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.
Wednesday, July 14, 2010
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.
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