital for my surgery, my creatinine was 10.0. So I went to target to buy water. They have these great 3 liter bottles and I know that if I finish that in one day I am on target. But it is a-stinking-lot of water to drink! Try it sometime, and you will be amazed. It is the equivalent of drinking 6 of the 500 mL bottles of water.
The most interesting part of not having to do dialysis for me is how great my body feels having a working kidney. I remember that when I was on the machine I could simply flex any muscle on my body and hold it flexed and it would immediately cramp. I didn't know why that happened it just did, and I don't know why I made my muscles cramp as often as I did either. I also had restless legs at night. I would lay in bed and feel the compulsion to quickly move my legs. It was similar to being in a concert hall that was full of people, but very quiet, and suddenly you get an itch in your throat. You try to ignore it, but the more you ignore it, the more you have to clear your throat. That is how my legs felt. But since the kidney has been living in my body, I no longer cramp and I no longer have restless legs. It feels great.
Also, and this is hard to explain, but my body actually feels fresh. It feels like a room after being cleaned. Or when you lie in bed with freshly cleaned sheets. It just feels fresh. I know that is a result of all the levels of stuff in my body that were way to high, but now being at normal levels, but man does it feel great.
I can't wait for the incision to be completely healed. Right now I am only supposed to lift things 5 pounds or less. Which means no holding my boys. Although the boys went from just Duncan having a cold, to both Calvin and Duncan having a more serious cold. So I am in isolation from them, but I do venture out often, but I must wear a mask to protect myself from catching anything from them.
It just feels so great having this kidney that works. There are about 100 other little things that make this such a great new chapter in my life. I am looking forward to seeing all the unknown areas that will continue to make themselves known to me as my body continues to heal and recover from the 3 years of dialysis.
I could really finish the post with that one phrase but I thought I would let you in on some of the specifics that have made it great.
My kidney transplant surgery was on September the 14th, 2010. That means that it has been 2 1/2 weeks since the surgery. And 2 weeks and 1 day since I was released from the hospital's care and went home.
I remember coming home and every little bump in the road was pretty uncomfortable, but we made it. When we got home I saw my neighbors Howard and Barbara. They greeted me and helped me to the front door. I told Howard that I was so thankful that he had installed an elevator in the building 30 years ago. I was glad to be home.
The first week felt much like the hospital. Laying in bed, and when I had to get up to go walking or do something, there was always a creative approach to getting up with the least amount of pain. I figured out that if I kept my right leg as straight as possible and rolled over on my side, I could use my arms to push me up without using my stomach muscles too much. It must have been quite a sight.
The interesting part is that besides my incision pain and discomfort, I felt great. I really wanted to get up and do something, but the pain limited me for awhile. It also didn't help that one of our boys, Duncan, had a cold. And with my suppressed immune system at its lowest, I needed to keep my distance, which meant being confine to my room.
I asked the Dr. on one of my many follow up visits, twice a week for about 3+ hours, what my immune system was in a percentage and what it would be in 6 months. He told me that you really can't measure your immune system, but he could give an estimate about what it should be. He said that at my lowest it was around 30% , which isn't a lot. But after 6 months he estimated that it would be at around 75-80%. The funny thing is that I don't feel like I have an suppressed immune system, it just feels like normal. Which makes taking precautions something that I have to be constantly thinking about. I figure between the 4 of us in our family, we probably wash our hands about 100 times per day. This doesn't include anti-bacterial gel that we keep handy as well.
When I had the surgery done, I woke up to find a row of about 20 staples over the incision site. I do have pictures of them, but trust me you don't want to see them. Quite revealing. A day under 2 weeks from surgery I went into my bi-weekly appointment and the doctor said it would be okay to remove them. Most of the pain was completely gone, but those pesky staples were really quite uncomfortable. I was glad to get them removed. They were replaced by some tape that was supposed to last about a week. But the tape didn't keep things as secure as the tape, which introduced a new kind of pain, as my new skin and scar were getting used to holding everything in without the staple support. I started with 12 pieces of tape and I am down to three. The remaining will probably come off in a day or two.
So here is why life without dialysis is great. First of all, NO DIALYSIS!! Although there have been several times that both Sarah and I have slipped back into our old routine of putting the boys down and thinking we had to come and set up the machine, only to realize a second later that we didn't have to. Each time that has happened, we rejoice.
Sarah and I used to think when we didn't have dialysis anymore that we would have so much time to do all these great things. Projects around the house, painting (one of Sarah's great gifts), and anything else we could think up. But so far we have just enjoyed being able to go to bed early and actually get 8 hours of sleep. I am sure in time we will give way to other ambitions and start doing things that we have missed out on for the last 2 years. But it is wonderful.
Also on Thursday I was cleared to drive! That felt like restored freedom. Although I didn't have anywhere to drive to except the doctor's office. But tonight I made my maiden voyage with my new kidney. It wasn't too exciting, I went to Target. The doctor wanted me to drink 3 liters of water everyday to see if I can get my Creatinine down. It is just a tad higher than he would like. Creatinine is a natural product of your body that is produced from your muscles when they are used. One of the many functions of the kidney is to remove the buildup from your body. A normal guy's creatinine should be between .6 and 1.2. Different for women. The day I went into the hospital for my surgery, my creatinine was 10.0. So I went to target to buy water. They have these great 3 liter bottles and I know that if I finish that in one day I am on target. But it is a-stinking-lot of water to drink! Try it sometime, and you will be amazed. It is the equivalent of drinking 6 of the 500 mL bottles of water.
The most interesting part of not having to do dialysis for me is how great my body feels having a working kidney. I remember that when I was on the machine I could simply flex any muscle on my body and hold it flexed and it would immediately cramp. I didn't know why that happened it just did, and I don't know why I made my muscles cramp as often as I did either. I also had restless legs at night. I would lay in bed and feel the compulsion to quickly move my legs. It was similar to being in a concert hall that was full of people, but very quiet, and suddenly you get an itch in your throat. You try to ignore it, but the more you ignore it, the more you have to clear your throat. That is how my legs felt. But since the kidney has been living in my body, I no longer cramp and I no longer have restless legs. It feels great.
Also, and this is hard to explain, but my body actually feels fresh. It feels like a room after being cleaned. Or when you lie in bed with freshly cleaned sheets. It just feels fresh. I know that is a result of all the levels of stuff in my body that were way to high, but now being at normal levels, but man does it feel great.
I can't wait for the incision to be completely healed. Right now I am only supposed to lift things 5 pounds or less. Which means no holding my boys. Although the boys went from just Duncan having a cold, to both Calvin and Duncan having a more serious cold. So I am in isolation from them, but I do venture out often, but I must wear a mask to protect myself from catching anything from them.
It just feels so great having this kidney that works. There are about 100 other little things that make this such a great new chapter in my life. I am looking forward to seeing all the unknown areas that will continue to make themselves known to me as my body continues to heal and recover from the 3 years of dialysis.
Tuesday, September 21, 2010
Hospital Experiences
Spending several days in the hospital is always an interesting experience. I thought I would share some my experiences with modern medicine. Of course most hospital time is spent just laying in bed and waiting. But there were several times that something special or out of the ordinary happened. These are the things that I thought were interesting enough to write about.
The Saline Jungle
The first step that is usually included in every hospital stay is getting an IV put in your arm and getting a bag of saline dripping. This is to keep you hydrated while in the hospital. It is usually the last thing to be removed as well. This was true for me as well. But I also got something additional. I can't remember the name exactly, but it was called something like a "triple J-port." This was a special IV that had three different lines going in at different points along the tube inserted into my neck. Yep, thats right, my neck. It went into the jugular artery and was several inches above my heart. This was to put a particular immune-suppressing drug into my system that was too hard on the veins in the arm. It needed to be immediately dispersed through my body. But in addition to that they had a very large number of other saline bags attached to me, all daisy chained together to go through the triple J port. The strangest combination of fluids going in was a dextrose saline bag, essentially sugar water. But to make sure my sugar levels didn't get too high, there was also a bag containing insulin. This counteracts the sugar. I thought I would show you a picture of my "IV Tree" with all the bags of saline. In this picture, I count 8 different saline bags, each with their own pump, plus the monitor hookups. Needless to say, I had a lot of tubes and wires going all over the place.
The Respiratory Therapist
One visit I did not expect or know about was the respiratory therapist. I did know the hospital staff would bring the breathing device that everyone gets in the hospital to avoid pneumonia, where you have to breath in and watch two little devices rise up to the top. But the respiratory therapist was completely different. This man came in to room about 7pm and introduced himself. He said he was the respiratory therapist and had a treatment for me to do. I watched as he pulled a little tube out of his pocket and began to fill a small container with greenish fluid. Then he hooked it up to an oxygen line and connected the two together somehow, on one end it had a mouth piece and the other end a round hole. Finally he hooked up a large blue tube to the end of the bottle of green fluid through the round hole. He told me to put one end in my mouth and breathe normally. Then he turned on the oxygen and I began my first breathing treatment. As I breathed in a smoky mist would enter into my lungs and when I exhaled the smoky mist would shoot out the end of the blue tube. It really looking liked I was smoking some new fangled pipe. I laughed to myself as I tried to blow smoke rings out the blue tube while the respiratory therapist wasn't looking. I was unsuccessful. This treatment was supposed to happen every 4-5 hours, so I had a total of five treatments while in the ICU. I would say the 4am treatment was the most unpleasant. Here is a dark picture of me having a breathing treatment. I didn't turn on a light and didn't have a flash.
The Exercise Class
Anyone who has been in the hospital overnight knows that you never sleep very well because almost every hour the nurse comes in and has to do something. Draw blood, check vitals, change saline bags, or check on something. I had one really great ICU nurse named Stephanie. She was one of the best nurse experiences I had. I spent some time talking to her every time she came in the room. It was like clockwork. Every hour on the hour she would come in, I would usually be awake or wake up. I had a slew of questions to ask her about my condition and what was to happen next. I have been reading this book by Malcolm Gladwell called "Blink." It is all about the split second decisions that we make and how we can know if we will like a person in the first moments of meeting them. Stephanie was one that I knew instantly that I would like. She just had a presence about her that was comforting and made it feel that every thing was going to be okay. So I almost immediately trusted her. I had her take pictures of all the things I couldn't see, like the IV in my neck, my staples on my belly where the new kidney had been inserted, and then asked her about all of them. Once it started to get late, I didn't have as many questions and slept a little more. But since I had taken so many naps throughout the day, I did wake up at 2am when she came in the room and had trouble going back to sleep. After she left I just quietly sat in my room thinking about a lot of things. After awhile I heard a lot of giggling and laughing going on at the nurses' station outside my room. Some people think it is impolite that doctors and nurses laugh while at the hospital, but I love it and know that it is needed. They are around so many stressful situations involving life and death that laughter can be a great stress reducer. But this was not one of those times. As I lay in bed trying desperately to listen and look through my plaid curtain that was pulled shut, I could see a very faint outline of nurses in the hallways. In the ICU, there are sliding glass doors for every room so you can really see out. I could see nurses lined up, walking past my room, but they weren't walking they were doing power lunges and raising their hands in the air. I don't know how many nurses were out there power lunging together at 2:30am, but I figured it was about 6-8 of them. After the power lunges came stretching and other calisthenics. I thought that was great! I don't know if that is a regular occurrence or not but I thought it was probably a good use of time at 2:30 in the morning to keep alert and have a good time. I tried to take some pictures of the exercise class, but they don't show much. Here is one of the pictures I took at 2:30am. I know it is really hard to see anything in this photo, but you could see the movements with the fluorescent lights in the background.
Room number: North 376
After the ICU I was moved to the regular floor of the hospital. The day after my kidney transplant I was actually up and walking around the hospital at 11am. Then I walked from my room in the ICU to room North 376. Scripps green hospital is divided up into North, West and South. Actually I have only seen West and North now that I think about it. I guess Scripps Green East is the fountain and coffee cart out front. Well, actually I made a stop before I reached N376, I stopped in N377. The room next door to mine. Because in N377 was my donor recovering from his surgery, minus one kidney. He was in his room, me pushing a wheelchair, a nurse following me with my IV tree. We were stoked to see each other. It was awesome. We were both still on pretty heavy pain killers, in fact we each had our own PCA. PCA stands for Patient-controlled analgesia, which means we have a little button that when it turns green we can push it and morphine is injected into us. So you can control your own pain level. After you push the button you have to wait a predetermined amount of time before the light turns green again. I had to wait six minutes before I was given the green light. Studies have shown that a PCA actually makes the patient feel much better and they use considerably less pain medication then when administered by a nurse. So after I visited with my donor for a couple of minutes I went to my room right next door. It was great having a friend next door to me. He would walk over into my room sometimes and once we actually ate our liquid diet dinner in the same room. It made the hospital stay and pain recovery fun. We were both required to take walks to make the healing process faster and get us moving. When one of us was ready to go for a walk, the first place we stopped was the other's room to see if the other wanted to go with us. We almost always did. So we would walk around 3 North, a short loop that has nothing to look at. But talking was great.
"How is your pain?"
"Oh, dude it hurts so bad when I get up or sit down."
"What about you?"
"Same here."
"Oh dude your green light just came on."
"Sweet!"
Little conversations like that were regular. But we had many topics of recovery and working kidney production to discuss as well. We laughed, even though it hurt, about the little things that had happened to us, or the lack of sleep we got. It made the whole kidney transplant and donation something more special. I realized that my donor and I have a special bond that is like no other in life. We all experiences different bonds in our lives, family, siblings, marriage, friends. But this is a bond that few get to experience. One sacrificing part of themselves, to give life to another. It is so special to me and I know that my donor likes it too. I will never forget this time in my life, and I doubt my donor will either. Even as I write this I feel that words do not express the bond. It is only one that can be experienced. It is like trying to describe what being a father is like to someone with out children. You just have to experience it.
Thanks dude for your amazing gift. I will be forever changed.
The Saline Jungle
The first step that is usually included in every hospital stay is getting an IV put in your arm and getting a bag of saline dripping. This is to keep you hydrated while in the hospital. It is usually the last thing to be removed as well. This was true for me as well. But I also got something additional. I can't remember the name exactly, but it was called something like a "triple J-port." This was a special IV that had three different lines going in at different points along the tube inserted into my neck. Yep, thats right, my neck. It went into the jugular artery and was several inches above my heart. This was to put a particular immune-suppressing drug into my system that was too hard on the veins in the arm. It needed to be immediately dispersed through my body. But in addition to that they had a very large number of other saline bags attached to me, all daisy chained together to go through the triple J port. The strangest combination of fluids going in was a dextrose saline bag, essentially sugar water. But to make sure my sugar levels didn't get too high, there was also a bag containing insulin. This counteracts the sugar. I thought I would show you a picture of my "IV Tree" with all the bags of saline. In this picture, I count 8 different saline bags, each with their own pump, plus the monitor hookups. Needless to say, I had a lot of tubes and wires going all over the place.
The Respiratory Therapist
One visit I did not expect or know about was the respiratory therapist. I did know the hospital staff would bring the breathing device that everyone gets in the hospital to avoid pneumonia, where you have to breath in and watch two little devices rise up to the top. But the respiratory therapist was completely different. This man came in to room about 7pm and introduced himself. He said he was the respiratory therapist and had a treatment for me to do. I watched as he pulled a little tube out of his pocket and began to fill a small container with greenish fluid. Then he hooked it up to an oxygen line and connected the two together somehow, on one end it had a mouth piece and the other end a round hole. Finally he hooked up a large blue tube to the end of the bottle of green fluid through the round hole. He told me to put one end in my mouth and breathe normally. Then he turned on the oxygen and I began my first breathing treatment. As I breathed in a smoky mist would enter into my lungs and when I exhaled the smoky mist would shoot out the end of the blue tube. It really looking liked I was smoking some new fangled pipe. I laughed to myself as I tried to blow smoke rings out the blue tube while the respiratory therapist wasn't looking. I was unsuccessful. This treatment was supposed to happen every 4-5 hours, so I had a total of five treatments while in the ICU. I would say the 4am treatment was the most unpleasant. Here is a dark picture of me having a breathing treatment. I didn't turn on a light and didn't have a flash.
The Exercise Class
Anyone who has been in the hospital overnight knows that you never sleep very well because almost every hour the nurse comes in and has to do something. Draw blood, check vitals, change saline bags, or check on something. I had one really great ICU nurse named Stephanie. She was one of the best nurse experiences I had. I spent some time talking to her every time she came in the room. It was like clockwork. Every hour on the hour she would come in, I would usually be awake or wake up. I had a slew of questions to ask her about my condition and what was to happen next. I have been reading this book by Malcolm Gladwell called "Blink." It is all about the split second decisions that we make and how we can know if we will like a person in the first moments of meeting them. Stephanie was one that I knew instantly that I would like. She just had a presence about her that was comforting and made it feel that every thing was going to be okay. So I almost immediately trusted her. I had her take pictures of all the things I couldn't see, like the IV in my neck, my staples on my belly where the new kidney had been inserted, and then asked her about all of them. Once it started to get late, I didn't have as many questions and slept a little more. But since I had taken so many naps throughout the day, I did wake up at 2am when she came in the room and had trouble going back to sleep. After she left I just quietly sat in my room thinking about a lot of things. After awhile I heard a lot of giggling and laughing going on at the nurses' station outside my room. Some people think it is impolite that doctors and nurses laugh while at the hospital, but I love it and know that it is needed. They are around so many stressful situations involving life and death that laughter can be a great stress reducer. But this was not one of those times. As I lay in bed trying desperately to listen and look through my plaid curtain that was pulled shut, I could see a very faint outline of nurses in the hallways. In the ICU, there are sliding glass doors for every room so you can really see out. I could see nurses lined up, walking past my room, but they weren't walking they were doing power lunges and raising their hands in the air. I don't know how many nurses were out there power lunging together at 2:30am, but I figured it was about 6-8 of them. After the power lunges came stretching and other calisthenics. I thought that was great! I don't know if that is a regular occurrence or not but I thought it was probably a good use of time at 2:30 in the morning to keep alert and have a good time. I tried to take some pictures of the exercise class, but they don't show much. Here is one of the pictures I took at 2:30am. I know it is really hard to see anything in this photo, but you could see the movements with the fluorescent lights in the background.
Room number: North 376
After the ICU I was moved to the regular floor of the hospital. The day after my kidney transplant I was actually up and walking around the hospital at 11am. Then I walked from my room in the ICU to room North 376. Scripps green hospital is divided up into North, West and South. Actually I have only seen West and North now that I think about it. I guess Scripps Green East is the fountain and coffee cart out front. Well, actually I made a stop before I reached N376, I stopped in N377. The room next door to mine. Because in N377 was my donor recovering from his surgery, minus one kidney. He was in his room, me pushing a wheelchair, a nurse following me with my IV tree. We were stoked to see each other. It was awesome. We were both still on pretty heavy pain killers, in fact we each had our own PCA. PCA stands for Patient-controlled analgesia, which means we have a little button that when it turns green we can push it and morphine is injected into us. So you can control your own pain level. After you push the button you have to wait a predetermined amount of time before the light turns green again. I had to wait six minutes before I was given the green light. Studies have shown that a PCA actually makes the patient feel much better and they use considerably less pain medication then when administered by a nurse. So after I visited with my donor for a couple of minutes I went to my room right next door. It was great having a friend next door to me. He would walk over into my room sometimes and once we actually ate our liquid diet dinner in the same room. It made the hospital stay and pain recovery fun. We were both required to take walks to make the healing process faster and get us moving. When one of us was ready to go for a walk, the first place we stopped was the other's room to see if the other wanted to go with us. We almost always did. So we would walk around 3 North, a short loop that has nothing to look at. But talking was great.
"How is your pain?"
"Oh, dude it hurts so bad when I get up or sit down."
"What about you?"
"Same here."
"Oh dude your green light just came on."
"Sweet!"
Little conversations like that were regular. But we had many topics of recovery and working kidney production to discuss as well. We laughed, even though it hurt, about the little things that had happened to us, or the lack of sleep we got. It made the whole kidney transplant and donation something more special. I realized that my donor and I have a special bond that is like no other in life. We all experiences different bonds in our lives, family, siblings, marriage, friends. But this is a bond that few get to experience. One sacrificing part of themselves, to give life to another. It is so special to me and I know that my donor likes it too. I will never forget this time in my life, and I doubt my donor will either. Even as I write this I feel that words do not express the bond. It is only one that can be experienced. It is like trying to describe what being a father is like to someone with out children. You just have to experience it.
Thanks dude for your amazing gift. I will be forever changed.
Sunday, September 19, 2010
An Amazing Day
Tuesday September 14th, 2010 will be a day I remember for the rest of my life.
It started at 4:00am when my alarm went off on my phone. The funny thing is I had actually put "kidney transplant" in my calendar on my iPhone and set an alarm to go off to remind me. I don't know what I was thinking when I put that in??? Like I needed a reminder. So I went back to sleep until 4:30am, when my actual alarm went off. In for a quick shower with special soap to really clean my skin.
My brother Jim wins the award for first contact. I got out of the shower to a text message letting me know he was praying already at 4:45am.
To the hospital. As I walked in, I met my donor and his wife walking in at the same time. We were both excited.
I checked in to the ICU, which is where I would be coming to after the surgery. Room 17, with a great view of Torrey Pines golf course and the ocean in the background. Scripps green has probably the best view from a hospital bed in the world.
After signing papers, changing into my back-less gown, and getting an IV. It was time....to wait. My wife Sarah was with me, which was great, along with my dad, aunt, and a friend Mary. We talked and the time went pretty quick.
My first dose of pills and injections. There were lots of them. A small price to pay. I was very used to taking lots of pills, but the injections I received in my stomach were a first. It amazingly didn't hurt, not as I had expected.
Of the 2 hours of sleep I managed to get the night before, all I dreamed about was the surgery being stopped or postponed. So I fell asleep in the hospital bed and replaced those dreams with much more positive ones.
The doctors and nurses steadily came in and introduced themselves. I was glad to meet them. They had originally told me I would be going down to the OR (Operating Room) at 7:30am, but that turned out to be the time for my donor to go down to the OR. I would go down to surgery an hour later.
It was time. I remember being very excited when the nurse came and wheeled me to the elevator. The anesthesiologist was walking and pushing me too. I noticed that when we got in the elevator he forgot to push the button to the first floor. So the 3 of us just sat in the elevator for awhile. Until the nurse realized we weren't going down, she pushed the button.
I was wheeled down to the surgery floor sporting a silver surgery hat on my head, it was like a filled Jiffy Pop, round and puffy. Everyone else had hats that were way cooler than mine. Camouflage, chargers bolts, duck patterns, stripes...but mine was chrome dome.
This is where things went fast. After going into the prep room, where I was given a "cocktail," which was really some injection to make me relax and start the anesthetizing process. The cocktail also made it so I didn't mind being shaved and washed with extra soap.
I was wheeled into the OR. And remember seeing the hallway that led to the other Operating Room where my donor was already in process. I wanted to call out his name and say something like "here we go," but I did not. In other operations and procedures I remember someone saying "you ready Mike?" or "here we go." But this time nothing. I was out like a light.
I woke up and remember trying my hardest to focus on the clock to see what time it was. How long had it been. I couldn't get my eyes to cooperate. I might have been cross eyed because there were two clocks, but even if I could get one clock, I still couldn't even make out numbers or hands on the clock. Later I figured out it was about 1:30pm.
Had it happened!? Yes!!!
I could feel soreness on my stomach. It felt like I had been doing 5,000 sit-ups all morning. My stomach was sore, but I was still very groggy. There was one more procedure for me to do, which involved inserting an IV into my neck. It actually went into the jugular artery and then went down close to my heart. This was necessary to give me certain injections that would immediately be passed throughout my body.
Then I was back out again. The next thing I remember was my wife Sarah walking in the room. It was about 3:30pm. I have no recollection of our conversation, but her sitting in the room with me was comforting and felt good.
When I woke up, I only could think of one thing, "is the new kidney working?" Well, the best way to tell is if I am producing urine. I know this is not the most pleasant of topics to talk about, but it is how you measure the production of the kidney. Well before the surgery I only produced about 150 mL per day. That translates into about 5 fluid ounces. After the surgery, on the first day alone, I was producing about 300mL per HOUR! Whoa! That is a lot of pee!
Every day after that I have been producing somewhere between 200mL - 300mL per hour and about 3,000mL per day. So yes, praise God the kidney works extremely well.
It started at 4:00am when my alarm went off on my phone. The funny thing is I had actually put "kidney transplant" in my calendar on my iPhone and set an alarm to go off to remind me. I don't know what I was thinking when I put that in??? Like I needed a reminder. So I went back to sleep until 4:30am, when my actual alarm went off. In for a quick shower with special soap to really clean my skin.
My brother Jim wins the award for first contact. I got out of the shower to a text message letting me know he was praying already at 4:45am.
To the hospital. As I walked in, I met my donor and his wife walking in at the same time. We were both excited.
I checked in to the ICU, which is where I would be coming to after the surgery. Room 17, with a great view of Torrey Pines golf course and the ocean in the background. Scripps green has probably the best view from a hospital bed in the world.
After signing papers, changing into my back-less gown, and getting an IV. It was time....to wait. My wife Sarah was with me, which was great, along with my dad, aunt, and a friend Mary. We talked and the time went pretty quick.
My first dose of pills and injections. There were lots of them. A small price to pay. I was very used to taking lots of pills, but the injections I received in my stomach were a first. It amazingly didn't hurt, not as I had expected.
Of the 2 hours of sleep I managed to get the night before, all I dreamed about was the surgery being stopped or postponed. So I fell asleep in the hospital bed and replaced those dreams with much more positive ones.
The doctors and nurses steadily came in and introduced themselves. I was glad to meet them. They had originally told me I would be going down to the OR (Operating Room) at 7:30am, but that turned out to be the time for my donor to go down to the OR. I would go down to surgery an hour later.
It was time. I remember being very excited when the nurse came and wheeled me to the elevator. The anesthesiologist was walking and pushing me too. I noticed that when we got in the elevator he forgot to push the button to the first floor. So the 3 of us just sat in the elevator for awhile. Until the nurse realized we weren't going down, she pushed the button.
I was wheeled down to the surgery floor sporting a silver surgery hat on my head, it was like a filled Jiffy Pop, round and puffy. Everyone else had hats that were way cooler than mine. Camouflage, chargers bolts, duck patterns, stripes...but mine was chrome dome.
This is where things went fast. After going into the prep room, where I was given a "cocktail," which was really some injection to make me relax and start the anesthetizing process. The cocktail also made it so I didn't mind being shaved and washed with extra soap.
I was wheeled into the OR. And remember seeing the hallway that led to the other Operating Room where my donor was already in process. I wanted to call out his name and say something like "here we go," but I did not. In other operations and procedures I remember someone saying "you ready Mike?" or "here we go." But this time nothing. I was out like a light.
I woke up and remember trying my hardest to focus on the clock to see what time it was. How long had it been. I couldn't get my eyes to cooperate. I might have been cross eyed because there were two clocks, but even if I could get one clock, I still couldn't even make out numbers or hands on the clock. Later I figured out it was about 1:30pm.
Had it happened!? Yes!!!
I could feel soreness on my stomach. It felt like I had been doing 5,000 sit-ups all morning. My stomach was sore, but I was still very groggy. There was one more procedure for me to do, which involved inserting an IV into my neck. It actually went into the jugular artery and then went down close to my heart. This was necessary to give me certain injections that would immediately be passed throughout my body.
Then I was back out again. The next thing I remember was my wife Sarah walking in the room. It was about 3:30pm. I have no recollection of our conversation, but her sitting in the room with me was comforting and felt good.
When I woke up, I only could think of one thing, "is the new kidney working?" Well, the best way to tell is if I am producing urine. I know this is not the most pleasant of topics to talk about, but it is how you measure the production of the kidney. Well before the surgery I only produced about 150 mL per day. That translates into about 5 fluid ounces. After the surgery, on the first day alone, I was producing about 300mL per HOUR! Whoa! That is a lot of pee!
Every day after that I have been producing somewhere between 200mL - 300mL per hour and about 3,000mL per day. So yes, praise God the kidney works extremely well.
Thursday, September 16, 2010
For sale
FOR SALE:
Used dialysis machine and supplies.
Contact me if interested.
I am working on another post that describes the latest events of my journey. Waiting for a keyboard instead of iPhone.
Used dialysis machine and supplies.
Contact me if interested.
I am working on another post that describes the latest events of my journey. Waiting for a keyboard instead of iPhone.
Tuesday, September 14, 2010
The kidney is in!
This is Sarah writing for mike. He's doing great! Groggy and in pain (as well as the donor) but the kidney is working and both guys are recovering normally so far. We still need your prayers for recovery and that Mike's body won't reject the kidney, which is a possibility at any point in the life of the kidney, but as I understand it, less likely as time goes on. We are also praying that he won't get sick because the immune suppressing medication he has to take forever to decrease the chance of rejection makes him much more susceptible to illness and less likely to recover quickly if/when he does get sick.
Thank you all so much for your awesome support of us and the donor's family. We thank God for you and for the miracle of science that we are able to benefit from.
More soon!
Sarah
Thank you all so much for your awesome support of us and the donor's family. We thank God for you and for the miracle of science that we are able to benefit from.
More soon!
Sarah
Sunday, September 12, 2010
The count down continues...
It is now two days before I am scheduled to have my kidney transplant. This is the closest I have ever been before, which makes this an exciting time. Two months ago I was scheduled to have the transplant but four days before, I was postponed.
I went to the doctor for all my pre-operation stuff on Thursday and it was a pretty routine set up. The lab for blood-work, meet with the surgeon, get admitted to the hospital, EKG and x-ray. I was also pre screened for the bloodbank and am now wearing a bracelet with some number on it to quickly be able to match blood in case I need it for some reason. I am hoping that will not be an issue.
The doctors gave me a small blue bottle of soap that I am supposed to use the night before and the morning of the surgery. Although with a 5am appointment to show up at the hospital, I am not looking forward to waking up at 4am to take a shower with special soap. But a small sacrifice is worth it for sure.
I did go to church today. It was a great day. So many people supportive and offering prayers for me. My favorite line was from Lori, "We are gonna give God a headache on Tuesday with all the prayers." Many people were surprised to see me at church, since I am taking the immune-suppresive drugs already. I was extra careful though, after shacking hands with people making sure to wash my hands or use antibacterial gel.
I wonder when I will start to get really nervous. I am not nervous yet, especially since I go to the doctor and/or hospital so much that it just seems routine so far. I am willing to bet that Tuesday morning may be the time for the butterflies to start fluttering around. I wonder if I will sleep well on Monday night? At least I will have the chargers game to keep me distracted while on my final dialysis session.
Ah, final dialysis session. Now that has a nice ring to it!
Well, the countdown continues...
I went to the doctor for all my pre-operation stuff on Thursday and it was a pretty routine set up. The lab for blood-work, meet with the surgeon, get admitted to the hospital, EKG and x-ray. I was also pre screened for the bloodbank and am now wearing a bracelet with some number on it to quickly be able to match blood in case I need it for some reason. I am hoping that will not be an issue.
The doctors gave me a small blue bottle of soap that I am supposed to use the night before and the morning of the surgery. Although with a 5am appointment to show up at the hospital, I am not looking forward to waking up at 4am to take a shower with special soap. But a small sacrifice is worth it for sure.
I did go to church today. It was a great day. So many people supportive and offering prayers for me. My favorite line was from Lori, "We are gonna give God a headache on Tuesday with all the prayers." Many people were surprised to see me at church, since I am taking the immune-suppresive drugs already. I was extra careful though, after shacking hands with people making sure to wash my hands or use antibacterial gel.
I wonder when I will start to get really nervous. I am not nervous yet, especially since I go to the doctor and/or hospital so much that it just seems routine so far. I am willing to bet that Tuesday morning may be the time for the butterflies to start fluttering around. I wonder if I will sleep well on Monday night? At least I will have the chargers game to keep me distracted while on my final dialysis session.
Ah, final dialysis session. Now that has a nice ring to it!
Well, the countdown continues...
Tuesday, August 24, 2010
Dreams
Only five days until Sept. 14th, the date my kidney transplant is scheduled. It is really an exciting time for me to dream about all the possibilities that the new kidney will bring.
The things I dream about are not having to be tied down to a machine 6 nights a week on dialysis. I have always told people that six nights per week on dialysis didn't seem that bad. But now that there is the possibility of it ending, it is an amazing amount of time that I was on that machine. It almost seems overwhelming to think back about how much time I have had to endure on the couch at our house, but even more so how much time my wife has gone through prepping the machine, waiting while I dialyze, and then the end of the treatment process too.
Don't get me wrong, I am thankful that they technology exists to keep me alive, but will be thankful when I am no longer dependent on that.
I dream about going out in the evening. This is something that I of course used to take for granted. A quick trip to the store to pick up milk, dinner with my wife at a restaurant, going over to a friends house. Even just driving with my headlights on. I love the feeling of warm summer nights with the car window down and the air being pushed through the car, sometimes cheating and putting the heater on to balance the temperature. Ah, I miss that.
I dream of being able to do projects around the house after the kids have gone to bed.
To actually have an evening of reading, with two hands on a book. I used to try to read on dialysis, but it is tough to hold a book with one hand and turn the pages. Not that it is impossible, but it can be challenging, especially when your hand cramps up.
I dream of drinking as much water as I want.
A couple of years ago, before I found out my kidneys weren't working, I worked at an Audio/Visual rental place. One show we had to set up for was, ironically, the National Kidney Foundation Fundraiser. It was on the lot of Warner Bros and it was an easy gig. I remember one of the main speakers at the fundraiser was George Lopez. He tells the story that he needed a kidney and his wife donated one to him and the one thing he was totally amazed by was the amount of energy he suddenly got back. I wonder what that is going to be like. Will the same happen to me? So I dream about energy.
I also dream about surfing more. I have been surfing since I was 12 years old and love it. I love surfing on short boards, long boards and just sitting in the water with friends. But with my kidney failure I just don't have as much energy as I once did. So I dream about the times in the future that I will have paddling out. A great addition is that the donor who is giving me the kidney loves surfing too. Although it is not verified I am hoping that some of the surf "stoke" gets transferred over to me through the kidney.
But some of the dreams that I am most excited about I am not even aware of yet. The new aspects of life that will be revealed to me after the transplant, but in my kidney failed perspective can't even imagine yet. I am sure that many of those dreams will be revealed to me as I go through them.
The things I dream about are not having to be tied down to a machine 6 nights a week on dialysis. I have always told people that six nights per week on dialysis didn't seem that bad. But now that there is the possibility of it ending, it is an amazing amount of time that I was on that machine. It almost seems overwhelming to think back about how much time I have had to endure on the couch at our house, but even more so how much time my wife has gone through prepping the machine, waiting while I dialyze, and then the end of the treatment process too.
Don't get me wrong, I am thankful that they technology exists to keep me alive, but will be thankful when I am no longer dependent on that.
I dream about going out in the evening. This is something that I of course used to take for granted. A quick trip to the store to pick up milk, dinner with my wife at a restaurant, going over to a friends house. Even just driving with my headlights on. I love the feeling of warm summer nights with the car window down and the air being pushed through the car, sometimes cheating and putting the heater on to balance the temperature. Ah, I miss that.
I dream of being able to do projects around the house after the kids have gone to bed.
To actually have an evening of reading, with two hands on a book. I used to try to read on dialysis, but it is tough to hold a book with one hand and turn the pages. Not that it is impossible, but it can be challenging, especially when your hand cramps up.
I dream of drinking as much water as I want.
A couple of years ago, before I found out my kidneys weren't working, I worked at an Audio/Visual rental place. One show we had to set up for was, ironically, the National Kidney Foundation Fundraiser. It was on the lot of Warner Bros and it was an easy gig. I remember one of the main speakers at the fundraiser was George Lopez. He tells the story that he needed a kidney and his wife donated one to him and the one thing he was totally amazed by was the amount of energy he suddenly got back. I wonder what that is going to be like. Will the same happen to me? So I dream about energy.
I also dream about surfing more. I have been surfing since I was 12 years old and love it. I love surfing on short boards, long boards and just sitting in the water with friends. But with my kidney failure I just don't have as much energy as I once did. So I dream about the times in the future that I will have paddling out. A great addition is that the donor who is giving me the kidney loves surfing too. Although it is not verified I am hoping that some of the surf "stoke" gets transferred over to me through the kidney.
But some of the dreams that I am most excited about I am not even aware of yet. The new aspects of life that will be revealed to me after the transplant, but in my kidney failed perspective can't even imagine yet. I am sure that many of those dreams will be revealed to me as I go through them.
Thursday, August 5, 2010
Now the results from my retest
So I went to the pharmacy last week to pick up my kit to prepare my body for the big retest. I won't go into detail here about the whole endeavor because it is not the most pleasant thing to write about. I would imagine it wouldn't be very pleasant to read about it either, and it especially is not pleasant to go through it!
It does involve fasting for 24 hours, which every time I have had to have a medical fast it has gotten easier and easier to go the 24 hours without eating. But there are certain items that I am allowed to eat and drink during this 24 hours. Any clear liquids like 7-up, sprite, ginger ale and clear broth are allowed up until 4 hours before the test. I was also allowed to eat jello, hard clear candy, and popsicles. However, none of the previously listed can have red in them. I guess that red food coloring could make it appear that there is an inflammation or swelling during the test. So green and orange jello was my snack of choice. A funny thing about jello, besides the wiggling factor, is that is quickly loses its appeal when it is all you can eat.
"Hmmm, I am getting a little hungry. More jello I guess." Never really fun after the third or fourth serving. It is also hard to find popsicles that aren't red. Most of the flavors are fruit punch, strawberry, cherry...all red. There is the occasional orange and green flavor, but at best only 4 of them in a box. I didn't really spend too much time searching stores for lime and orange popsicles. I decided that I could survive the 24 hours on Jolly Ranchers Candy and Ginger Ale.
I don't recommend eating too many Jolly Ranchers in a row though. Biting down on the square piece of candy feels like you have welded your jaw shut and to try to pull your teeth apart only makes it feel like your teeth are about to pop out of socket.
So I went in for my test the following day. I have become so used to going into the hospital that I feel like I could tell others about what to do. Wait in the waiting area for 10 minutes. The nurse comes out with two gowns in hand. I always wondered why the nurses walk out carrying the gowns and not just give them to you once inside the room. It is either because they want the entire waiting room to know that I am about to walk around with my backside hanging out, or because they keep them nice and warm and it temporarily warms their hands from the freezing AC in the exam rooms. Maybe a little bit of both. Next into the locker room to change into my gowns. From the locker room to the prep room for blood pressure, IV hook up, questions and another warm blanket. Then into the procedure room.
My doctor is awesome. He is a nice guy who genuinely cares about his patients. Fortunately they drug me up for the procedure. The last thing I remember is the doctor hooking up an iPod to some speakers and having a song by Nirvana come on. It cracks me up to think that the doctor listens to Nirvana while preforming the test on me.
So I don't know what happens next because I am out. I don't know what drug they give me to knock me out, but I am told that it is if I was blacked out drunk. Still conscious, but no memory. I always tell my wife Sarah to video me when I get home in case something funny happens, but she loves me and doesn't do it. Thanks babe.
However, I guess I was pretty out of it when I came to. It is very much like a dream. Remembering certain parts very clearly, but no memory of other moments. I can remember laying on the bed and the nurse bringing me my bag of clothes. But how and when I got dressed I have no clue. My memory only allows me to have gone from the bed to sitting in a hallway next to Sarah. I remember the doctor showing me pictures of the procedure. And then I was in the car going home. Sarah tells me that when I got in the car, which is a Prius, I commented that I really loved the backup camera that comes on when you put the car in reverse. Then I said "Money in the Bank." I guess I like that backup camera.
She told me about this later and I laughed for quite awhile, because I have no memory whatsoever of that.
The doctor told me that the results of the test looked good and that he was going to recommend to the transplant team to move forward with the transplant. I am so thankful that I remember that part of the conversation! So now it is a waiting game again.
September 7th is the tentative date of the transplant, but I haven't heard from the hospital yet to see if that is correct or not. It is amazing how everything has to come together just perfectly to have a transplant. Everyone's schedule must line up. No one can be sick or have an infection.
In a week or so I will begin a new regimen to stay healthy. Washing hands frequently. A small bottle of hand sanitizer in my pocket at all times. Running away from someone who looks slightly sick or has a cold.
I am so thankful that I know my donor. He is an awesome guy and we talk on the phone all the time. He is extremely patient and seems excited to want to donate his kidney to me. I wonder what that feels like? I am amazed that he is setting his work and home schedule around this amazing gift. Who am I to deserve something like this? I haven't done anything special, I am not a genius who is going to invent something to save the world. I am just a regular guy.
The bible says that the Lord loves a joyful giver. I certainly know someone who the Lord loves!
It does involve fasting for 24 hours, which every time I have had to have a medical fast it has gotten easier and easier to go the 24 hours without eating. But there are certain items that I am allowed to eat and drink during this 24 hours. Any clear liquids like 7-up, sprite, ginger ale and clear broth are allowed up until 4 hours before the test. I was also allowed to eat jello, hard clear candy, and popsicles. However, none of the previously listed can have red in them. I guess that red food coloring could make it appear that there is an inflammation or swelling during the test. So green and orange jello was my snack of choice. A funny thing about jello, besides the wiggling factor, is that is quickly loses its appeal when it is all you can eat.
"Hmmm, I am getting a little hungry. More jello I guess." Never really fun after the third or fourth serving. It is also hard to find popsicles that aren't red. Most of the flavors are fruit punch, strawberry, cherry...all red. There is the occasional orange and green flavor, but at best only 4 of them in a box. I didn't really spend too much time searching stores for lime and orange popsicles. I decided that I could survive the 24 hours on Jolly Ranchers Candy and Ginger Ale.
I don't recommend eating too many Jolly Ranchers in a row though. Biting down on the square piece of candy feels like you have welded your jaw shut and to try to pull your teeth apart only makes it feel like your teeth are about to pop out of socket.
So I went in for my test the following day. I have become so used to going into the hospital that I feel like I could tell others about what to do. Wait in the waiting area for 10 minutes. The nurse comes out with two gowns in hand. I always wondered why the nurses walk out carrying the gowns and not just give them to you once inside the room. It is either because they want the entire waiting room to know that I am about to walk around with my backside hanging out, or because they keep them nice and warm and it temporarily warms their hands from the freezing AC in the exam rooms. Maybe a little bit of both. Next into the locker room to change into my gowns. From the locker room to the prep room for blood pressure, IV hook up, questions and another warm blanket. Then into the procedure room.
My doctor is awesome. He is a nice guy who genuinely cares about his patients. Fortunately they drug me up for the procedure. The last thing I remember is the doctor hooking up an iPod to some speakers and having a song by Nirvana come on. It cracks me up to think that the doctor listens to Nirvana while preforming the test on me.
So I don't know what happens next because I am out. I don't know what drug they give me to knock me out, but I am told that it is if I was blacked out drunk. Still conscious, but no memory. I always tell my wife Sarah to video me when I get home in case something funny happens, but she loves me and doesn't do it. Thanks babe.
However, I guess I was pretty out of it when I came to. It is very much like a dream. Remembering certain parts very clearly, but no memory of other moments. I can remember laying on the bed and the nurse bringing me my bag of clothes. But how and when I got dressed I have no clue. My memory only allows me to have gone from the bed to sitting in a hallway next to Sarah. I remember the doctor showing me pictures of the procedure. And then I was in the car going home. Sarah tells me that when I got in the car, which is a Prius, I commented that I really loved the backup camera that comes on when you put the car in reverse. Then I said "Money in the Bank." I guess I like that backup camera.
She told me about this later and I laughed for quite awhile, because I have no memory whatsoever of that.
The doctor told me that the results of the test looked good and that he was going to recommend to the transplant team to move forward with the transplant. I am so thankful that I remember that part of the conversation! So now it is a waiting game again.
September 7th is the tentative date of the transplant, but I haven't heard from the hospital yet to see if that is correct or not. It is amazing how everything has to come together just perfectly to have a transplant. Everyone's schedule must line up. No one can be sick or have an infection.
In a week or so I will begin a new regimen to stay healthy. Washing hands frequently. A small bottle of hand sanitizer in my pocket at all times. Running away from someone who looks slightly sick or has a cold.
I am so thankful that I know my donor. He is an awesome guy and we talk on the phone all the time. He is extremely patient and seems excited to want to donate his kidney to me. I wonder what that feels like? I am amazed that he is setting his work and home schedule around this amazing gift. Who am I to deserve something like this? I haven't done anything special, I am not a genius who is going to invent something to save the world. I am just a regular guy.
The bible says that the Lord loves a joyful giver. I certainly know someone who the Lord loves!
Wednesday, July 14, 2010
A week or so later
Well it has been about a week and a half since I found out that my kidney transplant was postponed.
My current situation is that I am on a four week treatment with some medication. It is not so bad, except for the pills that they have me taking are one of those horrible tasting pills that instantly start to dissolve when you put them in your mouth. I have learned to drink some milk and hold it in my mouth, then try to throw the pills to the back of my mouth and swallow them as fast as I can. Sometimes it works but sometimes it doesn't. When it doesn't I get the grossest bitter taste on the back of my tongue for 10 minutes or so. Have to keep working to prefect my technique.
The four week treatment will go for three more weeks and at the end of that time I will go in for testing and blood work to see how things are going. I feel pretty confident that it is just a matter of time before the transplant surgery happens, it is just a waiting game.
I am also very thankful that my medical team is so good. I am glad that the doctors found something before my immune system was reduced. A small infection or inflammation could become a big problem when there is nothing to fight it off. So that is a good thing.
Summer time is always my favorite time of year and a couple of events are happening this summer that I will look forward to. One of them is the church's Vacation Bible Fun Week (same as VBS but different name). It is exciting to see the 160 plus children take over our church for the week. I am also looking forward to the youth group's surf trip. This is probably my favorite trip.
Now don't get me wrong, I would have preferred to undergo "the knife" and have a new kidney. But since it is postponed anyways, it will be fun to go on these events.
My current situation is that I am on a four week treatment with some medication. It is not so bad, except for the pills that they have me taking are one of those horrible tasting pills that instantly start to dissolve when you put them in your mouth. I have learned to drink some milk and hold it in my mouth, then try to throw the pills to the back of my mouth and swallow them as fast as I can. Sometimes it works but sometimes it doesn't. When it doesn't I get the grossest bitter taste on the back of my tongue for 10 minutes or so. Have to keep working to prefect my technique.
The four week treatment will go for three more weeks and at the end of that time I will go in for testing and blood work to see how things are going. I feel pretty confident that it is just a matter of time before the transplant surgery happens, it is just a waiting game.
I am also very thankful that my medical team is so good. I am glad that the doctors found something before my immune system was reduced. A small infection or inflammation could become a big problem when there is nothing to fight it off. So that is a good thing.
Summer time is always my favorite time of year and a couple of events are happening this summer that I will look forward to. One of them is the church's Vacation Bible Fun Week (same as VBS but different name). It is exciting to see the 160 plus children take over our church for the week. I am also looking forward to the youth group's surf trip. This is probably my favorite trip.
Now don't get me wrong, I would have preferred to undergo "the knife" and have a new kidney. But since it is postponed anyways, it will be fun to go on these events.
Friday, July 2, 2010
An unforeseen delay
Today I went to the hospital for what I thought was going to be the last hoop to go through before the surgery on Tuesday. However, it looks like there will be some more hoops added. The last procedure to give me clearance for surgery was a colonoscopy, which we all thought was just going to be routine and have no problems.
But when I went in today the doctor found some inflammation during the procedure which he didn't know what the cause was. He took some biopsies of the site and had me get a CT scan to find out what the cause might be. Since I don't have any pain or any other symptoms it is going to take a couple of days for the labs to figure it out.
The bummer part is that means that I will not be able to have the transplant surgery on Tuesday. That is a HUGE bummer. For the majority of this process I have intentionally tried to not get too excited and get my hopes up because I didn't want to experience any possible let down. But when I was only 4 days away from the surgery, I couldn't help myself. I was ready for the surgery and excited for the life change it would bring. I hope that this is only a temporary set back.
When the doctor told me that we would have to wait, I immediately began to pray and ask God why this happen, especially so close to the surgery. Again I asked God for answers.
The only glimmer of answer that I got was a nurse who pushed me in a wheel chair to the CT scan room. Her name was Faith. So that is what I will continue to do....have faith.
But when I went in today the doctor found some inflammation during the procedure which he didn't know what the cause was. He took some biopsies of the site and had me get a CT scan to find out what the cause might be. Since I don't have any pain or any other symptoms it is going to take a couple of days for the labs to figure it out.
The bummer part is that means that I will not be able to have the transplant surgery on Tuesday. That is a HUGE bummer. For the majority of this process I have intentionally tried to not get too excited and get my hopes up because I didn't want to experience any possible let down. But when I was only 4 days away from the surgery, I couldn't help myself. I was ready for the surgery and excited for the life change it would bring. I hope that this is only a temporary set back.
When the doctor told me that we would have to wait, I immediately began to pray and ask God why this happen, especially so close to the surgery. Again I asked God for answers.
The only glimmer of answer that I got was a nurse who pushed me in a wheel chair to the CT scan room. Her name was Faith. So that is what I will continue to do....have faith.
Thursday, July 1, 2010
The end of dialysis in sight?
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.
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.
Sunday, June 27, 2010
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.
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.
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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