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!
Wednesday, August 17, 2011
More about Africa!
Thursday, August 11, 2011
Rockin' it Out!
So it took until August but I finally got out rock climbing! One of my favorite places to climb is up near keystone called Haus Rock. Now, I would've liked to start out on an easier climb but my girlfriend Jess had other plans and thought the 5.10 face climb would be a good idea. Let me tell you now, it wasn't! She went first and technically made it...with the aid of some bolts. I on the other hand wanted to climb it legit. This didn't work out so well. I made it through part of the crux but man was it thin! There was literally nothing to grab onto so I understood why Jess used the bolts to help her. After struggling awhile and popping of the rock a few time I decided that I should just traverse over and finish on the 5.8. That worked much better! I felt really good on my first few climbs so I thought it was time to do my first lead of the year and only my second ever. For those of you that aren't climbers, lead climbing is a bit more dangerous. Most of our climbs are usually top-roped which means the rope is fixed
at the top of the climb and you can only fall the stretch of the rope. With a lead climb, I would be bringing the rope up with me and clipping into bolts along the way. Once I clip into a bolt, I climb above it until the next bolt. Once above a bolt if you fall, you fall the distance above your last bolt times TWO! Its a little nerve racking but fun. I started on the climb and about 15ft up was a significant bulge. After some maneuvering and thinking I was able to clear the bulge without any falls! I was so excited! The rest of the climb consisted of a large crack all the way to the bolts on top. I made it without any falls! I lead my first 5.8! The pictures to the right are of my lead climb and I cannot wait to do another one!
Tuesday, July 26, 2011
Hemophilia Camp
After infusions we loaded up the BOEC vans and head for our destination; Jacques Peak, a 13,000ft peak just outside of Leadville, CO. Nothing is quite as cool as seeing a big group of hemophiliacs hiking into the wilderness with huge packs on their back! The hike was an arduous one but the views were spectacular! We walked through fields of wild flowers and over streams and even saw a few elk roaming about. Camp was set up with the sun beginning to set and dinner was cooked. My good friend Sean and I decided not to sleep under or tents and hiked up the hill to find a good place to sleep. Laying out under the stars in the middle of the wilderness with all of hemophilia friends was epic!
We woke up early the next morning, about 3:30AM to get ready for our climb. It was my day to infuse and let me tell you, finding a vein with only light from a headlamp and
freezing temperatures is not fun! Even with the terrible conditions I let our camp director Amy Board give it a try. I thought it was a bit ridiculous that she spent all this time with hemophiliacs and never infused anyone! Turns out, maybe we should've tried another time cause my veins were not cooperating. I ended up having to infuse my hand but I can't blame Amy for the conditions, she did great. After infusions, we began the hike. Watching the sun come up while climbing was amazing! The hike was fairly easy with just a few rock parts near the summit and everyone did great! We reached the summit around 8:00AM and rested for awhile. I was so proud of everyone for making it and will never forget the experience!The picture included is of the 3 leadership counselors; Sean, Carlos, and myself and camp director Amy!
Thursday, June 23, 2011
Day 1 May 16, 2011 Eldoret, Kenya
Luckily for me, life in Eldoret would keep me occupied from the moment we landed and almost all thoughts of Kilimanjaro left my mind. As we collected our massive piles of baggage containing medical instruments and supplies from the airport, our entire crew piled into vans that would take us to the Indiana University house (aka. IU House). If anyone was tired at this point the drive from the airport should've cured that! I thought driving in the states could be scary but I was sadly mistaken. I'm pretty sure there are no traffic laws or no one follows them! Whoever is the most aggressive wins! In between the moments of shear terror on the roads I was able to look around and catch my first glimpses of real African life. Huts lined the road. Bikes road perilously along the side of the dangerous roads. Children seemed to wander without supervision. I can still clearly picture one boy sitting along the side of road, covered in dirt, no shoes, no adult insight. We're definitely not in the states anymore.
Once we pulled in the "the compound" where the IU house is, the chaos of the African streets subsided. Dave and I were shown to our room which was very nice, two twin beds with mosquito nets. After getting settled we met Dr. Chite Asirwa who is from Kenya and the man responsible for this collaboration. He is a very enthusiastic and determined person and instead of resting the first day he decided we should take a tour of the facilities which included the hospital, AMPATH, Moi University Teaching and Referral Hospital and the Blood Center. In all reality, I expected that the hospital would be much different to what we have in the states but the difference was absolutely shocking. As we entered the adult ward of the hospital, the smell was indescribable. I keep thinking of that smell, trying to figure out what it was, and the only possible description is of decay and filth. We turned the corner to enter where the patients actually stay, a hallway leading to open rooms on either side with 6 to 8 beds with a total of four sets of rooms. Unthinkable amounts of patients were strung about. Most beds contained at least two patients and countless others lay or sat on the floor in between. I wish I could describe the conditions, the smells. Overloaded senses prevented me from being able to focus on the specifics of the hospital but as I looked around I spotted a man lying, screaming in agony, a pile of mucous pooling beside his mouth, flies circling. This man was dying, quickly, and there was nothing that could be done. I felt so hopeless. I never could’ve imagined a place like this before, where humans, people just like me, suffered so much. All I wanted to do was help but there was nothing I could do. Our tour from that point forward was a blur. I could barely tell you what we saw, all I could see in my mind was the ward. Of those on the ward, 80% had HIV and 40% tuberculosis. I couldn’t bare to ask how many ever made it out of there. I’m sure it wasn’t many.
We returned to the IU house after our tour and had some time to reflect upon what we had seen that day. I have to say that experience will stick with me the rest of my life. To bring the situation even closer to home, Dr. Ann Griest, an adult hematologist from IU, had seen a 15 year old boy with hemophilia. He had been admitted to the hospital with abdominal pain several weeks before our arrival and the first thing done was an appendectomy. Unknown to anyone, including the patient, was the fact he had hemophilia. As one may suspect, abdominal surgery without factor is not a good thing. Dr. Griest found him in the surgical ward bleeding everywhere. He was lying on blood covered sheets, his bandages completely soaked through, barely hanging on to life. Dr. Griest took a gamble with some expired factor she had brought with her. She injected this young boy with FVIII, having no clear diagnosis for hemophilia A but knowing that some kind of action needed to be taken to save his life. The gamble worked. His bandages had been changed after Dr. Griest infused him and little bleeding continued. He was getting better. He by no means was out of the woods but he now had a chance. This really hit home for me. What if I wasn’t born where I was? I could easily have been the one lying there, dying. I felt guilty. I was planning on climbing Kilimanjaro for fun and this young boy with the same condition, that lives only hours from the mountain, is just struggling to survive.
My first day in Kenya was a huge wake up call. I had been so naïve to others struggles around the world especially those with hemophilia. The pictures below are of the patient with hemophilia I described above. I apologize for their graphic nature but I think it is important to show them and the importance of factor, especially in life or death situations. The first picture (left) is what he looked like when we arrived in Kenya. He was struggling to live and you can visible see the amount of blood loss. He didn’t have much time to live. The next picture is after his first infusion of factor (middle). The bandages were finally changed and it is easy to tell the improvement in bleeding. The final picture is out last day in Kenya (right) and he is almost fully recovered and ready to leave the hospital! Dr. Griest gave him several doses of factor over the two weeks we were there and this truly saved his life!
Tuesday, June 7, 2011
Success in Africa
Monday, April 11, 2011
The End of Ski Season
Wednesday, April 6, 2011
Exciting Update
http://www.saveonelife.net/mt-kilimanjaro-climb.php


