Exciting Month of April

Since my last post, some amazing new developments have occurred. Remember that trip I took to Africa? Yeah, the one where I helped to set-up a new lab to test for hemophilia and climbed that fairly large mountain.  Well...I'M GOING BACK!!!!

I received one of the most exciting and unexpected phone calls Wednesday of last week from Linda Jacobson.  She informed me that the scheduled clinic in Eldoret, Kenya, where 30 patients with a suspected bleeding disorder were supposed to attend swelled to 130!  They needed my help and despite the short notice I am leaving April 10th!  Even though there won't be any mountain climbs happening, I think this trip will be amazingly special.  This will be one of the first times many of these patients find out what they have and are able to speak with physicians about what to do.  I am so hopefully that this trip will make a positive impact on some of my brothers in the hemophilia community that haven't been as fortunate as myself.

Not only do I get to travel to Africa again in April, I am also honored to be giving the keynote address at Hemophilia Education Day here in Colorado.  I start my voyage home from Africa April 19th, land back in Denver April 20th, then give the address on April 21st.  I may be a bit jet-lagged but I am very excited to tell everyone about last years trip to Kenya and Mt. Kilimanjaro and now about this years trip!  If anyone is going to be in Denver on the 21st, feel free to come by and learn more about my trip and hemophilia in general!  Check out the the link below for more info.

http://cohemo.org/programs-and-events/education-day/
And if April weren't busy enough I am also going to Moab, Utah!  After the keynote and education day, I will head out for a week long bike trip!  My Uncle Dave and his friends have organized a fantastic trip called The Maze.  I don't know much about the trip but it goes deep into the Canyonlands and even includes and day backpacking trip.

I'm so excited for the month of April and hope I don't get too exhausted.  Keep an eye on the blog as I will try and write updates throughout this crazy crazy month! 

Thank You Factor!!!!!

As you can probably tell from the title, I had another amazing and exciting weekend that could have ended much worse if it wasn't for my factor.  This weekend was absolutely beautiful and what better way to enjoy the weather than mountain biking in the Colorado foothills!  After a bit of a late start, my girlfriend Jess, good friend Erick and myself arrived at the 3 Sisters trail head just outside Evergreen.  I was a little nervous, not about crashing and possibly getting hurt but about being to out of shape to make it.  The trail is perfect because you have to do all of the uphill first.  I prefer this format because you get all the exercise out of the way and then are rewarded with the fun of flying down the trail.  The uphill was killer!  After about ten minutes of pedaling, I felt like I hit a gigantic brick wall.  I could barely breath. This was exactly what I was scared of but I continued to push on.  I knew that if I could get past this wall everything would be okay.  Finally after what seemed like hours of agony, I felt the wall crumble.  I was in the zone!  The rest of the uphill was much more enjoyable and despite getting stuck at a few tricky spots, I made it to the top pedaling!  We took a few minutes at the summit to enjoy the view, eat a few snacks and take the customary victory pictures.  Then the real fun began.

I believe that downhill is the best part of mountain biking. Now hang on one minute...its not because I'm lazy and don't like working out, I love the burn you feel after a good uphill ride, I just love the rush of flying down the hill on the edge of control a bit more.  This trail was perfect for that too!  With only a few technical spots where slower was better, we ripped down the mountain!  After awhile I felt a little pain in my right knee.  Something on my bike kept hitting me but instead of stopping this amazing natural roller coaster I continued on.  Several parts of the trail still had snow and muddy runoff which ended up covering our bikes and ourselves in mud.  It was great!  At the bottom of the trail I was even getting confident enough to catch some air!  We were absolutlely flying.  Before we were ready, we reached the end of the trail.  The roller coaster ended and I felt great with only a little pain in my right knee.

The next day I noticed the glorious bruise on my knee that I realized I probably dodged a bullet. Prophylactically treating probably kept this bruise from becoming a huge bleed!  Sometimes I forget how lucky I am to have factor, but days like this help remind me.




I would love to hear any stories you all have similar to this.  I know most of you either personally or from someone you know hav been saved from a certain bleed by factor, so lets hear about it!

Hemophilia Caregivers!

Today's drive to work was an interesting experience for me, a local radio station is doing a fundraiser for The Children's Hospital here in Denver and had a story of a little girl with ITP.  ITP is a different disorder then hemophilia but with many of the same symptoms, easy bruising and bleeding, and her story reminded me of my childhood.  Her father described a near death experience that occurred away from home, but it was her doctors in Colorado that helped manage her from states away.  I haven't had any near death experiences, but even ordinary emergency room visits outside of Colorado were overseen by my doctors and nurses here.  No matter the time or the reason for my visit, they were there.  I kept thinking back to a family trip to Hawaii where I came down with a severe fever and nausea.  Although it probably wasn't a bleeding issue, my hematologist in Colorado was all over it.  I also had several emergency room visits in college do to baseball injuries and bleeding, the first people involved were my team in Colorado.  The relationship between a person with hemophilia and there caregivers is definitely a unique one.  They feel more like a family then doctors and nurses.  They even came to my high school and college graduation parties!  I would love to hear everyone's stories about their experiences too!  I know I wouldn't be the person I am today without them, and if any of them our reading this, Thank you! 

Tackling Kilimanjaro: Becoming the First American with Hemophilia to Summit Mt. Kilimanjaro (Part3)

Part 3

The morning of Day 4 began with an aching thigh and the dreaded realization that I had a bleed…at over 12,000ft. I could no longer be in denial about what was happening.  Every small step equaled aching pain.  I needed to infuse.  I began mixing my factor in the tent with the same thought running through my mind “I couldn’t find a vein the first day…in the hotel!”  This would be one of the most important infusions of my trip, and probably my life thus far.  Missing over and over wasn’t an option.  I needed to get it quick.  Luckily, my Uncle Dave was amazingly supportive.  He could tell I was nervous but kept encouraging me.  “You’ll get it no problem!” he kept saying.

The time came; I tightened the tourniquet around my wrist, found my trusted and best vein and went for it.  My hand was trembling.  With every passing moment the needle and vein seemed to get smaller and smaller.  I can’t get that tiny thing I kept thinking.  I think every person with hemophilia has had a moment in their life when infusing seems like the most difficult task.  This was my moment.  If I didn’t get this, my trip would be done and decent would be no easy feat.  Real damage could be done if my thigh keeps bleeding and getting safely off the mountain becomes harder and harder.  I needed to go for it.  Finally I gained the confidence needed and went for it.  The needle entered the skin with usual pinch and brief feeling of discomfort.  I advanced it towards the vein and with the pop that all people with hemophilia know and love I was in the vein!  Quickly blood flashed in the tubing. I nailed it!  We were back in business!  I took an ACE wrap and secured it over my injured thigh.  We ate breakfast then began our attack on the Barranco Wall, perhaps the steepest and most challenging part of our climb.  Looking ahead we could see people scaling the face of the wall, looking like a trail of ants in the distance.  I was worried about the strength of my leg on this steep incline.  Several moves on the wall were a bit tricky with gigantic steps and the need to use your hands to pull you up.  It was the best day on Kilimanjaro by far.

Top of Barranco Wall

We made great time up the wall and since we had chosen the seven day climb up the Machame Route our day would be short and I would get to rest my leg.  After reaching the top of Barranco Wall and taking a short rest we continued on with what I thought would be the easy part of the day.  The altitude we gained climbing the wall was quickly lost with another day of climbing high and sleeping low for the acclimation process.  We descended again on our way to Karangu Hut.  This descent was steep and every large downward step felt like I was re-pulling my muscles in my thigh.   The first 20 minutes of the descent were extremely uncomfortable but then the pain seemed to fade into a dull annoyance.  We passed a group of young people from Canada and chatted with them awhile.  They had been struggling a bit and already began using Diomox, medicine used to help altitude sickness.  They were still in high spirits and were quite impressed that we hadn’t taken any and were feeling fine.  They rested a bit more and we continued on.

Hiking to Karnagu Hut

The final approach to Karangu Hut was another steep face.  After climbing the Barranco Wall earlier today, we descended several thousand feet overall and the final approach to our destination of the day took us through a steep valley with the camp residing on the top of the other side. My thigh by this point was exhausted and battered.  I needed to rest it.  We reached Karangu Hut shortly after noon.  I saw one of our porters weighing his pack and asked how he felt, he said “Feeling strong, you want to weigh yours?”  I refused knowing how embarrassed I would be that he just finished the hike with a 20kg pack on and I strolled up with a pack at half the weight. 

We spent the rest of the day at Karangu Hut.  When I had booked our trip we had that option of six or seven days on the mountain.  Not knowing how my body would react to the altitude I opted for seven.  Karangu Hut is where we would gain that extra day and after sitting for hours in the tent, I really regretted the decision.  My uncle and I felt strong and despite a bleed in the thigh I wanted to continue on.  We both finished the small books we brought for the second time.  I was officially bored but the rest for my thigh was much needed.  I sat with it elevated much of the day and could feel the swelling subside a bit.  Night couldn’t have come quick enough.  Tomorrow, we would be within reach of the summit and one of the most grueling days of my life.

Hiking to Barafu Camp

Approaching Barafu Camp

We arose the next morning to another spectacular view and another short hike.  Today’s route took us up another several thousand feet to Barafu Camp.  This is where the assault on the summit would commence in less than 24 hours.  The climb to our final camp before the summit was strange.  Our surroundings were almost completely devoid of life.  Only a tiny plant or circling bird could be seen.  I was truly in uncharted territory.  It felt more like I was on Mars then anywhere on Earth.  We stopped several times for “snacks” except Dave and I weren’t hungry.  I think Julius was trying to give our porters a head start since our climb today would only last a few hours.  The final approach to the camp was a magical experience.  As we came closer and closer to the steep cliff in the distance I saw movement on the top.  Porters and tents scoured the razor-backed ridge.  In my mind, I pictured us as ancient explorers approaching a primitive fortress.

We reached Barafu Camp around noon that day to a chaotic mess.  Expeditions that had climbers on their summit attempt were packing up, our expeditions and many others just arrived and clambered for the best spots.  Dave and I thought it best to stay out of the way and wandered over to the edge of the cliff our tents would soon be perched on.  Dave sat with the cool calm of an experienced climber ready to head for the summit while I paced anxiously back and forth.  Months and months of planning had finally come down to this moment and in the next 12 hours I would be heading up to the highest point on this continent!

Infusing at 15,000ft

Julius informed us that dinner would conclude at 18:00 promptly and we were to head to our tent to try and get as much sleep as possible.  He would be waking us around midnight for the summit push and we needed our energy.  Sitting in the tent mere hours before commencing the final leg of our journey, I had one more thing to do to prepare. Infuse.  I knew my thigh was feeling better at the moment, though there was still some swelling, but 5,000 vertical feet up followed by 10,000 down could easily change that.  I couldn’t risk it.  So sitting in a tent, higher than I had ever been before, I prepared to infuse for the second time on Kilimanjaro.  My nerves were racing once again.  The slight orange glow of our tent lit by the setting sun spread a calming feeling over my body.  I mixed my factor, drew it into the syringe, and attached the butterfly needle.  Here we go again.  Six alcohol pads finally cleaned a small circle on my hand.  A dirt ring surrounded my vein.  No hesitation this time, I calmly inserted the needle into my hand and got immediate blood flow!  Another success.  Hopefully this would help my thigh withstand the rigors of the climb.  A bleed on the summit of Kilimanjaro could be devastating…even deadly.  All there was left to do was get some rest, but there was no sleep to be had…at least on my part.  My uncle was asleep within five minutes after the infusion.  I had six hours to think about the journey that lay ahead, the journey that was literally taking us into the darkness and the unknown.

Six hours of laying in the dark seemed like an eternity.  Millions of thoughts went racing through my mind but mainly, would I become the first American with hemophilia to do this?  Growing up in the U.S. and with the people in my life, I don’t think I ever really understood how terrible this disorder could be; then I visited Africa and witnessed the devastation first-hand.  This journey and adventure morphed from being a fun trip into being something with a purpose. I felt like I was living my life and having all of these experiences for all those that couldn’t.   I had to make it. 

Stirrings outside our tent indicated that our guides we gearing up.  It was time!  I began getting dressed and prepared even before the guides got to our tent.  I was ready!  Crawling from the tent was a surreal experience, as my eyes adjusted to the darkness I gazed upward to the most beautiful sight.  Millions of stars were strewn across the sky.  More stars then I ever thought possible speckled the sky and thousands of feet below me the city lights of Tanzania dotted the landscape with nothing but darkness in between.  It felt as though we were floating between two different worlds.

We had a quick bite to eat with Julius and Cyprian, our assistant guide, and began the ascent.  It’s a strange feeling to walk away from your camp, into the dark black night with little idea of what lies ahead.  My first few steps were shaky, mostly from nerves, but after a minute or two I was in the rhythm that would help us reach the summit.  My uncle and I have the same mindset when it comes to climbing, set an all-day pace, meaning  we hike at a pace that keeps us comfortable and able to continuously hike without stopping most of the day.  On summit day we really took this to heart.  On past days the guides would make us take breaks but on summit day I knew that if I was able to keep my pace, I would have the best chance of success.  Every few minutes Julius would ask, “Time for a break?”  We would politely refuse and continue on.   We passed several other expeditions heading for the summit and with each step I felt stronger and stronger.  Despite my excitement for the summit and this journey, hiking in the middle of the night is kind of boring.  When left for that long just to your thoughts boredom can become a formidable adversary.  I remember playing games in my head, seeing if I could exactly mimic the steps of Julius or trying to focus my light on his heels.  I may or may not have run into him on a few occasions…so I had to come up with something else.  I sang every song I could think of, from AC/DC to Taylor Swift to keep my mind occupied.  That worked well for most of the climb.

After what seemed like 12 hours of hiking, Julius called out “Half way!”  I couldn’t believe it.  I thought the summit had to be right around the corner!  We took our first break even though Dave and I wanted to continue.  It was the first time since we began our climb that I took in my surroundings.  It was stunning!  Stars lit up the sky from horizon to horizon.  I truly felt like I could touch the stars.  I also caught my first glimpse of the Southern Cross constellation!  It was amazing.  I could’ve sat there for hours.  Julius brought me back to reality quickly, “Time to go.”  We threw our packs back on and continued.  This was the first time the frigid air had an effect on me.  I was wearing thin gloves to prevent from getting to hot, but the short break brought an icy feeling to my fingertips. Our break and subsequent lack of movement brought me back to the reality of freezing temperatures.  I thought for sure once we began moving again the warmth would return but after about 30 minutes, I realized I was wrong and needed to do something.  The needle feeling became painful.  Our second stop had to be made, but was brief and with a quick change of gloves the warmth slowly returned to my hands, nothing was going to stop me now.

Stella Point!

I looked back down the slope we just climbed to see if we could measure our progress but all that could be seen in the pitch black were the headlamps of the expeditions we had passed earlier.  They were tiny specks.  We were doing well, so well in fact that Julius notified us that we need to slow our pace and take more breaks or we would arrive at the summit well before sunrise, something we DID NOT want to do.

Summit!!

The Entire Crew at the Summit

We were the first group on our trail to reach Stella Point in the darkkness.  The steepest and most difficult part of our ascent towards the summit was over.  From here on out, a gradual rise under the upper caldera of Kibo would be the only obstacle in the way of the summit.  The end was near.  The final approach to Uhru Peak, the highest point on Kilimanjaro was intense and emotional.  I have participated in many fun and daring physical endeavors in my past but nothing like this.  Not only was I emotional because of my exhaustion but because of the journey and eye opening experiences I had in Africa.  As the sign indicating the summit appeared from the darkness, the fold of emotions overtook me.  I had made it to the summit.  As I approached the sign to become the first American hemophiliac to summit the only thought that crossed my mind was that of the poor kids with hemophilia we met earlier in our trip that would never have the chance to do something like this.  The had a hard enough time just surviving.  I placed my hand on the wooden sign and closed my eyes.  I still have trouble describing the emotions I felt that day.  It was an amazing mix of joy, exhaustion, sadness and exhilaration.  I have never felt more alive.  My uncle and the guides were very kind a gave me a few moments to process the moment then we celebrated together and took the routine pictures on the summit.   We had made it well before sunrise which was unfortunate, but it didn’t take away from the feelings at all.

Descending from the Summit

I wanted to stay at the summit until sunrise but our guides thought it best not to dwell in the freezing cold.  I hadn’t even noticed it.  I went to take a drink from my water bottle before we began the decent only to find it frozen solid.  It was time to go.  The decent back to our high camp was filled with reflections of a life changing trip.  I never again would think about my disorder the same way.  I am lucky and there is no way around that.  I even was able to call home near the summit, with a cheap cell phone we picked up in Africa.  A brief conversation with my girlfriend Jessica was much needed.  I’m sure she was glad to hear I was safe, and I was glad to hear a familiar voice.  I couldn’t wait to tell her about my experiences and everything that happened but we still need to descended 10,000 feet after our summit attempt, which was the most difficult part of the climb by far.  My knees were shot and after 6 hours of hiking up and almost 12 coming down, I was ready to be done.  Our last night camping on Kilimanjaro was quiet and peaceful.

We descended the final few thousand feet early the next morning through a drizzling rain, had a quick and fun lunch with our guides and set back out into civilization.  We were able to shower at a hotel repack our belongings, and then head to the airport for our nearly two day journey home.

Africa has and will always be a defining moment in my life, not because of my success on Kilimanjaro and not because of the work we put in with the lab in Eldoret, but because of what I learned about myself.  I will never again complain about a bleed or an issue with my hemophilia, I have it easy.  I also have decided I need to do something to help.  I don’t have the means to help every kid with hemophilia suffering alone but I am part of a charity that can help.  Thanks to a wonderful and amazing person I met named Laurie Kelley, I have joined the board of directors for Save One Life.  With this opportunity I hope to make a difference with those in need.  Who knows, maybe I can even climb some more mountains for a fundraiser to help some of them…

Beautiful day at Keystone, not a beautiful day skiing

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!

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!

Tackling Kilimanjaro: Becoming the First American with Hemophilia to Summit (Part 2)

Part 2

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. 

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.

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?

Approaching Barranco Camp

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!