Surgical planning is an absolute must when you have hemophilia

Several years ago, when I was checking some incisions about a week after I had a surgical procedure, I discovered gobs of red, gelatinous goo. No scabs had formed over the incisions like they were supposed to. I have hemophilia, so thankfully, I made it through the surgery safely, but the incisions oozed for weeks.

Later, doctors found internal adhesions (scar-like tissue), likely caused by internal bleeding after surgery. At the time, I didn’t have a plan to address potential bleeding risks during surgery due to hemophilia.

Mild hemophilia isn’t often well understood by the medical community. As a result, surgeons can inadvertently minimize the risks. Some believe that if a surgery is not that bloody or if they have operated on people with blood thinners in the past, then the surgery is safe for someone with hemophilia. This can be dangerous.

As a woman with hemophilia, I frequently hear these types of stories. Members of our community are often told they’ll be OK without a plan for surgery. It makes me wonder if this only happens to women. Are men with hemophilia told that they don’t need a surgery plan to keep them safe?

I can’t emphasize enough the critical importance of looping in a hemophilia treatment center (HTC) prior to any type of surgical procedure. Whether it’s a major surgery or a mole removal, a plan to control bleeding is paramount. All. The. Time.

Always include an experienced hematologist in surgery planning

Now I know to run like hell from any provider who doesn’t understand the importance of addressing hemophilia as part of planning for a surgery. This doesn’t mean that the surgeon creates the plan. Ideally, a good HTC or hematologist will work to create a plan to control bleeding so that the surgeon can focus fully on their job. While the surgeon is aware and may help ensure the plan is followed, the responsibility is given to those who understand the nuances of bleeding disorders well.

As I’ve mentioned in recent columns, I’m currently working through medical issues that will require surgery. There are a limited number of surgeons across the U.S. who regularly perform the surgery I need, five of whom are well-known and respected. Five. As I dug deeper, I learned that only three of the five regularly operate in hospitals that have the staff and resources to address hemophilia as part of the surgical equation.

When most people need surgery, they reach out first to the surgeon. This crazy experience has me changing the way I assess the best surgery fit. The first thing I am doing is researching HTCs near the surgeons and whether they can coordinate with the hospital on care. After understanding that a strong hemophilia plan can be implemented, I will reach out to the surgeon to see if they are a good fit.

This strategy seems to be working well for me. It has allowed me to eliminate options far away from the support that would be necessary if a bleeding incident occurs. I can then focus on more viable options for care, saving everyone time and effort.

Questions I ask while planning surgery

When I think about a plan for surgery, here are some of the questions I would like answered:

• How will my hematology team coordinate and communicate with the surgeon and surgery team regarding a hemophilia plan for my surgery?
• What is the factor VIII replacement plan for the surgery itself? Will you be recommending the use of bolus doses (dosing the factor higher, usually to 100% or more, and then dosing again when the FVIII is low and cannot provide adequate coverage to control bleeding)? Perhaps you plan to use continuous infusion? (This brings FVIII up to a desired level and works to maintain that level consistently through surgery and part of the healing time.)
• What is the plan in the unlikely event of an unexpected bleeding emergency during surgery?
• Will I need to be admitted the night before surgery to get FVIII before surgery?
• How many days in a row will I need to take FVIII to prevent bleeding?
• What additional products, such as antifibrinolytics, might be used to promote healing?
• Will I need to stay in the hospital longer than a “normal” patient, due to the fact I have hemophilia?
• What is the treatment plan post-hospital discharge?
• Will I need a midline or peripherally inserted central catheter (PICC) line to help with factor administration post-surgery?
• Will home health/nursing services be provided?
• What signs should I look for to indicate that I may have a bleeding issue after surgery?
• Who do I call if a bleeding incident occurs?

The more detailed the plan, the more questions that can be answered prior to a procedure, and the more I set myself up for success during recovery. Unfortunately, I have learned the value of a comprehensive plan the hard way, once bleeding for more than 30 days post-surgery. I am looking forward to having a more positive experience this time around.

What questions do you ask your team when you are preparing for surgery? Please share in the comments below. 

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.