I am writing from Elkton, Maryland a day and a half or so after a red-eye flight out of Sea-Tac, a mediocre sleep on the plane, and a two hour power nap once we reached our good friends' home. Today is a day of relaxing which for me means watching the SPEED Channel during the day and the Final Four tonight. For Kelly and her good friend Lori, it means a manicure and a pedicure in Wilmington, DE for some much needed girl time. Tonight, I'll bring a little West Coast/Pacific Rim grilling to this little East Coast town with some Beaver Chicken (basically teriyaki but far superior).
The appointment at Johns Hopkins is scheduled for Tuesday morning at 8 am ET. We have no idea what is in store, what the doctor will recommend, what types of treatments I am even eligible for based on my diseases and treatment history. All we know is that this doctor has seen as many if not more patients than anyone with my conditions and we are seeking the best medical advice available. Frankly, we are trusting that God has already given this doctor the wisdom to guide us through this process, whatever it may be.
Your encouragement and your prayers have meant so much to Kelly and I as we have prepared for this trip. The planning, the reservations, the timing...everything has seems as thought God has orchestrated this from the beginning. That should come as no surprise, should it? The maker of the universe should be able to conveniently schedule a doctors appointment during our spring break. Yet even the most mundane and seemingly insignificant details I often chalk up to coincidence should be recognized as divine moments where God literally reaches down, firmly grabs my shoulder with his massive hands, and guides me.
This post would be incomplete without me venting my continued frustration with the lack of progress in my blood counts. I feel like I need a punch card for blood transfusions lately. I have had to visit the hospital at least a day per week during the past month for one reason or another, capped by a full day of taking two units of blood and platelets on Thursday to "top off" before taking off during spring break. It is survival right now but it is all we can do.
As for this weekend, Kelly and I are going to enjoy our first visit to this part of the country. Annapolis Sunday, DC Monday, and Baltimore Tues...Not a bad weekend for boy from Corvallis, OR and a girl from Kelowna, BC.
Thursday, March 31, 2011
Thursday, March 17, 2011
Happy Saint Patrick's Day. I was really worried tonight, however my worry did not begin with a sub-par blood draw yesterday or a general feeling of fatigue that comes with low counts. When I arrived at the hospital at 6 pm to receive another two units blood, I thought to myself, "Day one of the NCAA tournament is probably not a bad time to be stuck in a hospital room with nothing to do but watch basketball." Once settled, I simply asked the nurse to bring the portable TV arm close enough so I could get started with tournament action. The worry set in when the damn thing would not turn on.
Nothing to do but watch tournament basketball and I DON'T HAVE A FREAKING TV. Considering my options, I was about ready to inquire with the nursing staff about a simple fix or another room when it dawned on me...live games online, and I remembered my laptop. God is good.
As I write I'm watching Gonzaga and St. John's duke it out and Gonzaga has an early 32-21 lead. Gonzaga is what I like to call a "homer" pick in my bracket. I end up picking a bunch of teams based on a clear west coast bias, regardless of seed or match-up. It usually buries my bracket early but I can sleep at night. One of these years all my Pac-10 (or should I say Pac-12) teams (and other west-coasties) will work their way to the Sweet 16 or the Elite 8 and the tournament will belong to me. Until then, I'll keep lighting $5 on fire every year and enjoy watching every other team advance.
So here I am in the hospital again on a Thursday night getting transfused with Red Blood Cells. The counts have been worse but we saw a trend this week as I got checked, and after taking platelets on Monday night I knew that I would need blood again to get me through the next couple weeks. Here were the counts yesterday, March 16:
Hemoglobin: 5.9
Hematocrit: 17.1
Platelets: 28,000
The platelets are obviously higher because of Monday's transfusion but the writing was on the wall for the red cells. Not wanting to give up any weekend time, I decided to come in as soon as possible and take care of business after school. It will be a late night tonight, but it will be done and I can function on Friday and enjoy my weekend.
It is so frustrating to be so dependent on something so essential to health and life. Think about it, I am literally plugged into a fueling station that is letting my motor continue to run. Whatever function we humans are designed with to sustain our own fuel with only the simplest of building blocks is non-existent in my body right now and that kind of scares the hell out me. I can't help but think about how long this is going to last, having to get hooked up on a weekday evening just so I can turn around and head back to the day job and contribute to society.
The question came up between Kelly and I if I should still be working, considering the mental and physical demands and how they may or may not be affecting my health. Neither one of us could even decide for ourselves what the impact is and therefore we could not come to a conclusion. So indecision defaults to the norm and the alarm is set for 5:30 tomorrow morning so I can prepare my classroom for another day of 12 and 13 year old learners.
In the last blog, I described our efforts to travel back to the east coast to meet with a new doctor that could partner with us in treatment options. I am extremely happy to announce that thanks to a relentless pursuit of results by my wonderful wife, we are scheduled for an April 5 appointment with a doctor at Johns Hopkins in Baltimore, MD. We are realistic that we may leave with as many questions as answers but this medical center and this doctor have treated as many if not more patients with my conditions than any other. The experience alone gives us confidence that we are moving towards the best treatment options and the best hope for my future.
As much as I am relying on God's strength right now for everything, my heart is heavy for friends and family that are living through trials of their own. My prayers for others include defibrillator surgeries, job loss, and recovery from surprise heart attacks. I spend as much time thinking about and praying for the closest family and friends, knowing full well that the stress and weight of worry can be as debilitating as the affliction itself. Being strong for those you love needs just as much divine intervention as fighting the battle itself.
Gonzaga is up by 14. Looks like I might get a "homer" pick after all. Maybe the Dawgs will show up tomorrow and really make me glad I picked from the heart.
Brian
Nothing to do but watch tournament basketball and I DON'T HAVE A FREAKING TV. Considering my options, I was about ready to inquire with the nursing staff about a simple fix or another room when it dawned on me...live games online, and I remembered my laptop. God is good.
As I write I'm watching Gonzaga and St. John's duke it out and Gonzaga has an early 32-21 lead. Gonzaga is what I like to call a "homer" pick in my bracket. I end up picking a bunch of teams based on a clear west coast bias, regardless of seed or match-up. It usually buries my bracket early but I can sleep at night. One of these years all my Pac-10 (or should I say Pac-12) teams (and other west-coasties) will work their way to the Sweet 16 or the Elite 8 and the tournament will belong to me. Until then, I'll keep lighting $5 on fire every year and enjoy watching every other team advance.
So here I am in the hospital again on a Thursday night getting transfused with Red Blood Cells. The counts have been worse but we saw a trend this week as I got checked, and after taking platelets on Monday night I knew that I would need blood again to get me through the next couple weeks. Here were the counts yesterday, March 16:
Hemoglobin: 5.9
Hematocrit: 17.1
Platelets: 28,000
The platelets are obviously higher because of Monday's transfusion but the writing was on the wall for the red cells. Not wanting to give up any weekend time, I decided to come in as soon as possible and take care of business after school. It will be a late night tonight, but it will be done and I can function on Friday and enjoy my weekend.
It is so frustrating to be so dependent on something so essential to health and life. Think about it, I am literally plugged into a fueling station that is letting my motor continue to run. Whatever function we humans are designed with to sustain our own fuel with only the simplest of building blocks is non-existent in my body right now and that kind of scares the hell out me. I can't help but think about how long this is going to last, having to get hooked up on a weekday evening just so I can turn around and head back to the day job and contribute to society.
The question came up between Kelly and I if I should still be working, considering the mental and physical demands and how they may or may not be affecting my health. Neither one of us could even decide for ourselves what the impact is and therefore we could not come to a conclusion. So indecision defaults to the norm and the alarm is set for 5:30 tomorrow morning so I can prepare my classroom for another day of 12 and 13 year old learners.
In the last blog, I described our efforts to travel back to the east coast to meet with a new doctor that could partner with us in treatment options. I am extremely happy to announce that thanks to a relentless pursuit of results by my wonderful wife, we are scheduled for an April 5 appointment with a doctor at Johns Hopkins in Baltimore, MD. We are realistic that we may leave with as many questions as answers but this medical center and this doctor have treated as many if not more patients with my conditions than any other. The experience alone gives us confidence that we are moving towards the best treatment options and the best hope for my future.
As much as I am relying on God's strength right now for everything, my heart is heavy for friends and family that are living through trials of their own. My prayers for others include defibrillator surgeries, job loss, and recovery from surprise heart attacks. I spend as much time thinking about and praying for the closest family and friends, knowing full well that the stress and weight of worry can be as debilitating as the affliction itself. Being strong for those you love needs just as much divine intervention as fighting the battle itself.
Gonzaga is up by 14. Looks like I might get a "homer" pick after all. Maybe the Dawgs will show up tomorrow and really make me glad I picked from the heart.
Brian
Monday, March 7, 2011
With instability being the only constant, my extended weekend began with a simple step of faith and proceeded with what I would consider an divinely orchestrated plan. God has an amazing way of sending us little messages, nudging us in seemingly awkward directions, and finally showing us the map after we've reached our destination. This is just as true for a short weekend as it is for the navigation of our entire lives.
On Thursday night my wife stopped by our Shuksan wrestling practice with some concerns of her own, and in our conversation she asked how I'm "feeling." That is a loaded question and the answer always differs depending on who I'm talking to, but I know what she wants to know and I didn't hold back. I was beat down...exhausted! I knew my counts were low and it takes REALLY low counts for me to be able to feel that weight.
The first step is always to get my blood drawn, so a planned Friday morning blood draw was bumped to Thursday night and sure the enough, the numbers didn't lie:
HGL 5.2
HCT 15.8
PLA 10,000
The Hemoglobin and Hematocrit were as low as they had ever been, which was no surprise. The best way to describe red cells being that low is that I can literally feel the weight of my limbs hanging from my body without lifting them, I can feel my pulse race over 100 bpm just standing up, and it can even effect the clarity and quality of my speech if I talk too fast. I needed rest and I needed blood.
For those of you who have read previous posts, you know that ordering and receiving blood products is not necessarily a slam dunk. Ideally, I would take a sick day on Friday, go to the hospital for a blood transfusion, and feel much better sooner than later. The decision to take the day off on Friday came out of self preservation and no promise of blood being available that day. In fact, I anticipated resting all day and planning on a Saturday transfusion that would leech half my weekend.
Here is where God took over my schedule. I received a call Friday morning letting me know that one unit of blood was already available and in Bellingham (what are the chances of that) and I was to come in right away. The second unit and platelets would be available later in the day, conveniently after I went and coached our first Shuksan wrestling match of the season over at Fairhaven Middle School.
A quick stop at Subway for a Chicken Bacon Ranch Sandwich (with chipotle sauce) and I was back at the hospital for round two late on a Friday night, thus taking advantage of a precious sick day and getting needed medical attention. More importantly, I was able to preserve my entire weekend for precious time at home with my family. A morning of homemade blueberry buttermilk pancakes and sausage (yes I am the chef) sure beats an IV start with a type-and-cross at St. Joe's.
The most difficult realization this weekend was the reality that the blood counts are not improving with current treatments. We are incrementally increasing doses as the kidneys can handle it but so far there is no progress. In my last post, I mentioned that Kelly and I are seeking out other possible treatments and not limiting ourselves to Bellingham or even the state of Washington.
Since the last blog post, we have forwarded my medical records to Johns Hopkins medical center in Baltimore to a doctor that has specialized in Aplastic Anemia and PNH for years. Once Hopkins reviews my records, Kelly and I will fly to Baltimore for a consultation to talk about the best options for treatment and our future. One treatment in particular would involve returning to Baltimore for the summer to undergo an aggressive but potentially successful treatment for patients with very similar case histories.
The point is, there is HOPE! Hope for new information. Hope for discussions of curing rates versus long-term medication management. Hope for a future!
On Thursday night my wife stopped by our Shuksan wrestling practice with some concerns of her own, and in our conversation she asked how I'm "feeling." That is a loaded question and the answer always differs depending on who I'm talking to, but I know what she wants to know and I didn't hold back. I was beat down...exhausted! I knew my counts were low and it takes REALLY low counts for me to be able to feel that weight.
The first step is always to get my blood drawn, so a planned Friday morning blood draw was bumped to Thursday night and sure the enough, the numbers didn't lie:
HGL 5.2
HCT 15.8
PLA 10,000
The Hemoglobin and Hematocrit were as low as they had ever been, which was no surprise. The best way to describe red cells being that low is that I can literally feel the weight of my limbs hanging from my body without lifting them, I can feel my pulse race over 100 bpm just standing up, and it can even effect the clarity and quality of my speech if I talk too fast. I needed rest and I needed blood.
For those of you who have read previous posts, you know that ordering and receiving blood products is not necessarily a slam dunk. Ideally, I would take a sick day on Friday, go to the hospital for a blood transfusion, and feel much better sooner than later. The decision to take the day off on Friday came out of self preservation and no promise of blood being available that day. In fact, I anticipated resting all day and planning on a Saturday transfusion that would leech half my weekend.
Here is where God took over my schedule. I received a call Friday morning letting me know that one unit of blood was already available and in Bellingham (what are the chances of that) and I was to come in right away. The second unit and platelets would be available later in the day, conveniently after I went and coached our first Shuksan wrestling match of the season over at Fairhaven Middle School.
A quick stop at Subway for a Chicken Bacon Ranch Sandwich (with chipotle sauce) and I was back at the hospital for round two late on a Friday night, thus taking advantage of a precious sick day and getting needed medical attention. More importantly, I was able to preserve my entire weekend for precious time at home with my family. A morning of homemade blueberry buttermilk pancakes and sausage (yes I am the chef) sure beats an IV start with a type-and-cross at St. Joe's.
The most difficult realization this weekend was the reality that the blood counts are not improving with current treatments. We are incrementally increasing doses as the kidneys can handle it but so far there is no progress. In my last post, I mentioned that Kelly and I are seeking out other possible treatments and not limiting ourselves to Bellingham or even the state of Washington.
Since the last blog post, we have forwarded my medical records to Johns Hopkins medical center in Baltimore to a doctor that has specialized in Aplastic Anemia and PNH for years. Once Hopkins reviews my records, Kelly and I will fly to Baltimore for a consultation to talk about the best options for treatment and our future. One treatment in particular would involve returning to Baltimore for the summer to undergo an aggressive but potentially successful treatment for patients with very similar case histories.
The point is, there is HOPE! Hope for new information. Hope for discussions of curing rates versus long-term medication management. Hope for a future!
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