Comprehensive clinic

Abbey and I had our first comprehensive clinic visit with our hematologist, Dr. Tarantino. He comes to Macomb once a year so we will visit him then to monitor our disorder. Though we are Factor X deficient, our deficiency is mild, and we need only be concerned about surgeries or traumas. We are very fortunate that we don't really have to worry about internal bleeding or joint bleeds or regular transfusions.
I did not know that we will see several people at our comprehensive clinics. We saw a physical therapist who checked our joints and muscle tone. We both have good reflexes and tone. He told me that because I have a family history of arthritis and osteoporosis and that I have likely suffered the fracture of my pelvic bone most likely from the impact of running, that I probably shouldn't be a runner. That does not make me overly happy.
We saw a social worker who talked to both of us about the impact of our diagnosis and Isabelle's death all at the same time. She was a lovely woman, and I loved that she talked to Abbey like a normal person and didn't patronize her or talk to her like she was a baby.
We saw a nurse who took our vitals, and then a nurse practitioner who gave us prescriptions. Amicar which we will keep on hand in case Abbey or I need it. It isn't a blood clotting agent, but it is a drug that helps maintain the stability of our blood clots once they form. She said that it's not a common drug that pharmacies carry, so it will take a while to be filled and it's best to have it on hand so you can begin treatment immediately. She also gave me prescription for Lysteda. It is a drug that was more commonly used in the seventies in liquid form and then the company that produced it went bankrupt and it wasn't produced in the United States until recently when it was reapproved by the FDA for women with bleeding disorders. We suffer excruciatingly long and heavy periods. This medicine will make them lighter and much easier to manage. The nurse said that the patients they have prescribed the medicine to said that it's made a huge difference in their life. I can't wait. I have at least 2 days of very very heavy bleeding that interfere with everything.
We also saw a dentist who did a brief exam of both of us. He made Abbey cry when we talked to her about sucking her fingers and how that was making a space in her teeth. She was furious. I have to say that he probably doesn't have to deal with children often and for very good reason.
Then we saw the always lovely Dr. Tarantino. He is so kind and caring. He talked to me about the prescriptions we were getting and about all the things I have learned in the last 9 months and what he knows as well. We talked about the National Hemophilia Foundation and their conference. This years conference is being held in Chicago, and he recommended I go, that it's really geared towards families who live with bleeding disorders. We also talked about the blood drive. It's a shame we'll only see him once a year, but considering what we might see him for. I'm fine with that.
Abbey is more symptomatic than I am. She has begun having nosebleeds, and although they are not severe, I know that it's only a matter of time before they are. When I was in junior high, I would have at least one severe nosebleed a week that would take upwards of 2 hours to stop and they were always very heavy. I remember wondering if it was possible to bleed to death from a nosebleed. I also remember that since I still hadn't gotten my first period, I wondered if my body was trying to compensate. My nose has been cauterized several times, and I haven't had a nosebleed in years.
So our first comprehensive clinic was uneventful. Hopefully we have many more like that.