Living With Hemophilia: Challenges and Complications

2019-01-28 09:30:00
Tags: Complications,Hemophilia,Peer Exchange,SPT


As living with hemophilia can present many challenges and medical complications, both discussion participants consider the anecdotal value of Eric Mamos’ experience in this setting.

Transcript

Doris V. Quon, MD: I met you during the first month I was at the Orthopedic Institute for Children, which was back in 2003, and you were actually having complications of complications.
 
Eric Mamos: That’s right.
 
Doris V. Quon, MD: Do you remember all the other comorbidities that you were diagnosed with?
 
Eric Mamos: Do I remember it?
 
Doris V. Quon, MD: When you were diagnosed with them.
 
Eric Mamos: Such as the ITP [idiopathic thrombocytopenic purpura]?
 
Doris V. Quon, MD: Yes.
 
Eric Mamos: Yes, I remember the ITP. That was an interesting diagnosis. I was working at the time at City of Hope. I was sitting at my desk and my phone rang, I picked up the phone, and on the other line all I heard was someone telling me to hold for my other physician. I was thinking, “Wait, what?” There wasn’t even a hello. It was just, “Hold for the doctor.” I thought something was weird. He got on the phone and said “Eric, call an ambulance. You need to get to the hospital right away.” I was thinking to myself, “All right, he’s exaggerating.” I did end up driving myself to you, I think.
 
Doris V. Quon, MD: Yes.
 
Eric Mamos: I drove straight to orthopedic hospital.
 
Doris V. Quon, MD: I remember my first month of being at orthopedic hospital. Eric has severe hemophilia A, and he has a deficiency in factor VIII. His factor VIII level is less than 1%. He walked in and handed me results of laboratory work. His platelet count was 6000 and that made me sit up straight. That was my first meeting with Eric.
 
Eric Mamos: I asked you, “Well, what’s normal?”
 
Doris V. Quon, MD: 200,000.
 
Eric Mamos: I said, “Oh, sounds good.”
 
Doris V. Quon, MD: You had some complications in dealing with your hemophilia.
 
Eric Mamos: You wanted to hospitalize me, but I said no, didn’t I?
 
Doris V. Quon, MD: Yes, you did, but you went in anyway.
 
Eric Mamos: I did?
 
Doris V. Quon, MD: Yes, you did.
 
Eric Mamos: I guess I listened for once.
 
Doris V. Quon, MD: That was the only time you were actually in the hospital. Do you remember being in the hospital as a child?
 
Eric Mamos: Overnight, not really. I’ve had a few overnights, but just along the lines of removing my wisdom teeth. I was always in the hospital as a child, but not overnight or anything like that. Most of the time, it was long, long, long doctor appointments. These clinics would take 7 hours of the day, which was ridiculous, not like at the orthopedic hospital. Everything was good there.
 
Doris V. Quon, MD: But you were actually in the hospital for your head bleed for a few days, weren’t you? Do you remember that?
 
Eric Mamos: Yes, I was in the hospital. It was strange because that accident happened on September 2, and I started in a new school that year. I was going into 9th grade, and I was in a tiny, little private school up until then. I moved into 9th grade, which was in a public school. I had never been to public school before. Private school ended in 8th grade. I was going to be late because I was in the hospital for around 3 weeks. I remember my stay at the hospital. It was very traumatic, mostly because of other kids around me. They were of a different mentality, and I guess they were used to being sick. I think it was a very scary situation for some of the kids, so there was a lot of crying. One kid in particular would yell in Spanish in the middle of the night, and it was startling.
 
When I was finally discharged, I didn’t have any hair because they had to shave my head. I had to go to this new school in a baseball cap, which was not even allowed. Not only was I this total fish out of water, but I was in a school where I had never been. My graduating 8th grade class was 8 or 9 kids. I also had to wear a cap and be different than everybody else. That was probably the hardest part of that incident, readjusting back to this new school, new people, and new kids. I didn’t have any friends at this new school either. That was probably one of the toughest times in my life, but I met my wife shortly thereafter, so everything became good.
 
Doris V. Quon, MD: It sounded like there was a happy ending to a very traumatic experience that you had.
 
Eric Mamos: Yes. I met my wife, Lisa, in 9th grade. Because I came late to school, the only seat left in English class was the front row right next to the teacher’s desk. Lisa was sitting 2 rows behind me. I remember that the girl right behind me, her name sounded like “Jew.” I’m such a corny guy, especially back then, right? She introduced herself and I said, “Oh, I’m Jewish, too.” Lisa was the one who snickered behind her. We became fast friends, then a year later we started dating, and we’ve been together now for 27 years, or something like that.
 
Doris V. Quon, MD: Yes, and 3 kids later.
 
Eric Mamos: And 3 kids, yes.