Tuesday, March 3, 2009

Just a few things before heading to the hospital.

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.

Lord Ivo Blackhawk
Protege to Master Robert Fitzmorgan
Province of Mooneschadowe
Kingdom of Ansteorra
"God Save the King!"

Sunday, March 1, 2009

A not so funny thing happened on the way to the hospital....

Well, let it never be said that I live a dull life.

Case in point, the days of March 23 rd through the 25 th.

The 23 rd, a Tuesday, was to be the final prep day before my surgery. We had a lot on the agenda for that day. My wife, son and I were going to load up in the van, drive down to Oklahoma City and the Hospital. Once there, I would get some blood drawn, nothing too drastic, and then we would head out to the airport and pick up my mother, who was flying in from Virginia in order to help me out while I was in the hospital and then for the first few days while I was home recovering. After picking her up, we were going to hit a few places in the city, and then probably head home so I could get the last minute prep done before my scheduled surgery the next day.

Well, things didn't exactly go according to plan.

I got to the hospital at about ten in the morning, and went to the lab. They didn't have the orders yet for the blood work (this isn't uncommon, or even that big a deal. Ive done blood work there before, and this is very routine). So, the call down to the Dr's office and ask them to send up the orders.

A few minutes later, the phone rings, and the technician tells me that the Dr's assistant wants to see me before they do the draw. Shrugging, and figuring that I forgot to sign some paperwork or the like, I head down to the Dr's office.

I get there... and the next thing I know the nurse practitioner asked me to step into one of the rooms and speak with her. At this point, I start to worry; private conversations with people who can write prescriptions are seldom good in my experience.

Well, my hunch was right. The nurse looks at me, and with a scolding face says “Why didn't you go back to your primary care physician and get your dosage of Prednisone reduced like you were told to?”

Well, getting frowned at by a woman less than five years my senior certainty wasn't a winning way to approach this conversation. But let me tell you, there were a lot of presuppositions in her opening statement that really, really didn't go over well with me.

Translation... rather than cower and apologies for the implied failure, I went on the offensive.

“I was never, in any way, told that I had to speak with anyone about lowering my medication dose. Also, I have been calling and asking this office questions about my medication and its dosage just before surgery for over a week now. Why in the HELL did you wait until the day before surgery to put two and two together and bring this up?”

There was an attempt at a rebuttal argument from the nurse. Evidently the doctor had written down in his notes that he had told me to speak to my primary care physician about reducing my predisone dose. That line of reasoning got shot down like a noisy mallard on the opening day of duck season.

“I don't care what your notes say. I have been managing and monitoring my own personal health with multiple doctors for over a decade and a half now. If you think for one second that I would let an instruction like that slide by without writing it down in triplicate, let me cure you of that delusion real fast.”

She didn't press the issue. In fact, she did the smart thing and cut to the chase.

“Well, the surgeon has reservations about operating on someone taking as much prednisone as you. So he's going to cancel the surgery and try and reschedule you for some time next month after we can lower your medication levels.”

Had I been wearing a blood pressure cuff right then, there is no doubt in my mind that the reading would have spiked. My mother had just flown in from Virginia, I had just finished juggling a quarter million dollars worth of contracts at work so that my absence wouldn't be too traumatic to the work situation, and my family on both sides were rearranging their schedules to best help me. Needless to say, a one month delay would be catastrophic for everyone. Not to mention that my own health was slowly getting worse thanks to the prenisone's side effects. Mid March or early April might see me in a wheel chair or with a walking cane at the rate I was going.

“I want to talk to the doctor!” I demeaned.

“He's in surgery today.”

“When will be be out?”

“Not for another hour or more.”

“I'll be here.”

“He might not be able to get down here, he has another surgery scheduled for the afternoon.”

“He has to go home sooner or later. And like I said, I'll be here.”

So, long story short, the man finally got out of sugary at around twelve thirty or one, and met me. To his credit, he was much more receptive to my situation and arguments than I anticipated.

The summary of the conversation is this; prednisone is an imuno-suppressant, it literally is intended to weaken the human immune system. For a surgical situation, specifically the recovery period, this has the obvious drawbacks, including healing rates, and greatly reduced resistance to infections. On top of all of this, I was taking a huge dose compared to most people who take the drug. Not being a pharmacist myself, I don't know the hard science, but I am told that most people with my condition respond well to twenty milligrams a day. I was taking sixty.

Now, my counter argument was no less pointed, or well researched.

First of all, my hematologist didn't arrive at sixty milligrams a days by accident. There was a lot of trial and error (emphasis on error at times) with the dosages. We found out that after my third flare up of hemolytic anemia, any dosage short of sixty milligrams would trigger an almost immediate tailspin back into unchecked anemia, and the totally messed up blood chemistry that came with. So, if I was to reduce my prednisone dosage, depending on when the surgery took place, the doctor would either be operating on a patient with high dosage of prednisone, or a patient who was extremely anemic.

In the end, the Doctor told me that he wasn't happy with the situation. However, he told me to my face that I was not a typical patient, and it was obvious that I was better informed of my own situation, and my own medical condition that most people he dealt with. If I was able to articulate to him that I understood and appreciated the increased risk involved with going through with the surgery, he was willing to do it.

In other words, the ball was in my court.

“I'm no fool. I know that this is an increased risk. But you need to understand that I don't believe that anything is going to be accomplished by waiting, and I don't think you will be able to lower my medication dose anyway, at least not as low as your want.” He was talking about twenty milligrams a day, which is a pipe dream based on my medical history. “So I say we go for it.”

Much to my surprise he agreed without further protest, and wished me a safe drive home.

Now, keep in mind, that little chat was done by... oh... call it two, maybe two thirty. So, this whole time, four and a half hours worth, my wife and three-year-old son are sitting in the hospital cafeteria trying to stay entertained as I call them every so often with updates. By the time I got up to the lab to do the blood work I originally went there to do, they were both on the verge of tears from boredom induced frustration and fatigue. In the mean time, my mother had to get a cab from the airport to her hotel. She and I had been in contact via cell phone most of the day, so she was aware of the situation, though there wasn't much she could do except text me every little bit with “Just stay calm.”

In any event, I managed to meet my mother at the hotel later that day and we all went out to a late lunch and tried to find the positive in what was a totally screwy situation.

So fast forward a few hours, and you have me at three o'clock Tuesday morning, the day of the surgery. The game plan; I leave Stillwater at three thirty, pick my mother up from her hotel room in the city at quarter till five, and then we both hit the hospital at five or five fifteen. I needed to be checking in no later than five thirty, and didn't want to take any chances. The surgery was scheduled for eight. The plan was for me to head into surgery, and then for my mother to take my car, drive back to Stillwater and pick up my wife and son, and then for the three of them to be back before I was in the recovery room. That way my wife and son got a decent amount of sleep before what would be a long day in the surgery.

Well... guess what? Reality and “the plan” weren't reading from the same play book today either.

I filled out a respectable amount of paperwork, and was then lead to the surgical wing of the hospital. I was there all of a minute when a nurse met me and said that she had to do a blood draw immediately. While she was doing to draw, she explained that the lab had somehow screwed up my blood draw the day before, and that the cross type and match that was supposed to be done and ready for me had not even been started yet. While they ran the four vials of blood out to door to a courier, my mother and I reviewed the situation, and considered how this did not bode well for the rest of the day.

If I had only known...

Anyway, I was lead to the prep room, handed a bag for my personals, and then left to get ready.

Right about then the whole situation started to sink in, the fact that I was about to go under the knife, the fact that I was about to be rendered unconscious by a drug, and effectively have four or five hours blanked from my mind... you know, the whole deal.

A half an hour later, after handing over my wallet, Leatherman™ and phone to my mother, I kicked her out and proceeded to change into the paper gown. By the way, yes, those things are frigging drafty, even in a warm room.

The nurse who was overseeing me that morning was a lady name Sherry. One thing I will say for her first and foremost, if that she was professional to the core. She laughed and joked, yes, but when I had a technical question, she had an answer, and when I needed an extra pillow, she had one in hand before I finished the sentence. It was nice to know that I was being watched over by someone who knew there job inside and out, it helped put me at ease in a number of levels.

Anyway, that was, give or take, around six o'clock. My mother left around then to get my wife, leaving me at the hospital, hoping they got back before the doctor decided to wheel me in.

Right around then, I asked to speak with one of the hospital's chaplains. A short time later, a gentlemen in his sixties stepped in with a smile and an overall pleasant, cheerful attitude about him. We spoke briefly, and he was encouraging and uplifting. I spoke with him about my background dealing with the less than stellar performance of the hospital, and how things were getting a little hard to just deal with after so long of a wait to get the surgery. But, I told him that while I was mad, I wasn't asking for vengeance, or even punishment. I told him that I was willing to just forget everything if things go just start working now. No more mistakes, no more waits. I was happy to just let lessons be learned quietly and privately. All I asked that that things go smoothly today, no more mistakes, no more delays. I am normally the type to demand some consequences for errors, especially of the errors hurt me. But at that point, I was honestly willing to just let it all slide, forget about it entirely, for the chance to leave all of the frustration and delays behind and just to get the whole thing over with. We prayed on the subject, and he wished me the best of luck before departing to see another patient. For what It was worth, the visit reassured me, and helped put me more at ease.

Around seven, I met the anesthesiologist. He was a relatively laid back guy, sociable, and easy going. We talked for a few, he explained a few things, mostly general stuff about his end of the surgery, the general risks involved, and what to expect when I woke up. When he left I was mostly calm about the while thing. I was starting to realize how professional the team was that would be working on me, and for someone who was scared stiff by the surgery, it was a good realization for me.

My family arrived at eight, just after Sherry had stepped in and explained that the Oklahoma Blood Institute hadn't finished the analysis of my blood yet. So, I knew the eight o'clock start for surgery was out the window. But the nurses said that that didn't mean anything and they could always reschedule me for later on in the day.

After kissing my wife, and hugging my son—who was thrilled to see me, and kept asking me “Are they going to fix you and make you all better, daddy?”—I manged to get everyone out of my room so I would take stock of a still mostly on-track situation. I was kind of resolved that things weren't going to go off on schedule, but I was there with an IV in one arm, what were the odds that they were going to send me home after all that?

I was actually so tired by the time ten o'clock rolled around that I fell asleep and napped for a bit.

Now, there was a lot, and I mean a LOT of people in and out from eleven to twelve thirty, all talking about how the blood work was almost done and all they needed was a final word from OBI.

Then, to make a long story short, the doctor walked in at twelve thirty and explained that we had waited too long, and that they couldn't find an anesthesiologist who hadn't been on his feet for eight hours already. The original one was in another surgery by then, and all of the others were likewise commuted, or had been operating since midnight.

They were sending me home.

I told the doctor to call my family in, he could explain to them why I was being sent home.

So my family came in, some idiot nurse told them that I was about to head to surgery, so they thought they were getting a final “best wishes” in before that. My wife was livid when the Dr rold her that I was going home. My mother was stunned beyond words, and my son was perplexed as to why everyone looked so tense. Right around this time I told the nurse by the door to close it and make sure it was latched. With the door closed, a calmly called everyone's attention to me, then, I told the doctor what was on my mind.

“I was referred for this procedure five months ago. The letter said, in ink, with hematologists signature below it, that I needed to be off of prednisone as soon as possible. First you guys forget about me for three months. That's three months without so much as a phone call from your office. And then you screw me out of four hours of sick time I don't have for a Dr's appointment with the wrong doctor. And then we spend yesterday almost canceling this surgery because someone didn't figure out that I was still on my original dose of prednisone, despite a half dozen phone calls to your office over the past week asking what the doctor was going to do about my super high doses of that drug during my recovery. And today we just scrubbed the whole procedure because of some blood characteristic that you knew about a week ago, and that I gave a blood sample for yesterday. But I here we are, five hours late because they had to run those same tests a second time, less than two hours before we were supposed to be in surgery.

Now, in the mean time, I have put on almost seventy pounds while on this crap. I can't pick up my own son for more than a minute or two. I can't walk more than a quarter mile without my back and knees giving out. I can't stand up at all without getting light headed and having the world stand on its head. I have maybe two pairs of jeans that still fit, I can't ware my wedding band or my high school class ring anymore, and my health is just going down hill in general thanks to the drug, and the only reason I'm still taking it is because I don't feel like dieing an even quicker death from the anemia its holding at bay.

So, all I want to know is this?

Who gets what punishment when you have to wheel me in here in a wheel chair some time in the middle of April when I am too sick to walk?

Who is going to have a God damned letter of reprimand in their folder for when you all wait too long and I get light headed and fall down a set of steps and break my leg, or arm, or back?

Who is going to get yelled at when I've been on this drug so long that my Hepatitis-C goes active and my liver gets turned into pulp?

I would like to know what is the punishment for letting someone sit long enough to just die of the treatment before the disease actual gets around to killing him!”

I was actually on the verge of tears at that last point. The nurse at the door looked like she wanted to run out of the room.

Sherry was there too, and she looked mad, but not at me. I think she was just mad at the situation, while it wasn't her fault (she and I had spoken a lot before this whole scene) she took it personally that a patient under her care wasn't going to get the treatment he needed. She told me that she was going to make sure that heads were going to roll over the lab screw up, though she had no idea of how many other screw ups I had been through.

I hesitate to say here exactly what took place after that (the conversation was expanded to include some face-time with higher level administrators and people with more power than doctors) . But I can say with a decent measure of confidence that I think the people who make decisions about my case finally started to realize how bad off I was, and how much worse I was getting.

To there credit, and as a point of fact, I was rescheduled for a new surgery on the following Tuesday. The time and date was set by three that afternoon. I got the phone call while my family and I were at lunch, trying to make sense out of the whole situation.

The rest of the day was spent mostly with each of us in some measure of a state of shock, trying to figure out what had just happened, and why it had happened at all. I was still stunned over the whole thing, really stunned.


So, lets put a bookend on this whole thing.

Thursday evening. My mother has spent all day at my place cleaning, and is taking my car back to the hotel. I gave her instructions on how the get back to the hotel, they consist of:

“Go out of the development, made a left, then go to the first traffic light you hit and make a right. Then you drive about fifteen miles and the hotel is on the right.”

So she leaves, and about ten minutes later I get a call on my cell phone. “Um... I don't remember the pavement ending and the road becoming gravel.”

Translation: she didn't make that right at the light.

My reply. “Mom, do you remember the Connoco at the light?”


“Go back to the Connoco with the traffic light, and make a left. Then go the fifteen miles and your hotel will be in the right.”

“Okay... thanks.”

Fifteen minutes later. Ring ring... “ Um, son, do you know where Highway 108 is?”

Translation: She turned the wrong way at the light, and was now about 8 miles in the wrong direction.

“Mom.... Do you remember where that Connoco is?”

“Um , yes.”

“Go there.... and wait for me.”

So I go to the gas station and wait for my mother to pull in. She gets there and tells me my car is on empty so she is going to gas it up. The only problem is that she parked with the gas tank on the wrong side of the car. I offered to gas the car up while she went in to get some milk for her coffee in the morning. A few minutes later she walks out and I hand her my TomTom, show her how to use it and hand her back the keys.

Notice anything missing from this list of things?

I didn't either... until I heard the sound of the breakaway coupling ripping as my mother put the car in drive and drove off, trailing twelve feet of gas hose behind the car.

When it was over I didn't know what to do; laugh or cry...

so I did both.

Lord Ivo Blackhawk
Protege to Master Robert Fitzmorgan
Province of Mooneschadowe
Kingdom of Ansteorra
"God Save the King!"