I was originally planning on writing something like this last week, the night before my surgery. In retrospect, I guess its good that I didn't considering how things developed.
Let me get a few things out of the way here, some informational housekeeping as it were.
First, I have gotten a few e-mails asking me about the specifics of my condition. Without going into too much detail, I think I can summarize the high points here.
Well, for starters, let me explain that I have the Hepatitis C virus. Its inactive, and has never been active. Ive had it my whole life (since age 2 months, as best we can figure) and evidently my body's high grade immune system has managed to keep it at bay for 30 years without fail.
So, about fifteen months ago, give or take, I started noticing that I was getting winded a lot more quickly than normal. A few months later, I looked in the mirror, and realized that the whites of my eyes were three quarters yellow. In other words, I was jaundice, something that I was taught a long time ago was a sign of major liver problems. I wish I could say that my doctor jumped on the issue, but he was a less than stellar example of the medical profession. Anyway, a month later I found a doctor who took me seriously, and ran nearly ever test on the lab form, and even penned in a few extras.
The good news was that the tests all came back with normal liver readings. I had a problem, but evidently it wasn't my liver. Thank God! I was anemic, and dangerously so.
According to the doctor, when the lab called him up with my test results, my hemoglobin was so low, that the doctor made them check to see if they had the right patient. According to a nurse, the Doctor's end of the conversation sounded something like this: “Are you sure? People with numbers that low don't usually want to get out of bed, and this guy just walked out of my office under his own power, and he was talking about wrangling his kid this afternoon.”
Anyway, my next stop was a hematologist. As it happens, most hematologists are also oncologists, so imagine the shock I got when I received a call from Stillwater Cancer Care Associates telling me I had an appointment with their oncologist. We all laughed once the reasoning was explained to me, but for a minute there I was like “Who said anything about cancer?”
So, that was sometime in February of 08. As it turns out, the Doctor who headed my treatment is a real pro, and he was all about keeping me in the loop with the 'how's and 'why's of the treatment. We ran a bunch of tests, and he said that the best explanation was that I had hemolytic anemia. Thats where my own immune system goes ape, and decided that my red blood cells are some form of infection. The plan was to treat me with high doses of prednisone and hope that the body would reset itself once the immune system had been beaten back soundly with the proverbial big stick.
The first round of treatment wen well, and about two months later I was off of the drug and my blood work was normal.
Unfortunately, a month after that, I was jaundice again.
The second round of treatment used higher doses of prednisone, and the weaning off period was even longer. That time, I started to shown signs of anemia before I was even completely off of the drug. So it looked like plan A wasn't working.
Also, at this point the doctor and I started having a long talk about some other issues I would be facing. As I had an inactive, but potential lethal virus in my system, and all indications were that my immune system was largely what was keeping it at bay, suppressing my immune system with prednisone was not a long term option. With most other patients, it is. And according to my doctor, many people opt to manage long term or cronic hemolytic anemia with medications.
That really wasn't an option for me... go figure.
He was going to recommend me for surgery, but I stopped me.
“Okay, this is me thinking like an engineer, but I was always taught that if the original team can't come up with an answer, you always try a new set of eyes on the problem before looking to drastic measures.” You could call it a second opinion, but that makes it sound like I didn't trust the doctor. The truth of the mater was that he had done a great job with me, and was a good man to work with, but good or not, he was just one person, and someone else might have an idea that he hand't thought of.
To his credit, the doctor jumped at the suggestion, and agreed that someone else should give a fresh perspective on my situation.
It took a bit of time, largely for outside reasons, but I managed to get in to see a hematologist in Oklahoma city who specializes in odd blood disorders. According to the information I have, he actually wanted to start his own practice just for weired blood disorders, but he wasn't sure there was enough of a patient base to support it.
Now, to his credit, he was polite, and even pleasant to talk to. And I do not regret seeing him in the lest. However, the whole visit amounted to him looking at me and going “Sorry, no new ideas here. Looks like you need surgery.”
Yes, I was rolling my eyes as I walked out of the exam room, but at least all of the doctors were in agreement, right?
If you have read my other blog entry, you can probably figure out the rest.
A little bit about my condition, and this is in response to some e-mails I got.
First of all, my condition has been classified as idiopathic in cause. The doctor explained that idiopathic means that we are idiots because we can't explain why its happening... (It was his joke, not mine). Seriously though, “idiopathic” literally translates to “unknown cause”. Evidently well over two thirds of all hemolytic anemia cases are idiopathic, and after while, the doctors are trained to just stop asking why because its a waist of time that distracts from the treatment.
Second of all, while we don't know they why, the what is fairly clear. Based on my blood work, my body's response to prednisone, and a lot of observation, we have safely concluded that my immune system is actively attacking my own body, and doing so with a startling efficiency I might add. I've always had an aggressive immune system, and a long history of shrugging off some really tough bugs when they make there rounds. The best working theory we have is that my immune system was so tweaked that when it ran out of actual foreign organisms to kill, it decided to just pick any fight it could. There is no real way to prove that, and it doesn't effect how my treatment is being documented, but it is fascinating to consider, at least for me.
Now, let me be clear, because I have gotten this from a bunch of people.
This is not iron-deficiency type anemia. I have a bunch of people (mostly out of the SCA) telling me that I don't need to be on any drugs, and that I can manage the condition with dietary constraints and nutritional supplements. Understand, my body is producing plenty of red blood cells. As a mater of fact, its working overtime, and keeping up with the higher demand when needed. The problem is that another part of my body is actively attacking and killing those same blood cells. No dietary supplement or healthy eating plan in existence is going to even slow that down, especially with the rates of cell destruction I was showing the second time around. When my immune system shows up to a fight, evidently it comes in guns blazing, and never gets around to the “asking questions and taking names” part.
The major problem for me isn't so much the anemia right now. As a mater of fact, I have not been anemic for some time, thanks to the treatment. However, the treatment itself has its own problems.
Prednisone is a steroid, a potent anti-inflammatory and immuno-suppressant. Its used in transplant patients to help prevent their bodies from rejecting the new organs, as well as nearly any patient who's immune system got its wires crossed like mind.
The drawback, as I explained before, is that with the immune system weakened, I am wide open to nearly any infection that comes down the block, and those infections hit a lot harder than they usually do. The problem that has me worried is that with a suppressed immune system, if my Hepatitis suddenly goes active, my liver could be turned into Swiss cheese in a mater of months rather than over the course of a year or more, the average progression for Hepatitis-C as I understand.
Now let's get into the side effects of this stuff.
Weight gain (seventy pounds in six month) water retention (nearly two inches in my belt, and a lot of my shirts and pants don't fit any more), voracious hunger, (imagine never being not hungry, even with you stomach feels like its going to explode) light-headedness (every, and I mean every time I stand up now), extreme temperature sensitivity in your teeth (No cold drinks, no ice cream, and even a salad with cold dressing can get painful very quickly) and excessive sweating.
Yeah, not a fun experience.
The surgery is to remove my spleen. “Why?” is something of an technical question. This is the best answer I can give. Mechanically, the spleen is part of the immune system that actively filters our large infections. So when it has its wires crossed like mine seems to, it is evidently responsible for most of the damage to my red blood cells. The good news for me is that the spleen is not a critical organ after adolescence and early adulthood. In children and teens, it is immensely important in the development of immunities, but that role diminishes after the last phase of puberty. Apparently tens of thousands of people have their spleens removed each year across the US, Canada and the UK, (three countries that routinely share their medical data), and they go on to live mostly healthy, normal lives.
Also, even if the body wasn't attacking my red blood cells, there is overwhelming empirical evidence that removing the spleen will reverse auto-immune issue in a large number of cases. Most doctors can not explain the connection, or why the removal has the effect it does, but as I said before, the empirical evidence is rather substantial and thorough.
Well, that about covers it. By the time anyone reads this, I'll probably be either on my way to Oklahoma City to check in, actually in surgery, or out and recovering. Right now I am just tired. But I am sure by the time I am at the hospital I will be as nervous as I was last week.
Then again, maybe not, who knows.
I'll have a laptop, a DVD player, movies, anime and the Internet to help keep me sane during my stay in the hospital.
All I can do now is pray for the best, and leave it in God's hands.