Diagnosing patients in Kenya!

Yesterday was amazing and a bit disappointing all at the same time. The day started out great with Linda and I training several lab techs to run factor assays. It's a tough test but the techs were great an picked up on it fast! We even tested two patient samples and were able to tell Dr. Griest their levels! What made that even more amazing is that one of these patients, who had a head bleed, was finally able to have an accurate level done because they couldn't afford to send a level to South Africa where the only accurate testing could take place. The even more special part was that this young boy had the exact same factor level as me!

After several hours a training we grab lunch which doesn't sound that interesting but ordering tilapia in Africa brings you something a bit different then the states (see the pic below) but it was delicious!

That night was much different. The goal was to draw samples on around 90 patients and Linda and I were going to process everything then run samples on Tuesday. Unfortunately a bad batch of blood drawing tubes put an early end to that. Hopefully today will go much much better!

And today is world hemophilia day! Today there will be a parade that will be attended by the mayor of Eldoret! I will post pictures tomorrow!

First big day in the lab

So since my last post, so much has happened! Linda and I set up the lab for training, did a training lesson, meet a young man with a head bleed, went on a safari and even went to a Kenyan nightclub! It's been really busy but fun as well!

Today we will be training about four lab techs on how to test FVIII and FIX levels then tonight, 90 people from Nairobi will make their way to Eldoret and have their blood drawn and hopefully after a busy day Tuesday they will all know their factor levels and if they have hemophilia A or B!

When I get back I'll post more!

I Made It!!!!

I have arrived in Kenya!  After nearly two days of travel and little sleep, I have finally arrived in Eldoret, Kenya.  Although I just arrived this morning and am completely exhausted we have already begun working! Who needs sleep when you're so excited!  I have to say traveling all this way alone was a bit nerve racking but everything went incredibly smooth.  It also appears that the computers here are working well so I should be able to post often!  Keep checking back!

The Adventure Begins!

It's that time already! I'm at the airport getting ready to board my first flight of many on the voyage to Kenya. I am so excited to be heading back and seeing everyone in Kenya. This trip should be very different, hopefully we will be able to diagnose more people with hemophilia so they can receive some better care but most importantly I hope we can train several Kenyan lab workers to continue the efforts while we are gone.

This trip will also be my first as a board member of Save One Life. We have been given the go ahead to enroll new beneficiaries so hopefully this will make a huge difference in their lives.

There is something very unique about meeting people with hemophilia around the world. Despite living worlds away there is a connection. I don't know if it's because we all know the pain of bleeds or it's something else but it's always great meeting one of my "blood" brothers.

I'm not sure when I will be able to post again but please check back soon!

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!