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Tuesday, November 25, 2008

Blood Clot

This was the best slide show I saw at the national conference. Dr. Roshni Klkarni gave a fabulous session on how blood clots and what a diagnois means to us. Here is the website where you can view the animations:

Insurance Meeting NHF Conference

Sally McCarty; Beth Sufian, JD; David Linney (speakers at this session)

This session was kind of depressing, but invigorating at the same. Depressing because it's hard to think that most of the hemophilia community is still struggling to get coverage. Invigorationg because it fired me up to go talk to my legislators!

Here are a couple things I did learn:

Know the key terms when dealing with insurance. Do you know what COBRA is? What is your "premium"? Will adding your son or daughter raise your office premiums? Does your insurance policy cover what you need?

NHF is starting a new program called Insurance 360. This will deal with insurance reimbursement issues. Currently you can call the HANDI number. 1-800-42HANDI

If you have any legal questions, you can call the number below.
Bleeding Disorders Legal Hotline - call Toll Free 1-800-520-6154- Funded by a Grant from Baxter and Endorsed by the National Hemophilia Foundation

Washington Days will be February 25 and 26. "Join NHF as they meet with your legislators to get support for raising lifetime insurance caps and other key issues."

**My husband just got group insurance for his small business. We found out after the fact that if we add Trenton on, we would not be able to use our wonderful home helath care company ARJ. We would have to get Trenton's factor from the insurance company! Blaa blaa blaa So, it looks like I'll be going back to work soon!

Wednesday, November 19, 2008


This was forwarded to me. It is a new program by CSL Behring.

CSL Behring launches GamesFacesTM program at National Hemophilia Foundation annual meeting Interactive online initiative provides six months of physical challenges for patients with hemophilia A Denver, CO-November 19, 2008-CSL

Behring announced today it launched the first challenge of GamesFacesTM, a family-oriented online initiative for patients with hemophilia A, at the 60th Annual Meeting of the National Hemophilia Foundation (NHF). GameFaces is designed to encourage real-life physical activity through a series of three customized challenges based on the individual's age, disease severity and current level of physical activity. Participants can now log on to the program website at, create their GameFaces character and begin the first challenge, which will run from today through January 10, 2009. CSL Behring, the providers of the hemophilia treatment Helixate® FS (Antihemophilic Factor, Recombinant), developed GameFaces to inspire hemophilia A patients to participate in physical activities and also to allow them to feel connected to other patients with this serious bleeding disorder. At the conclusion of each challenge period, those who have completed the challenge will be entered into a drawing to win a Nintendo® Wii(tm) game console. Nintendo Wii has been recognized as the next generation of video games and is known to inspire physical activity through games that require movement. "We are pleased to officially unveil GameFaces to the hemophilia community at the NHF's annual meeting, where the theme this year is 'Reaching New Heights'," said Garrett E. Bergman, M.D., Senior Director, Medical Affairs, U.S. Commercial Operations at CSL Behring. "GamesFaces promotes the kind of daily physical activity that will empower hemophilia A patients, from those with a mild form of the condition to those with the most severe form, to reach new heights in developing a healthy and safe lifestyle." "We appreciate CSL Behring's commitment to our children and their specific needs," said Rhonda Boni-Burden, mother of Alex, a 14-year-old boy with severe hemophilia A. "A program like GameFaces enables our children to build their self-esteem and helps manage these bleeding disorders, which is important to our families' quality of life." The program's physical challenges include both outdoor and indoor activities, which patients can complete on their own or with family and friends. The second and third challenges will occur in 2009 from January 10 through March 7 and from March 7 through May 2, respectively. Challenges are designed to be completed over a one-month timeframe during the challenge interval. Participants can track their progress by logging on to the program's website at Children under 18 must have a parent's permission to participate. About HemophiliaHemophilia is an inherited bleeding disorder characterized by prolonged or spontaneous bleeding, especially into the muscles, joints, or internal organs. About 15,000 Americans have hemophilia. The disease is caused by deficient or defective blood coagulation proteins known as factor VIII or IX. The most common form of the disease is hemophilia A, or classic hemophilia, in which the clotting factor VIII is either deficient or defective. Hemophilia B is characterized by deficient or defective factor IX.

For more information, visit ### Contact:Sheila A. Burke, Director, Communications & Public Relations Worldwide Commercial Operations CSL Behring610-878-4209 (o)484-919-2618 (c)

Tuesday, November 18, 2008


Patient Services Items Programs
This is a national, non-profit organization that provides help to people in the bleeding disorders community. (They help other families with chronic conditions as well.) If you have insurance questions, or need help paying your monthly premiums - call them! If you need knee pads, elbow pads, a cryo-cuff - call them! There is a request form that you need to fill out. "PSI will consider your request independently, based upon a consensus list and need." (from their brochure)

National Hemophilia Foundation - Denver, CO

Hello All-
I'm back from a great conference in Denver. I spent three full days learning as much as possible about hemophilia. I have sooo much to share. I will add posts about the different sessions I attended over the next few days. If anyone has questions, throw them out there! I don't know that I can answer them all, but I'm sure I can help you find the answer.

Thursday, October 30, 2008

Good Websites

Here are a few of my new favorite web pages! National Hemophilia Association Midwest Hemophilia Association Cool pants that have pads built into the knees! Helmets that don't make your kid look silly!

Family Fun Fair

It has been a while now, but I wanted to write about MHA's Family Fun Fair. Every September, the Midwest Hemophilia Association puts on the Family Fun Fair. I have attended almost every year. I would suggest you attend if you have an event like this in your area. The last two years I have gained a wealth of knowledge and been able to network with many other families. The highlight of this year's event for me was an open discussion with athletes. There was a professional baseball player and weightlifter. To hear what they have been able to accomplish was great for me! My in-laws were able to attend the event as well. I think it was good for them to hear that we did not need to keep Trenton in a room full of bubble wrap! I remember going to the HTC right after Trenton was born and them telling us that Trenton should not weightlift competitively. (My husband is very much into weightlifting!) The young man (he was my age) at the conference had been on the Olympic weightlifting team and had traveled all over the world. He also was the kicker for his high school football team. I know most doctors would not sign off on the football, but it was good to see that it could be done. I am excited to watch Trenton grow and to see what activities he will want to get involved in when he is older!

No Circumsion

Well, we changed our mind. After temporarily switching HTC's, we decided not to have Trenton circumcised. My husband and I went back and forth so much. In the end we did not see the point in putting him through the trauma. My dad ended up being in the hospital that week due to cancer, so I'm glad we didn't have it done. I have relatives that are not circumcised, so Trenton won't be in the only one in the family! (I hope my son doesn't read this in 15 years and die of embarrassment! ha ha)

Tuesday, September 2, 2008

Ouch! - Part 2

Grandma Jean and I loaded up the car and headed to Kansas City last week. Trenton had an appointment at the treatment center at Children's Mercy to discuss his circumcision. We started the appointment getting weighed and measured. He was laughing so loud at the bald nurse who took his blood pressure. I was thinking that this appointment wouldn't be bad after all. One of the nurses informed me right away that it might be difficult to find a vein in Trenton's chunky arms! Sure enough, when the nurses came in to draw blood they couldn't find anything. I had planned on staying in the room with him. I think I'm a pretty tough gal and I thought Trenton might be more calm if I was there. The nurses informed me that they would have to stick him in his head! I think I almost passed out at the thought. I grabbed Grandma Jean and we headed to the hall. They had to put a rubber band around his head to make the vein pop up. . . and then we heard the screaming. I felt like they were in the room with Trenton forever, but I know it was less than 15 minutes. For the first 5 minutes I was tough and strong, but then I couldn't take it any more and had to walk down a different hallway. Trenton has a good set of lungs, so I had to walk very far to not be able to hear him. After it was over Trenton ate and went to sleep. I was thinking if I can't handle them drawing blood, could I handle surgery? We talked to the doctor for a long time about the pros and cons. Here is the list I came up with. The cons: 1. It is a cosmetic procedure. There is no real medical benefit in having it done. 2. The day of surgery will be the day from hell! Trenton can't eat until after the surgery. So, my 20 lb. child who likes to eat all the time will go 6-12 hours with only some watered down juice. 3. Read the part again about getting blood drawn! The pros: 1. It's only going to happen once. 2. He will look like all of his friends. My 8 year old cousin has already been asking questions to his grandfather. A kid at school asked him in the bathroom why he "looked different".
After much discussion with my husband, we have decided to have him circumcised. I know some people will not agree with our decision, but there are many people who do. We have to do what we think will be best for our son. I'll keep you updated on the process!

Wednesday, August 20, 2008

Circumcision - Ouch!

We have made the tough decision to have Trenton circumcised this October. We could not do this at birth because we didn't know if he had hemophilia. If anybody has had experience with circumcision at six months, please let me know. I'm a little nervous! We have our pre-circ appointment next week, so I will let you know how it goes.

Hemophilia Carrier

This is an article I wrote for the Midwest Hemophilia Association.

It was the day before I left for Wilderness Camp last August. I was excited and even a little nervous. I thought I had butterflies in my stomach, but I would soon find out there was something else fluttering in me. That afternoon, my husband and I were overjoyed to find out that we were expecting our first baby! As I watched the kids at camp that week I knew that there was a chance that my child would be at camp in 8 years. I first found out about hemophilia when I was seven. I attended the very first MHA Wilderness Camp with my mom, dad and brother. From the beginning my dad made sure that I understood what hemophilia was and why I was a carrier. Now that I was pregnant though, I wanted to know more! There is not much information out there for carriers, so I have compiled a top five list of things you should know if you are a carrier who is expecting. I’m not a doctor or a nurse. These are just my personal opinions and things that I learned.1. Talk to your spouse or boyfriend. Within a week of meeting my husband Brian, we had discussed that I was a carrier. I tried to teach him as much as I could about hemophilia. Once I was pregnant he knew what to expect if Trenton did in fact have hemophilia. Even with this knowledge I know it was not easy for Brian to find out that his son would not be able to be a Marine. I do know that he appreciated knowing ahead of time all of the great things he COULD do after he was born. 2. Talk to your HTC.I was pretty worried about childbirth and I wanted to make sure everything was going to go as smoothly as possible. The week before I was due I talked to both Judy Kauffman (Kansas City) and Lisa Holm (Columbia). They both gave me excellent advice and also reassured me that I would be fine. 3. Meet with your anesthesiologist. I only have one regret in this process. I did not talk to the anesthesiologist ahead of time. I had planned on having an epidural. Both HTC’s had recommended having my factor levels tested during child birth because of the risk of hemorrhaging afterwards and also to see if you are able to have an epidural. My doctor and the hematologist at the hospital I delivered at did not think this was necessary. The anesthesiologist however would not give me the epidural until she knew what my factor levels were. I had taken Amicar when my wisdom teeth were pulled and she was concerned about this. So, in the middle of child birth they checked my factor levels and then gave me the epidural. If I had met with the anesthesiologist ahead of time, she would have had my levels tested. I would have had the epidural almost two hours earlier and my husband and I would have been much happier people. 4. Don’t get frustrated when the cord blood clots.Because Trenton had a 50/50 chance of having hemophilia, they needed to test the cord blood. It clotted three different times. My dad and I initially thought we were dealing with incompetent nurses and doctors. I was getting really frustrated until I talked to Judy. She explained that this was very common. They ended up having to stick Trenton days after he was born. The day we got home from the hospital we found out that he had hemophilia. 5. Be an advocate for your child.Judy talked about this at the Family Fun Fair last year. It stuck with me and I’m glad it did. We knew that Trenton was to have NO sticks until after we found out if he had hemophilia. Right away a nurse tried to take him to the nursery for shots. Brian and I quickly explained that Trenton might have hemophilia. She left for a minute and then came back with post-it-notes that said “No Sticks Please”. She placed them all over his portable crib. I think she would have caught it if we hadn’t said anything, but it doesn’t hurt to speak up for your child!
Trenton is 4 months old now and weighs almost 100 lbs. (Not really, but he seems that heavy!) We are going to start facing new challenges soon like crawling. We have survived two rounds of shots with little to no bruising. In October Trenton will have some minor surgery. That will be our first experience with infusions. If you are a new mom or an expecting mom, please don’t hesitate to e-mail me with any questions.