Well I made it back safely from Africa and jumped straight into Education Day for the Colorado Chapter of NHF! It was so great telling my story about Africa to everyone there! These trips have meant the world to me and I think it is very important that everyone is at least aware of the struggles of others in our community. I was so nervous but once I started it felt like I was just talking to a group of friends. If anyone is reading that attended, thanks for the support and kind words!
Now that I am back from that adventure, it's time to start the next! I'm off to Moab, Utah tonight for a week of mountain biking and backpacking! We are headed to a trail called The Maze. No one from our group has been there before but from what I read, it should be a blast! I probably won't have any cell service out there so posts about the ride will probably happen next week so check back then! I'll also post more about Africa as well! Wish me luck!
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, April 21, 2012
Wednesday, April 18, 2012
The end of an epic journey!
Today was my final day in Eldoret, Kenya and what an amazing trip it's been. I wish a blog could really express the emotion I have felt here and all the amazing stories that have happened the last few days and I will definitely try when I get home. Seeing how terrible hemophilia really can be makes me appreciate everything I have even more and makes me even more determined to make a difference in Kenya.
Before I sign off tonight I would like too tell one story that really hit home. A young boy came to Eldoret to be seen at our conference and clinic, he had a destroyed knee that wouldn't extend and to make it even worse he had a terrible glut bleed. He couldn't even stand up straight. This brought back memories of the terrible bleed I had in college that sent me to the hospital and had me on crutches for two weeks, this is where the similarities end. This poor boy thought he had FVIII deficiency and was treated several times with FVIII to no avail. We tested his levels in the lab and the diagnosis was completely wrong. He has severe FIX deficiency. Today he received his first dose of FIX. Hopefully now he will be able to improve.
This trip was filled with stories like this and I feel that this trip has really made a difference in some lives. I will share more stories soon!
Before I sign off tonight I would like too tell one story that really hit home. A young boy came to Eldoret to be seen at our conference and clinic, he had a destroyed knee that wouldn't extend and to make it even worse he had a terrible glut bleed. He couldn't even stand up straight. This brought back memories of the terrible bleed I had in college that sent me to the hospital and had me on crutches for two weeks, this is where the similarities end. This poor boy thought he had FVIII deficiency and was treated several times with FVIII to no avail. We tested his levels in the lab and the diagnosis was completely wrong. He has severe FIX deficiency. Today he received his first dose of FIX. Hopefully now he will be able to improve.
This trip was filled with stories like this and I feel that this trip has really made a difference in some lives. I will share more stories soon!
Monday, April 16, 2012
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!
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!
Sunday, April 15, 2012
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!
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!
Thursday, April 12, 2012
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!
Tuesday, April 10, 2012
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!
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!
Monday, April 2, 2012
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!
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!
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