Bleeding disorders are fairly rare and can be very complicated. The general
physician may not be very familiar on how to look after these patients and
that's why we exist, to provide that specialized care.
Simplistically speaking, we're there to look after the patient so they don't
end up in a hospital. We want to keep them in school, keep them at work, and be
accessible. When a patient comes for an appointment we have been in contact with
the patient getting their appointments set up, making sure they've got all the
labs that they need to have drawn. If they need to see any other services
while they are here I make sure that their appointments are coordinated. When they
come up to the hemophilia Center they will be roomed by our clinical assistant
staff and they'll get vital signs, so height and weight and blood pressure.
Nursing will go in first. An R.N. care
coordinator in the hemophilia Center is responsible for all aspects of
coordinating patient with bleeding disorders care from regular check-ups to
managing surgeries. Our Center has three nurse coordinators: One works with the
adult male population, one with the adult female population, and then one works
with the pediatric population. We always have a social worker available in the
Mayo Clinic hemophilia Center as well. So if you're having insurance concerns
medication cost concerns or any social concerns she can tell you what resources
are available. What I do is kind of look at what their coping mechanisms are, how
they're handling their stress and their challenges in regards to their bleeding
disorder and I'm able to connect them with resources and services and provide
education to them that will help them in managing their care throughout their
life.
At Mayo, we have many specialties. Those services are available for us to refer
our patients to. We set up appointments with the right subspecialty. We get them
to the right surgeon or the right medical physician. We're such an
integrated team both in the clinic and in the hospital. Everyone is at the table
together. We realized at Mayo Clinic, that it's a lifelong disease with
transitions of care that are very important. In our Center, we're a combined
adult and pediatric hemophilia center. We have pediatricians and adult
hematologists that look after patients. We see patients across the lifespan so
they're not having to transition to a different social worker or nurse or
doctor. That patient's going to have the same team of nurses when they're two years
old or when they're 75 years old. It really provides good continuity. And
we're always providing education to them that starts at the time of diagnosis
teaching them about their bleeding disorder as they progress through life
stages. We work directly with the school nurse as well as any other staff at the
school to educate them about hemophilia because it is a rare disease. By
providing that piece of education, parents can feel maybe a little more at
ease about sending their child to school knowing that they're going to be safe
knowing that there is a plan in place and knowing that staff at the school are
on the same page as a team working with our hemophilia center.
The big advantage of coming to Mayo Clinic is we have our coagulation
lab right here. Not all centers will have that availability. We can perform all of
our tests on-site to get the results back as quick as possible. Our lab is
fully integrated in the hemophilia center practice. That combination with
expertise covering both the laboratory and the clinical practice is extremely
unique and highly important for our mission. There's a huge interplay between
the lab and the clinical side, especially in coagulation. You need to have a good
lab because otherwise you can't interpret what the data is coming out.
We're able to efficiently order blood tests so that we can monitor patients'
response to the factor concentrates that we are giving them and provided in a
cost-effective manner. That's the whole goal of our existence.
Life expectancy for somebody with hemophilia now is normal. You can lead
a full rich life. Things are going to be ok. Things are not what you planned and
things maybe are going to be a little bit different, but we're going to help you
move through that and connect you with what you need and we're here to
support you and help you along the way. We give management strategies and
medications if need be. That's regaining control. And like 'look I
can work or I can go to school or I am able to make social arrangements.' I think
the most important thing is for patients with the bleeding disorders to have
contact that they can count on and have confidence in that someone is going to
be there to answer their questions. The hemophilia center is that contact for
our patients and they are very appreciative of that.