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

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...

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.

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!

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.

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.

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.