Being Proactive About Treatment
I think one of the biggest challenges those dealing with hemophilia face is needing care from people who don’t know what it is and how to treat it. Once, we went to the hospital when I thought Alex might have a stomach problem or an internal injury. I was shocked when the trauma doctor in the ER said, “Well, is his hemophilia active today?”
Unfortunately, it’s all too common to find that the staff in an ER really doesn’t know what you’re talking about. It’s not their fault. Not that many people have hemophilia, so they’re not going to be up on it. I understand that. So, it’s important to be proactive and remember that you are in charge. Here are some of the things I do to help make things easier and give me some peace of mind.
- Choose where you go for treatment and make sure you have all the information you need about your child’s treatment
If possible, we go to Oregon Health Sciences (our treatment center). It’s not as close as our local hospital, but, in the long-run, the 20-minute drive is worth it. Actually, it can even be faster because I don’t have to educate the staff once I get there.
- Always be prepared for an emergency
We have a “To Go Bag” with everything we need for an infusion, including factor and needles. This is a huge help because hospitals may not carry factor, or if they do, they may not have the brand you use or may not have enough. Also, getting factor from a hospital pharmacy can take a lot of time, and hospitals don’t always have butterfly needles. I’ve found that even something like changing the needle used can add to Alex’s stress in a time of crisis. Additionally, this saves money because the factor I purchase in quantity costs less than buying a small amount at the hospital.
- Another key tool is Alex’s patient profile
Among other things, this tells the staff how much factor to give for certain types of injuries. It really helps in the gray questions area and gives the ER or first response staff the information they need for immediate treatment.
- When I go to the ER, the first thing I say is, “My son is a hemophiliac, factor VIII-deficient less than 1%. [And if necessary] This is a bleeding disorder that needs immediate attention.”
When I see the nurse, I repeat the same information and explain that I have a treatment plan from the HTC and all the necessary items for an infusion. I also ask if they have had experience with hemophilia. If they haven’t, I give them the “nickel tour.” If Alex needs a procedure or test, I get a full explanation of what they are going to do and ask all the questions I can think of. I make sure that what they plan to do will not be compounded by the hemophilia. If necessary, I call our HTC to discuss it with them. If you are unsure or don’t think something is a good idea, it’s always wise to check with the specialists.
Since Alex’s first visit to the ER, I have become much more forceful in making sure everyone knows the facts. However, Alex’s biggest challenge in life is going to be making sure he gets proper care from uneducated people in the medical field in an emergency situation.
