Moving Forward

One thing about heavy doses of medication is that it messes with sleeping and waking. Up earlier than usual today, I find myself grateful for the time I have to drink buckets of coffee, do a little Ebay shopping, and sit down to write another entry.

During my scheduled infusion on Tuesday, my doctor answered a point blank question about whether or not I should return to work. He actually told me that my counts are stable enough and showing enough improvement that he okayed me to return to work next week. He even went as far as saying that a full return is okay to preserve any remaining sick time I still have stored. The major concern was risk of infection which has always been a risk for me. Kelly and I were more concerned about risks related to stress of work and how that might affect progress. The doctor reassured us that the medications will do their work in spite of the day job.

Neither Kelly nor I are naive about how work and stress can affect the physical body. Much of our "return to work" conversation was peppered with questions like, "What time are you planning on getting to bed?," and, "What time are you going to get up in the morning?," followed by, "Do you have anywhere you can rest at school during the day?"

Although my schedule will adjust, returning to work will be refreshing and live giving. I love teaching, working face to face with students, coaching, and collaborating with other staff in my school. The beginning of the second semester provides such a clean new beginning for myself and my students, so much so that I am enjoying those early September butterflies all over again as I prepare.

The Numbers Game

The one question that most people have when I speak to them face to face is, "How do you feel?" I love answering that question because I can give the most positive and honest answer. I feel great, in spite of the numbers (the numbers are still keeping me humble, and serve as a reminder to not push too hard too fast.)

Here they are as of Tuesday Jan. 25:

Hemoglobin: 6.4

Hematocrit: 18.8

Platelets: 12,000

Although the red cells are not showing progress, the platelets have shown stability and even the slightest growth. Keep in mind the difference between 6 and 12 is NOTHING when compared to the low end of normal which is 150. Platelets however are a good indicator of early growth.

As I write I am listening to one of my top 5 favorite songs of all time. The song "Hold me Jesus" by Rich Mullins has resounded as an anthem in my life for more that one ailment or trial. Here are some of the lines:

"Sometimes my life just don't make sense at all,

when the mountains look so big and my faith just seems so small.

So hold me Jesus 'cause I'm shaken like a leaf,

You have been King of my glory, won't you be my Prince of Peace."

and...

"Surrender don't come natural to me.

I'd rather fight you for something I don't really want,

than take what you give that I need."

Thank you all for your prayers, your thoughts, the meals, the gifts, the calls, the visits, the emails, the comments, and every other countless way you have blessed me and my family. Everything has served to strengthen our faith and our spirits during this continuous battle. I thank God for all of you!

There have been several blood draws since my last post, and the consensus is that nothing is happening quite yet. I have had transfusions of platelets and red cells which boost the numbers only temporarily but by body has not shown an ability to produce on it's own. Hopefully a few small adjustments to medication will ignite a spark and we'll start to see even the smallest improvement.

Here were the latest numbers as of Friday Jan, 14. See my previous post for normal ranges (remember the Hemoglobin and Hematocrit are up only because of a recent transfusion):

Hemoglobin: 6.7

Hematocrit: 19.5

Platelets: 6,000

Meanwhile, I need to thank you for your prayers for patience as much as anything else, because waiting is hard. I am not a sit and stay type person, and resting is a learned activity for me. With thoughts of work and contributing to society simmering on the back burner, I need to release my agenda and allow myself to heal in whatever time it requires.

I have been so grateful however for the time I've been able to spend with my wife and daughters. Usually my family is widowed from November to February for the high school wrestling season, but I have never watched so many dance classes, had so many coffee dates, or seen so many basketball games as I have this winter. I am truly grateful for the time I have had with my girls and with Kelly.

I do believe that God had my best in mind recently when he did not allow the Oregon Ducks to beat Auburn in the national title game. Putting up with "Duck fan" is bad enough without them winning a BCS game.

Thank you all for your continued thoughts and prayers through this battle.

Not a verse today, but an older song lyric by Stephen Curtis Chapman:

"His strength is perfect when our strength is gone."

This is my first attempt at blogging. Check that, it is my second but the first was obligatory and covered a topic I knew so little about it was almost embarrassing. How much can a football and wrestling coach really enlighten rugby fanatics and families about a tour to Scotland anyway? No, this blog is the first outpouring of something far more meaningful to me, however fun the tour may have been.

I am writing to inform, update, vent, and even possibly inspire. Inspire says I? Well, that sounds a little arrogant so let me qualify the word by saying that I feel "inspired" to write.

"...speaking of beliefs and feelings, is it so hard to believe that God has brought you here?"
- Priest in Confessional from the movie The Boondock Saints

So here I am, feeling in some way inspired to write about myself. Any why? The purpose is layered deep but at least the surface is perfectly clear. In recent months I have experienced some significant health issues, which for those of you that know me well is nothing new. I have dealt with significant health problems in the past, but the game has changed and now it is time to inform.

In April of 1999, I was diagnosed with a blood disease called Aplastic Anemia, an auto-immune disease that prevents the body from making enough blood. I have undergone varying degrees of immuno-suppresive therapy that has allowed me to function relatively normally for almost 12 years. During that time my blood counts have spiked and dipped, but very rarely has it affected my quality of life.

On November 1, 2010 the game changed. After a moderately successful day of teaching middle schoolers, I ventured 25 miles south to coach a JV football game. During the game, I felt the onset of illness but was experiencing flu-like symptoms and thought if I could make it home I could sleep it off. To make a long story short, the next day I was hospitalized with liver and kidney failure caused by a blood clot in a vein in my liver. After a week of hospitalization, a team of doctors, and a myriad of tests, I was diagnosed with another equally rare blood disease called Paroxysmal Nocturnal Hemoglobinuria or PNH. This gem of a disease causes the precious few red blood cells I have to break down prematurely and cause clots in my veins. The two diseases are related in that patients with Aplastic Anemia are more likely to have PNH, although there is no cause determined for either in my case.

That is a lot of medical B.S. and if you want more feel free to follow the links, but here is what it has meant to me since that day in November. I haven't worked since. I guess is pays to only take a day or two of sick days per year because when you need them, dammit you NEED them. At first it was the recovery from organ failure but right now my blood counts are critically low and improvement is a waiting game. We are currently relying on bi-weekly blood counts and hoping and praying for improvement. For those of you scoring at home or alone, here are today's counts (Disclaimer for those of you in the medical profession, prepare to break into a cold sweat when you read these):

Platelets: 6000 (normal range is 150,000 to 450,000)

Hemoglobin: 6.1 (normal range is 14 to 18)

Hematocrit: 17.6 (normal range is 42 to 52)

For those of you praying for me, MY normal is not within the normal ranges listed. At best I hover below all three, but I function normally at such levels and that is what we pray for in the Porteo-house. I am on separate drugs for each disease, none of which have any immediate side effects and long term side effects are much like other drugs where organ function is the major concern. Blood counts are the primary indicator of any changes in my condition and we watch them very closely.

Bored yet? I am. Reciting this information is a little redundant for me, but I know that so many of you care about me and my family. This information is to help you understand exactly what is going on, how I am doing with it, and how you believers can pray for us.

As for how I feel, I feel remarkably well. The counts say otherwise but I have a very hard time telling the difference between healthy counts and low counts in my body. Change is often gradual and my body adjusts slowly as the counts either increase or decrease. That is why blood draws are so important for measuring progress. I had great hopes of returning to teach middle school on Jan. 3 but I am protecting the stress level of my day in hopes of my counts improving. The new return date is now Jan. 31 pending improvement.

I suppose I should say something inspirational, motivational, or encouraging for all of you that dared to read this entire post. Let me leave you with a couple things I have learned so far from this ordeal.

Psalm 46:10 says, "Be still and know that I am God..." The literal and all too real translation for me is, "Be still, or I let you get your ASS beaten, and THEN you'll know that I am God!"

On a serious note, 1 Timothy 4:8 says, "Physical training is of some value, but godliness has value for all things, holding promise for the present life and the life to come." Our physical bodies are SO secondary to the health of our spiritual lives, today and tomorrow.

Brian