3 YEARS!!!!!

How amazing is this ride!? Now apparently I only log and post every year on my transplant anniversary. I am so blessed and still thank God all the time for my life! I am going in for my 3 year check up soon, have to see the nephrologist and transplant team plus gets labs and who knows what else. Small sacrifice. Worth every bit. Thank you all for your prayers and friendships.

2 years!!

So it has been a long stinking time since I posted to this blog. Funny how when things are going well, praise God, I don't think of posting here as much. And when I was really posting on this blog I had crazy staples over a giant incision where my kidney was placed, and lying in bed the whole time.

 Two years to the day. September 14th 2010 was awesome. I remember the first night like it was yesterday, just without the giant IV bags, the glowing green morphine button, and no pain. Wow, what a difference a healthy kidney and two years makes.
Spent the day with the family in the morning. Playing Legos with the boys, building a track for matchbox cars, going out to Torrey Pines beach for a Paddle boarding session, and then for dinner enjoying the time with my family and kidney donor, Gary. We grilled carne asada, pollo asada, and made tacos while sitting outside on the patio. And finally finished up the day with a game of T-ball in the back with Gary and the boys. Best ever!!!

 Doctors say everything still looks great. Still take 13 pills in the morning, 2 at 6pm and another 6 at 9pm.....no big deal, a small sacrifice for the joys of normal life. I am supposed to have another biopsy sometime soon, those are easy now.

 Had an idea that maybe I will get Gary, the donor, to tell his story on this blog now. That could be awesome to hear his side of this. His story is amazing!

 Lastly, I want to throw this out there. While I would like to talk about how miserable diaslysis is, I realize it is really important and saves lives. But from a guy who remembers the dialysis lifestyle and now lives new life....you should seriously consider donating a kidney to someone. If you don't know them, who cares. It can save their life! If you do know them, it is the best gift ever. Of course there is a risk, but the best things in life always require risk...without risk our life is plain. To quote from the dad in the movie My Big Fat Greek Wedding, "plain toast, no jellies, no jams, just plain toast.". Life with out risk is plain.

2 months and still going great!

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.

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.

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.

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.

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.