James Munn, RN-BC, BS, BSN, MS, is program nurse coordinator at the Hemophilia and Coagulation Disorders Program at Michigan Medicine in Ann Arbor, where he has worked since 1996. In addition to caring for pediatric and adult patients at the clinic, Munn has served as chair, vice chair and regional representative for the National Hemophilia Foundation’s (NHF) Nursing Working Group and as the US representative, vice chair and chair of the World Federation of Hemophilia Nurses Committee. He is a board member of Partners in Bleeding Disorders Education, which provides comprehensive, broad-based education for providers from a variety of disciplines throughout North America’s HTC network. Munn also co-founded Adult Fellowship for Integrating Responsible Mentors (AFFIRM) with retired social worker Edward Kuebler, MSW. AFFIRM is a two-year international advocacy and leadership development program to enhance participants’ leadership and advocacy skills to improve care, programs and treatment in their communities.
Originally I was thinking about going into medicine. But I got married, had children right away and realized that that was not going to happen.
While I was a student, I started working in the neonatal intensive care unit, as a stockkeeper. I realized that what was happening in the hospital is not what you see on TV. The doctors are not the ones holding the patients’ hands and sitting with them overnight when a kid’s just had surgery. I realized that nurses, especially in the neonatal intensive care environment, essentially run the show. So I thought, “You know what? I think this is something that I can do.” Not because I wanted to run the show, but just because my expectation was more hands-on.
So I went to nursing school while I had young kids and was freshly married and ended up getting my bachelor’s in nursing from University of Michigan and have been working there ever since.
JOINING THE HTC
Near the end of 1995, my youngest daughter was getting ready to start kindergarten, and I had been working every other weekend doing day/night rotations. I felt I really needed to try and find a job that was Monday-through-Friday, which was somewhat difficult to do because I’d only been a nurse at the institution since 1989.
I saw a role for a nurse in the hemophilia clinic. It’s odd because my wife’s sister and her husband met at hemophilia camp. And I used to work on the floor with the nurse who was the nurse coordinator for the hemophilia treatment center. Back in the early to mid-’80s, it was only a part-time job, and she supplemented her 40 hours by working on our floor. I remember her being one of those nurses that was so thorough. She had this approach to the patients that amazed me. It was funny because she said, “Well, maybe you’ll be lucky one of these days and be able to be a hemophilia nurse.” Well, fast forward close to 11 years later, lo and behold this was available on the board. So I popped on it and ended up getting hired into the position and started in January of 1996.
When I first started, it was not unusual for our pediatric patients to have joint issues already. That is not happening anymore. And now we have a nonfactor concentrate, and still others in research, that because of the mechanism of action for those medications, I think is going to revolutionize care for patients with not only hemophilia, but other bleeding disorders as well.
It’s been amazing, because for the longest period of time the only thing that essentially changed was potentially the way the molecule was put together or a different manufacturing cell line. Recombinant went from first generation to second generation to third generation. And we have extended half-life products. But those things were all sort of just changes to the same field.
Now we are actually plowing a whole new field with the nonfactor therapies, and gene therapy is really hot. Our institution is doing a lot of that right now. It’s something that we’re going to be watching very closely, hopefully bringing it to market within the next year or so, at least for potentially some of the hemophilia A patients.
WHAT HASN'T CHANGED
Families that come now, especially ones who get diagnosed with severe hemophilia, we’re pretty good at just welcoming them to the family. We feel that hemophilia is not a curse. It’s not a disease. It is something that happens, just because of the way genes mutate. These new families are completely wide-eyed. But what we have to offer them now, and what they can see, is so different. And with the new therapies, we can start patients right away onto product and not have to wait for them to potentially develop a bleed. The whole goal is to prevent bleeds altogether. I feel really happy to share with new families what we have to offer and just explain things to them, make them feel comfortable.
A BRIGHT FUTURE
I feel blessed to have the chance to meet people all the time who do more for me than I know I can ever do for them. That’s how I feel about all of my patients and families. I see them rise to levels that I don’t know if I could do it if I were affected with hemophilia or a bleeding disorder. It’s just amazing. I tell my patients now that are getting ready for high school, “I’m hoping by the time you graduate, when they ask you to write the 100 things about yourself, that hemophilia is like 98, 99, 100 or not on the list. Because you will be involved with so many other things and you’re going to be integrated instead of what happened previously, which was a lot of social isolation, peers being fearful of being friends with someone who might have a bleeding disorder.”
I’m glad I’m going to be able to do this for a few more years, because it’s been transformative to see the care and the changes that have occurred in the short time I’ve been doing this. I have colleagues that have been doing this much, much longer. One of them for over 40 years. And I just feel like I’m part of a group that if I have a question that I need an answer to, they are a phone call or an email message away. And that’s what I love so much, especially about our hemophilia nursing community.