Things were looking bright this morning as we headed for the slopes. The sun was shining, we made first chair but as soon as I skied of the lift, things took a turn for the worst.
I had recently taken my skis into a Denver shop for a full tune and wax except they forgot to do one important thing...wax my left ski! Needless to say, skiing with one nice ski and one acting as an anchor was no fun! I made it down safely but not so gracefully and headed straight to a ski shop. Problem solved.
I took it easy for a few runs and helped a friend learn to ski, then headed to my favorite run Bachelor and it's moguls! I thought my bleed from earlier in the week was completely healed but after some aggressive turns I knew something was wrong. My day was done.
Although things didn't work out how I planned, any day on the slopes beats any day at work! We will see how things feel tomorrow...and hopefully ride Vail!
Hemophilia has had a huge effect on my life and despite everything this disorder limits me in, there are more then enough ways to lead a normal exciting life. This blog is designed to show those living with this disorder, whether it directly effects you or a family member or friend, how to live an exciting and normal life despite some limitations. Enjoy and feel free to share your stories as well!
Saturday, January 28, 2012
Thursday, January 26, 2012
First Bleed of 2012
I haven't talked about this new clinical trial I have been on, mainly because I didn't want to jinx it but after 6 months and only a couple bleeds, I think it's about time. Last summer, shortly after my trip to Africa, I was approached by the treatment center about a new long lasting rFIX(r means recombinant) product in the last phase of clinical trials. I was slightly skeptical as most in hemophilia community probably would be after being on a product for years and years but Dr. Manco-Johnson assured me it would a good product for my lifestyle. I would only have to infuse once a week!!!!! I was truely amazed and excited. Could it be real? Could it really work?
I have now been on this study for about six months and I couldn't be happier! I have had two break-through bleeds which is quite surprising considering some of the activities I have taken part in. This past week was break-through #2. Not sure exactly what happened but after a long weekend renovating the house, Monday morning started with an aching calf muscle and some swelling. Can't complain to much though since I was up to 2-3 bleeds on month before this product. Has anyone else out there had any experience with "long-acting" factor? Would love to hear some stories and comments on the subject and lets all hope these bleed resolves in time for skiing this weekend! Pictures and hopefully video to follow!
I have now been on this study for about six months and I couldn't be happier! I have had two break-through bleeds which is quite surprising considering some of the activities I have taken part in. This past week was break-through #2. Not sure exactly what happened but after a long weekend renovating the house, Monday morning started with an aching calf muscle and some swelling. Can't complain to much though since I was up to 2-3 bleeds on month before this product. Has anyone else out there had any experience with "long-acting" factor? Would love to hear some stories and comments on the subject and lets all hope these bleed resolves in time for skiing this weekend! Pictures and hopefully video to follow!
Friday, December 23, 2011
Tackling Kilimanjaro: Becoming the First American with Hemophilia to Summit (Part 2)
Part 2
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| Shira Camp Sunrise |
Morning of the third day of the climb revealed one of the
most spectacular views I have ever seen.
A thin layer of clouds lay below us enveloping the African countryside,
only neighboring Mt. Meru peaked through the clouds. The sun slowly broke through the clouds in
vibrant color to reveal the summit of Kilimanjaro. It was unbelievable, I was memorized. Getting started wasn’t a problem today. After two uneventful and somewhat easy days
behind us I felt a calmness that I hadn’t felt before. With two relatively easy days behind us I
came to the conclusion that although today was supposed to be an infusion day,
I would skip the infusion and see how things went. Little did I know this decision would almost
cost us the summit and the rest of our trip.
After an amazing breakfast we began one of our “climb high
sleep low” days. This is a common
practice in mountaineering because it helps in the acclimation to high
elevation. Today we would climb to the
Lava Tower then descend back to Barranco Camp in a climbing day that would last
close to 7 hours.
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| Hiking to the Lava Tower |
The climb began uneventfully. A slight but constant uphill grade confronted
us and the terrain quickly become vacant of most vegetation. It was as if we had been transported to
another planet. Large volcanic boulders
lay strewn about the mountain side.
Today the glaciers atop the summit of Kilimanjaro were clearly visible with
an amazingly clear blue sky backdrop.
The summit peak, also known as Kibo (Kilimanjaro is actually comprised
of three volcanos which together are called Kilimanjaro), stood in full view of
us all day. Today I realized just how
far the summit still was. With every
step, the summit seemed to stay exactly the same distance from us. It seemed as though we were fighting a never
ending battle. Several hours passed as
my uncle I became entranced into a rhythmic march up the mountain side. Today I would travel to the highest point I
had ever been without the aid of an airplane.
Our goal for the day, the Lava Tower, stands at 15,190ft, almost 1,000ft
higher then I have ever been. How would
my body react? I have read many horror
stories of individuals at elevation and the sudden sickness it can bring. Would this elevation be my breaking
point? To this point I have felt
incredibly good and strong but elevation is a very tricky adversary. I also had not taken any Diomox, a drug that
helps people at high elevation. Should I
have started? Dave and I talked about it
many times but we both kind of felt like that would be cheating and not a true
test of ourselves.
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| Descending Lava Tower |
On the mountain you have a lot of time to think. I answered all the above questions about a
thousand times to myself in a thousand different ways but what it always came
down to was, the only way to find out is to get there. We arrived at the base of the Lava Tower
around noon and had lunch at the base and I felt great! No signs of altitude sickness at all! We enjoyed a fabulous lunch in which Julius
told us “you are very strong” which made my confidence grow more and more. After eating, Julius asked if we would like
to actually climb the Lava Tower.
Without hesitation Dave and I agreed.
Nothing sounded more fun than breaking up the monotony of the hike with
a little scrambling up rocks. We left
our trekking poles at the base and began our climb. There were some amazing little moves to the
climb. Nothing to difficult but with
enough challenge to get your heart racing.
I’m not sure how long we took to get to the top but by that time, clouds
had rolled in and our view became only a few feet. We enjoyed our time at the top of the Lava
Tower and after catching our breath, we headed down. Up always seems easier to me and this
instance was no different. Some of the
area we climbed were steep and coming down with a pack on made it quite
difficult. While climbing down a
particular steep and tricky section and had to make a gigantic step down. As I did so my right leg bent up underneath
me and instantly I knew it had gone too far and I felt a sharp pain in my
thigh. I pulled my quad. With it, my
heart sank. The pain wasn’t agonizing
and I knew it wasn’t a terrible pull but my mind flashed back to my decision
not to infuse that morning. Would it
bleed? Would my trip be over?
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| Approaching Barranco Camp |
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| Sunset in Barranco Camp |
I choose not to say anything at the time and hope that it
wouldn’t get worse. We finished the
climb down from Lava Tower and began our decent to Barranco Camp where we would
spend the night. The decent was
amazingly beautiful but I was unable to focus on it. With every step I could feel a slight
tightness in my thigh. I analyzed every
step, trying to figure out if it was getting worse. I tried to put it out my mind but I was
terrified not only that if it got worse I may not be able to proceed but what
happened if I wasn’t able to control it.
Medical facilities in East Africa are not good, as I witnessed earlier
on my trip, but there is also little to no knowledge of hemophilia. An hour or two into our decent, the tightness
in my thigh began to lessen and I thought I dodged a bullet. We approached Barranco Camp on a steep trail
with the most epic views. The town of
Moshi lay miles below us in the valley, sparsely covered with clouds. Exotic trees and shrubs lined the path. I truly felt I was in another world. The night spent in Barranco Camp was very
memorable. I spent most of my time staring
at the cliffs surround us and the glaciers clinging to the rocks above
them. The night at Barranco Camp was
quite peaceful and the events of the day faded to the back of my mind. Unfortunately those thoughts wouldn’t stay
there for long. I was in for a rude
awakening. Literally…
Part 3 to follow soon!
Thursday, December 22, 2011
Starting off 2011-2012 Ski Season
Winter has finally arrived and despite the lack of snow in the mountains, the 2011-2012 ski season has begun. I have been anxiously waiting to head up the hill and get some turns in again and my brothers trip back to Colorado gave me the perfect excuse to take a few days off of work and get some turns in. We had a snow filled drive to my Uncle Dave's house on Monday night but were shocked to find bare mountains on the west side of Loveland pass.
We arose early Tuesday morning and after a great breakfast at Arapahoe Cafe my brother rented some gear and it was time to hit the slopes. Riding the chair in the brisk morning air was a wonderful feeling that I have truly missed. Reaching the top and after a couple cautious and timid turns it all came back to me. Although the snow wasn't great, a bit icy, the joy of skiing was back!

This was also the first time I have skied in a few without infusing before heading out. I am currently on a new factor product that only allows an infusion once a week. I was a little nervous about this but a few turns swept those thoughts from my mind. It was a great first day back on the slopes!
We were exhausted after day one but a few snowflakes falling re-energized us for day two. We once again had breakfast at Arapahoe Cafe then hit the slopes. An overcast sky loomed overhead most of the day with small flurries of snow. It was an absolutely beautiful day. I was so glad to be back skiing. We had to head home Wednesday night and missed a pretty good storm but it was still a great few days.
For those of you waiting patiently for Part 2 of my Kili climb I will be posting tomorrow!
We arose early Tuesday morning and after a great breakfast at Arapahoe Cafe my brother rented some gear and it was time to hit the slopes. Riding the chair in the brisk morning air was a wonderful feeling that I have truly missed. Reaching the top and after a couple cautious and timid turns it all came back to me. Although the snow wasn't great, a bit icy, the joy of skiing was back!

This was also the first time I have skied in a few without infusing before heading out. I am currently on a new factor product that only allows an infusion once a week. I was a little nervous about this but a few turns swept those thoughts from my mind. It was a great first day back on the slopes!
We were exhausted after day one but a few snowflakes falling re-energized us for day two. We once again had breakfast at Arapahoe Cafe then hit the slopes. An overcast sky loomed overhead most of the day with small flurries of snow. It was an absolutely beautiful day. I was so glad to be back skiing. We had to head home Wednesday night and missed a pretty good storm but it was still a great few days.
For those of you waiting patiently for Part 2 of my Kili climb I will be posting tomorrow!
Wednesday, November 30, 2011
Tackling Kilimanjaro: Becoming the First American with Hemophilia to Summit (Part 1)
For those that don't know, I summited Kilimanjaro earlier this year, June 3,
2011 at 6:00 A.M. to be exact, and by stepping foot on the summit, became the
first American with hemophilia to do so. I was excited to get back to the
states and write about my adventure but for some reason haven't been able to
put words to paper/keyboard. I'm not sure if what I had done really sank
in or if I really even knew what it meant. After having months to reflect
and reminisce about Kilimanjaro and Africa I think I am ready to tell my story.
So here goes nothing...
My Uncle Dave and I had already spent two weeks in Africa with a group from
Indiana University helping inform and improve hemophilia care in Kenya and now
we are leaving the safety of the group and traveling to Kilimanjaro
together. Once aboard the plane the dream of climbing Kili became a
reality as a spectacular view of the peak began to fill my window. The
mountain I had read so much about and dreamed about was now real and thoughts
of standing on the summit in less than a week began filling my head. Excitement
and nerves were almost overwhelming.
We landed at the Kilimanjaro Airport and after making it through the confusing and chaotic customs area we were greeted by our climbing guide Julius. We drove through the African night towards the town of Arusha and our destination for the night, the Impala Hotel. We drove past many bustling street corners and shops but my mind was focused on one thing and one thing only, the monstrous peak hiding in the darkness.
The evening before the climb was spent packing and unpacking and packing again. Making sure everything was perfect and that everything we needed was ready to go.
The morning was quiet. My uncle and I sat in silence during breakfast, both of us contemplating the journey that lay before us. Returning to our hotel room, we went through our packs one last time. The only thing left to do was my infusion and we would be on our way. I wish I could say that infusion went perfectly and our trip started on a high note, but it didn't. Maybe it was my nervousness that made that infusion so difficult but I missed twice. After the second failed attempt my stress level skyrocketed. I wasn't sure I was going to be able to find a vein myself so I had to rely on my uncle, who had no medical training to infuse me. Luckily the brief instruction by the medical staff on the first leg of our trip paid off and he nailed the vein his first try. With that we were off to tackle the mountain and begin our arduous trek to the summit.
We boarded the bus outside our hotel and began the drive to Machame Gate where our climb would begin. Once aboard and outside town, the epic mountain came into view. The absolutely massive peak stretched across the horizon and the daunting task ahead became clear. The approach to the gate was breathtaking, the flat savannah gave way to hills of banana trees and coffee plantations. The forest lining both sides of the road grew denser and denser. Then suddenly the Machame Gate came into view and the climb began.
After signing in at the gate and once the porters and guides were organized,
we began. The porters quickly sprinted ahead while Julius and Cyprian
reminded us "pole pole" which is Swahili for
"slowly". Since my uncle and I have done some climbing and
backpacking before this trip, it was very unusual and nerve racking letting
others carry our gear. I think we both felt a bit silly watching the
porters carry huge loads while we carried only our small backpacks. This
was the hardest thing to get comfortable with.
The climb from Machame Gate to the Machame Hut was quite tame and
beautiful. Julius explained the terrain we were hiking in is known as a
cloud forest and it was extremely damp. Ferns loomed over and gigantic
trees lined either side of the path. I felt like I was walking through a
prehistoric jungle. Julius would stop at interesting plants and explain
what they were and why they were so special to Kili. The impatiens
kilimanjari was by far the most memorable. This small red and yellow
flower only grows on the slopes of Kilimanjaro. After several hours of
hiking the vegetation began to thin and shorten. You could tell we were
gaining some serious elevation. We emerged from the tangle of forest into
whats known as the moorlands and found Machame Hut, our first campsite.
By the time we reached the hut, our tent was set up and gear safely stashed
inside. Another odd situation for my uncle and I since we were used to setting
this all up ourselves. The end of the afternoon was spent sitting and
reading until a break in the clouds revealed our final goal, the summit of
Kilimanjaro. The breathtaking view of the peak sneaking out from behind
the clouds. The view away from the summit was equally as
breathtaking. At this point we were comforatble above the clouds that hid
the Tanzanian plains. It resembled a view from a plane soaring through
the sky but we were comfortable sitting on the side of the highest peak in
Africa. This view would be a mainstay of our trip and I would never grow
tired of it. As evening approached we ate dinner with our guide and then
retired to our tent. The first day of the climb was a resounding success.
Frigid night air was replaced by warming sunlight flooding our tent early on
day 2. Despite Kili's close proximity to the equator, temperatures become
quite cold in the evenings, something we would find out first hand on summit
day. Sunny skies lead to spectacular views and a pleasant hike on day
2. We traversed the mountain from
Machame Hut to Shira Camp. Every turn revealed spectacular views. Julius continued with his slow “pole pole”
pace and Dave and I finally succumbed to the fact he wasn’t going to let us go
any faster. After coming to this
realization I was able to enjoy my surroundings more and become less concerned
with the task at hand. We arrived at our
second camp (Shira Caves) early in the afternoon. This beautiful area is dotted with caves
which Dave and went to explore. Seeing
the swirling patterns in the rocks created by lava reminded us that we were in
fact, on a volcano. The night was calm
and little did I know that a poor decision I make in the morning would threaten
our success on the mountain.
(Part 2 Coming December 15th)
![]() |
| Kilimanjaro from the air |
We landed at the Kilimanjaro Airport and after making it through the confusing and chaotic customs area we were greeted by our climbing guide Julius. We drove through the African night towards the town of Arusha and our destination for the night, the Impala Hotel. We drove past many bustling street corners and shops but my mind was focused on one thing and one thing only, the monstrous peak hiding in the darkness.
The evening before the climb was spent packing and unpacking and packing again. Making sure everything was perfect and that everything we needed was ready to go.
The morning was quiet. My uncle and I sat in silence during breakfast, both of us contemplating the journey that lay before us. Returning to our hotel room, we went through our packs one last time. The only thing left to do was my infusion and we would be on our way. I wish I could say that infusion went perfectly and our trip started on a high note, but it didn't. Maybe it was my nervousness that made that infusion so difficult but I missed twice. After the second failed attempt my stress level skyrocketed. I wasn't sure I was going to be able to find a vein myself so I had to rely on my uncle, who had no medical training to infuse me. Luckily the brief instruction by the medical staff on the first leg of our trip paid off and he nailed the vein his first try. With that we were off to tackle the mountain and begin our arduous trek to the summit.
We boarded the bus outside our hotel and began the drive to Machame Gate where our climb would begin. Once aboard and outside town, the epic mountain came into view. The absolutely massive peak stretched across the horizon and the daunting task ahead became clear. The approach to the gate was breathtaking, the flat savannah gave way to hills of banana trees and coffee plantations. The forest lining both sides of the road grew denser and denser. Then suddenly the Machame Gate came into view and the climb began.
| Beginning the journey! |
![]() |
| Hiking through the cloud forest |
| Machame Hut |
| Resting on Day 2 with the summit in sight |
| Hike towards Shira Cave |
| Epic view of the African plains |
(Part 2 Coming December 15th)
Tuesday, October 4, 2011
Lots of Updates!
Hey all! So I haven't posted in awhile because I haven't done anything to exciting physically lately but it was suggested to me that I should post everything going on in my life as a hemophiliac and not just the stories about athletic experiences, so here it goes.
So many exciting things have happened in recent months, number one, joining the Save One Life board of directors! I was asked by Laurie Kelley to join the board as the only person living with hemophilia and because of my experiences in Africa and my desire to keeping working with hemophiliacs in developing countries. I am extremely excited for this opportunity to work with so many exciting and motivated people to hopefully help those in need!
With this opportunity came another opportunity to help Save One Life and my local hemophilia community. With the help of Martha Hopewell and Bob Graham, a new leadership program called "Lead Up" is being started that will put our leadership group here in Colorado in charge of raising funds to sponsor a person with hemophilia through Save One Life. The leadership group will have to come up with the fundraising idea and then execute their plan to achieve their goals. We are just getting started and haven't had our first meeting yet but we will soon! I created a blog to follow our adventure so please check it out and keep checking in to see our progress! http://leadupcolorado.blogspot.com/
Lastly, Save One Life is trying to reach a goal of 1000 sponsors by the end of the year and are only 161 away! Please check out the site www.saveonelife.net and look at all the hemophiliacs in need and help if you can. For those that know me and all the activites and adventures I have been able to have, think about those that haven't been as fortunate. Help them live a more normal and fulfilling life.
I will be posting a video about my trip to Africa and Kilimanjaro climb soon, hopefully so keep checking back!
So many exciting things have happened in recent months, number one, joining the Save One Life board of directors! I was asked by Laurie Kelley to join the board as the only person living with hemophilia and because of my experiences in Africa and my desire to keeping working with hemophiliacs in developing countries. I am extremely excited for this opportunity to work with so many exciting and motivated people to hopefully help those in need!
With this opportunity came another opportunity to help Save One Life and my local hemophilia community. With the help of Martha Hopewell and Bob Graham, a new leadership program called "Lead Up" is being started that will put our leadership group here in Colorado in charge of raising funds to sponsor a person with hemophilia through Save One Life. The leadership group will have to come up with the fundraising idea and then execute their plan to achieve their goals. We are just getting started and haven't had our first meeting yet but we will soon! I created a blog to follow our adventure so please check it out and keep checking in to see our progress! http://leadupcolorado.blogspot.com/
Lastly, Save One Life is trying to reach a goal of 1000 sponsors by the end of the year and are only 161 away! Please check out the site www.saveonelife.net and look at all the hemophiliacs in need and help if you can. For those that know me and all the activites and adventures I have been able to have, think about those that haven't been as fortunate. Help them live a more normal and fulfilling life.
I will be posting a video about my trip to Africa and Kilimanjaro climb soon, hopefully so keep checking back!
Friday, September 9, 2011
Backpacking/Mt. Massive
Last weekend was Labor Day weekend and also the weekend before my birthday
and what better way to celebrate a birthday then by hiking into the wilderness,
camping, then taking on the 2nd highest 14'er in Colorado! The entire
week before was filled with anticipation as we backed our packs and figured out
exactly where we were going. Mt. Massive actually was our third choice
behind Holy Cross and Snowmass but due to circumstances out of our control we
ended up at Massive. We loaded up the car early Saturday morning and began
our drive to Leadville where our hike would begin. Loading the 30lbs
packs onto our back we began walking. I have been backpacking before but
the views in the Mt. Massive wilderness are breathtaking! The trail
followed a stream almost the entire way and every turn lead to even more
beautiful views. The peaks of Mt. Massive and Mt. Elbert loomed over us,
almost like guards of the wilderness we were entering. I felt truly at
home here and sharing it with my girlfriend Jess and my good friends Brandon,
Erick and Ashley made it even better! We hiked for several hours back
into the bowl the mountains formed, searching for the half-moon lakes. We
reached the end of the trail, but no lakes. Brandon, Erick and I then
decided to explore the area to see if we could spot anything. We climbed
higher and higher until finally we could see a magnificent turquoise lake
tucked into the base of the mountains. That's where we would camp!A perfect area for a camp was located on the edge of the lake and a huge boulder sat on the opposite side that gave an expansive view of the entire valley. I could've sat on that boulder for hours and hours looking at the beauty laid out before me. We got camp set up and began cooking dinner which was a great learning opportunity. Guess how much Mac & Cheese five people can eat? I'll give you a hint, not a full gallon bag worth of it! I guess having too much food is a okay problem to have and not the other way around. After stuffing as much Mac & Cheese as possible, Jess gave me a amazing birthday surprise! She packed Swiss Cake rolls and candles with her and then stacked them up so I would have a birthday cake! It was awesome! We were all pretty exhausted so once the sun went down we all went to sleep, excited for our summit attempt on Mt. Massive that would begin tomorrow.
We survived the night at 12,000ft...barely. Temperatures plunged well
below freezing and besides almost freezing during the night I was very excited
in the morning. Watching the sun rise over mountain peaks, lighting up
the clearest lake I have ever seen is the best way to start off a day.
Breakfast consisted of a little oatmeal and hot water. Not much but
enough to get us energized. We packed up camp and head to the Mt. Massive
trailhead for our summit attempt. The air was crisp and chilly but hiking
through this beautiful country was amazing.
We dropped off our large backpacks at the trailhead for Mt. Massive, grabbed
what gear we did need and head up. The trail was quite steep and rocky!
Once we cleared treeline the views were incredible! We could finally see
the expansive valley below and even spot a few lakes we didn't see
before. We were also visited by several critters on the way up. One
quite large marmot seemed to lazy to move when Ashley and Jess approached so of
course they had to see how close they could get to it! We also heard some
talkative pikas along the way but the coolest animal was at the top! We saw
three mountain goats hanging out at the summit! We were all exhausted but
seeing these animals and the view from the top made it completely
worthwhile! The day was so perfect, we stayed on top for awhile and ate
our lunches and relaxed. What a great birthday!
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