At the beginning of the year I applied for a Bayer healthcare internship which lasts eight weeks during the summer. In May I was notified that I had been accepted as an intern in the global office at Bayer healthcare facilities.  To start out my trip I left on June 19 and arrived in New Jersey later that day. When I arrived at the airport I was feeling a slight pain in my hip.  I decided to quickly find the spot where I needed to rent my car so I could get to the hotel and infuse myself. As I was driving home I noticed a knot on my hip from were the seat belt was lying on it. By the time I got to the hotel it was hurting pretty bad so I checked into my room and examined the swollen area.  It was just a little knot so I did not think that it would get any worse. After I infused I laid in the hotel room with ice on the knot.  That evening I took a shower and realized that it had spread.  I was getting a little worried about it so I called the HTC in New Jersey. They told me just to factor, ice it, and prop it up.  I took pictures so if I had to go to the doctor I could show him what it looked like before I treated it.  I then decided to e-mail it to my mom, to let her know what was going on.  The next day it really didn't get any better so I decided to go to the ER to make sure that it was not deep in the muscle because it is in an area that could affect several things.  After about seven hours in the ER I finally got what I needed.  I got a CAT scan to determine if it was deep in the muscle or not.  The CAT scan was read and it was determined that it was not deep in the muscle and it was just soft tissue.  So that was to start of my internship, very eventful already.  At least I now know where the ER in the HTC is. The only problem I had in the ER was that the doctor seemed like he knew more about my body then I did. This made me upset because he kept saying, "Your fine, don't worry about it."  I never go to the ER for bleeds unless it's severe. If I felt I needed to be seen then I needed to be seen, end of story! I am the patient. 

 

There’re so many times that I think that doctors need to just step back and listen to their patients.  No two hemophiliacs are the same.  We all bleed differently and we all respond to treatment differently.  Often times it seems that doctors go by the book definition of hemophilia.  Some doctors seem to believe if the book definition of hemophilia is one thing, then they cannot stray from that definition.  Take my cousin and I for example, we both have severe hemophilia A, but we bleed differently.  We also respond to treatment differently.  Just because we are in the same family, and just because we both have severe hemophilia A, does not mean that hemophilia treats us the same.  We know our bodies better than anyone else.  We all know the signs of a bleed, we all know when to infuse for bleed, and we know when we don't infuse that there will be consequences for not infusing.

So next time you’re at the doctor and it seems to you that your doctor is not listening to you, stand up for yourself!  You are your own self you are your own definition of hemophilia and you are the one in charge.

 Don't let hemophilia stand in your way.  If you want something go for it.  I was afraid that this bleed was going to get out of control and I was not going to be able to finish my internship.  I set my mind towards one goal…getting better.

I was walking to answer the door one afternoon and I stubbed my toe on our door. I did not think anything of it because I was wearing socks and it did not hurt, so I thought to myself it can’t be that bad.  It happened to be a factor shipment! I put my shipment on the table and sat back on the couch to finish watching my favorite show Home Improvement with Tim Allen. When the show was over I went to put away my factor and then I noticed that my sock was soaked in blood. I hobbled to the bathroom to get it cleaned up. When I took my sock off I noticed that the skin on the top of my big toe was skinned off.  My toe was dripping blood.  The drops were about the size of a pea, dripping about two drops a second. It was actually pretty cool looking but despite how cool it looked I knew I needed to get the bleeding stopped.  I cleaned it, put peroxide on it, and put antibacterial cream on it. I topped it all off with a non-stick 4X4 doubled several times to create a pressure bandage. I then laid back on the couch and iced my toe. After about two hours of laying on the couch I checked my toe. It clotted and stopped bleeding.  (The reason why I did not factor when this happened is because this happened on a prophylaxis day) I thought to myself “Hey it has stopped bleeding, I will go hang out with some friends now.” Well I left the house about 4 pm and did not get back home till about 10 pm. When I got home that evening I took my shoes off. When I took my left shoe off my whole entire sock was bloody. Aww man, it was bleeding again. I cleaned up my toe once again and applied a pressure bandage and this time I factored. When I layed down in my bed I propped it up on a pillow and I put ice on it. I woke up about 3 AM and I had blood everywhere at the bottom of my bed! It was so bad it looked like I was skinning rabbits on my bed. I am very thankful to my mom because she got up and tended to my toe. She cleaned it up and bandaged it then she put my cryo cuff on so it would cool down my foot and hopefully stop the bleeding. I woke that morning and changed my bandage again and factored because it was still bleeding bad.  I spent that whole day in bed with no luck. It was still bleeding like a “stuck pig”. We put some stop stick on the cut to help the bleeding. Guess what, it finally stopped bleeding! The rest of the evening and the following day I factored every 12 hours and stayed off my feet. It finally stopped bleeding and I was so happy.

 

I am sure many of you are wondering how I got the blood stains out of my sheets. Well when I woke up at night I did not even bother cleaning up my sheets because I figured that it was going to bleed a lot anyway and get my sheets bloody again. I was wrong! I woke up in the morning and my sheets were clean. Spotless no blood at all. Guess who was at the foot of my bed cleaning up my sheets. My dog, every morning when my brother and sister get ready for school they let Daisy out the roam around. She usually sleeps with me the rest of the morning. Well that morning she helped me out by washing my sheets. 

Six more weeks of winter and my goal was not to get injured. It was a typical Sunday. I got up, showered got dressed and went to church. After church, I went home and got changed and went with some friends to go watch the super bowl.  While at my buddies house we were outside helping with the farm chores. After the chores we had a snow ball fight and we were just messing around in the snow. That whole time I did not fall once! I was thinking to myself this is going to be a good day. We were getting pretty cold so we went inside to get warmed up and get some dinner. After the game I was leaving to go home and I slipped on the ice and caught my self with my right hand. I fell hard! It felt like a broke my wrist. While driving home I could not even rest my hand on the steering wheel because anything that touched it hurt like heck. By the time I got home (which was a five minute drive) it was pretty swollen and very very painful. For those of you who use the one  to ten pain number scale with ten being the worst pain you ever felt in your life, my wrist was about an eight. I was even having trouble untying my shoes because the pain and the swelling were already in to my pinky and ring finger. Have you ever had the type of bleed where it hurts to move it but it hurts even worse to rest it? That’s how it was feeling, and I knew I had to get factor. I got all of my supplies out and mixed it and was getting ready to stick myself. I did not want to put the tourniquet on my right are because I did not want to help along the swelling of my hand. I could not hold the butterfly needle with my right hand due to the pain. So I asked my mom to infuse me and she did a mighty fine job. My dad got me an ice pack and an Ace ™ wrap. That evening was one of the longest nights I have had in a while. I stayed up until about three thirty in the morning because I could not sleep because it just hurt and it kept me up. I finally fell asleep because I was just so exhausted.  I took some Tylenol™ and it did not help at all. I did not want to take anything else because I knew if I took anything else I would not be able to wake up at seven thirty in the morning for my eight thirty class. When I woke up in the morning it was awesome because my hand was not swollen and it did not hurt at all. I knew just because it was not painful it did not mean the bleed was one hundred percent resolved. So I factored before I left for class.

This is one example of a bleed that could have ended up bad but did not because of my quick thinking. We all have times where we do not want to infuse right away, or we just want to wait it out or we even trick our selves some time to think that it might heal its self. At least I have though that a couple times. We all know our bodies, and we all know when we should infuse. We will also learn from our mistakes. If I had waited till the morning to factor it could have swollen even more and I would have been in a lot more pain and I would have missed school. I have learned through out the years to pay attention to the warning signs that my body gives about bleed. When I get those warning signs I know that I need to factor promptly or I may be treating a bleed for a couple days or even weeks.