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.

Monday, March 21, 2011

Kilimanjaro Update!

So it is now official! I will be climbing Mt. Kilimanjaro, Africa's tallest peak! Our climb dates are set for May 29th - June 4th! I am so excited to experience this epic journey and hope everything goes well! We will be climbing the Machame route which is also known as the "Whiskey route". Its the second most popular route and should be an incredible journey. The picture on the left is one of the upper campsites on this route. I am also excited that my uncle Dave will also be coming with me. He is very experienced mountaineer and makes me feel even more confident about this trip. I am still training for my trip and now that it is almost completely set in stone I am starting to realize that I really need to step it up. I will keep you all updated on this and other events coming up such as my mountain biking trip to Moab!

Monday, March 14, 2011

Revisting Self-Infusion

So, the last week has been a very interesting one with many up's and downs. As you probably so from my last post I had some difficulties infusing myself. I'm not sure exactly what happened but I lost most of my confidence in infusing myself. Instead of struggling, the next time I infused I decided to visit with the nurses at the Hemophilia Treatment Center. Going back to basics was exactly what I needed! It's not that I forgot how to infuse, but breaking everything down again really helps relieve the pressure. I was getting so anxious about missing my vein or blowing the vein that all that I could do. With the help of the great nurses at the Hemophilia Center here in Denver I was able to relax, focus, and succeed. Training for Kilimanjaro is back on track and I am really looking forward to this adventure without the fear of not being able to infuse on the mountain! Wish me luck and I will keep you posted about the journey ahead!

Tuesday, March 8, 2011

Difficult Day One

So day one of training didn't go so hot. I decided to infuse before I worked out yesterday and lets just say I didn't go so smooth. I tried to use my trusty hand vein and it instantly blew. I was discouraged and decided to let my girlfriend give it all try. No luck. I decided to try again....and again...and again. After blowing four hand veins and my girlfriend trying three times I decided on some professional help. My mom is a fabulous nurse and I went to her house where she nailed it on the first try! After eight pokes I was finally able to workout! Lets hope this goes smoother in the future.

Has anyone had similar experiences? This may have been one of the most frustrating and difficult experiences infusing that I have ever had. I would love to hear some helpful hints so this won't happen again!

Monday, March 7, 2011

Training for Kilimanjaro

Well today is the day I begin my training for Kilimanjaro! I've never trained for something like this before so I'm not 100% sure what to do or what to expect but I've decided that P90x should be a good start! With the physical training also comes a unique kind of training, INFUSION TRAINING! Since I don't generally prophylactically treat my hemophilia I have become kind of rusty when it comes to self infusion so with my new workout routine I will also begin infusing 3 times a week! Anyone have any good ideas about becoming a pro at infusing? I really want to get to the point that I don't even have to think about it anymore and can nail it everytime so any advice would be great! Below is a link to get more info on Kili and I will be posting more information about my climb soon!

Wednesday, March 2, 2011


Hi everyone! I've started this blog to share my stories about living with hemophilia and my continuing experiences with this disorder. I was diagnosed with severe hemophilia B at birth and although I have had some difficulties with this disorder I have been privileged and lucky to live a fairly normal life. I'm going to try and post stories about growing up with hemophilia as well as new stories of what I'm currently doing. I would also love to hear your stories as well! I'm hoping this blog can be used as a tool for those of you growing up and living with this disorder, as well as family and friends! I look forward to hearing from everyone!