Bleeding Treatment
One of my first bleeding events happened when I was 14 years old and fell on my hip while skateboarding. About a week after the fall, the injury started getting worse and I was having trouble walking. I visited the emergency room after the injury. I could barely walk. The emergency room doctors were not familiar with hemophilia and did not see any broken bones on the x-ray and thought I would heal up. Unfortunately this did not happen, and my injury only got worse as I kept bleeding into my hip. After a few days of excruciating pain, my hematologist was able to get me infused with Factor VIII which stopped my bleeding; although a lot of damage was already done.
I am sharing information I wish I knew when I was fourteen. I am not a doctor and am not offering any medical advice. I am just sharing the protocols my Hematologist and I use address bleeding.
Treating a bleed early as possible is key. The earlier a bleed is treated, the faster it will heal. There will be less internal blood (bruising) that the body will have to clean up. Always visit your hematologist when there is a injury.
The RICE (rest, ice, compression, elevation) protocol is first used during a bleed. Although some people don’t support this method, I have found it has worked well for me.
Rest — Let your body heal, don’t overexert yourself while injured or you may re-risk injury. I have re-injured myself trying to get back to normal life/exercise before an injury is fully healed. Part of rest is eating and sleeping well. If light exercise can be done without effecting the injury, I believe this will be helpful as well. The lymphatic system depends on movement to function. A healthy lymphatic system will help remove out dead cells (bruises) from the injury. Exercise will also help with a better mind which is helpful during healing.
Ice — I use a 20–30 minutes of ice on and off the injury site for the first day or two. Once there is a clot, ice does not provide much benefit.
Compression — Compression can be accomplished using an ace bandage. Make sure the compress is not too tight or circulation can be cut off. I usually do not keep a compress at all times. Once the blood has clotted, usually there is only a compress when there will be movement with the injury site.
Elevation — I usually use pillow and furniture to elevate the injury site. Depending where your injury is, you might have to get creative with this.
For my bleeding levels and weight (~20% Factor VIII levels and ~150 lbs), I usually infuse 2000–3000 units of Factor VIII every 12 hours. The duration of this schedule depends on the severity of the injury; it can be anywhere from a couple days to a few weeks. A infusion plan will need to be discussed with your hematologist. When I was in high school, nurses taught me how to self infuse and I have been self infusing myself ever since then. You can discuss this with your Hematologist if this is an option for you.
Ibuprofen/Advil is an anti-coagulant so it is not advisable for Hemophiliacs. Acetaminophen/Tylonel is okay for Hemophiliacs. Please work with your doctor if you need pain relievers. Personally, most pain relievers did not help me much so I avoid taking these. Many pain relievers cause stress on your liver.
For me it is easy to get in a bad mindset while injured. Keeping a good mindset will help speed up the recovery process. Try to find something to keep you occupied while injured. I like to read, paint, and watch movies while I am injured. Just remember to keep pushing yourself to heal and stay positive. I tend to think of what I want to do as I heal, such as enjoying a day at the beach and getting back to hobbies I enjoy.
Once your bleed has clotted and your injury has healed to a certain point, physical therapy may be needed. Please work with your hematologist and physical therapist on what rehab you need. If the injury site has not been used after a few weeks, then range of motion and strength will decline. It is key to restore strength and range of motion to keep the area healthy and to prevent another injury.
Prevention is always better than treatment. Keeping in good physical shape will help prevent injuries. Strength and flexibility are key to saving yourself from falls and injuries. Although some injuries cannot be prevented, being in good physical shape will also help the healing process
Please share any comments you have on bleeding treatments.
