Tuesday, July 26, 2011

Hemophilia Camp

This past week was Hemophilia Camp and unfortunately I wasn't able to help out for the entire week since I used most of my vacation time on my Africa trip. This dang job thing keeps getting in the way of all my fun lol. Even though I didn't get to go for the entire week I was able to make it for two of my favorite things; infusion training and the leadership peak climb! I woke up early Wednesday morning, packed up the last few things I needed for backpacking, and headed out the door for camp. I got there just in time for infusions and got to help teach some of the younger kids how to infuse. I once again volunteered my arm for practice even though I didn't need my infusion that day. Having an 8 year old go for your arm with a needle is a bit nerve racking but the look on their face when they nail it is awesome! So glad I made it for that.

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

After days of travel and watching every movie on the plane we finally reached Kenya. Our last flight was a small jump from Nairobi to Eldoret, our final destination. Exhaustion should've been setting in at this point but sure excitement flowed through my body. Staring out of the window of our plane, the expanse of Africa lay out before us. Beautiful lush forests passed below us with small volcanic mountain protruding every so often. Small until Mt. Kenya, the second tallest peak in Africa, revealed itself outside the windows along the right side of our plane. This massive 18,000ft peak towered above everything and served as a glimpse of what was to come, our climb of the taller Mt. Kilimanjaro. My uncle Dave and I sat in awe. The mountains in Colorado are significantly shorter then Mt. Kenya and Kilimanjaro anyway, but the fact that these mountains start at a much lower elevation make them even more daunting. I would have to say that even though our climb was still weeks away, a slight tinge of anxiety began to build about our upcoming climb.

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

Long time no blog. Well my plan to blog about my Africa trip was thwarted by a lack of consistent internet connection in Eldoret so I will be updating my blog post trip. I did journal alot about my experiences so I will just post once a day from my journal to update everyone. The one spoiler I will divulge is that I made it to the top of Africa!!! At 6:00 A.M. on June 3, 2011 I successfully made it to Uhuru peak (19,340ft) and the top of Kilimanjaro becoming the first hemophiliac from the United States to accomplish this. It was an incredible feeling and can't wait to share it with you all as well as all the rest of my great experiences in Kenya and Tanzania!!!

Monday, April 11, 2011

The End of Ski Season

So this ski season was slightly disappointing in the fact that I only got up 11 days compared to my 26 last year but I shouldn't be complaining. Of those 11 days over half were epic powder days! I had a great ski trip with friends from college and got to spend some great time with my uncle Dave! For only getting up a few times this year I would have to call the season a huge success. I learned to ski moguls better then ever before and am pretty sure I can ski down almost anything. It my not be pretty but I can get down it. This season was also a huge success as far as bleeds go. I prophylaxed before most ski days and only had a few minor bleeds! Considering the fact that I skied more difficult terrain this year I would have to say that not getting many bleeds is definitely a huge positive! I will be uploading a video of one of our great runs this year at Breckenridge! Its from the run Ore Bucket and there has to be close to a foot of powder! Sorry for the long video, I don't know how to edit yet and thanks to Kyle Fritz for the great fall footage! Next up, mountain biking in Moab April 15th and 16th, hopefully some sweet rock climbing and hiking, then Mt. Kilimanjaro!

Wednesday, April 6, 2011

Exciting Update

Hello everyone! I haven't posted in awhile but I have some very exciting news! With the help of Laurie Kelley I have been asked to participate in a fundraiser for climbing Mt. Kilimanjaro that will benefit those suffering from hemophilia in Africa! The organization putting everything together is called Save One Life and is a fantastic organization that strives to help those with hemophilia that are in need. There are 10 other climbers going in August that are also trying to raise funds including another hemophiliac! Although I won't be climbing with the group we all have the same goal in mind and that is to improve the lives of hemophiliacs. Please visit the website listed below to find out more and hopefully donate a little to our cause. Also, check out the rest of the website since there are so many other ways to help! Thanks for all the support and please feel free to ask me if you have any questions about this!

http://www.saveonelife.net/mt-kilimanjaro-climb.php

Friday, March 25, 2011

Shots for Shots

On Wednesday I had the pleasure of getting all of my shots for my trip for Africa. Turns out I also had to get a shot before my shots as many hemophiliacs could relate to. Infusing isn't a huge deal to me anymore (not saying I like it) but not many people even give a second thought to shots besides maybe not enjoying getting them. I would have to ask my parents to confirm but one of my first bleeds came from immunizations and I have gotten many since. Fortunately, I infused before going getting my yellow fever vaccine and polio booster so no bleed! Does anyone else have stories about having to infuse for vaccinations? Hopefully my mom can add to this also since I can't remember that first bleed very well.

Thursday, March 24, 2011

Project Share

Some of you know that I used to work in a research lab where we did a great deal of work with hemophilia. While working there, our lab acquired some expired factor for experiments but we always had an excess of factor that just sat in our fridge. Recently, I went to a great conference in Arizona about hemophilia camps and heard a presentation from Laurie Kelley, a fantastic person that has dedicated her life to helping those with hemophilia in underdeveloped countries. She began talking about the amount of factor we consume and use in this country and the struggles of those unable to get access to adequate care. Hemophilia is still a deadly disorder in those countries and she does whatever she can to send expired factor to these people so they can get some kind of care. After hearing this my thoughts went directly to all of the extra factor we had sitting in our research fridge, wasting away. I knew this could help someone in the world not as fortunate as myself so yesterday, I packaged everything up and shipped it off to Laurie. This factor will no longer sit being wasted and will help someone. Every time I think about this fact I realize how luck I am to live in this country and have access to care. I will never take this fore granted again and even I my toughest days I will always remember someone has it worse. I encourage everyone to visit Laurie site listed below and learn how you can help. We don't all have factor lying around but that is not the only way to give.

http://www.kelleycom.com/projectshare/index.html