(This is a copy from another blog I started in February…the one and only post, since the system was an unwieldy mess. I’m trying again with something simpler!)
I’ve started an email for folks interested in my “liver” situation, and after sending the first note, I thought “Why not put it on the web?” Welcome to the 21st century!
In this post, I’ll attempt to bring everyone up to speed. Some of you know most of this story already, and others are as surprised to hear about all this as I am to have to tell it. Here’s the last couple of years, in a nutshell:
The Wife and I adopt our son (hereafter known as The Bacon). We brought him home from the hospital the day after he was born, and knew our lives had just changed radically. Little did we know…
We decide it’s time to be responsible parents and get life insurance. The nurse comes by the house, asks a bunch of questions, draws some blood, and we sign our requisite paperwork.
Later that month, the Wife gets approved. The insurance company refuses me and asks who my doctor is, so I can go over the results of the blood test.
Soon after that, I see my doctor’s Physician’s Assistant. That day (and the next three times I come in) he asks if I may drink more than I think I do. Amongst my friends who drink, I know I consume the least amount of alcohol. Something is pointing to liver problems, but this office can’t explain it.
I decide to stop drinking, just to be safe.
My friend Mark suggests I see his family doctor. I make an appointment, and he looks over the tests and tells me, in his opinion, that I¹m in End-Stage Liver failure. He can’t explain the fact that I have no symptoms, and sends me to the best Hepatology office in the nation: Cedars-Sinai Medical Center in L.A.
What I learned: some doctors (and their office staff) are clueless about anything out of the ordinary. Take the time to find someone you respect, and go for the second opinion.
I meet with Dr. Fred Poordad at Cedars-Sinai. Before opening my medical file, he asks me to tell him what I’ve learned so far. Not much, but I recite what the previous doctors have told me. He then tells me he can diagnose me, with 95% accuracy, and without looking at my test results. Turns out he’s that good.
I’m diagnosed with PSC (Primary Schlerosing Cholangitis), which brings along with it UC (Ulcerative Colitis) and Esophagial Varesies. What does that mean? For those who don’t know, I’m an artist, musician, and writer. My extent of medical knowledge is confined to what I’ve seen on E.R. Thursday nights, and what I’ve seen on cable TV on weekends when there’s absolutely nothing else to watch. But, in layman’s terms, here’s the hand that’s been dealt to me.
PSC (Primary Schlerosing Cholangitis): first, an explanation. The liver has ducts that carry excess bile from the liver to the intestines to be expelled from the body. PSC is a condition where, for one reason or another, the ducts get blocked and the bile backs up into the liver, slowly turning the liver tissue from healthy cells to fatty cells, much the same way that excessive alcohol use can. In my case, the doctor’s best guess is that the blockage started back in the early 1990s, and the destruction has been so slow that I’ve never really noticed the symptoms, or passed them off as something else. There’s no one thing that I did (or didn’t do) to cause this, and the nearest we can tell there’s no genetic background from which it cropped up. Just the luck of the draw.
UC (Ulcerative Colitis): this typically goes with PSC, and is a condition that effects the intestines. I won’t go into much more details; I’ll just say that when the effects of UC really hit, it is a very unpleasant time. I think everyone’s had some problem with their lower intestinal tract at some time (ever drink the water in Mexico?), so there’s a starting point of reference. Like the PSC, I had no idea I had this, as I had never had any major symptoms. Once we started with the medications to “help” me, that’s when the symptoms of this condition hit me. More on that in a bit.
Esophagial Varesies: The esophagus (i.e. the passage from the throat to the stomach) has a series of blood vessels that run along it. The liver is “downstream” from there, and filters the blood supply. With the constriction of the flow of blood through the liver (I’m currently running at about 10% of normal function) the pressure through these blood vessels get raised. They had me on blood pressure meds for awhile, but the reality was that the blood vessels were likely to burst sooner or later. Again, more on that later.
I go see a local gastroenterologist about helping manage the UC and work with Cedars-Sinai. He runs some tests and all but says I’m too difficult a patient, and didn’t want to deal with me. Very nice.
I end up finding a really great doctor in Ventura, Dr. Lin, who has been one of the most awesome and thoughtful doctors I’ve ever had the pleasure to know.
What I learned: when things are serious, always find the best doctor you can. Even if it’s a pain in the butt and takes three times longer at first, it’s worth it in the long run.
I am officially entered into the Cedars-Sinai Liver Transplant Program, and go through a few days of really fun testing, as well as informational classes, psychological testing, diet evaluation, etc. Because I’m basically healthy (at least in the world of liver transplantation), I’m told my best bet will be to find a living donor. I’m likely to survive for several more years (or more) without a transplant, but I’m at an increased risk for a couple of forms of very fatal cancers, so the sooner we can do this the better.
I start my first “bout” with UC. I end up on massive doses of steroids (among other medications), and don’t go very far from an available restroom for quite some time.
Somehow, in this period, I was led to believe that because of the severe nature of the UC episode, I’m more likely to move up the list for a transplant from a deceased donor. So the idea of finding a living donor becomes less important.
The Bacon turns one year old.
The Bacon’s adoption is finalized. Finally! It only took one year and two months…
I get a “real” job, working as a writer for Midway Entertainment (the videogame company that brought us arcade favorites like Mortal Kombat, Defender, and Gauntlet). They have a great insurance plan that has been really good for the family while we work through this transplant situation.
I also come off the steroids, after five months.
On the day I’m supposed to go to a three-day convention in LA, I wake up feeling like I’d been hit by a bus. After calling Dr. Lin, the Wife convinced me to skip the convention and go to the ER. Just as we get into the ER in Ventura, I start throwing up blood. Turns out the esophogial varesies had burst, and I spent the next week in the hospital getting blood transfusions and having Dr. Lin and his partners working to stop the bleeding. They conferred with the doctors at Cedars-Sinai, and I was transferred there, where they ran about every test I’d hope to go through. After a week at Cedars, I had a TIPS procedure, where the doctors ran a shunt to bypass the blockage of the liver, which lowered the blood pressure in my abdomen and eliminated this whole problem—for a couple of years, at least.
While in the hospital, I learn for sure that I will have to seek out a living donor for a transplant. The earlier information I was working with was wrong.
What I learned: always listen to your wife. Also, hospital food is pretty good after a week and a half of clear liquids and I.V.s.
My mother undergoes testing to be a donor. It doesn’t work out–there’s a potential problem with the physical structure of the liver, and the doctor want everything to be as perfect as possible.
A note about living donors: Once someone indicates they’re willing to do this, they fill out paperwork for the transplant office to double-check their eligibility (based on medical and psycho/sociological details). If they’re accepted, they’re scheduled for a two-week session of testing and meetings, which is mostly two or three days of testing, then several days of waiting, and (if everything looks good) one last day of semi-invasive tests. If everything looks good to the transplant team, the operation is scheduled 4-8 weeks later (whenever is best for the donor and the recipient).
The Bacon turns two. How time flies!
Also this month I started doing some fundraising, working with a non-profit organization back east who provides a tax-deductable status for these types of charitable donations. This will help pay for things that insurance won’t be covering (lodging and food for Leanne while I’m in the hospital, medication co-pays, and incidental costs for the donor and their family as well). I hosted a concert that raised over $9000 in one night!
My friend Wade undergoes testing, and gets through the entire process, just to find out that, like my mother, the doctors don’t think the physical structure is just right.
My father undergoes testing (and gets to spend time with his grandson at Christmas), and also gets turned down by the transplant team. In his case, he’s having his doctor back home run more tests, as there’s a chance he may still be the right candidate.
So here it is, February 2006. It’s been almost two years since I was diagnosed, and I’ve been spending a lot of time waiting for my next step in this process. Over the last two years I’ve had to deal with many hospital visits, countless blood tests (and other fun stuff), and a noticeable decline in my energy level. I’ve had to deal with not being able to do all the things I think I should be able to do, and because of the medications I’m taking (some to suppress the immune system, in order to keep what little liver function I have going as good as it can), I’ve been forced to withdraw somewhat from society, especially this time of year when everyone’s nursing a cold or minor flu bug. These things can hit me especially hard, so the best bet is to stay away from people and bypass the problem altogether.
If anyone is interested in further info on any of this, you can ask me at any time. Also, here’s a few links that describe things much better than I can.
Information on the liver transplant process (from USC):
An exhaustive FAQ about the transplantation process:
Cedars-Sinai’s information on living donor transplants:
My fundraising link (do a patient search for “hendricks”):