Sunday, June 28, 2009

They're Winners!

After 6 days, 16 hours and 56 minutes, the Liverators crossed the finish line in Annapolis yesterday morning and took 4th place. As much interest that I had in this race, I didn't have a chance to follow it on a daily basis as I would have liked too because we were in Yellowstone for a few days. When we got back it was time to go back to work.
What little I got to read wasn't very much and I haven't looked at any of the video shots yet. I am in great awe of these men. I wonder if John Marino had any idea of what would come from his vision some 27 years ago. He was determined to do something different and he wanted it to be big. An annual race that has lasted 27 years was probably more than he expected. And while the Race Across America has always been an endurance race, it has also been used as vehicle for fundraisers by more than half its racers.
The Race Across America is not a stage race. You start on the west coast and finish on the east coast when you cross the finish line. Whether you are participating in a two-man team, a four-man team or the eight-man team, you only rest in shifts.
For some final statistics look
. Great Job Team Donate Life (TDL) Liverators.

Thursday, June 25, 2009

I'm Not Scared

Last week my transplant coordinator called me to see how I was doing with some of my new meds and then she said that she wanted me to go in and have an MRI to see about a shadow they picked up on a CT scan a couple of months ago. The shadow was dismissed back then as "It's probably nothing to worry about." and "I'm going to have a doctor look at the results." Months went by and I had all but forgotten about it until she called. I think what surprised me the most was that she was asking for an MRI now after all this time.
Now I have never had an MRI before and all that I could think about was all the awful horror movies I've watched over the years -- the ones where the person goes into the machine and doesn't come out alive, and if they do they are somewhat fragged. Plus I have heard all about the claustrophobia and the "OMG they are so damn loud".
And oh yes, the stories of the giant magnet sucking in all things metal. Looking forward to all this apprehension I must have stared at my underwear for a good minute before I put them on. I turned them over in my hands a couple of times wondering if perhaps there was some metal thread buried in the seams somewhere that I was unaware of. Surely they wouldn't have used metal thread? I thought to myself. Not really, would they? Resigned to the fact that that was just too farfetched I finally put them on. I will just ask the tech, he will probably know.
When Lois and I got to the hospital we were told that they were going to be running an IV for a contrast scan and that I had to fill out a couple of forms. Apparently it takes four forms because there is not enough room on a 8 1/2 x 11 sheet of paper to check off that many Yes and No questions and to make it even harder you have to sign the waiver dismissing them for anything that might go wrong. So of course by the time I go off to get undressed I have forgotten all about my underwear question because now I'm suddenly thinking about all those horror movies.
So I finally enter the room to see this machine and I get on the table and they start explaining all the things that will be happening. The first thing they ask me is if I am claustrophobic. I'm not really sure, I say. Well then, just close your eyes and you should be all right. "Are you afraid of needles?" I think it is a little late for that one but I answer anyway. "Yes, but I get shots all the time so I guess it doesn't matter." They explain to me that they are going to have me hold my breath while they take pictures and then let it out when the voice tells me to. "Okay."
Now I had done some preparing for this so I thought this should go pretty smoothly. I finally resolved that there was no such thing as metal thread and that science fiction is just that -- science fiction. I'm not going to turn into hamburger. At least I had hoped not.
And then they roll me into the machine and they place some earplugs in my ears and ask me if I can hear them. I looked at the nurse and I nod. "You're going to have to speak when you get in there." I nod again.
I am in there for no more than a minute when I realize I have to go to the bathroom. The nurse behind the wall tells me that this will take 25 minutes. I'm thinking to myself I prepared for this. I just asked to use the the bathroom before I came in here. So I'm lying there listening to the sounds of pings and low firestation blares and all I can think about is going to the bathroom. The recording says: "Breathe in...hold it...(tick-tick-tick)...relax."
The only thing I could think of was what my brother-in-law told me to do. "Just take a nap while you're in there. It's the best thing you can do."

Wednesday, June 24, 2009

TDL Liverators update

Team Donate Life (TDL) Liverators hit Timestation #32 in Jefferson City, MO., at 19:04:00 tonight. A distance of 1911.70 miles from the start. I read a couple of blogs from the team members and they are all exhausted and sore. The crews are excited and full of adrenaline. TDL Give Hope arrived a couple of hours earlier at Timestation #32 at 17:05:00 and proceeded to Timestation #33 racing through severe heat and into extreme weather with thunder and lightning storms. Temperatures have been brutal and reaching into the 90's with almost 100% humidity. I would suspect the thunderstorm would have felt nice. They were also faced with some very strong crosswinds throughout the day that would have been nasty.
I missed out on the first few days but all the teams seem to be doing great. There are 8 eight man teams and the TDL Liverators are in 4th place. I have been pretty excited about this race and I am hoping all the racers do well.

Friday, June 19, 2009

Pedal power

In 1982, John Marino organized one of the longest endurance bike races in America. It started out at the Santa Monica pier in California and ended in front of the Empire State Building in New York City. It was called The Great American Bike Race. There were four participants that first year: Lon Halderman, John Howard, Michael Shermer and John Marino. Halderman won the race in 9d 20h 2m. Since then, the race has evolved into what is now known as the Race Across America. It is one of the most challenging races in the world. Over the years the race has grown in participants and several divisions.

Team Donate Life has played a big part in the Race Across America for a number of years now and has used its participation to raise funds for liver transplants, liver disease awareness and organ donation awareness. The other day I ran across an article in a local newspaper and I saw that two of my doctors (one of them has recently moved to the University of Utah Hospital) are riding for Team Donate Life. They are called the Liverators. Dr. Terry Box and Dr. Ray Thomason have both seen me in clinic over the past year. After reading a little about Team Donate Life and the Race Across America I was very humbled by Terry Box's story and filled with a sense of inspiration. I knew early on that Dr. Box had had his own liver transplant and for that very reason I felt comfortable in knowing that I had a doctor who had actually experienced his own tranplant. What I didn't know was some of Dr. Box's back story until I read this article. At the time I felt lucky to have a doctor who had been through this operation. It was, after all, as hands-on as you can get for being a transplant surgeon. That gave me much comfort when I had questions of my own.

The Race Across America begins in Oceanside, California on June 20 and ends in Annapolis, Maryland. about a week later.

Wednesday, June 10, 2009

Some Changes

For over a year now I have been waiting to get sick. I am often left frustrated when I find my MELD score hasn't moved at all when I get my labs drawn. As I have said before, these numbers will ultimately determine my placement on The List.
Today (yesterday) I sent an e-mail to my transplant coordinator asking about a lab test they wanted done to check my kidney functions. I got an e-mail back telling me to just go get my labs drawn. So I did that. I received another e-mail in the evening telling me my kidneys functions were okay and that my MELD was at 13.
It seems odd that after so long things are beginning to change. Knowing that my numbers have started to move is almost too hard for me fathom after all this time. And even though they've only crept up a little; from an 11 to 13, it shows that something is starting to happen. Once again I find myself torn between two directions. A part of me wants to stay suspended, while another wants to go forward. But I guess I don't really have any control over that. I am still doing well for now. That counts for a lot.

Friday, June 5, 2009

What's new?

The last time I had my MELD score checked it was still eleven. On the scale of 6 to 40 that is relatively low. I continue to have shortness of breath despite the water pills I'm taking. But I weigh myself every so often at home and at work and I have dropped a couple of pounds. I went to see my dermatologist yesterday and we told him that we were going to have to stop taking the Enbrel due to our insurance not covering it. He said that he would see what he could do about continuing the treatment because it seemed important to keep me healthy and to keep my psorisis at bay. I was so looking forward to not receiving anymore shots.
I've been really exhausted these past few days and now I have a cold. Tired + having a cold = Miserable.
Now that the season has changed I've taken to riding the bike around the neighborhood. The other day I did 3 or 4 miles and I cramped up real bad later in the evening. I'm going to have to watch that. I was riding in low gear trying to work my muscles. I'm gonna have to kick it down a notch until I get used to it. The exercise bike in the corner of the living room just doesn't do it. My cramps have gotten a lot better though since I started taking the new medication.
We are still waiting to hear from Arizona about the adoption records. It has been a couple of weeks now. We are getting anxious. We are hoping that this is a good sign; that maybe the waiting is because they are looking. We haven't really thought of any other options yet and are waiting to see what happens with our last petition to the other court. After that, if there is no news then we will try something else.
Sometimes I wonder what is worse. Waiting to get sick or waiting on news from the court. Or in this case the lack of news.